[Pages S11346-S11349]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

STATEMENTS ON INTRODUCED BILLS AND JOINT RESOLUTIONS

By Mr. UDALL, of New Mexico (for himself and Mr. Bond):
S. 2760. A bill to amend title 38, United States Code, to provide for
an increase in the annual amount authorized to be appropriated to the
Secretary of Veterans Affairs to carry out comprehensive service
programs for homeless veterans; to the Committee on Veterans' Affairs.
Mr. UDALL of New Mexico. Mr. President, tomorrow we will observe
Veterans Day, