[House Hearing, 113 Congress]
[From the U.S. Government Publishing Office]
DOES HIPAA HELP OR HINDER PATIENT CARE AND PUBLIC SAFETY?
=======================================================================
HEARING
BEFORE THE
SUBCOMMITTEE ON OVERSIGHT AND INVESTIGATIONS
OF THE
COMMITTEE ON ENERGY AND COMMERCE
HOUSE OF REPRESENTATIVES
ONE HUNDRED THIRTEENTH CONGRESS
FIRST SESSION
__________
APRIL 26, 2013
__________
Serial No. 113-37
Printed for the use of the Committee on Energy and Commerce
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COMMITTEE ON ENERGY AND COMMERCE
FRED UPTON, Michigan
Chairman
RALPH M. HALL, Texas HENRY A. WAXMAN, California
JOE BARTON, Texas Ranking Member
Chairman Emeritus JOHN D. DINGELL, Michigan
ED WHITFIELD, Kentucky Chairman Emeritus
JOHN SHIMKUS, Illinois EDWARD J. MARKEY, Massachusetts
JOSEPH R. PITTS, Pennsylvania FRANK PALLONE, Jr., New Jersey
GREG WALDEN, Oregon BOBBY L. RUSH, Illinois
LEE TERRY, Nebraska ANNA G. ESHOO, California
MIKE ROGERS, Michigan ELIOT L. ENGEL, New York
TIM MURPHY, Pennsylvania GENE GREEN, Texas
MICHAEL C. BURGESS, Texas DIANA DeGETTE, Colorado
MARSHA BLACKBURN, Tennessee LOIS CAPPS, California
Vice Chairman MICHAEL F. DOYLE, Pennsylvania
PHIL GINGREY, Georgia JANICE D. SCHAKOWSKY, Illinois
STEVE SCALISE, Louisiana JIM MATHESON, Utah
ROBERT E. LATTA, Ohio G.K. BUTTERFIELD, North Carolina
CATHY McMORRIS RODGERS, Washington JOHN BARROW, Georgia
GREGG HARPER, Mississippi DORIS O. MATSUI, California
LEONARD LANCE, New Jersey DONNA M. CHRISTENSEN, Virgin
BILL CASSIDY, Louisiana Islands
BRETT GUTHRIE, Kentucky KATHY CASTOR, Florida
PETE OLSON, Texas JOHN P. SARBANES, Maryland
DAVID B. McKINLEY, West Virginia JERRY McNERNEY, California
CORY GARDNER, Colorado BRUCE L. BRALEY, Iowa
MIKE POMPEO, Kansas PETER WELCH, Vermont
ADAM KINZINGER, Illinois BEN RAY LUJAN, New Mexico
H. MORGAN GRIFFITH, Virginia PAUL TONKO, New York
GUS M. BILIRAKIS, Florida
BILL JOHNSON, Missouri
BILLY LONG, Missouri
RENEE L. ELLMERS, North Carolina
Subcommittee on Oversight and Investigations
TIM MURPHY, Pennsylvania
Chairman
MICHAEL C. BURGESS, Texas DIANA DeGETTE, Colorado
Vice Chairman Ranking Member
MARSHA BLACKBURN, Tennessee BRUCE L. BRALEY, Iowa
PHIL GINGREY, Georgia BEN RAY LUJAN, New Mexico
STEVE SCALISE, Louisiana EDWARD J. MARKEY, Massachusetts
GREGG HARPER, Mississippi JANICE D. SCHAKOWSKY, Illinois
PETE OLSON, Texas G.K. BUTTERFIELD, North Carolina
CORY GARDNER, Colorado KATHY CASTOR, Florida
H. MORGAN GRIFFITH, Virginia PETER WELCH, Vermont
BILL JOHNSON, Ohio PAUL TONKO, New York
BILLY LONG, Missouri GENE GREEN, Texas
RENEE L. ELLMERS, North Carolina JOHN D. DINGELL, Michigan
JOE BARTON, Texas HENRY A. WAXMAN, California (ex
FRED UPTON, Michigan (ex officio) officio)
C O N T E N T S
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Page
Hon. Tim Murphy, a Representative in Congress from the
Commonwealth of Pennsylvania, opening statement................ 1
Prepared statement........................................... 115
Hon. Steve Scalise, a Representative in Congress from the State
of Louisiana, prepared statement............................... 117
Witnesses
Leon Rodriguez, Director, Office for Civil Rights, Department of
Health and Human Services...................................... 3
Prepared statement........................................... 5
Answers to submitted questions............................... 118
Mark A. Rothstein, Herbert F. Boehl Chair of Law and Medicine,
Director, Institute for Bioethics, Health Policy, and Law,
University of Louisville School of Medicine.................... 13
Prepared statement........................................... 15
Answers to submitted questions............................... 131
Richard Martini, M.D., Professor of Pediatrics and Psychiatry,
University of Utah School of Medicine, Chair, Department of
Psychiatry and Behavioral Health, Primary Children's Medical
Center......................................................... 37
Prepared statement........................................... 39
Answers to submitted questions............................... 140
Carol Levine, Director, Families and Health Care Project, United
Hospital Fund.................................................. 43
Prepared statement........................................... 45
Gregg Wolfe, Father of a son with mental illness and substance
abuse.......................................................... 58
Prepared statement........................................... 62
Edward Kelley, Father of a son with mental illness............... 70
Prepared statement........................................... 73
Jan Thomas, Family impacted by HIPAA............................. 84
Prepared statement........................................... 86
Deven McGraw, Director of the Health Privacy Project, Center for
Democracy and Technology....................................... 88
Prepared statement........................................... 90
Answers to submitted questions............................... 143
DOES HIPAA HELP OR HINDER PATIENT CARE AND PUBLIC SAFETY?
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FRIDAY, APRIL 26, 2013
House of Representatives,
Subcommittee on Oversight and Investigations,
Committee on Energy and Commerce,
Washington, DC.
The subcommittee met, pursuant to call, at 9:02 a.m., in
room 2123 of the Rayburn House Office Building, Hon. Tim Murphy
(chairman of the subcommittee) presiding.
Members present: Representatives Murphy, Gingrey, Scalise,
Harper, Olson, Gardner, Griffith, Johnson, Long, Ellmers,
Cassidy, DeGette, Braley, Schakowsky, Butterfield, Tonko, and
Green.
Staff present: Carl Anderson, Counsel, Oversight; Mike
Bloomquist, General Counsel; Sean Bonyun, Communications
Director; Matt Bravo, Professional Staff Member; Karen
Christian, Chief Counsel, Oversight; Andy Duberstein, Deputy
Press Secretary; Brad Grantz, Policy Coordinator, Oversight and
Investigation; Debbee Hancock, Press Secretary; Brittany
Havens, Legislative Clerk; Robert Horne, Professional Staff
Member, Health; Peter Kielty, Deputy General Counsel; Andrew
Powaleny, Deputy Press Secretary; Alan Slobodin, Deputy Chief
Counsel, Oversight; Sam Spector, Counsel, Oversight; Tom
Wilbur, Digital Media Advisor; Jean Woodrow, Director,
Information Technology; Phil Barnett, Democratic Staff
Director; Stacia Cardille, Democratic Deputy Chief Counsel;
Brian Cohen, Democratic Staff Director, Oversight and
Investigations, Senior Policy Advisor; Elizabeth Letter,
Democratic Assistant Press Secretary; Stephen Salsbury,
Democratic Special Assistant; Roger Sherman, Democratic Chief
Counsel; and Matt Siegler, Democratic Counsel.
OPENING STATEMENT OF HON. TIM MURPHY, A REPRESENTATIVE IN
CONGRESS FROM THE COMMONWEALTH OF PENNSYLVANIA
Mr. Murphy. Good morning. We are here today, the Oversight
and Investigation Subcommittee of the Committee on Energy and
Commerce, for a hearing entitled, ``Does HIPAA Help or Hinder
Patient Care and Public Safety?''
As there is a classified briefing as well as votes this
morning, we are going to waive opening statements in order to
get right to the witness testimony. We will allow members to
submit their opening statements for the record.
A hearing last month addressed issues raised after the
Newtown tragedy. Some of the witnesses told the subcommittee
how HIPAA had hindered their ability to care and treat for
loved ones. We are going to hear from a number of folks,
government representatives, professionals, parents, experts,
family members. It is an important issue.
Members, the reason we are here is members of Congress
themselves are experts and knowledgeable on many of these
issues, so we appreciate your attention to this. We are here to
ask questions and learn the facts about HIPAA from those who
are knowledgeable of them and remind everyone that we need to
maintain decorum in the committee room. Disruptions will not be
tolerated and people doing so will be discharged if needed.
We also are asking members to stick closely to the time
limit as we go through.
Ms. DeGette. Will the Chairman yield just briefly?
Mr. Murphy. Yes. I yield briefly.
Ms. DeGette. The Chairman and I have agreed to put all of
the opening statements in the record, and I think that is
appropriate given this classified briefing which was just
scheduled yesterday out of respect to the witnesses, many whom
have come from around the country. The Chairman and I decided
we really wanted to hear from the witnesses.
I will say, Mr. Chairman, though, that this is really an
important topic, the HIPAA issues, particularly as they relate
to gun violence, but it is also important if we are being asked
to get the U.S. militarily or otherwise involved in Syria and
this classified briefing is with the Secretary of State, so on
behalf of everybody I want to apologize to the witnesses. Some
of us may be coming in and out, but we will read the testimony,
and we will make sure we know what is going on.
So thank you very much, Mr. Chairman.
Mr. Murphy. I appreciate it. I want to also let members
know I communicated with Majority Leader Eric Cantor last
evening, and he is having his staff working on providing a
special briefing for any members who remain through this
committee.
You are aware that the committee is holding an
investigative hearing. I say this to the witnesses, Mr.
Rodriguez and Mr. Rothstein, and when doing so, we have the
practice of taking testimony under oath. Do you have any
objections to testifying under oath?
Thank you.
The Chair then advises you that under the rules of the
House and the rules of the committee you are entitled to be
advised by counsel. Do you desire to be advised by counsel
during your testimony today?
Thank you.
In that case will you please rise and raise your right
hand? I will swear you in.
[Witnesses sworn.]
Mr. Murphy. Let the record show the witnesses have answered
in the affirmative. You are now under oath and subject to the
penalties set forth in Title XVIII, Section 1001 of the United
States Code. You may each now give a 5-minute opening
statement, but let me introduce the witnesses for today's
hearing.
On the first panel we have Mr. Leon Rodriguez. Mr.
Rodriquez is the Director of the Office for Civil Rights at the
Department of Health and Human Services. He oversees the
administrative operations of the civil rights division.
We also have Professor Mark Rothstein. He has a joint
appointment at the University of Louisville, School of Law, and
the School of Medicine. He also holds a Herbert F. Boehl Chair
of Law and Medicine and is the founding director of the
Institute for Bioethics, Health Policy, and Law at the
University of Louisville School of Medicine.
Gentlemen, you may begin. Make sure your microphone is on
and pulled close to your mouth. Thank you. You may begin.
TESTIMONY OF LEON RODRIGUEZ, DIRECTOR, OFFICE FOR CIVIL RIGHTS,
DEPARTMENT OF HEALTH AND HUMAN SERVICES; AND PROFESSOR MARK A.
ROTHSTEIN, HERBERT F. BOEHL CHAIR OF LAW AND MEDICINE,
DIRECTOR, INSTITUTE FOR BIOETHICS, HEALTH POLICY, AND LAW,
UNIVERSITY OF LOUISVILLE SCHOOL OF MEDICINE
TESTIMONY OF LEON RODRIGUEZ
Mr. Rodriguez. Good morning, Mr. Chairman, Ranking Member
DeGette, and members of the subcommittee. It is an honor for me
to be here today in my capacity as Director of the Office for
Civil Rights at the U.S. Department of Health and Human
Services, and I thank you for calling a hearing on this very
important topic.
As HHS's enforcement agency for civil rights and health
privacy rights, OCR handles enforcement, policy development,
and education for compliance with laws in those areas. Our
office plays an important role in ensuring that an individual's
sensitive health information remains private and secure and
that individuals are able to exercise important rights with
respect to their health information.
One of the underpinnings of HIPAA is that optimal
healthcare depends for many patients on their trust that their
health information remains confidential. HIPAA also ensures
that health information can flow for important and necessary
purposes such as patient treatment, obtaining payment for
health services and protecting the country's public health and
safety. I have often said that HIPAA is meant to be a valve and
not a blockage, and that it is above all meant to maximize the
welfare and interests of thepatients.
As such, I look forward to discussing the existing
flexibilities within HIPAA. HIPAA recognizes the vital role
that family members play in supporting patients with
significant illness, both physical and mental. I have read the
family testimonies that were placed in the record and am
heartbroken by them, and so, therefore, take seriously this
committee's desire to get to the right answer on these issues.
To directly address the concerns that underlie this hearing
I will discuss the paths that HIPAA offers for providers to
disclose information received during treatment to protect the
health and safety of their patients.
For example, HIPAA permits personal health information to
be used or disclosed without an individual's authorization for
health treatment and payment and for the business operations of
covered entities. HIPAA also permits other uses and disclosures
for certain public health activities, for law enforcement
purposes, and to avert serious and imminent threats to health
or safety.
I would like to talk about disclosures to family members
and friends of patients. This is an important area. Ordinarily
if a patient does not object to information being either shared
in front of family members or friends or with family members or
friends, HIPAA provides a clear avenue for disclosure in those
cases.
Additionally, if a patient is incapacitated--and when I say
incapacitated, we mean for that word to be given its full
ordinary meaning--healthcare providers may still communicate
with family and friends of the patient if the provider
determines, based on professional judgment, that doing so is in
the best interest of the individual. And this is, I think, an
important point to underscore. HIPAA is meant to revolve around
the professional judgment of the provider as to what is in the
best interest of the patient. It is not meant to supplant that
judgment.
And so, for example, a nurse can discuss a patient's
medical condition in front of the patient's sister, who
accompanies her to an appointment. If a patient is unconscious
or otherwise incapacitated, the doctor, again, can make that
judgment to share information with family members.
Similarly, HIPAA recognizes that professional codes, state
laws, and professional standards of care recognize a duty and
authority to warn of situations where a patient may pose a
danger to themselves or others or may have disclosed
information indicating a threat by another to either themselves
or a third person.
In those cases where there is a serious and imminent risk
of harm to health or safety, HIPAA has a clearly-recognized
exception for disclosure. And when I say an imminent risk to
health or safety, it is not simply the scenario of an
individual going out to commit a violent crime, but, in fact,
it covers a number of possible scenarios that a healthcare
provider, particularly a mental healthcare provider, may
encounter.
We take our obligations to educate providers and patients
on these flexibilities seriously, and it is for this reason
that we in the Administration took the initiative in January
after the tragic events in Newtown to issue a letter to the
Nation's healthcare providers clarifying these important
points.
Finally, I want to talk for just a moment about the nature
in which we utilize our enforcement authorities. We focus
primarily on longstanding broad-based security threats. We have
never taken enforcement action because a provider has decided
in the best interests of a patient to disclose information to a
related party.
Thank you, Mr. Chairman, thank you, Ranking Member, thank
you, members of the committee.
[The prepared statement of Mr. Rodriquez follows:]
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Mr. Murphy. Thank you, Mr. Rodriguez.
Mr. Rothstein, you are recognized for 5 minutes.
TESTIMONY OF MARK A. ROTHSTEIN
Mr. Rothstein. Mr. Chairman.
Mr. Murphy. Pull the microphone close to you, if you would.
Mr. Rothstein. Mr. Chairman.
Mr. Murphy. Still not on. Is it on? Pull it real close.
Mr. Rothstein. OK. How about there?
Mr. Murphy. There we go.
Mr. Rothstein. Thank you.
Mr. Murphy. These are government mikes so during the
sequester they are down 20 percent.
Mr. Rothstein. As is my voice, I am afraid.
Mr. Chairman and members of the subcommittee, my name is
Mark Rothstein. I am on faculty of the University of
Louisville, but I am testifying today in my individual
capacity, and again, let me apologize for my laryngitis. It is
seasonal I am afraid.
In my testimony this morning I want to make the following
three points. First, the HIPAA privacy rule is essential to
patient care and public health and safety, second, exceptions
to the privacy rule permit disclosure of health information for
important public purposes, and third, additional measures could
enhance the effectiveness of the privacy rule.
First, ever since the Hippocratic Oath, medical codes of
ethics have established the duty of physicians to maintain the
confidentiality of patient health information. Without
assurances of confidentiality, patients will be reluctant to
divulge sensitive information about their physical and mental
health, their behavior, and lifestyle that could be vital to
the individual's treatment. The privacy rule codifies this
crucial requirement of confidentiality which is necessary for
ethical and effective individual healthcare.
Health privacy laws also are essential to the protection of
public health and safety. To illustrate, this afternoon I will
be returning home to Louisville. At lunch, I do want my cook or
server to be someone who was reluctant to get treatment for
hepatitis A because of privacy concerns. I do not want as my
taxi driver someone with chronic tuberculosis who was afraid to
get ongoing health treatment. I do not want my flight safety
placed at risk by an air traffic controller with a mental
health problem or a pilot with substance abuse who was deterred
from obtaining behavioral health care. Confidentiality
protections, therefore, serve to advance both the patient's and
the public's interest.
Although we were all deeply saddened by the recent horrific
loss of life caused by some violent, mentally-unstable
individuals, we should appreciate the potential consequences if
new, excessive mental health reporting requirements were
enacted. Each year in the United States there are over 38,000
suicides and over 700,000 emergency room visits caused by self-
inflicted harms. An estimated 26.2 percent of the people in the
U.S. have a diagnosed mental disorder in any given year. Any
steps to lessen confidentiality protections or mandate the
unnecessary disclosure of mental health information could lead
vast numbers of individuals to forego mental health treatment
and potentially result in significantly more suicides, self-
inflicted harms, and untreated mental illness.
Second, the privacy rule specifically permits a covered
entity to disclose 12 types of health information of importance
to the public, and therefore, the privacy rule does not hinder
public safety. Among these 12 categories are disclosures for
public health activities, about victims of abuse, neglect, or
domestic violence, for law enforcement, and to avert a serious
threat to health or safety.
The 12 public purpose exceptions are permissive. The
privacy rule does not require any disclosures. The disclosure
obligations arise from other sources such as state public
health reporting laws. The effect of the public purpose
exceptions is to permit otherwise-required disclosures without
violating the privacy rule.
Third, for the last 10 years, inadequate health
professional and patient outreach and education programs have
led to a lack of understanding of the privacy rule by many
affected individuals and covered entities. A common problem is
that some uses and disclosures permitted by the privacy rule
are not allowed by some covered entities, perhaps out of
ignorance or an over-abundance of caution.
The 2013 promulgation of the omnibus amendments to the
privacy rule make it an appropriate time for HHS to start a new
program of public and healthcare provider education and
outreach.
In conclusion, the privacy rule, I believe, is essential to
individual healthcare and public health and safety. Additional
efforts to increase understanding of the privacy rule by the
public and covered entities, as well as revising some of the
public purpose exceptions, will enhance the effectiveness of
the privacy rule.
I thank you for the opportunity to testify this morning.
[The prepared statement of Mr. Rothstein follows:]
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Mr. Murphy. I thank both the gentlemen. Let me just ask
some questions. I recognize myself for 5 minutes.
During this subcommittee's March 5 forum on severe mental
illness, Pat Milam, father of a son with a serious mental
illness, pointed to HIPAA as a significant obstacle to getting
his son the help he needed. Mr. Milam explained that one of his
son's doctors judged him to be, ``of extremely high risk for
suicide or other bad outcome,'' more than once and yet failed
to share this information with Pat or his wife. Matthew Milam
tragically took his own life only months later while living
with his parents, and it was only after Matthew's death that
the Milams were able to obtain their son's medical records.
Is this an example where HIPAA worked as intended, Mr.
Rothstein?
Mr. Rothstein. No, but if HIPAA were followed to the
letter, that would have permitted the disclosure under----
Mr. Murphy. Mr. Rodriguez, you agree with that, too? Does
HIPAA bar a physician or a licensed provider from revealing
health information to the parents of a young adult who is
living with their parents? Yes or no, Mr. Rodriguez?
Mr. Rothstein. No.
Mr. Rodriguez. Under some circumstances it might. In most
circumstances there would be paths for disclosures to those
parents.
Mr. Murphy. Paths for disclosure. Does it allow physicians
to provide information to parents if the young adult is
receiving care through the parent's healthcare plan up to age
26 as envisioned by the Affordable Care Act? So if they are
still dependents, or is it an age? Can you tell me where that
cutoff is?
Mr. Rodriguez. Yes. The cutoff in terms of the patient's
ordinary ability to object to the provider's disclosure is the
age of majority, whatever it happens to be in a particular
State.
Mr. Murphy. So in Pennsylvania it is age 14. A 14-year-old
could decide whether or not that information is to be
disclosed. In other States it may be 18.
Mr. Rodriguez. Yes. I would assume ordinarily it would be
18.
Mr. Murphy. Are either of you familiar with the term,
anosognosia, what that term means?
Mr. Rodriguez. I am aware of it, Chairman, because I
actually read the majority memorandum for this hearing.
Certainly going back to the discussion of serious incapacity
and the discussion of serious and imminent risk of harm,
certainly situations where that condition either renders the
patient to be in a condition of incapacity or where the
consequences of that condition being unaddressed are a serious
risk of imminent harm to health or safety--again, it doesn't
mean going out and committing a gun crime. It can mean a
variety of different things that could be extremely harmful to
that patient.
Then, yes, in those cases a provider could disclose without
consent.
Mr. Murphy. Mr. Rothstein, would you agree?
Mr. Rothstein. I agree. Yes.
Mr. Murphy. It sounds like from what I read from your
testimony and what you have said here that we may find that a
lot of providers are misinterpreting or over-interpreting the
laws on HIPAA which prevent them from disclosing things to
patients. Is that what you are suggesting is happening here?
Mr. Rodriguez. Chairman, we have observed in a variety of
our areas of enforcement that there is anxiety about our rules
in all the wrong places. If you look at where we have taken
enforcement action, it has been focused on institutions that
have had longstanding failures to protect the security of all
of their patients' information.
HIPAA was designed to respect the provider's judgment as to
their patients' best interests. I think that is often,
unfortunately, misunderstood, and that is one of the reasons we
provided that clarification.
Mr. Murphy. Let me ask this because it gets to the crux of
the matter of why we are here today, and we are going to hear
some testimony from some professionals, some experts, and some
parents.
What if the provider decides not to share the memo or the
information, whatever, for those reasons? What if the patient
doesn't sign a release? A patient themselves does not even
recognize they have a problem, and the parents even go to court
and say, we would like to have these records reviewed. In some
cases the hospital staff says, I can't release these records if
a judge says we can, and the judge asks the patient, the
patient says, no, and yet a condition may still exist that the
patient is at risk for suicide or harm to themselves for not
following their treatment.
What then?
Mr. Rodriguez. One thing to also keep in mind in answering
this question is HIPAA's not the only relevant body of law. So
we are also talking about professional ethical standards, both
the American Psychiatric Association and the American
Psychological Association impose clear duties of
confidentiality and create exceptions as we do, and, in fact,
our rules are built around both those ethical duties and State
law duties such as, for example, that in the Tarasoff v.
California Board of Regents case. Clearly in the kinds of
scenarios where you describe where a provider is aware of, for
example, the risk of suicide, a very clear situation where we
are talking about serious risk of imminent harm, HIPAA does not
stand as a barrier, even in the absence of the patient's
consent to disclosure.
Mr. Murphy. I am going to cut myself----
Mr. Rodriguez. Anybody who can help the patient. That is a
critical element here. To that person who can lessen or remove
the threat to the patient. If that is the parents, then that is
where the disclosure can go.
Mr. Murphy. Thank you. I am out of time. I am going to go
now to Ms. DeGette for 5 minutes.
Ms. DeGette. Thank you, Mr. Chairman.
I think we can all agree that HIPAA provides many important
protections for people's medical privacy, and we have a history
of bipartisan agreement that people need to be able to keep
their sensitive health information private, and so I think we
would agree with our witnesses on the importance of HIPAA but
also we need to recognize that in many of these mass shootings
that we have seen and in many mental illness situations where
someone is a risk to themselves and to their families, there
are clearly some problems with how providers and institutions
are interpreting HIPAA obligations. Because it seems to me if
someone is a danger to themselves or to others, that would be
up to the provider's decision to advise the parents or other
responsible adults.
Is that correct, Mr. Rodriguez?
Mr. Rodriguez. Yes. It would----
Ms. DeGette. And Mr. Rothstein, is that correct?
Mr. Rothstein. Yes. I agree with that.
Ms. DeGette. So I just want to say I am not going to
blindly defend HIPAA, but I think we should be very, very
careful when we contemplate changes to that statute. We heard
in March about providers' interpretations of HIPAA and how they
can be barriers to treating not just the mentally but also the
physically ill.
I myself, as a parent, I have a diabetic child, and even
before she was 18 years old sometimes we had a hard time
getting providers to give us information. That is not because
of HIPAA. It is because the providers misinterpreted HIPAA, and
so when we hear these tragic stories today, and I am hoping I
will get back for that, I think that we need to really take
that seriously, but we need to look at ways to educate
providers.
In the aftermath of the murder of 32 people at Virginia
Tech we learned that HIPAA interpretations prevented mental
health professionals from appropriately sharing information.
Misinterpretations of HIPAA and other private laws were also
identified by the GAO and by President Obama's Gun Violence
Task Force as an obstacle to reporting individuals who should
be barred from gun ownership to the next background check
system.
And so, Mr. Rodriguez, I think you would say HHS has tried
to be responsive to these concerns that interpretations of
HIPAA and other privacy rules have created obstacles. Is that
correct?
Mr. Rodriguez. That is correct. That is why we----
Ms. DeGette. And, in fact, you sent a letter out on January
15 of this year to health providers around the country, trying
to delineate exactly what HIPAA says. Correct?
Mr. Rodriguez. Yes, we did.
Ms. DeGette. Now, tell us why you sent this letter.
Mr. Rodriguez. We thought that because of all the concerns
about the interaction between situations where a provider is
aware of information indicating danger to either the patient or
others, and some of the events that we have been hearing about
in recent years, that it was important to remind providers of
the--of both the duty, the permissions under HIPAA, but also to
remind them to consult with their applicable ethical standards
and their applicable State laws that clearly do give them a
pathway to report in these kinds of situations.
Ms. DeGette. Thank you, and HHS recently issued an advanced
notice of proposed rulemaking to solicit public comments on
HIPAA and its perceived barriers to the reporting of
individuals to NICS due to mental health concerns. Is that
correct?
Mr. Rodriguez. That is correct.
Ms. DeGette. And can you explain very briefly why this
advanced notice of rulemaking is necessary and what information
you are trying to collect?
Mr. Rodriguez. Sure. In most States reporting as to
disqualifying information for NICS actually comes from the
judicial system, which is not covered under HIPAA. We are aware
at least generally about some examples--New York State until
recently was one very clear example of a State where reporting
occurred from entities that are, in fact, covered by HIPAA, and
reporting would ordinarily have been prohibited by HIPAA. We
want to understand where and to what extent HIPAA is a barrier
in those cases and take any appropriate steps to----
Ms. DeGette. Thank you.
Mr. Rodriguez [continuing]. Remove those barriers.
Ms. DeGette. OK. Just one last question.
Now, the Affordable Care Act, it extended insurance to
dependents up to the age of 26. Correct? Yes or no?
Mr. Rodriguez. That is correct.
Ms. DeGette. Yes, but it didn't say that individuals up to
the age of 26--maybe that this a good question for you, Mr.
Rothstein. It didn't say individuals up to an age of 26 were
still considered legally dependents of their parents because
they are getting health insurance. Is that correct?
Mr. Rothstein. Yes.
Ms. DeGette. And, in fact, the provision of the Affordable
Care Act didn't even talk about HIPAA, did it?
Mr. Rothstein. Correct.
Ms. DeGette. That is correct. OK. Thank you.
Mr. Chairman, I would ask unanimous consent to put this
January 15, 2013, letter from the Director to providers into
the record.
Mr. Murphy. Without objection we will----
Ms. DeGette. Thank you very much.
[The information appears at the conclusion of the hearing.]
Mr. Murphy. Thank you. The gentlewoman's time has expired.
I now recognize Dr. Gingrey from Georgia for 5 minutes.
Mr. Gingrey. Mr. Chairman, thank you, and thank you very
much for calling this very important hearing. You know, I am
sitting here thinking as a physician member of the subcommittee
that it is kind of ironic, isn't it, that this law passed in
1996, HIPAA. It almost sounds like the Hippocratic Oath, which,
of course, in the first place, do no harm. It really in a way
has nothing to do with the Hippocratic Oath, which is hundreds,
if not thousands, of years old, but in a way it does touch on
that in the first place, do no harm, in regard to how you treat
a patient but also this information sharing because if it is
not done correctly, great harm, there is potential for great
harm, not only for the patient but to the general public. So I
just think that I find that sort of ironic.
Mr. Rodriguez, when was the last time that the Office of
Civil Rights under HHS updated the Healthcare Provider's Guide
to the HIPAA Privacy Rule posted to the OCR Web site? And how
about the Patients' Guide? Same thing.
Mr. Rodriguez. Congressman, Doctor, we are updating
guidance on a routine basis as different issues comes up. As
you know, we issued a major rule that profoundly affects both
consumers and providers in January of this year, and so we have
been busy posting updates relevant to that rule.
Mr. Gingrey. That was that January 25 rule?
Mr. Rodriguez. That is correct. Similarly, when we
identified the concerns about gun violence after the Newtown
shooting, we took immediate and decisive steps to put up this
reminder about the manner in which HIPAA interacts with the
duties to warn. We are updating our information on a very----
Mr. Gingrey. Well, these guides answer common questions
about HIPAA. Correct?
Mr. Rodriguez. That is correct.
Mr. Gingrey. And do you ever receive input from either the
general public or the healthcare providers about the
effectiveness of these updates?
Mr. Rodriguez. We do. We speak routinely to both consumer
groups and provider groups. My door is always open. In fact, I
took the initiative this morning to connect with several of the
family members here today because I want to hear from them. I
want to know these concerns and make sure that we are getting--
--
Mr. Gingrey. I am going to come right back to you, but Mr.
Rothstein, are you familiar with these guides? Do you have any
sense of how effective they are?
Mr. Rothstein. Well, I am not sure how effective they are,
but I can comment generally about the Outreach in Education
Program and with all due respect to OCR and HHS, I think we
have a major problem in this area. If you read the regulations,
there are ample places where these kinds of issues, the problem
of notifying parents, the problem of notifying individuals who
are at risk, is spelled out. But HIPAA is a very misunderstood
regulation. It is misunderstood by the public, it is
misunderstood by healthcare providers and----
Mr. Gingrey. Well, let me interrupt you to say that I fully
agree with you, and as a practicing physician for a long time
before I came here 10 years ago, I knew that, and I think, in
fact, I wonder if some physicians don't hide behind if I just
move onto the patient, not want to be bothered with an aunt or
an uncle or a cousin, in regard to questions about their loved
one. I hope that doesn't exist too much, but, I mean, it is
something that we need to think about.
Let me go back to the Director of the Office of Civil
Rights, Mr. Rodriguez. How does OCR measure? Now, I think when
I was talking to you just a second ago, it sounded like it was
more anecdotal from your perspective, but how does OCR measure
whether the clarifications that you referenced January 25 of
this year, indeed, how do you measure how they are working? For
example, have the number of privacy rule complaints filed under
the various complaint categories been trended downwards with
every further clarification, hopefully this most recent one
from OCR? Does OCR keep track of this? Do you think this will
be a helpful metric to track in judging the performance, your
performance of your outreach and education efforts concerning
the privacy rule?
Mr. Rodriguez. So answering the first part of your
question, Congressman, the truth is our caseload has remained
steady, and in fact, has grown slightly over the years since we
commenced enforcement. We've received something in the order
of, I think, approximately 80,000 complaints since we first
began receiving complaints, and the amount has been fairly
steady over the years.
Part of what is going on here is HIPAA's still new, you
referenced 1996, but our rules really didn't become final until
2003 and 2005. And so there has been a learning curve over the
years both for consumers and providers to understand what HIPAA
requires and what it authorizes, and we often emphasize that
HIPAA's flexible and scalable, meaning that it is really meant
to be designed for a very wide variety of healthcare scenarios.
I agree generally that our caseload is certainly an
indicator. I don't think it is the only indicator of how well
folks are understanding the requirements. I certainly agree
with that proposition. I think there have been surveys. I am
not able to speak to them specifically right now in terms of
where patient concerns are, where provider concerns are, but we
certainly do hear a lot of anecdotal information as you
described.
Mr. Gingrey. Mr. Chairman, thank you for allowing the
witnesses to answer, and I yield back.
Mr. Murphy. Thank you.
Mr. Gingrey. Thank you both.
Mr. Murphy. I now recognize the gentleman from Iowa, Mr.
Braley, for 5 minutes.
Mr. Braley. Thank you, Mr. Chairman, for holding this very
important hearing which deals with the ongoing struggle between
patient privacy and protecting the public safety, and these are
not easy issues to deal with, but I think part of the
challenges we faced and part of the concerns of family members
who have been dramatically impacted by our inability to solve
this problem is that these particular provisions you have been
talking about, Mr. Rodriguez, are commonly known as the Duty to
Warn Provisions, and yet to most of us who understand duty to
warn, a duty is a mandatory obligation, not a permissive
requirement. And even though I understand completely your
explanation of how this permissive disclosure is then subject
to State laws dealing with mandatory disclosure, I think many
healthcare professionals, particularly mental healthcare
professionals, look at the HIPAA language, see that it is
permissive, and that is the end of the story for them.
And I would like to hear from both of you how are we
educating the public and more specifically mental healthcare
providers about this bridge between supposedly mandatory Duty
to Warn Provisions that are actually permissive and State law
requirements that might be mandatory?
Mr. Rodriguez. So that is one of the issues that I think
the drafters of our rule in this area were attempting to
tackle, because we are talking about, I think you are correct,
we are talking about both duties and authorities to warn. In
other words, when we are talking about the Tarasoff example,
there we are talking about an actual duty to warn or to
protect.
Mr. Braley. But based on State law. Not based upon the
language of HIPAA.
Mr. Rodriguez. Correct. HIPAA is really meant to get out of
the way of those duties and authorities and to clear a wide
enough lane for those duties and authorities to be utilized and
implemented by providers and for professional judgment to
really be the hallmark of when disclosure occurs.
Mr. Braley. Well, one of the first forums we had on this
subject one of our witnesses was Pete Early, who wrote this
book about his son's journey through the mental health system
and criminal justice system, and he noted appropriately in here
that in 1963, President Kennedy signed a National Mental Health
Law that authorized Congress to spend up to $3 billion in the
coming decades to construct a national network of community
mental health centers, and then notes on the next page that
Congress never got around to funding or financing community
mental health centers.
So the process of deinstitutionalization moving from State
mental health institutions to community-based mental healthcare
that was supposed to happen instead became a process where more
and more people wound up in the criminal justice system, and we
now have law enforcement officers who often are providing
frontline mental healthcare. And I think for the families of
some of the victims who have experienced firsthand the loss of
a loved one because of our inability to bridge this gap,
especially when a patient is accompanied to a treatment
facility by law enforcement officials who have a duty to
protect the public safety and they aren't provided information
about the release of that patient, even though there may be a
prior history of threats, how do we get to the point where we
are protecting the patient's privacy and at the same time
making sure that we aren't blocking the disclosure of
information that can protect the public?
Mr. Rodriguez. I certainly think we need to continue our
educational efforts, and, again, that is why that initiative--
which, incidentally, was widely covered in professional media--
of the reminder we sent in January was something that was
really embraced by the mental health profession as a reminder
to them that at least HIPAA, I can't account for all the
professional codes and State laws that also apply here, but at
least HIPAA in those kinds of situations where a danger is
posed does not stand as an obstacle to providers acting in the
interest of the patient and of public safety.
I think it is also worth noting, you know, that there is a
countervailing concern that patients who fear that their
information will not be confidential won't get treated, and I
think that is why, Congressman, when you talked about that
delicate and difficult balance, that is the balance that both
our regulations and healthcare providers I believe are trying
to strike.
Mr. Braley. Mr. Rothstein, one of the other concerns that
Mr. Early raises is that if we have a child in a divorce
proceeding or a custody proceeding, the number one role of the
court system is to decide what is in the best interest of the
child. That is their principle focus. And yet when we have
adult patients who are getting mental health treatment who may
or may not be able to make decisions about their own treatment
needs, oftentimes the legal criteria are not what is in the
best instance of the patient but protecting the patient's
wishes from a legal standpoint and that often the advocates
focus on that rather than getting the best treatment option
that would benefit them in society.
What are the obstacles we need to face to deal with that
problem?
Mr. Rothstein. It is a very difficult question. The
immediate test would be whether the individual is competent,
and if the individual is competent, healthcare providers tend
to overlook all the other tests. If the individual is competent
and a threat to self or others, then that overrules the
competency issue. If the individual is incompetent, unable to
make reasoned decisions about his or her mental health, then
the confidentiality protections would not apply.
Mr. Braley. Thank you.
Mr. Murphy. The gentleman's time has expired.
I now recognize the gentlewoman from North Carolina, Ms.
Ellmers, for 5 minutes.
Mrs. Ellmers. Thank you, Mr. Chairman, and thank you for
holding this very, very important mental health hearing,
especially in lieu of the forum that we had a couple of weeks
ago with the family members. You know, that was a very
important, emotional, and revealing discussion that we had,
which brings me to some of the questions that I have because I
have practiced in healthcare. I am a nurse. My husband is a
general surgeon, and you know, HIPAA can sometimes get in the
way, and as healthcare professionals I would say that you would
typically err on the side of protecting the patient's
confidentiality and yourself--as a healthcare professional.
Mr. Rodriguez, I would like to ask you since the
implementation in 2003, according to my information HHS has
received over 79,920 HIPAA complaints. What is the procedure
when a complaint comes in?
Mr. Rodriguez. Sure. The first thing we do is assess
whether, in fact, it is a HIPAA complaint at all or whether the
complaint is about some other issue outside of our
jurisdiction. If we determine that we do have jurisdiction, we
then conduct an inquiry.
Mrs. Ellmers. OK.
Mr. Rodriguez. Conduct an investigation into the
allegations. If we determine that there were violations of
relevant HIPAA requirements, we then ordinarily work with the
entity--I am going to talk about the exception in terms of our
Monetary Enforcement Program--work with the entity to correct
whatever the deficiencies are in their practices in order for
them to go forward and be compliant----
Mrs. Ellmers. OK.
Mr. Rodriguez [continuing]. In those areas. Now, through
HITECH as you know, we received enhanced monetary enforcement
authorities, particularly directed at concerns about the
security of electronic health information.
Mrs. Ellmers. OK.
Mr. Rodriguez. And so, since HITECH was passed, our
enforcement has specifically focused on security rather than
the use and disclosure issues that we have been talking about
here, and has, in fact, grown, and in fact, it has been a
priority of mine to grow our enforcement to protect the
confidentiality of electronically----
Mrs. Ellmers. OK.
Mr. Rodriguez [continuing]. Maintained information.
Mrs. Ellmers. Yes. Very important. Mr. Rothstein, can you
tell me, since implementation of HIPAA have there been
significant law suits filed? Is that something that you would
have information about with alleged HIPAA violations? And when
I say lawsuits, I mean against healthcare professionals.
Mr. Rothstein. Right. Well, HIPAA does not provide for a
private cause of action.
Mrs. Ellmers. OK.
Mr. Rothstein. There have been a few lawsuits alleging
invasion of privacy or some other----
Mrs. Ellmers. OK. So it would have to be----
Mr. Rothstein. But they refer to HIPAA violations, but
HIPAA doesn't provide for those.
Mrs. Ellmers. OK, and there again, I get back to the issue
of healthcare providers who would err on the side of less
information is probably better--just, always looking out for
the patient and, unfortunately, always having to cover your own
self. And that is one of my areas of concern with HIPAA,
because I do believe it is a gray area and is left up to too
much interpretation.
So, Mr. Rodriguez, my final question here, I have a little
over a minute, do you have a sense of how often hospitals and
staff actually go over the HIPAA regulations and make sure that
they are up to date? Is that done on an annual basis?
Mr. Rodriguez. It is, Congresswoman, variable. We actually
did an audit program last year, which is another program
required under HITECH, and this was a pilot, and we found a
wide range. We found some institutions that take those
obligations seriously, do them on a regular, annual basis,
ensure that new employees are trained, but there are also many
providers where that is not the case. The compliance is all
over the board.
Mrs. Ellmers. OK. There again, unfortunately, so many
things fall on this information. I think this is definitely one
of those areas. So thank you very much, and I yield back the
remainder of my time.
Mr. Murphy. I now recognize Mr. Butterfield for 5 minutes.
Mr. Butterfield. Thank you, Mr. Chairman. Let me begin by
thanking both of you for your testimony today. I thank you very
much. It is obvious that you all are both well prepared.
I will address this question to Mr. Rodriguez. Mr.
Rodriguez, following the Newtown tragedy President Obama took
appropriate action by clarifying to healthcare providers in
writing their duty to warn law enforcement authorities of
threats of violence.
First of all, is that true?
Mr. Rodriguez. That is true. I signed the letter, but it
was at the President's direction.
Mr. Butterfield. OK. That was going to lead me to my
question was it a letter or an executive order, or what was it?
It was a letter from your office.
Mr. Rodriguez. The letter was really a reminder of existing
duties under the law and also of the Administration's emphasis
that these authorities to warn and these duties to warn should
be fully exercised to protect the public safety.
Mr. Butterfield. And has that action had any impact as far
as you can determine?
Mr. Rodriguez. It has had impact in the sense that there
has been renewed discussion about these issues. There was
extensive industry media coverage of the letter, and so,
therefore, we believe, based on that, that the reminder reached
the folks it needed to reach, which are particularly those
mental health providers.
Mr. Butterfield. And about how many letters actually went
out from your office?
Mr. Rodriguez. They were posted on our Web site and then
disseminated by both press release and through various listers
that HHS has.
Mr. Butterfield. Can you describe, Mr. Rodriguez,
additional ways the Health Information Technology, HIT, for
Economic and Clinical Health Act, which we passed in the
Recovery Act, has improved privacy and security requirements
for patient records?
Mr. Rodriguez. Sure. I appreciate that question. First of
all, it has done so by bringing business associates within the
ambit of the privacy and security worlds. That is those
contractors who serve healthcare providers, and in fact, often
come into possession of large quantities of protected health
information. We now directly regulate them as we directly
regulated healthcare providers before that. It increases the
penalties for violation of HIPAA, which we have used
extensively for security violations, and it also establishes
requirements that breaches of health information need to be
reported to our office, to the affected patients, and in cases
of larger breaches, also be reported to prominent media that
will be seen by the affected patients.
Mr. Butterfield. All right. My third question follows. Can
you describe the training that medical professionals receive to
ensure they adhere to HIPAA?
Mr. Rodriguez. Sure. To my knowledge, and I wouldn't
consider this a comprehensive answer, but certainly training on
HIPAA is offered at many professional conferences. In fact, we
actually have prepared a series of videos that have been
posted, and several more that will be posted on Medscape,
including some that are, by the way, relevant to the topic we
are discussing here, that discuss various aspects of the
privacy and security rules.
We are particularly concerned about smaller providers who
don't necessarily have the resources of larger institutions. So
we are looking for opportunities to reach them.
I also understand that there are medical school curricula
that touch on these issues as well.
Mr. Butterfield. It is my understanding that healthcare
providers covered by HIPAA must notify patients if the privacy
of their health information is breached. What methods are used
to notify those individuals?
Mr. Rodriguez. They should ordinarily be notified in
writing, and, again, we also in certain cases provide for
notification through the media.
Mr. Butterfield. All right. Finally, Mr. Rothstein, Dr.
Rothstein, even with HIPAA protections we have heard that
privacy concerns can cause individuals to actually avoid
treatment. I am not sure I knew that.
Could increasing information sharing through HIPAA cause
fewer individuals to seek treatment?
Mr. Rothstein. That certainly is a concern, especially
individuals who have sensitive information that they are
worried will be disclosed. Yes.
Mr. Butterfield. All right. Mr. Chairman, I yield back.
Mr. Murphy. I thank the gentleman.
Dr. Cassidy is not a member of the Oversight and
Investigations Subcommittee but has asked for an opportunity to
join us and without objection we will allow him 5 minutes to
ask questions. Dr. Cassidy.
Mr. Cassidy. Thank you, Chairman Murphy.
Gentlemen, I am a practicing physician, will see patients
this Tuesday morning, and I have a sense that you two are
incredibly bright and well-versed in this law and is totally
divorced from the reality of an ER physician seeing 20 patients
in a shift, and at 3:00 a.m. there is a person who comes in
with these issues.
I will just tell you, and I will also tell you that
physicians fear the Federal Government. They understand that if
the Federal Government comes after them and grabs them in their
long legal arm, the physician may ultimately win, but she is
destroyed in the process.
Now, I listened to what you say how this would allow
certain forms of communication, but I will also say when I read
that the maximum penalty is 1.5 million, when the physician is
having their in-service on HIPAA, that is what they remember,
and when they understand that it is permissible not to give
information, but you may get in trouble if you do, I can tell
you that guy, that gal seeing the patient at 3:00 a.m. with 20
patients doesn't have your expertise, but what they do have are
examples of physicians who had been grabbed by the law and not
let loose until every one of their personal resources had been
exhausted.
Now, that is just a comment borne out of incredible
frustration with this sense that the Federal Government is this
benign entity that the American people have no reason to fear.
Indeed, it has great reason to fear, and so people act
cautiously.
Now, that said, after my rant, I apologize, let me ask a
couple things. We say that the doc may communicate with the
family if there is imminent danger, but what if the patient is
non-compliant? Can the family say to the mother of the adult
child who lives with her, your son is not taking his medicines,
and therefore, we need to do something about that? Can the
physician do that?
Mr. Rodriguez. So, again, we go back to the idea of serious
risk to health or safety. So we are not talking about imminent
danger in the sense of somebody violent going out, and it
certainly includes that scenario, but it is much broader than
that. So if the patient's health would be seriously, adversely
affected and the provider's communication of that information
to the parent would provide a way of eliminating or at least
reducing that threat, then HIPAA provides them clear authority.
Mr. Cassidy. So the specific example, the patient is
bipolar, and I am a little rusty on my psyche so this medicine
may no longer be used, but assume that they are on Lithium, and
their Lithium level shows that it is low, the patient is not
taking their drug. We have documented fact. Can the doc say to
the mom, your son is not taking his Lithium?
Mr. Rodriguez. You also might have heard the beginning of
my testimony. We were also talking of cases of incapacity.
Mr. Cassidy. Of what? I am sorry.
Mr. Rodriguez. Of incapacity.
Mr. Cassidy. No. I am not saying they are incapacitated
because when that level falls, they don't immediately become
incapacitated. They are just on the potential verge of being
but they can still seem sane.
Mr. Rodriguez. Well, then I think the pathway is--if the
result of that would be serious and imminent threats to that
individual's health, then HIPAA provides a path for those
communications.
Mr. Cassidy. There seems to be a little bit of wiggle room
there. The guy could get back on his dose and bring it back up
to snuff. I am not sure the physician would find a safe harbor
in that kind of answer.
Mr. Rodriguez. Well, I think the greater safe harbor,
Congressman, would be this: We have received 80,000 complaints
since we began enforcing. Only 12 of them have resulted in
monetary penalties.
Mr. Cassidy. I accept that, but what you are talking about
is a fellow seeing patients 20 in a shift at 3:00 a.m. in the
morning who doesn't have your expertise. That is the reality,
and I can tell you that what you hear in that in-service is
that if you violate HIPAA, they are going to turn you every
which way but loose. I can tell you that is what the in-service
is because I have been there.
Mr. Rodriguez. I would love to see those in-services
because they are not consistent with our enforcement history.
Mr. Cassidy. Secondly, it says here that the patient
healthcare provider is not permitted to share personal
information with the family or friends of an adult who tells
the provider not to do so. What if that patient is incompetent?
What if they actually at this point in time are not lucid? They
think that there is black helicopters circulating and that
their mom is the pilot of one of them.
Mr. Rodriguez. And that is why I mentioned that, certainly
in cases of incapacity, and certainly incapacity can include a
situation where a patient is far from lucid, then in those
cases there is also a basis for----
Mr. Cassidy. Now, sometimes lack of lucidity is in the eye
of the beholder. I will tell you that there is a Wall Street
Journal article about William Brice or Bruce, I forget which,
in which the young man was released and went out and killed his
mother with a hatchet. And so clearly he was considered lucid
enough to be released.
I am sorry. I am out of time. I apologize. I will have to
forego. I yield back. I am sorry.
Mr. Murphy. The Chair is going to ask that everybody be
permitted 1 minute of additional questions, and then we will
get onto our next panel, recognizing we have votes coming up
soon. So we will do 1 minute.
Mr. Rodriguez, as you are aware, States have said,
confusion over HIPAA has prohibited them from sharing 1.5
million records with the National Instant Background Check
System of persons who have been involuntary committed to mental
health treatment or deemed mentally incompetent by a court of
law and are, therefore, prohibited from owning a firearm. Our
committee sent a letter to HHS on February 13 asking about
HIPAA interfering with this NICS list. I note that HHS has now
announced it would be soliciting feedback on HIPAA reform.
Why do you believe States are not uploading those records?
Mr. Rodriguez. I certainly have heard of HIPAA as one of
several different reasons, so I don't understand HIPAA to be
the only reason. I know certainly in the case of New York State
their reporting was coming out of, or their reporting would
have had to have come out of, what was a HIPAA-covered entity
and therefore, reporting would have been prohibited, and we are
now looking to eliminate that kind of barrier. Beyond New York
I don't know if there are others.
Mr. Murphy. Can you get us a written response to the
subcommittee on this issue clarifying it?
Mr. Rodriguez. Sure.
Mr. Murphy. Thank you. Mr. Braley, 1 minute.
Mr. Braley. Mr. Rothstein, we were talking earlier about
some of the challenges faced with the incredible burdens placed
on law enforcement officials, our penal systems to provide
front-line mental healthcare. This has been a dramatic shift in
what has happened since Congress passed legislation trying to
promote community-based mental health.
So we now have this long learning experience, and people
who care about the rights of the mentally ill, like I do,
people who care about protecting public safety, like I do, want
to know what we have learned from these experiences as we move
forward and try to create a balanced system that is protecting
the public and the rights of patients to get the best possible
treatment when obviously we have been failing them. What can we
do about that?
Mr. Rothstein. Well, Mr. Braley, that is a difficult
question. On the one hand we need to increase the funding and
wherewithal of community mental health services. That is for
sure. What we can address at this hearing today is the
importance of getting out the message of what HIPAA does and
does not require.
One of the problems overall is that HIPAA was intended to
be a floor above which medical ethics and State law would take
place, but in many areas, including mental health areas, it is
the floor, and there is nothing else above it.
Mr. Murphy. If you can offer a written response, too, we
would appreciate that, because we are going to need more
detail.
Dr. Gingrey, you are recognized for 1 minute.
Mr. Gingrey. Mr. Chairman, thank you. I don't know if I can
do this in a minute but quickly.
Mr. Rodriguez, on January 25, 2013, HHS published a final
rule that makes, and I quote, ``significant modifications to
marketing by third parties to patients for purposes of
identifying potential beneficial health opportunities for
patients.'' For instance, many drug companies use third parties
to help identify patients in need of care for purposes of
inclusion in clinical trials. Some of these patients, including
those from my own district, have chronic illnesses for which no
other treatment option exists.
Would this service still be allowed if such a company,
third-party company, did not first get the patient's consent?
Mr. Rodriguez. It is a long answer, so I will take
advantage of the opportunity to offer it in writing.
Mr. Gingrey. All right. Thank you, and I yield back.
Mr. Murphy. Dr. Cassidy, 1 minute.
Mr. Cassidy. Mr. Rothstein, I am little concerned. You
mentioned the point there is 26 percent of the people who have
a diagnosed mental disorder in 1 year, but really if you talk
about serious mental illness it is really a much smaller
percentage.
Mr. Rothstein. Of course.
Mr. Cassidy. And those are the folks who are incompetent
that, I mean, believe me, I speak from personal experience of
family members and of friends who have been in this situation.
Don't you think it is a little disingenuous to say, OK, here is
a group that truly are out of it as opposed to this 26 percent
that have situational depression or such like this.
Wouldn't it be more honest to kind of focus upon that SMI
group for their sake, their family's sake as a unique group?
Mr. Rothstein. Oh, absolutely, but the point I was trying
to make was, if legislation were enacted that made all mental
health records more discloseable----
Mr. Cassidy. So you would accept maybe SMI under very
guarded circumstances----
Mr. Rothstein. Of course.
Dr. Cassidy [continuing]. As opposed to the broader 26
percent of the population?
Mr. Rothstein. That is correct, but I am worried about the
discouragement of the 26 percent.
Mr. Cassidy. I would just say, someone who has got bipolar
or schizoaffective oftentimes does not have that insight, and I
think we have to be kind of honest about that. They have an
acute break, and they have no insight whatsoever. As a guy who
has worked with such patients and who has had close people
associated.
I yield back. Thank you.
Mr. Murphy. Thank you. Mr. Rodriguez, Mr. Rothstein, thank
you so much for being with us today, and we appreciate your
availability in the future to respond to questions.
As they are stepping up, we ask the folks to get ready for
the second panel. I would like to make an announcement.
As we continue on with our previous hearing after Newtown
and also this one on HIPAA, this committee is exploring issues
of a wide range that deal with mental illness and proper
treatment, et cetera, because of our concerns.
I want to make it very clear, all members are aware of
this, but certainly members of the audience and people who may
be watching this also, at no time does this committee at any
time communicate that those with mental illness are those who
are responsible for violence. We recognize that victims, that
they are actually 11 times more likely to be victims of violent
crime than the non-mentally ill, and the vast majority of
people with mental illness are not violent. It is very
important we understand that.
Could the next panel please take their seats, and we will
move forward then?
As you sit down I will be introducing you. On the second
panel we have Dr. Richard Martini. He is a Professor of
Pediatrics and Psychiatry at the University of Utah School of
Medicine and the Chair of the Department of Psychiatry and
Behavioral Health at the Primary Children's Medical Center in
Utah. For full disclosure I want to say that when I was on the
staff at Children's Hospital in Pittsburgh he was one of my
students. How time flies.
We also have Ms. Carol Levine. She directs the United
Hospital Fund Families and Health Care Project, which focuses
on developing partnerships between healthcare professionals and
family caregivers, especially during transition in healthcare
settings.
Next we have Mr. Gregg Wolfe. Mr. Wolfe is the father of a
son who suffered from mental illness and substance addiction.
Then we have Mr. Edward Kelley. Mr. Kelley is also a father
of a son with mental illness.
And Mr. Braley, would you like to also recognize your guest
today?
Mr. Braley. Yes. Thank you, Mr. Chairman. I am thrilled to
have one of my constituents testify today, Jan Thomas, from
Parkersburg, Iowa. She has a story to tell about this gentleman
who was featured in Sports Illustrated after he was gunned down
by a former student. He was the NFL national high school coach
of the year with four of his former players playing in the
National Football League, and Jan has an important story to
share with us about these issues.
Mr. Murphy. Thank you and finally we have Ms. Deven McGraw.
Ms. McGraw is the Director of the Health Privacy Project at the
Center for Democracy and Technology.
As you all are aware, the committee is holding an
investigative hearing, and when doing so, has a practice of
taking testimony under oath. Do any of you have any objections
to testifying under oath?
The Chair then advises that under the rules of the House
and the rules of the committee you are entitled to be advised
by counsel. Do you desire to be advised by counsel during your
testimony today?
All answer negatively. In that case would you all please
rise and raise your right hand, and I will swear you in.
[Witnesses sworn]
Mr. Murphy. The Chair recognizes all of the participants
answered in the affirmative. You are now under oath and subject
to the penalties set forth in Title XVIII, Section 1001 of the
United States Code. You may each now give a 5-minute summary of
your written testimony.
We now recognize Dr. Martini for 5 minutes. Make sure your
microphone is on and pulled close. Thank you.
TESTIMONY OF RICHARD MARTINI, M.D., PROFESSOR OF PEDIATRICS AND
PSYCHIATRY, UNIVERSITY OF UTAH SCHOOL OF MEDICINE, CHAIR,
DEPARTMENT OF PSYCHIATRY AND BEHAVIORAL HEALTH, PRIMARY
CHILDREN'S MEDICAL CENTER; CAROL LEVINE, DIRECTOR, FAMILIES AND
HEALTH CARE PROJECT, UNITED HOSPITAL FUND; GREGG WOLFE, FATHER
OF A SON WITH MENTAL ILLNESS AND SUBSTANCE ABUSE; EDWARD
KELLEY, FATHER OF A SON WITH MENTAL ILLNESS; JAN THOMAS, FAMILY
IMPACTED BY HIPAA; AND DEVEN MCGRAW, DIRECTOR OF THE HEALTH
PRIVACY PROJECT, CENTER FOR DEMOCRACY AND TECHNOLOGY
TESTIMONY OF RICHARD MARTINI, M.D.
Dr. Martini. Good morning, Chairman Murphy, members of the
subcommittee. I also want to say I am also an immediate past
Board Member of the American Academy of Child and Adolescent
Psychiatry, who paid for my travel here today. Thank you for
inviting me to come and to speak with you about HIPAA and its
implications of clinical practice and to participate in this
discussion. Throughout my testimony I will be reviewing patient
summaries that are based upon my clinical experience but that
do not include easily-identifiable information.
Decisions about the release of psychiatric information are
certainly more straightforward when the patient is a minor and
not emancipated. Parents or primary caregivers are involved in
the process, are available not only to support the patient, but
also to guide them into psychiatric care. Young patients do not
typically recognize the nature or extent of their behavioral
and emotional problems, and this is one reason why child and
adolescent psychiatrists, as well as other pediatric mental
health professionals, are trained to involve families in
diagnosis and treatment. We also know that this improves
outcome.
All pediatric specialties struggle with the transition of
patients from adolescence into young adulthood, from a period
of dependence to a period of almost complete autonomy. Many are
not prepared for the responsibility, particularly those
patients that experience chronic medical illnesses,
developmental delays, and psychiatric disorders. Families have
provided a framework for their care and for many aspects of
their life.
One of my patients, a former patient with a mild form of
autism, developmental delay, and an anxiety disorder was
determined to move out of the home once he was employed. The
parents knew, however, that he could not manage his money, that
he was emotionally reactive when faced with new experiences,
and he really could not track his medications. Nevertheless, he
did not want his parents involved in routine care. It forced
the parents to go to court, state that their son was not able
to care for himself, and must be dependent. Unfortunately, the
subsequent ruling in their favor was counter to our goals in
psychiatric treatment, and it derailed his progress in therapy.
Psychiatrists spend a lot of time negotiating
communications between parents and their children, and we don't
want to discourage anyone from accessing care, specifically
those who will not seek treatment if they believe that someone
will contact or involve their parents. However, the application
of HIPAA regulations should be a negotiation with several
options available to both the clinician and the patient. A
patient of mine in his early 20s suffered from a long history
of congenital kidney disease. He was in and out of the
hospital, usually in the company of his mother. He came into
treatment because he was angry and depressed over the
circumstances of his disease and his subsequent organ
transplantation. I wanted to involve the mother in therapy as a
support, but he refused because he was concerned about how
disappointed she would be given everything that they had gone
through together. He was in treatment for about a year, and he
was on antidepressant medications but dropped out of treatment
because it was too difficult. Two years later, I ran into his
physician who told me that he discontinued his kidney
medications, went into renal failure, and died.
Psychiatrists should be able to both respect the
individuality of the adolescent or young adult under the legal
protection of HIPAA and use the strengths of the family when
necessary to support treatment. I recognize that allowing more
communication and less privacy for an adult patient at risk for
a serious mental illness is a significant change in the intent
of the law, but must we wait for a patient to be considered at
risk for imminent harm to self or others before seeking help
from parents or family?
Rules about confidentiality certainly affect situations
that are relatively more common among adolescence and young
adults, like going to college. Parents are told that even
though they are going be paying the bills, they will not have
access to any medical or psychiatric information without the
student's permission. One such patient with a history of
congenital heart disease and ongoing depression wanted to go
away to college. Her parents wanted her to stay close to home.
She prevailed, but within 3 months of going to school, she
began to deteriorate both medically and psychiatrically. The
Student Health Center knew that she was ill but without her
permission could not contact the parents. If this patient had a
really serious disorder with immediate consequences, the family
may not find out about it until they receive a bill some 30
days after the event. If there is a bias in these situations,
should it be toward parental involvement more than away from
it?
Mental health professionals strive to do what is in the
best interest of the patient, while preserving his or her right
to privacy and protection under the law. The basis for civil
commitment and family communication regardless of the patient's
wishes has been risk of harm to self or others. I suggest that
this standard be reexamined with the goal of involving families
whenever possible.
Thank you, Mr. Chairman.
[The prepared statement of Dr. Martini follows:]
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Mr. Murphy. Thank you, and Ms. Levine, you are recognized
for 5 minutes.
TESTIMONY OF CAROL LEVINE
Ms. Levine. Chairman Murphy, members of the committee,
thank you very much for inviting me here today. I am at the
other end of the age spectrum. I work with family caregivers of
older adults who are with multiple chronic illnesses, and I
think the importance of my experience for your deliberations is
that the misinterpretations of HIPAA which we have heard about
from Mr. Rodriguez and Mr. Rothstein are far more pervasive
than the specific questions of mental illness.
There are about 42 million Americans who are taking care of
their chronically-ill older parents or other relatives, and I
can't tell you how many times I hear from family caregivers who
have a parent in the hospital, and the family member is
expected to do a wound care, multiple medications, monitor
machines, make all the care coordination in the community, and
when you ask about what do I need to know to do this, they say,
well, I can't tell you because of HIPAA. And that is just
simply wrong and why does it happen? Because of the two
features that have already been mentioned.
There is this training that emphasizes the scary aspects of
HIPAA. It is often done in a way that if you say anything, you
are going to be in big trouble. That--and if the training
doesn't say that, then the informal communication among
healthcare providers, particularly from the mid-level staff, it
is not necessarily physicians but nurses, social workers,
others, terrified that they are going to get sued, they are
going to lose their job. Meanwhile, laptops lie all over the
place. They are not paying attention to the actual security of
this information.
The second reason, and I think this is very pervasive, also
alluded to, HIPAA has become a very convenient excuse to avoid
difficult conversations with families. It takes time, it is
sometimes uncomfortable, it has really nothing to do with
privacy of the patient's information. It has to do with I
don't--why am I--why do I have to talk to this daughter? Why
can't I just tell the patient? Well, fine, if the patient is
totally able to understand, but an 85-year-old woman with
congestive heart failure, moderate dementia, 55 other
medications and so forth, just cannot absorb that information.
So I think that what we really need is far more education
on a balanced level. I think it is instructive that our next,
United Hospital Fund's Next Step in Care Web site, guides for
family care, the most downloaded guide is the one to HIPAA. So
people are confused, and they are looking for information. And
I think that hospitals, the covered entities, wherever they
are, need to be encouraged to provide understandable
information to their patients, to the families, to everyone
they deal with. You go to a hospital now, you get a piece of
paper to sign or several pieces of paper, you can barely
understand. I think only Mr. Rothstein and Mr. Rodriguez and
several members of the committee here would actually be able to
understand it, and mostly it is about what we could do with
your information. It is not about protecting the patient's
interests at all.
I think my ultimate question is always whose interests are
being protected? Is it the patient's interests? Is it the staff
members' interests in not getting into trouble? I appreciate
that. Or is it the institution's interests in not making any
kind of--not being, also not being in trouble, and those are
valid, but they should never override the good clinical care,
the importance of good communication that older people, younger
people, everyone needs to get the best possible clinical care.
So it is a very pervasive problem. It goes beyond what you are
specifically asking about, but I think in all it is a kind of
waterfall. Once it starts, it keeps going, and we continue to
hope for more clarification.
Thank you.
[The prepared statement of Ms. Levine follows:]
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Mr. Murphy. Thank you, and Mr. Wolfe, you are recognized
for 5 minutes.
TESTIMONY OF GREGG WOLFE
Mr. Wolfe. Good morning, Chairman Murphy and members of the
Oversight Committee. My name is Gregg Wolfe, CEO of Kaplan,
Leaman, and Wolfe Court Reporting and Litigation Support and
Federal Official Court Reporter for the Eastern District of
Pennsylvania.
I am very thankful for the invitation extended to me so
that I may testify to address the necessary and dire need to
change the HIPAA law regarding minors and legally emancipated
adults who either have a mental disorder, disability, or drug
and/or alcohol addiction. I will set forth the reasoning for
the exception to our valuable HIPAA law, which will have a
positive impact on our society.
My son, Justin, was a gregarious, affectionate, caring,
compassionate, and intelligent young man whose life came to a
sudden end on December 19, 2012, from a heroin overdose at the
very young age of 21.
Justin had attended Drexel and Syracuse Universities for
his freshman and sophomore years respectively, carried a 3.0
GPA, but each year ended poorly due to aberrant behavior.
Justin had been seeing therapists since he was 15 \1/2\ due to
anxiety, OCD, and ADHD.
He was placed on Adderall when he was almost 17 years old.
Unlike physical illness, mental illness has a much longer
maturation and duration until one discovers the effects and
results with which to treat and possibly cure.
In 2012, Justin told his mother that he was addicted to
Percocets and Oxycontin. She, in turn, took him to our primary
care physician without my knowledge, per Justin's request. At
that time, Justin apprised the doctor of his addiction, but
also, when his mother was not present in the room, he stated
that he had been using heroin for a few months prior to that
date.
Justin had asked that I not be apprised of any of those
substances and did not want his mother being informed of his
heroin usage. Without the heroin usage, the doctor expressed
dire concern to Justin's mother and told her to take him
immediately to a recommended crisis center for treatment.
However, upon departing the office, Justin convinced his
mother, through his drug-manipulative behavior, to take him
instead to a Suboxone doctor he knew of, which she did.
Justin would not allow his mother into the treatment room.
There Justin admitted to using heroin for the previous year,
and he was prescribed Suboxone.
Two months later, against Justin's wishes, I was only
informed of his Percocet addiction and implored him to enter
into drug rehabilitation treatment. Justin was working two jobs
during this time, with little time to attend treatment.
Additionally, he convinced his mother and I the Suboxone was
helping him with his recovery.
As another month passed, Justin was residing in his college
apartment, and he finally hit rock bottom. We finally gave him
an ultimatum, and he entered intensive outpatient treatment for
5 weeks that summer. Once in rehab, I contacted the intake
director to inquire about his progress. I was informed that he
could not disclose any information under the HIPAA regulations.
I was extremely frustrated as I could not be apprised of my
son's condition.
During Justin's 5-week rehabilitation, I sent him to see an
experienced psychiatrist weekly, which ensued until his
ultimate demise this past December. I explained to the
psychiatrist his history with abuse, for which he tried to
counsel Justin, as well as to prescribe medication for his
depression, anxiety, and OCD. I later learned, however, upon
Justin's passing, that he had not disclosed his heroin
addiction to the psychiatrist, except to say that he had tried
it once.
Upon Justin's passing, his depression and OCD medication
were found untouched in his apartment. Oddly, he continued to
take his anxiety medication. Justin returned to school last
fall at Temple University where he appeared to be doing well.
He even joined AEPI, a wonderful fraternity, where he pledged
and was fully supported by the brotherhood.
However, Justin obviously was terribly and secretly
addicted to heroin, in addition to having mental disorders. He
died of an accidental heroin overdose just a few weeks later.
Though doctors knew since May, 2011, no one in our family
was aware that Justin was using heroin, a lethal and insidious
drug. Everyone was in shock and disbelief when we found out.
Nevertheless, it was too late.
I have confronted numerous parents, and nine out of ten
people are not aware that snorting heroin is an option, which
is how Justin used the drug, not by injection. Most are also
shocked to learn that heroin is only $5 to $10 a bag.
It was alarming to learn that it is actually cheaper to buy
a bag of heroin on the street than it is to purchase Percocet
and Oxycontin. Even kids from affluent suburban neighborhoods
like my son traveled to dangerous places like Camden, NJ, and
North Philadelphia in Pennsylvania to buy drugs. Justin sold
some of his personal belongings and items stolen from his
mother, pawned his computer on several occasions, and actually
sold his Suboxone and Adderall medication, which I learned
after the fact by reading his text messages.
I hereby request an exception be added to HIPAA allowing
parents of minors with a mental disorder or addiction, who
maintain legal residency in their parents' homes, living under
the auspices of their parents' care, and who are under their
parents' health insurance coverage as specified by President
Obama, until the age of 26, access to that minor's medical
records for the following reason: prevention of harm to
individuals and to society.
One. Any type of addiction or mental disorder can be life
threatening to not only one's self but to society as a whole as
indicative of the Newtown Massacres, Columbine, the Aurora
shootings, to name just a few.
Justin was non-violent and would never intentionally hurt a
soul, but unintentionally his life cut short destroyed other
lives including his younger brother, Austin, who is a Type 1
diabetic, not to mention the individuals to whom he sold his
Suboxone and Adderall. After Justin's passing, Austin told us
of his reckless disregard when driving as well as when
conducting some of his activities. Thank God he never hurt
anyone on the road. I have pictures of Justin's apartment from
his last months that demonstrate how he resided at college,
including cigarette burns in his bedding from obviously nodding
out, which could have set the apartment complex ablaze,
resulting in injury or death to himself and others.
Two. Justin's stepfather had taken him assault rifle target
shooting on occasion for sport. Had we known about his heroin
addiction, he would not have armed him. Justin had often asked
my permission to become licensed to buy a gun, which I was
against despite not knowing about his addiction. However, I am
forever thankful for not allowing it, especially now that I
know he was using a mind-bending drug.
Mr. Murphy. Mr. Wolfe, I know--we are out of time. Can you
give a final summary, and we can have you come back to that
element two? Is there a final summary you can give to your
statement there?
Mr. Wolfe. I do. I have some very important points to make,
and it will only take 3 or 4 more minutes.
Mr. Murphy. I will give you an additional minute. Go ahead.
Mr. Wolfe. Thank you.
Three. Justin's lying and manipulation was the result of
his heroin addiction. I have learned that heroin rewires the
synapses of the brain so the only way to experience pleasure is
by doing more of the drug. One becomes numb to all other
surroundings, emotions, and empathy, thereby resulting in the
aforementioned behavior.
Drug-related deaths have risen steadily over the last 11
years according to a study from the Center for Disease Control.
In 2010, drug overdoses killed 38,000 people, making drugs a
more common cause of death than car accidents, guns, or
alcohol. By comparison, approximately 8,500 homicides were the
result of firearms.
According to a 2011, article in Psychology Today,
accidental drug overdosing is the second most cause of death of
young people in the U.S., exceeding attributable to firearms,
homicides, or HIV AIDS.
According to the U.S. Department of Health and Human
Services, ``With an immature prefrontal cortex, which does not
develop until 24 to 25 years old, even if teens understand that
something is dangerous, they may still go ahead and engage in
risky behavior. With young adults not having their frontage
cortex fully developed, those with mental disorders and or
addictions exacerbate the irrational behavior.''
In many circumstances, parents know what is best for their
children, especially if given the appropriate medical
information with which to exercise judgment and guidance. In an
effort to help other parents in similar situations, I have
launched an all-out campaign to the media, President Obama,
lawmakers in New Jersey, Pennsylvania, and Delaware, and
Congressional leaders such as yourselves to call attention to
this issue, and to lobby for adding additional language to
HIPAA that may help protect troubled young adults and their
communities from harm.
Parents are unable to operate effectively in a vacuum,
without knowledge by healthcare professionals about our drug-
induced, or mentally disabled, legally-aged children who do not
have the wherewithal to reason or think rationally for
themselves. The absence of rationale may result in life-
threatening decisions or, as in my son's case, premature death.
HIPAA has exceptions for public health and safety built-in.
Item number five under Permitted Uses and Disclosures whereby
protected health information can be disclosed without an
individual's consent, including serious threat to Health or
Safety. Covered entities may disclose protected health
information that they believe is necessary to prevent or lessen
a serious and imminent threat to a person or the public, when
such disclosure is made to someone they believe can prevent or
lessen the threat, including the target of the threat.'' So it
should stand to reason language addressing this particular
safety hazard is prudent and necessary.
In closing, I am hereby requesting the following language
be added to this HIPAA exception to avoid ambiguity. Parents or
legal caretakers of a minor and/or emancipated adult with
documented drug abuse and/or mental health histories, who
continue to cover the minor and/or emancipated adult with
health coverage, and/or continue to support the individual
financially, will have access to that individual's healthcare
records until the age of 26 to prevent him/her or society from
harm.
Although Justin's family, friends, nor Justin himself,
could not save him, it is my hope that with change Justin's
situation can help save millions of young lives in the future.
Addiction and mental disabilities wreak havoc on our society
and affect all ethnicities and socioeconomic backgrounds.
When you look at all the famous and intelligent people
whose lives were tragically taken due to mental disturbances
and drug abuse, this country has lost a wealth of talent and
success which would have been an asset to the growth and
strength of our Nation.
Thank you very much.
[The prepared statement of Mr. Wolfe follows:]
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Mr. Murphy. Thank you. Mr. Kelley, you are recognized for 5
minutes. Mr. Kelley.
TESTIMONY OF EDWARD KELLEY
Mr. Kelley. Thank you, Mr. Chairman. I am a father of a
paranoid schizophrenic son. He was diagnosed at age 14, which
means for half his life he has had this illness, and I am
afraid I have some rather harsh news and some points to make
that are going to fall in line, and I thank Congressman Cassidy
for his comments because he really gets right to the point.
My wife and I, upon learning of this diagnosis, embarked
upon educating ourselves in every aspect of mental health
treatment, including navigating the system, familiarizing
ourselves with all the things that are in our way, and then we
took upon ourselves to go out and educate others, and we have
done that by teaching classes, we have done that by serving on
boards, we have done that at speaking engagements, we have done
it by raising money, and we have also done it by bringing
people into our home and comforting them and helping them to
cope.
And so what I am going to tell you is that we are actually
ashamed of ourselves as to what we did not know before our son
became mentally ill, and I would dare say that if the members
of this committee were to spend a couple of days with someone
with psychosis, this would fly. You would change things
tomorrow.
And so what needs to happen is there needs to be
recognition that there is a gaping hole, and I want to clarify
something. There is a difference between anosognosia, which is
lack of insight, and a psychotic episode. They are two entirely
different things. Anosognosia can last for long, long periods
of time and lack of insight, and you refuse treatment, and you
don't want anybody to help you of any kind, most importantly
your family members. Not just parents. Brothers, sisters,
grandparents.
And so what happens is, you are setting a stage for
tragedy, literally propping it up because there is this gaping
hole we are trying to teach or trying to address the needs of
the severely mentally ill the same way we are the mainstream
mentally ill population, and it doesn't work. It is illogical.
My son has thought he has been a U.S. marshal looking for
his gun. He has thought the aliens were invading him. He
thought he was a secret agent. He thinks to this day he served
in two Iraq wars. He has been naked in the snow. He has lived
homeless under a bridge. He thinks my wife is a stripper and a
prostitute and that I am a sexual predator. For an entire year
he did not believe that we were his parents. Now, you tell me
that this individual can possibly make responsible decisions
about his care.
But when he gets into the hospital, and that is a big if
because sometimes we don't have the recent history from prior
hospitalizations to give the new hospital. By the way, he has
been in 14--for 14 years he has been in eight hospitals in four
counties and one city dozens of different times. And so you
have this broken chain of treatment.
So imagine a medical system where physicians and treatment
providers can't rely on prior history to treat this person. It
is beyond comprehension, and the other thing that happens is it
stifles accountability, and now, when I tell you that people
hide behind HIPAA, I am a 14-year-educated man that has been in
every situation possible, and it is only the grace of God and I
think there is a plan out there for my wife and I to somehow
make a difference, that we are sitting here and that our son
hasn't killed himself. He is far more likely to kill himself
than he is to live the rest of his life with his illness.
And so what we find is that once he gets in the hospital,
treatment can be delayed or not done at all, and I want to cite
this example. Our son escaped from a mental health facility
that was locked. HIPAA was thrown out the window. The hospital
was calling us, the police were calling us, they were trying to
pry into his bank records. Every privacy violation you can
imagine was enacted to try to do this manhunt for my son. They
found him 4 days later. They dragged him into a state hospital
in shackles so we can talk about stigma later. Once he was in
there he verbally assaulted the Administrative Hearing Judge,
he was put on suicide watch, he was completely out of it, and
when the time came for his hearing to see whether he should
receive treatment, we were precluded from participating because
of HIPAA, and that panel looked me in the eye afterwards and
said, we can't do it. Our hands are tied.
Two days later a patient was--a staff member was killed in
his wing. We don't even want to know what happened, but this is
what did happen. He was 1 year, 1 year in that facility. The
abuse, the things that happened to him in that hospital and
they never, ever let us in. When he was 18, they couldn't live
without us. When he became 18, we were the enemy. We might as
well have been strangers on the street. We have doctors who
have shared with us behind the scenes some things that they
knew they were going to get in trouble with. They told us, we
can lose our jobs, but we have to tell you. We are members of
community, and people know us, so people took chances, but when
we got outside of our community, there were no changes being
taken, and we were left out.
The other thing that happens is imagine somebody who is
mentally ill being discharged back into real society. Even
under the best plans with families being involved, it is a very
difficult process. But take a look at someone who is not part
of a discharge plan that includes a support network. Our son
has been released and sent on buses, and we haven't found him
for weeks, wondering if he is dead.
HIPAA empowers homelessness. Our son has been gone. No
money, no clothes that are adequate, nothing. Gone. We look
around in shelters. Gone. We say why didn't you tell us? We
can't. HIPAA precludes that. And we say, we thought--and then
this whole idea, this notion that they have to tell us if it is
a threat to us. Well, they are not supposed to let him out if
they are a threat. So they have already decided he is not a
threat, so they won't let us do it.
So we search for him, the shelters can't tell that they are
there, and then the next thing that happens is this person who
has been released, you don't want this person released like
this. No support, isolated, in fear, frustrated, angry, and we
are his first target. Right? We are the first target.
And so people are being released every day without
discharge plans involving the family, and they have no way to
transition back into life, and you don't want that. You don't
want somebody that has psychosis as a symptom that pops up, and
by the way, this idea of anticipating and predicting when
imminent danger is coming, I just fought in the State of
Maryland for 4 months to try to get that across. Not one person
on this planet can predict the tipping point of someone with a
severe mental illness. You can't do it.
So what you try to do is you rely on who? You rely on the
people closest to that person, and who is that is the family,
but the family can't do it. We can't give recent history to the
next hospital or doctor because we can't get it, so what is
worse is as each year goes by, we have less ability to help. So
this idea that we are going to provide information to the
hospital, it doesn't work, and it is scary.
So in closing, I would like to say that HIPAA has a lot of
gaping holes in it. This is the biggest, but if there are ways
to beat HIPAA, we seek to find it, which is bad. Our son and
other people's sons and parents deserve the right to be
collaborative and informed so that they are safe and their
child is safe.
Thank you.
[The prepared statement of Mr. Kelley follows:]
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Mr. Murphy. Thank you, Mr. Kelley. Ms. Thomas, you are
recognized for 5 minutes. Thank you.
TESTIMONY OF JAN THOMAS
Ms. Thomas. First of all, I would like to thank Congressman
Braley for asking me to come to Washington to tell my story,
and I would like to thank Chairman Murphy and Representative
DeGette for holding this hearing today on this very important
subject. My name is Jan Thomas, and the story I have to tell is
a nightmare that could have prevented. My life has not been the
same since this tragedy occurred, and it changed the lives of
my entire family and my community.
On June 24, 2009, what started out as a normal beautiful
spring morning ended up being the beginning of a nightmare.
Shortly before 8:00 am, a 24-year-old former student, Mark
Becker, walked into our high school weight room, and in front
of 22 young high school students emptied his gun at close range
into my husband, Ed. Ed did not survive his injuries, and he
died on the way to the hospital. He was only 58 years old, and
he had taught and coached for 36 years.
In one quick moment, so many lives were impacted forever.
Our family lost a son, husband, father, grandfather, and
brother whom we all loved very much. The students in the weight
room that day, along with our extended community, lost a
mentor, friend, teacher, and a coach. They lost their sense of
confidence and security, and the horror of that day will be
with them forever.
Innocent youngsters, including our own young grandsons,
suddenly realized that the world has a dark side. They were
taught a horrible but truthful lesson that day. Bad things do
happen to good people for no explainable reason, even when they
think they are safe.
Our grandsons were robbed of the deep love of their
grandpa, and they will miss all of the experiences they could
have had with him. My sons lost their father, whom they loved
very much, and I lost my husband and my life partner on that
day, and we miss him every day.
But the real tragedy of that day is the fact that it could
have been prevented. Only 4 days before Ed was murdered, this
same young man rammed his car into the garage of an
acquaintance and tried to break his way into the home with a
baseball bat. When police arrived, he fled in his car, leading
the law enforcement on a high-speed chase. When the police
finally apprehended him, he was taken to an area hospital for
psychological evaluation.
Less than 24 hours before my husband died, Mark decided he
didn't want to stay at the hospital, and so not following the
advice of his doctor, Mark was dismissed.
No one knew. Law enforcement was not notified, even though
they had requested that the hospital let them know when he was
going to be dismissed. The hospital's justification for not
notifying the law enforcement prior to his release was that
HIPAA prevented this disclosure. Even his parents did not know
until Mark himself called them later that evening.
No one knew that Mark had been released, but Mark's privacy
had been protected. During the investigation into the murder,
it was revealed to us that Mark had feelings of animosity and
resentment toward Ed. We didn't know that. If Mark had come to
my home that morning and asked where Ed was, I would have
innocently sent Ed's killer directly to him and Ed to his
grave, and what a horror to think that I may have had to live
with that.
Once again, Mark's privacy was protected. Adults with
severe mental illnesses are not always able to make good
choices for themselves concerning their treatment or their
actions. They may need help of a family member or other
responsible parties to be sure they receive required treatment.
They may need outsiders to keep them and others out of harm's
way, but due to HIPAA, even Mark's parents were unable to get
requested information or help make decisions for his treatment.
So I would ask you. Is the privacy of one individual more
sacred than a life? Is it more important than the welfare of
our general public? Is it more important than allowing our law
enforcement to know when a potentially dangerous offender is
being released back into the very community that they risk
their own lives every day to protect?
Ed was an inspiration to so many in our community, and most
importantly, he was a loving son, father, grandfather, and
brother. I urge Congress to update this law so we can prevent
further tragedies like this one.
Thank you.
[The prepared statement of Ms. Thomas follows:]
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Mr. Murphy. Thank you, Ms. Thomas. Ms. McGraw will be
recognized for 5 minutes.
TESTIMONY OF DEVEN MCGRAW
Ms. McGraw. Thank you very much. I really appreciate this
opportunity, and I want to thank the Chairman and the
subcommittee for focusing on these issues which are clearly
very critical. I direct the Health Privacy Project at an
organization called the Center for Democracy and Technology,
which is a non-profit public interest and advocacy organization
that works on behalf of consumers.
We like to think of privacy as playing an incredibly
important role in making sure that people who are suffering
from stigmatizing conditions like mental illness will actually
get into treatment. Many people express, one out of six in
surveys consistently, that if they didn't have some guarantees
in confidentiality that they would not seek treatment, and that
is the reason why we have privacy laws. They are not aimed at
trying to create obstacles for people necessarily but to create
the kind of treatment environment that people with stigmatizing
conditions with want to be in.
Having said that, they are not absolute. They have lots of
exceptions, and the previous panel talked about them, some of
the members of this panel have talked about them as well, that
allow for the notification of persons in the event of a serious
and imminent threat and also notification of family members
except in cases where there has been an objection by a patient
who has the right to object. So in this case it would be either
an adult or an emancipated minor or in some States that allow
minors to consent for treatment on their own and to be able to
control their privacy rights. In that case the minor would hold
the right. If that objection has not occurred or you are not
dealing with someone who is incapacitated, HIPAA does provide
for the ability for providers to share information with family
members, with close friends, or with people that the patient
designates.
Having said that, I think it is abundantly clear from the
testimony that we have heard today that HIPAA is badly mangled
in terms of how people interpret it, and using it frequently as
a shield not to disclose information or because they fear
liability, which, frankly, is not anywhere in HIPAA, and it
is--what is incredibly frustrating to me when I hear these
stories, and I am sure it is frustrating for all of you, too,
is that HIPAA doesn't say you can't disclose. So for people to
blame this on HIPAA is just incredibly frustrating because, in
fact, HIPAA does allow those disclosures in those cases, and
where the disconnect is happening is just incredibly
frustrating to me. Again, I am a privacy advocate, but I
believe in the reasons for these exceptions. We try to take a
very balanced approach to these issues and understand the
reason why those exceptions exist, and yet for whatever reason
the myth that you can't disclose to family members, and, again,
this is--the disclosure to family members are not bound by the
potential for a serious and imminent threat.
It is the case, though, that if an individual objects,
again, if they have the competency and the power to object,
then that would be the case where you couldn't disclose. But I
would say more often than not there is, again, experiences of
the folks at this table notwithstanding, people actually want
their family involved in their care. I have had people say to
me, my mother, my elderly mother, who I am caring for, I would
like to be able to have her doctor talk to me about her
treatment and yet that office is telling me that HIPAA will not
allow it to happen. And that is so untrue and so I am
incredibly sympathetic to the frustration of people who are
told that HIPAA requires something that it doesn't, and I am
trying to figure out what we can do better in terms of
educating folks about what HIPAA does and what it doesn't do
because it sounds to me like too many people are hiding behind
it in circumstances where there are clear exceptions that would
allow for that information to be shared.
Some of the testimony of Director Rodriguez in the first
panel, frankly there was a lot more--I had a lot greater
understanding of the exception for family members than I did
before the hearing, and so that suggests to me that this
guidance, which I think is good, it is not the letter that
everyone has been talking about because the letter deals with
serious and imminent threat. This is guidance about what can be
shared with family members because often patients, in fact,
want their information to be shared with one or more of their
family members or a close friend who is helping to care for
them, and yet it doesn't happen.
And it could be made more clear, frankly, and we could find
better ways of disseminating this guidance. I mean, I know
where it is on the Web site, but there is probably lots of
folks who can't find it, who aren't aware that it exists, and
particularly when faced with a person and a healthcare facility
telling them, which is probably something that they
unfortunately believe, that HIPAA won't allow that information
to be shared, when, in fact, it does.
I am happy to answer any questions, and I appreciate the
opportunity.
[The prepared statement of Ms. McGraw follows:]
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Mr. Murphy. Thank you very much. We thank all the
panelists. I want to also say here that our hearts go out to
the families, Mr. Wolfe, Mr. Kelley, and Ms. Thomas. It is a
sad tragedy and Mr. Kelley, that you are still dealing with
here.
We are going to recognize each person for 5 minutes.
I just want to make it clear, Ms. Levine, you stated you
had some opinions in your testimony. You are not a licensed
provider, am I correct?
Ms. Levine. No, no. We are----
Mr. Murphy. And you are not a practicing therapist in this
field?
Ms. Levine. Not at all.
Mr. Murphy. OK. It is just very important for the record
because on page ten of your written testimony you said that
doctors don't want to share information, and it is, ``a
convenient excuse not to talk to families or listen to what
they know about a patient.'' You went on to say it is, ``easier
to avoid difficult conversations about prognosis and treatment
options.''
Dr. Martini, is that true that doctors don't want to know
this, they don't want to know this information, they don't want
to talk to families because it is difficult?
Dr. Martini. No. I think that the vast majority of
physicians that I work with are very interested in sharing that
information and very much want, I think, to involve families in
care. I mean, I think we know that particularly for psychiatric
patients that their prognosis is approved, that, one of the
ways I look at it is I see a patient perhaps at the very most
an hour a week, and the families are dealing with these
individuals on an ongoing basis, and I think any recommendation
that I make as a clinician is much more likely to be successful
if I am able to get the support of the family.
Mr. Murphy. Mr. Wolfe, Ms. Thomas, and Mr. Kelley, just
real briefly, just in a word or two because I don't have a lot
of time, also from your standpoint because you have also talked
to providers about these cases, do you think in these cases the
providers did not want to talk to you, or they did, but they
felt they could not because of their interpretation of the law?
Mr. Wolfe?
Mr. Wolfe. Yes. My family physician told me later that he
did want to disclose it, but he felt that he was under the
obligation of the HIPAA rules not to disclose it.
Mr. Murphy. Mr. Kelley?
Mr. Kelley. In 14 years I have never encountered a
situation where a treatment provider did not want to disclose
it. In fact, they went out on a limb and would secretly tell
us. No, I have never had that.
Mr. Murphy. Ms. Thomas?
Ms. Thomas. I can only speak for what law enforcement told
me and also what Mark's parents have told me about, and they
all had difficulty getting information.
Mr. Murphy. Thank you. Mr. Wolfe, Mr. Kelley, you heard
from Mr. Rodriguez from the Office for Civil Rights that the
law, it sounds like he is saying that the law is adequate, and
the problem is that providers aren't really aware of the law
and are unjustifiably worried about lawsuits, perhaps even
hospital administrators who pressure staff not to disclose
information or they will be fired.
Do you think that is true that it is adequate, both the way
the law is worded and in terms of the way information gets out
to providers?
Mr. Wolfe?
Mr. Wolfe. I don't think it is adequate as far as getting
out to the providers because both in my son's case with the
rehab situation, as well as my family care physician, both of
them after Justin deceased, I confronted them, and they both
told me that they definitely would have said something with
regard to informing me. However, again, with Justin signing the
HIPAA disclosure, they were not permitted to. So I do feel that
they did have an obligation. They knew that it was a life-
threatening situation with the use of heroin, but they were
obliged to follow the HIPAA regulations.
Mr. Murphy. Thank you. Mr. Kelley?
Mr. Kelley. In all due respect I fear there is a
significant detachment from reality here. Not with you, sir,
but with Mr. Rodriguez. It is underlined, unless the patient
objects, and someone that is severely mentally ill universally
wants to object. They don't believe they are ill.
So that gets thrown out the window, and the fact is that we
need to have exceptions for the severely mentally ill. It is
just plain and simple.
Mr. Murphy. Ms. Thomas?
Ms. Thomas. I can speak on behalf of the fact that I am a
volunteer EMT for our community, and the threat of lawsuit, it
prevents us even from feeling like we are able to tell direct
family members conditions of patients that we transport. So
either it is misunderstanding but that is what is emphasized to
us in our training.
Mr. Murphy. Thank you. Ms. McGraw, in your written
statement you said that 17 percent, or about 38 million, say
they would withhold information from healthcare providers due
to worries about how medical information may be disclosed. You
were citing a study.
Ms. McGraw. Yes.
Mr. Murphy. My understanding is that study was on general
health issues, not mental health or severe mental illness. Am I
correct?
Ms. McGraw. No. That is right. In the time that I had to
prepare for this testimony I looked for some more specific
statistics on persons being held back from seeking treatment
for mental health, and I didn't have----
Mr. Murphy. Sure.
Ms. McGraw [continuing]. Enough time to find something
directly on point. I did find something on the National
Alliance on Mental Illness Web site that talked about how two-
thirds of the people with mental illness do not seek treatment
for a number of reasons; the lack of knowledge, fear of
disclosure----
Mr. Murphy. Yes. I appreciate that, and I hope if you find
some other studies, could you----
Ms. McGraw. Yes. I would be happy to keep looking.
Mr. Murphy. I might also say that----
Ms. McGraw. I just ran out of time.
Mr. Murphy [continuing]. We have folks here also saying
that doctors didn't disclose information, and people are over-
interpreting the law, not disclosing it here, and you are
saying that perhaps patients are also over-interpreting that it
would be disclosed.
Let me ask you this. Could you--something very important.
You said it is badly mangled. I think those were your words.
What could be done to clarify the law? Do we need legislative
language, do we need to cite case law, do we need some
clarification from the Office for Civil Rights, more public
education? What do we need here?
Ms. McGraw. The badly mangled part is--was the reference to
the fact that we had all this testimony about what is really in
HIPAA and yet people are being told, in fact, that HIPAA is
something that it is not and with significant consequences.
You know, more guidance and better ways of disseminating it
so it is not, you don't have to look really hard for it on a
Web site absolutely is the first step that we should be
pursuing here, and ideally that could be done in conjunction
with the professional societies who have more effective
mechanisms for doing outreach to their members. You know,
having read this guidance, I am like, well, it is clear, but it
could be made more clear, more examples. In this circumstance
you can do X. In this circumstance, you can do Y.
Mr. Murphy. Thank you. We will look forward to getting your
specific recommendations.
Mr. Braley, 5 minutes.
Mr. Braley. Thank you, and I should also note, Mr.
Chairman, that Ed Thomas's sister, Connie Flaharty, is also in
the audience today. This has impacted her as well, and Jan, I
think some of the things that your testimony brought out is
there is this misperception that the issues we have been
talking about today are unique to large urban areas with a
higher concentration of people who are seeking treatments for
severe mental illness. Parkersburg is a town of 2,000 people.
Five years ago this May it was nearly destroyed by an F5
tornado, and your husband, Ed, was one of those people in the
town who rallied people to come back, put the community back
together, and one of the other things that I think is so
important about your story is that Mark Becker is someone you
and Ed knew very well.
Ms. Thomas. Exactly. Yes. He was a member of our community.
We have known him his entire life and his parents, and I know
their frustration in getting him treatment, but there again, I
agree with what they are saying. When it comes to severely
mentally-ill people, you can't classify them with someone that
has cancer or hepatitis or those kinds of things because their
thinking is just not rational, and I think there maybe needs to
be some exceptions to those rules there.
Mr. Braley. Well, and one of the other things that we know
is that from the stories that have come out, you and Ed went to
the same church as Mark Becker's parents. So it wasn't like
this was a stranger in your family, and I know that the Becker
family has expressed some of the exact same frustrations as
parents that we have heard from the other panelists in trying
to get Mark the help he needed so that he could put his life
back together, and I think that is one of the most disturbing
things about this topic is these are stories we hear over and
over and over again, and it points to a breakdown in our
ability to get people who need it the services that they need
in communities all over this country.
But one of the things that I am really interested in is how
this particular tragedy in your life has changed how people in
your community think about the problems we have been talking
about.
Ms. Thomas. Well, it is hard to speak for other people, but
I do think there needs to be more awareness of mental health. I
think this needs to be expanded on quite a bit. I don't think
there is enough resources out there for people. I think the
fact that no one knew that Mark was released and a threat was
very frustrating to people. I mean, there were a lot of victims
involved. It wasn't just our family. Those young kids were 14
and 15 years old that witnessed their coach getting shot down
at close range in cold blood, and it all could have been
prevented, and I think that is a big frustration for a lot of
people. They are just--he was not able to get out of harm's
way, and he was loose on the streets just because he wanted to
be.
Mr. Braley. Well, I think one of the other things this
points to is I lived with somebody with a severe mental illness
40 years ago, and I remember the stigma attached to mental
illness then, and I think we would like to think that we have
come a long ways as a society in dealing with mental illness--
--
Ms. Thomas. Yes.
Mr. Braley [continuing]. As something that is just as real
and impacts people's lives as much as other diseases, but I
think the reality is that there is still a lot of stigma
attached to it. We like to avoid having these conversations
unless it is impacting us personally. So I want to thank all
the panelists for having the courage to come share your
stories. I know that it has been an incredible challenge for
all of you.
And one of the things that I talked about earlier is this
challenge that family members have with adult children of being
able to have a role in making decisions about their care when
there are sometimes obstacles, and Dr. Martini, you talked
about this a little bit, and one of the questions I had raised
earlier was whether this risk to self or others standard is
still a viable way of getting patients the help they need for a
truly effective treatment. You gave examples of both sides of
the story; one where a family's intervention was
counterproductive, one where the need for family intervention
was not provided that could have been in the best interest of
the patient.
So how do we resolve this?
Dr. Martini. Well, I think, Congressman, what I would like
to do is think about what you last referred to, what is in the
best interest of the patient, what do we think is going to help
the patient most, help them in their recovery. I understand
that there are issues around the release of information and
confidentiality, and I understand that patients are sensitive
about that, but what we are talking about is not a release of
information generally out to the community. What we are talking
about is thinking about particular cases, looking at those
cases on a more individual basis, and deciding if this patient
is going to do well, what is going to be necessary, what kind
of information needs to be shared, should that information be
shared with family members, are they an asset in this
particular case, and can they help out this individual? Would
it be a good idea to share the information with the primary
care physician in their community who quite often coordinates
care in a variety of ways. That is also an asset that quite
often is not part of the process in some ways because the
patients are reluctant to have any local connection know much
about what is going on with them.
Mr. Braley. Thank you.
Dr. Martini. So it is what is in the interest of the
patient.
Mr. Murphy. Thank you. Mr. Braley, that article you
referenced before from Sports Illustrated, would you submit
that for the binder so it is in the record as well?
Mr. Braley. I would be happy to.
Mr. Murphy. That has got to be tragic for all the reasons
someone would be on the cover of Sports Illustrated, that has
got to be the saddest. It is. Thank you.
Now recognize for 5 minutes the gentleman from Virginia,
Mr. Griffith.
Mr. Griffith. Mr. Chairman, if I could pass at this time, I
would appreciate that.
Mr. Murphy. We will do that. We will go to Mr. Johnson for
5 minutes.
Mr. Johnson. Thank you, Mr. Chairman. First of all, panel
members, I would like to reiterate thank you so much for being
with us today and for your testimony. I know these are very
tough testimonies to give, and our hearts go out to you.
Ms. Levine, you suggest that healthcare workers sometimes
use HIPAA as an excuse not to share information and not simply
because they are afraid of fines or sensors. Why else would
someone withhold information from inquiring family members?
Ms. Levine. Well, because the role of a family member in
the care of someone who is, as I said, my, most of my
experience is with older adults, although I personally was the
family caregiver for my late husband for 17 years. He had a
traumatic brain injury and was quadriplegic. So I have my own
experiences with this system.
But family members ask hard questions. They want to know a
lot of information about why did this happen, what can I
expect, why are you giving this medication when it is on the
list that says this is contraindicated. I can't tell you, and
this is not to disparage the nursing profession because they
are fabulous, but I have had so many nurses say to me, are you
trying to tell me how to do my job? OK. Yes. I think I am
because my husband should not have this medication and that
medication together.
So there is a kind of--I can't tell you how many
physicians, nurses have said to me, family members, they are
pests, they are nuisances, and they are. I mean, I am not
denying that because they ask the hard questions. The patient
in the bed is in pain or is sedated, not going to be a trouble.
Mr. Johnson. OK.
Ms. Levine. So it is, I think it is a truth universally
acknowledged that family members are important on the day of
discharge, take--get them home but not necessarily in the
course of a hospitalization.
But I really think that the HIPAA scare, and I am now
concerned that there is now going to be a high tech scare
because I am already getting emails from vendors saying, we are
going to protect you from these horrible audits that are going
to happen, and if you only you hire us, you know, you will be
safe.
Mr. Johnson. Oh, yes. Every time there is a new government
regulation an industry crops up----
Ms. Levine. Yes.
Mr. Johnson [continuing]. Around, providing services.
Ms. Levine. And, so, I mean, it is not one thing. It that
things support each other----
Mr. Johnson. OK.
Ms. Levine [continuing]. Is my feeling.
Mr. Johnson. Let me quickly go to several other questions.
One of your recommendations has been for OCR to reinforce
to healthcare providers the provision in HIPAA that permits
disclosure of relevant information, protected health
information to family caregivers or others who are going to be
responsible for providing, managing, or paying for a patient's
care. How do you suggest OCR go about doing this?
Ms. Levine. Well, I think throughout--and I agree that the
Web site is one way but not the best way. I think that there
can be involving the medical professions, involving the people,
the risk managers who are doing a lot of the training,
involving the leaders and saying, this is not good patient
care. We are concerned about hospital readmissions. One of the
reasons people come back to the hospital in 30 days and cost
Medicare tons of money is that the family members who are
responsible for that care don't know what to do.
Mr. Johnson. OK.
Ms. Levine. So they bring them back.
Mr. Johnson. Do you have recommendations for CMS as well?
Ms. Levine. Yes. CMS should definitely encourage as part of
the conditions of participation in Medicare and Medicaid to
make sure that the training that they are responsible,
accountable for training the hospitals and nursing homes to
train their staff in a balanced way, and one more thing which I
didn't get a chance to say.
Mr. Johnson. Quickly. I am running out of time but go
ahead.
Ms. Levine. Just quickly. When we encounter through our
contacts with providers, patients who object to having a family
member involved, it has nothing to do with privacy. It has to
do with I don't want my--I don't want to worry my daughter, I
don't want her to----
Mr. Johnson. OK.
Ms. Levine [continuing]. Have any responsibilities. It is
not the privacy.
Mr. Johnson. Got you. OK. Mr. Kelley, you have observed
that a clear culture of fear pervaded one of the facilities
your son was admitted to. How does this culture of fear impact
decision making by those healthcare workers and facilities
tasked with taking care of your son?
Mr. Kelley. And it is more than one hospital, sir, but
essentially we are not in a position to prevent horrific things
from happening, and we have had some candid discussions with
staff and doctors in multiple hospitals, where they all
acknowledge that, they use the word, our hands are tied, due to
the HIPAA privacy rules. And so we try to go further and
emphasize the inability of the patient to take care of
themselves and make good decisions, and it doesn't phase them.
So what happens is the patient gets mistreated actually,
and so our son has come home and been on the wrong medication
and has been in a horrible condition. So it is pervasive. It is
not just isolated in one situation.
Mr. Johnson. Thank you. Mr. Chairman, I yield back.
Mr. Murphy. Thank you. The gentleman's time has expired.
Ms. DeGette for 5 minutes.
Ms. DeGette. Thank you very much, Mr. Chairman, and I would
like the panel to know that I have read all of your testimony
even though I wasn't here to hear you say it, and for those of
you have lost loved ones, my deepest condolences. I know, as I
said in my opening statement, I know how difficult it is to
have a child with a severe illness. My child has a physical
illness, not a mental illness, and she is now a freshman at
college. So I know what you have been dealing with in terms
of--and Dr. Martini, I know what you were talking about in your
testimony, too, of the parents paying the college, you know,
the college tuition, parents obviously love the child and are
deeply concerned, and yet the child is over 18, and they are
wanting to become independent, and they do have privacy issues.
It is a really hard balance especially when you are dealing
with some of these mental illnesses which as we learned in our
previous briefings in this panel from professionals, bipolar
disease manifests, which is at the root of some of the
violence, most notably suicides, that evidences itself in young
men between the ages of 18 and 25 and in young women at a
slightly older age. But this is right at the age where they are
becoming independent from their families, and most of the time
they are over 18.
So it is a hard balance because on the one hand it is like
Ms. McGraw was talking about, you want these young people to
not feel the stigma so that they will get medical treatment and
on the other hand as parents we want to know if they are at
risk to themselves or to others, and so it is a balance.
Dr. Martini, something you said just a moment ago really
struck me, which is, you know, in trying to grapple with this
issue you said that we need to look at the individual. The
doctor, we need to rely on the doctors to look at the
individual cases and to see if this is a situation where having
parental involvement or involvement of another responsible
adult would be appropriate to let them know. And I guess I
agree with that, but I guess I also in listening to the
testimony of the last panel would--that is exactly what they
were saying. What they were saying is in their interpretation
of HIPAA that is exactly what medical providers are allowed to
do.
And so I think what we need to do is we need to--providers
need to understand what their abilities are under HIPAA.
Wouldn't you agree with that?
Dr. Martini. I mean, I think that that is a very important
part. I think educating providers about HIPAA also in a way
that makes it seem like this is more of a collaboration that--
--
Ms. DeGette. Right.
Dr. Martini [continuing]. There is information to be
gained. I mean, for example, the State of Tennessee has created
a review panel of physicians that can look at cases and can
override aspects of HIPAA if that panel, and it is an objective
panel----
Ms. DeGette. Right.
Dr. Martini [continuing]. Decides that this particular
situation is worthy of that, and I think those kinds of
initiatives where HIPAA is seen as not simply a government
regulation----
Ms. DeGette. Mandate. Yes.
Dr. Martini [continuing]. But as a process, as something
that they can participate in, I think the outcome would be
better.
Ms. DeGette. I agree with that, and if we still have our
HHS witnesses here, yes, we do, some of them, is I think we
should also have our federal agencies work with the colleges
because a lot of these problems seem to come with the colleges
trying to balance the important privacy protections for their
students and also letting parents know. And, again, I think
they would have some leeway, but we would have to work with
them to let them know that.
Dr. Martini. I think it is a very good point.
Ms. DeGette. OK.
Dr. Martini. I think there would also need to be some help
for them because coordinating mental healthcare for students
some thousands of miles away would be a challenge.
Ms. DeGette. And this goes to my--the last thing I want to
talk about because it is not just the HIPAA issues. It is also
access to treatment, and I think some of you have probably seen
this in your communities. I had--I was actually at the eye
doctor, and the assistant came in, and she said she had a 19-
year-old son diagnosed with bipolar, and he had become violent.
He was--he actually put himself into a 72-hour hold and then he
was released, and he actually, you know, involved his parents,
and they were involved with it. They couldn't find any mental
health treatment for this kid in Denver, Colorado, and this is
another issue as well is, you know, once you diagnosis this,
you have got to be able to find treatment. I think, Doctor, you
probably agree with that.
Dr. Martini. Absolutely. I think work force is a big issue,
certainly in pediatric mental health services----
Ms. DeGette. Yes.
Dr. Martini [continuing]. And also I think, I kind of
alluded to this a little bit, we also need to work on access
through primary care. I mean, the thing to remember is that a
majority of the mental health problems are actually treated by
local physicians in the community, and we need to work with
them, we need to help them, we need to educate them so that
access begins locally.
Ms. DeGette. Thank you. Thank you, Mr. Chairman.
Mr. Murphy. Thank you. I now recognize the gentleman from
Virginia, Mr. Griffith, for 5 minutes.
Mr. Griffith. Thank you, Mr. Chairman. I appreciate your
patience.
Let me follow up on that. I think, Dr. Martini, you were
talking about local health professionals being involved and
trying to make sure people get treatment. Is it your opinion or
what are your thoughts, can HIPAA also stand in the way of
proper communications between, for example, the treating mental
health professional and a patient's general care physician?
Dr. Martini. I think that there have been cases that I have
worked on where the family, the patient, does not want the
local physician to know about the extent of the psychiatric
problems in part because the local physician is in the
community, knows a great many people. I think that a good bit
of that anxiety is misplaced on the part of the patient, but I
can understand it. I also think that what we need to do is we
need to work with these local clinicians and physicians to
involve them more in mental healthcare to educate them to make
them part of the mental health system so that families
recognize that the help that they provide is going to be in the
patient's and the family's best interest.
Mr. Griffith. Because one of my concerns that we heard from
a previous hearing was it takes--or informal hearing but it
took 18 months for the average person with a mental health
problem to, you know, get to see a mental health professional,
and that is of concern and something that we need to address,
but it would seem to me that your primary care physician might
be in a position to shorten that time period just by making the
referrals or by saying this is not such a big deal, and when it
is a trusted family physician, a lot of times they can be
helpful in that regard.
Also in following up, if the professional is not in the
immediate community, I represent a rural area, so the mental
health professional may be, you know, the next community over,
30, 40, 50, 60 miles, maybe more, and if they can then
communicate with the local healthcare provider, it does create
some benefits there.
From the perspective of the patient, why do you think such
communication, free communication between the healthcare
providers is important?
Dr. Martini. I think that on the part of the patient what
it will allow them to do as you were pointing out is receive
services, I think, more efficiently. I think that the local
practitioners understand the community, understand what is
available in the community, what is available not simply from
the standpoint of medical services and mental health services
but also within the community, within schools. They are
familiar with that. I think that our--what we need to do as
mental health professionals is we need to work with them to
teach them what they can do, to get them comfortable with what
they can do in their practices, and also to teach them when
they can, when they should refer to us, and then as part of
that we need to be available. We need to make ourselves
available, and that is a big question. We do need to increase
the size of our workforce but also we need to do this in a much
more efficient and effective way.
Mr. Griffith. Thank you very much.
Ms. McGraw, I noted in your testimony that the fear of
liability for violating HIPAA's provisions coupled with
misunderstanding of its provisions can be a recipe for not
sharing.
Ms. McGraw. Yes.
Mr. Griffith. And I am just wondering if you are familiar
with and I hate to ask Ms. Thomas, but I would ask, are you
familiar with suits that go the other way, where permission
could have been granted. I mean, in Ms. Thomas's case, you
know, the police asked to be notified, he clearly--the police
had made a determination he was dangerous to the community,
they didn't want him out of on the streets, the hospital then
used HIPAA as a shield to say, oh, well, we couldn't tell the
police anything.
So I am just wondering if you, Ms. McGraw, have heard of
any suits, and Ms. Thomas, did you all even consider suing them
for letting this dangerous person back out on the streets when
HIPAA would have allowed it?
Ms. McGraw. So I can tell you that HIPAA does not actually
have any provisions that enable anyone to sue on enforcement of
it. So either a patient in terms of privacy rights or someone
else in terms of sort of over-interpretation. Keep in mind also
that HIPAA's allowance of disclosures for these reasons that we
have talked about is permissive. It still relies on the
judgment of healthcare providers to make the judgment call
about what is in the best interest of the patient.
Having said that, we need to keep in mind that HIPAA's the
floor and that there are State laws that may provide greater
protections, and they may medical privacy statutes that could
be used for--to impose liability in those circumstances.
But I certainly have never heard of anybody being sued for
not releasing information except in the case of information
that a patient asks for that is about them, because you are
required under HIPAA to disclose that information. You can be
held accountable under HIPAA for not doing so.
Mr. Griffith. I guess my concern that, and I was a
practicing attorney for a lot of years, but my concern is that
is one of the ways people like to hate lawyers, and I
understand that, but that is one of the ways you sometimes get
rectification in some of these cases, not that the money is
important. It can't bring anybody back, but it may keep
somebody from making that mistake again. I mean, here we had an
individual in your case, Ms. Thomas, who the police bring in,
he has just run his car into the back of a garage, he is
clearly either a danger to himself or to others. They bring him
in, they want psychological evaluation because he is a threat
to somebody, and the hospital just lets him walk out even
though the police ask for notification. I can't think of
anything else that would--and to me that is the classic
definition of negligence, and I am very sorry. If you want to
answer you can but----
Ms. Thomas. No. It is fine. It was considered as far as
looking into a lawsuit, however, we were unable to get Mark's
records due to HIPAA, and we just decided that it probably
wouldn't be--it really wasn't going to benefit anybody at that
point in time to proceed with a lawsuit.
Mr. Griffith. And I respect that decision.
Mr. Murphy. The gentleman's time has expired.
Mr. Griffith. Thank you. I appreciate it, Mr. Chairman, and
I yield back.
Mr. Murphy. Recognize Ms. Schakowsky for 5 minutes.
Ms. Schakowsky. Thank you, Mr. Chairman.
First of all, I just want to say that I hope in future
hearings and other events that we will include testimony and
participation from the patient community, and I know that there
is some--I know there is a discussion right now----
Mr. Murphy. Excuse me.
Ms. Schakowsky [continuing]. About including testimony----
Mr. Murphy. We cannot--we are not permitted to have any
outbursts, and I would ask that members not say things that
might also provoke some outburst. So I ask the folks be--just
continue on. Go ahead, Ms. Schakowsky.
Ms. Schakowsky. OK, and I know there is some discussion
about including written testimony, highly footnoted, into the
record, and I would certainly recommend that that be done
without much ado.
I wanted to--and let me thank especially the family members
who came here with your stories. I know it has got to be very,
very hard to do, and it is much appreciated.
So I want to understand the examples that, a couple of
examples that you gave. You had a patient, a former patient
with a mild form of autism, and eventually his parents went to
court against his wishes because they said their son could not
care for himself and thus remained dependent, and you conclude,
``Unfortunately, the subsequent ruling in their favor was
counter to our goals of psychiatric treatment and derailed his
progress in therapy.''
So are you saying that that was a bad decision that the son
should have been able to do what he wanted to do?
Dr. Martini. No. What I was saying was that because the son
would not allow his parents to be involved in his affairs, nor
would he let them be involved in therapy, so I couldn't
incorporate them into any of the programming that I was trying
to organize, any of the treatment that I was trying to
organize, couldn't involve them in the medications that he was
prescribed, and they had serious concerns about how he was
going to function. Because we couldn't negotiate that, because
he continued to refuse to allow them to participate, this was
the only recourse that they had, it went counter to our therapy
because the purpose of the therapy for me was to make him more
functional, that my goal was----
Ms. Schakowsky. I understand that, but what would--at the
point that you are saying if they had been involved earlier and
I understand that, but at the point of someone making a
decision, an adult making a decision about what they want to
do, is there--I am trying to understand what a better outcome
might have been and could it have been done without going--
having to go to court.
Dr. Martini. I think that is one of the reasons I put it in
there is because I was searching for another way to have a
better outcome without having to go to court. If there was a
mechanism, for example, similar to the thing I mentioned in
Tennessee where there was an opportunity to appeal or to
present the case in front of a review board involved in HIPAA
to say this is what is going on in this case, I think it is in
this individual's best interest to have the parents involved,
to have them actively participate because I think it is more
likely that this individual is going to be successful. His
treatment is going to be successful, and his life, I think, is
going to be less traumatized. If you have an opportunity to do
that and there is a means to modify what is happening with the
HIPAA regulations in these particular cases, I think that it
would be an advantage not just for the family but also for the
patient.
Ms. Schakowsky. So you asked the question, if there is a
bias in these situations, should it be towards parental
involvement rather than away from it. What do you conclude?
Dr. Martini. Pardon me?
Ms. Schakowsky. What do you conclude? If there is a bias in
these situations, should it be toward parental involvement
rather than away from it?
Dr. Martini. I think that if there is a bias in the
situation, you know, as a child and adolescent psychiatrist, my
bias has been to involve families. We involve families as often
as possible in treatments, and I think that for a variety of
reasons, and I think if there is going to be a bias in that
situation, my recommendation would be that it be toward family
involvement, particularly if there are no specific reasons
within that family, if there are no contraindications within
the family, nothing that would adversely affect the patient.
Ms. Schakowsky. Just wonder, I mean, and I am not weighing
in on either side, but I think there are people in the
independent living community that would feel that a young adult
with autism, that there may be some better ways for that
individual to live in the community with support, help, et
cetera, rather than as you used the word, dependent, at home.
Do you see that as part of the negotiation that might
involve everyone?
Dr. Martini. Absolutely. I mean, I think in this particular
case the goal for this patient was greater independence. What
the hope was in treatment was that he would be able to manage
his affairs, that the level of anxiety that he felt in new
situations would go down, that we would increase the
capabilities that he had to manage his medications. The sense
was that having his parents involved, I think, would have
expedited that process.
Ms. Schakowsky. Thank you. I yield back.
Mr. Murphy. Thank you. Recognize Ms. Ellmers for 5 minutes.
Mrs. Ellmers. Thank you, Mr. Chairman, and I would also
like to say to the panel, thank you so much--and I am going to
get emotional--for coming and sharing your stories because this
is the only way we are going to change anything in mental
health. I know how difficult it is for you to come forward, but
I can just say how much we appreciate your input so that we can
make the right decisions moving forward.
With that I would like to start, Ms. McGraw, thank you for
your comments to my colleague. You know, one of the areas, as a
nurse, and Ms. Levine, I completely I associate myself with
your statements because I think sometimes it is easier to just
give a blanket, hey, you don't know what you are talking about.
You are the family member. Anyone who knows better for your
family is you. So, unfortunately, that is one of the downfalls
of nursing is sometimes we share our opinions a little too
openly.
But I am concerned about the misconception of lawsuits
because as we know, there are so many frivolous malpractice
lawsuits out there. This is one of those gray areas where
healthcare professionals do not feel that they are protected.
Certainly HIPAA violations can be weighed against them, but at
the same time as far as malpractice, that is not necessarily an
avenue that will be taken. Am I correct with your testimony?
Ms. McGraw. Yes. Well, certainly there is nothing in HIPAA
that would enable someone to be sued. Again, to the extent that
you have seen sort of any lawsuits in this space around privacy
violations, they are filed under state law provisions.
Mrs. Ellmers. OK.
Ms. McGraw. And I don't do malpractice work, but, again, if
you are being--if you are facing a malpractice lawsuit, that is
a State law action.
Mrs. Ellmers. Perfect. Thank you, and Mr. Wolfe, I would
like to ask you a few questions.
Mr. Wolfe. Thank you.
Mrs. Ellmers. With your situation especially, and as
sensitive as it is, again I thank you for being brave and
sharing that with us. I read over your testimony to find that
you were in a situation where you knew what was happening to
your son, you knew that there was a drug addiction, and because
of that behavior on his part with the manipulation that they do
so well----
Mr. Wolfe. Right.
Mrs. Ellmers [continuing]. He was able to manipulate and
then kind of get his way.
Mr. Wolfe. Yes.
Mrs. Ellmers. And then you were able to get him into a
treatment facility but then you were told that they could not
share information with you because of HIPAA. Correct?
Mr. Wolfe. Exactly, and the manipulation, the lying that
goes along with addiction from what I have learned from my son
and from others since this has happened was just to give you
one quick example, I wanted him to go into an inpatient
treatment program immediately, and he said to me, Dad, I don't
want to go into an inpatient treatment because I don't want to
start using heroin or crack cocaine. And I as a parent had to
make the decision what to do----
Mrs. Ellmers. Yes.
Mr. Wolfe [continuing]. And I did my research and I did
hear that people do smuggle in----
Mrs. Ellmers. Yes.
Mr. Wolfe [continuing]. Heroin and crack cocaine, and there
are a lot of other users than Percocet using, which is what he
had indicated that he was doing to the family----
Mrs. Ellmers. Yes.
Mr. Wolfe [continuing]. Not letting us know that he was
doing heroin. So, therefore, the lies and manipulation
unfortunately, we sent him to an outpatient which he said he
would agree to go to, and when I tried to confront the
outpatient counselor for the first couple of weeks I was denied
any access to any records or be told why he was there.
Mrs. Ellmers. You know that unfortunately is a story that
we continue to hear, and I do agree with you. I do think that
there are some changes that need to be made. More
clarifications, I think, than anything so that both healthcare
professionals, family members, and patients can all understand
a little better what can be shared and what cannot. So I thank
you.
Mr. Wolfe. Thank you.
Mrs. Ellmers. Dr. Martini, I have just about 30 seconds
left, but I do want to say just very recently I was at the
Partnership for Children in Cumberland County, North Carolina,
I represent in the second district of North Carolina. We had a
lengthy discussion about mental illness, especially in relation
to children. I have a very good friend whose son is autistic
and now is starting to show signs of depression and some,
beginning signs of mental illness. They are having an
incredibly difficult time trying to find the correct physician
for him because of his autism that had already been diagnosed.
Quickly, could you just say a few words about that?
Dr. Martini. I think that the availability of services is a
critical issue. I think at child and adolescent psychiatry we
need to expand our workforce not just among psychiatrists but
with all child and mental health professionals. I think we
also, as I alluded to before, we need to work with community
physicians. We need to work with schools. There are ways to
provide services for children locally that can be efficient and
effective beyond simply going to a tertiary center.
Mrs. Ellmers. Thank you so much. I appreciate the Chairman
giving me a few more seconds. Thank you.
Mr. Murphy. The gentlelady's time has expired.
Mr. Scalise is next, but I understand he is going to allow
Dr. Cassidy to go first.
Dr. Cassidy, you are recognized for 5 minutes.
Mr. Cassidy. Thank you, Mr. Chairman, and thank you, Mr.
Scalise.
Every one of you, thank you for your note of reality.
Ms. McGraw, clearly we are all concerned about privacy and
yet you can respect that there is a certain ambivalence that we
must have or that is exhibited by this. So thank you all.
Ms. Levine, the way that you said that the HIPAA laws
should be written in something that a patient understands, I
put exclamation mark, exclamation mark, exclamation mark
because it is written to avoid liability, not to inform people
of what their rights are.
Now, thank you, all.
Dr. Martini, what a great name for a psychiatrist.
Dr. Martini. I like it.
Mr. Cassidy. I asked Mr. Rodriguez a question, and you put
here, if you had a patient who was--if Lithium is still used
for bipolar, and if the level is declining but the patient is
still compensated, would you feel that current HIPAA laws would
allow you to speak to the parent of someone who is emancipated
by age or by law that, listen, if this Lithium level goes any
lower, they are going to have a psychotic break. This is not an
immediate danger, but Mr. Rodriguez seemed to indicate that
that would permissible. Would you accept that in your practice
that is what most psychiatrists or whomever are doing?
Dr. Martini. If the patient explicitly stated that he did
not want that information shared if the patient was not in
imminent danger to self or others, I think most psychiatrists
would believe that they should not share that information.
Mr. Cassidy. Now, if the patient had a history of being
non-compliant with Lithium and having bipolar episodes and
creating some of these terrible heart-rendering stories
occurring, would that change the calculus, or would it still
be, no, we cannot do it?
Dr. Martini. I think that what--when I talk to colleagues
of mine about that situation, if they are dealing with a
patient that they know is dangerous, if they are non-compliant
with their medications, they inform families and significant
others, and they take the risk that they may be in violation of
HIPAA because they believe that it is in the best interest of
the patient.
Mr. Cassidy. Now, it is interesting because you say they
take the risk, and yet that is a perception and yet some of
what we have heard is that that should not be a risk. It should
be kind of like, wow, don't worry. It is not a risk, but it
tells me that there is an ambiguity even among people who are
full-time professionals. Would you accept that?
Dr. Martini. Well, I think that that is true. I think that
the problem is that it is that idea of waiting until imminent
danger. A patient can be non-compliant on medication and for a
period of time look pretty stable, and you know that
eventually----
Mr. Cassidy. Now, not to be rude but we know that there are
going to be a pattern of episodes, and so we know, man, he is
off his Lithium. I see his level going down. Boom. It is going
to happen again. Now, he doesn't pull a gun, he doesn't do
anything terrible, but he does live under a bridge, he does
leave his family, he does sell all his possessions and run down
the street, whatever.
In that would there be ambiguity among your colleagues
whether they are at risk?
Dr. Martini. I think that if when they are seeing the
patient, if the patient appears stable and is doing well but
they know they are non-compliant with the medications,
understanding that mood disorders quite often are episodic, I
think that there would be some concern if they told the family
but they understand that in many situations they need to do
that because the patient has a history.
Mr. Cassidy. So, again, there is a perception they are
running a risk?
Dr. Martini. I think there is a perception that they are
running a risk.
Mr. Cassidy. Now, Ms. McGraw, Mr. Kelley used the term, I
am not quite sure how to pronounce, but I think we are all
familiar with it if we have a teenager. On the other hand, his
is far more dramatic than that. A year of no insight. Now, this
gentleman, his son said that his parents could not know his
history, and yet he had no insight. We are not quite sure how
to address that. What would you suggest?
By the way, I was also struck as smart as you are and you
are an expert in privacy, you learned something from Mr.
Rodriguez's testimony. I will tell you, an ER physician seeing
20 patients a night who is not in your specialty, not hearing
this testimony, there is no way that ER physician, there is no
way that she can actually be as facile with this information
that we are demanding.
What suggestions would you have as to regards of Mr.
Kelley's son?
Ms. McGraw. Well, one of the things that we have had a lot
of conversation about and when I said that I learned something
from Director Rodriguez this morning was how the concept of
incapacity plays in the capability to share information with
family members, which is not contingent on serious or imminent
risk but circumstances under which a mental health professional
can make a judgment about talking to a family member when they
believe it is in the best interest of the patient, which is in
circumstances when the patient is not around to object or in
incapacity. And in looking through the guidance that is right
in front of me about the ability to talk to family members, the
issue of this incapacity which is, in fact, in the regulatory
language, it is not really explored in very much detail.
So it does leave a lot of uncertainty on the part of
providers about how they are--you know, how do they comply with
that and what does that mean, and it certainly would be helpful
to have the guidance explore that issue in a little more detail
in my opinion.
Mr. Cassidy. Thank you very much. I yield back, and thank
you, again, Mr. Scalise.
Mr. Murphy. Thank you. Mr. Scalise, you are now recognized
for 5 minutes.
Mr. Scalise. Thank you. Thank you, Mr. Chairman, for having
the hearing, and I especially want to thank those family
members who have been impacted by mental illness for coming
here and sharing your stories with us. We had I thought a real
helpful forum back on March 5 where we had some other family
members, including Pat Milan, who is from my district, whose
son, Matthew, took his life, we being treated for mental
illness. They, you know, they actually thought they were making
progress. Both Pat and his wife, Debbie, were trying to get
information from the doctor, from the treatment centers, and
were not able to get that information, and HIPAA was being
thrown up as the reason that they couldn't get access. It
turned out after the fact, unfortunately, after he took his
life, that in his file he had actually authorized his parents
to have access to information, and so it was just incredibly
frustrating, angering, you know, for us hearing this at the
forum that we had but especially to them as parents who were
trying to get the right kind of help for their kids, for their
son, and just couldn't get that access.
And so when we hear these stories, and I know, Ms. McGraw,
you talked about it, Ms. Thomas, that people hiding behind
HIPAA when it turns out that HIPAA really may not be the
impediment. How do we get some clarity in HIPAA to remove this
gray area, if it is even in fact gray, that is stopping vital
information from being shared with family members, you know,
and even in cases where these patients want their parents to
have that access, and yet it is being denied.
If, you know, anybody from Dr. Martini and maybe go across.
If we can try to figure out what is this disconnect that is
stopping this information from being shared when the law by
many people's own interpretation doesn't preclude that
information from being shared.
Dr. Martini. I think the thing that is missing in these
situations is a discussion of the clinical presentation and
looking at these cases on a much more individual basis and
providing within the law some flexibility for whether it is
appeal or whether it is involvement by clinicians so that there
is an opportunity for a psychiatrist, a psychologist to present
the case to an objective body to make a request for
modifications in HIPAA in those particular situations.
Again, thinking about what is in the patients' best
interests and to have that objective body rule on that process
I think somehow making it feel as though this is not simply the
government telling people what to do, but it is the government
giving people an opportunity to protect their rights but also
to ensure the patients get the best care possible.
Mr. Scalise. Ms. Levine?
Ms. Levine. I think we need to start with medical
education, nursing education, and all other kinds of education
to have objective people presenting the rules of HIPAA, what is
permissible, so forth, not the risk managers. I am sorry if
anybody here is a risk manager, but I think this perception of
the legal liability, yes, anybody can sue anybody for anything,
but the real risk is in the security of the electronic data,
and that seems to have been ignored in all of this HIPAA scare.
The Washington Post did a----
Mr. Scalise. And I apologize. I have only got a minute
left, and I want to get to the four remainder----
Ms. Levine. Yes. So I think we need to do the education in
an objective way, balanced way, and think about the patients'
best interests.
Mr. Scalise. Thanks. Mr. Wolfe.
Ms. Levine. Definitely include the family.
Mr. Wolfe. Yes. I just want to say that I feel that the
parents, it is very important for parents to be apprised of
what is happening with their children, even when they are
legally emancipated, and I think that is important to be put
into because of the Obamacare since we do take care of them
until the age of 26 under our insurance, I would not have lost
Justin if I was made aware of what he was going in for. So I
think the parents have to be made aware. We are the best
caregivers with regard to our children, and there has to be an
exception with regard to that.
Mr. Scalise. Thanks. Mr. Kelley.
Mr. Kelley. I would like to ask that the committee start
expanding the definition of a family member beyond a parent
because there are other members of the families that are in
these roles, but quite frankly, change is hard, and I want to
thank Ms. McGraw from the bottom of my heart because it is
taken so long to hear what she just said. We need to change
things, and sometimes you can't get change unless you change
things. There has got to be a carve out for the severely
mentally ill or this unless the patient objects clause will
rule the world.
Mr. Scalise. Thanks. Ms. Thomas.
Ms. Thomas. I guess I would kind of agree with what he
said. I think we need to be made more aware of what HIPAA
actually does prohibit, and I do think there probably should be
some special clauses there for the mentally ill.
Mr. Scalise. Thanks. Ms. McGraw finally.
Ms. McGraw. Yes. Lots more guidance, clear, understandable,
disseminated to places that people can easily find it, maybe in
a hotline for questions.
Mr. Scalise. Thank you, Mr. Chairman. I yield back the
balance of my time.
Mr. Murphy. The gentleman's time has expired.
At this time we have finished the testimony. I understand
that the Ranking Member has a unanimous consent request. I do
want to say this.
This committee has a practice of only accepting sworn
testimony. We are going to be asked to accept a letter signed
by a number of organizations which states in its first
paragraph that they are submitting a statement for the record
in advance of the hearing. I want to say that we only became
aware of this at 7:15 this morning, and we have not had time to
fully review this statement. In this case it is not a letter
but as I said before, a ``statement for the record,'' which
does not follow the tradition of this committee for sworn
testimony.
Moreover, this is a point of personal privilege for the
Chairman. One of the groups who have signed this letter for the
record has repeatedly circulated false statements about the
Chairman and Ranking Member and have repeatedly and purposely
misrepresented the serious and important work we are doing here
on behalf of patients, families, healthcare providers, and the
public. They have repeatedly and deliberately misrepresented
the committee work with these false statements.
Thus, in this case submitting a statement for the record
without it being sworn testimony is of concern to the Chair,
and I yield to the Ranking Member for her statement.
Ms. DeGette. Thank you. Well, Mr. Chairman, I would ask
unanimous consent to place a letter dated April 25, 2013, about
the position of these organizations regarding HIPAA. It is
signed by the American Civil Liberties Union, the Autistic
Self-Advocacy Network, and the Baseline Center for Mental
Health Law, and I would ask unanimous consent to put this in
the record as the opinion of these organizations.
As we have discussed before, I have been on this
subcommittee now for 16 years, Mr. Chairman, and it has always
been the practice of the committee to take testimony under
oath, and you are absolutely correct that this letter obviously
is not under oath. It has also been the practice of this
committee, though, to get extensive information from folks who
might have expertise or opinions or otherwise, and I have seen
this happen numerous times from both sides of the aisle. Simply
accepting a document into the record does not necessarily imply
agreement with the position stated in that document by either
the Chair, the Ranking Member, or any other member but rather
it helps to give a more full picture of what people think.
But I agree with you. I do not consider this April 25
letter to be testimony or to substitute for testimony. I
believe that it is a statement of that group, and we have done
that. I have got many examples here I could give, but in the
interest of time I won't. I simply ask for the Chair's comity
in putting this in and look forward to working with you so that
we can clarify documents that will be put in in the future.
I would also note we also did put an article from Sports
Illustrated in the record today. So it seems to me this letter
would be appropriate.
Mr. Murphy. I thank the Ranking Member, and out of my
respect for the Ranking Member and understanding some of the
unique circumstances in this case, for the unanimous consent we
will accept this into the record at this time.
I do want to thank the panelists today in continuing our
series to deal with this critically important issue for the
American people. Not since John F. Kennedy was President I
think have we had such a focus on the issues of mental health
and mental illness in this country.
Your statements today, the passionate statements from the
family members, and, again, our sympathies and our prayers go
out to you, the expertise, Dr. Martini, Ms. Levine, and Ms.
McGraw, and those in our first panel, I ask that you stay in
contact with us. We have a great deal of respect for what you
have given to us today and look forward to working with you.
I would like to also add this. I am very proud of the
committee members on both sides of the aisle. I think that the
members here have shown an absolute dedication to working on
this. The statement we had earlier today, there is something
like 38,000 suicides, 700,000 emergency room admissions for
people who have attempted harm to themselves, and all the
issues involved. This committee is focused more than any other
subcommittee I think in Congress in our memory and I deeply
thank the Ranking Member for her compassion and her passion in
this. I also thank Mr. Braley for his bringing Ms. Thomas in
today.
Again, thank you all very much. I would like to say in
conclusion that I remind members they have 10 business days to
submit questions to the record. I ask the witnesses to all
agree to respond promptly to any questions we forward to them.
With that this committee is adjourned.
[Whereupon, at 11:35 a.m., the subcommittee was adjourned.]
[Material submitted for inclusion in the record follows:]
Prepared statement of Hon. Tim Murphy
Last month, I convened a bipartisan forum to address a
difficult, painful, and much-ignored topic: severe mental
illness and violence. At our forum, Pat Milam told us about his
son, Matthew, who had paranoid schizophrenia. For years, Matt
suffered before taking his own life at just 22 years old.
During that forum, Mr. Milam explained that his son's
doctors were unwilling to share concerns about Matt's high risk
of suicide. Mr. Milam believed that the inability to receive
and discuss crucial information because of HIPAA was a
contributing factor in his son's death. Another witness, Liza
Long, dreaded the difficulties she would face trying to remain
involved in her own mentally ill son's care once he turns 18
due to privacy restrictions in HIPAA.
I've been convening regular public forums in my district to
discuss the state of our damaged mental health system. At each
discussion, parents testified about the HIPAA-created
challenges they experienced in getting the best care for their
young-adult mentally ill children. As I have just mentioned, in
some of these cases, the outcome was tragic.
In 2002 my constituents, Charles and Debi Mahoney, lost
their son, Chuck, to suicide. The warning signs were there.
Chuck struggled with severe depression. His fraternity
brothers, his ex-girlfriend, and college therapist all knew he
was in danger and warned the college. But college
administrators said federal privacy laws prevented the school
from notifying Chuck's parents about his condition. As the
light was chased from this young man's heart, those who were in
a position to help did not.
The stories of the Mahoney's, the Milam's, and those we
will hear today compel us to act with care and compassion as we
develop ways to overcome institutional barriers to quality
mental health treatment.
Ultimately, parents may be in the best position to help
children suffering from significant mental illness by providing
emotional support, medical history, and coordinating care with
various mental health professionals.
Today we will examine the ways in which federal privacy
laws, beginning with whether HIPAA, applied properly or
improperly, interferes with the quality of patient care or
compromises public safety or both.
To be sure, HIPAA's obstruction of health information-
sharing between provider and family in no way is limited to
mental health. Some of our witnesses will testify that a
widespread misunderstanding of what HIPAA says can prevent
individuals with serious long-term medical conditions from
obtaining appropriate care.
HIPAA, as initially conceived and enacted, reflected an
effort to replace a patchwork of state laws and regulations
impacting the confidentiality of medical information. From the
start, HIPAA was accompanied by considerable anxiety on the
part of providers, or the ``covered entities.'' Fearful of new
penalties for violating HIPAA, doctors and nurses were refusing
to even talk about a patient's illness with caretakers, all of
whom were caretakers, spouses, siblings, or those managing the
affairs of their elderly parent.
Unfortunately, ``if you want to be safe, don't tell anyone
anything'' became the prevailing attitude at the expense of the
patient.
HIPAA has implications that go beyond healthcare into the
arena of public safety. According to data from the Government
Accountability Office, the records of 1.5 million people who
have been either involuntarily committed to mental health
treatment, or deemed mentally incompetent by a court of law,
and are therefore prohibited from owning a firearm, are missing
from the National Instant Criminal Background Check System,
also known as NICS.
Many states have said confusion over HIPAA has prohibited
them from sharing these records with FBI and helping to keep
firearms out of the hands of the violently mentally ill.
I'm encouraged that a letter sent by our committee in mid-
February spurred the Department of Health and Human Services to
announce last Friday plans to reform HIPAA so states could
upload these records into NICS. I appreciate the work on this
issue by HHS Office of Civil Rights Director Leon Rodriguez,
who will testify here today.
Our goal with this hearing is to peel away the numerous
layers of misinformation surrounding HIPAA so that we can
ensure patients are getting the right treatment and the public
is kept safe. Sometimes this may involve communication with the
parents or family of a patient, who often possess unique
insight into their loved one's condition. At other times it
involves communication with law enforcement, so providers take
the right steps to report threats of violence.
To that end, we will be hearing first from Mr. Rodriguez
and Mark Rothstein. Mr. Rothstein is a professor of law and
medicine at the University of Louisville, and a noted expert on
the HIPAA privacy rule. From 1999 to 2008, he served as chair
of the statutory advisory committee to the Secretary of HHS on
health information policy.
Next, we will hear from a panel of practitioners and family
members who will comment on their personal experiences with
HIPAA. Dr. Richard Martini is a Professor of Pediatrics and
Psychiatry at the University of Utah School of Medicine. Carol
Levine directs the United Hospital Fund's Families and Health
Care Project, which focuses on developing partnerships between
healthcare professionals and family caregivers.
I want to especially thank the family members who are here
today--Gregg Wolfe, Ed Kelley, and Jan Thomas. Gregg's son,
Justin, who was diagnosed with a mental illness and had a
substance addiction, died of a heroin overdose last December.
Ed's son, Jon Paul, has had severe mental illness for the last
14 years. These fathers' efforts to obtain the best possible
treatment for their sons was repeatedly stymied, in no small
part due to misinterpretations of HIPAA by those responsible
for their care. Jan's husband, Ed, a beloved high school
football coach, was murdered in 2009 by a young man with mental
illness. The parents of her husband's killer believe that they
were frustrated by HIPAA in trying to understand the full
extent of their son's paranoid schizophrenia. To Gregg and Jan,
I want to extend our deepest sympathies.
We also have with us today Deven McGraw, Director of the
Health Privacy Project at the Center for Democracy and
Technology. This is an important subject, and I look forward to
exploring this issue with my fellow subcommittee members at
this hearing.
# # #
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Prepared statement of Hon. Steve Scalise
Mr. Chairman, families across America are grieving and
searching for answers about why America's mental health system
has failed them and how it can be fixed. At the center of this
investigation is a focus on the Health Insurance Portability
and Accountability Act, otherwise known as HIPAA, which was
passed more than fifteen years ago in an effort to promote
patient privacy through the protection of health information
and records. HIPAA has been highlighted as the source of many
communication issues and roadblocks between patients,
providers, and parental guardians. I will be submitting a
series of questions for the record on behalf of my
constituents, Pat and Debbie Milam, who tragically lost their
son Mathew and experienced many obstacles within the mental
health system. Mr. Chairman, I am committed to helping the
Milams and other families in similarly frustrating situations
get to the bottom of these systemic failures in America's
mental health system. I appreciate your interest and look
forward to continuing to work with you on this important issue.
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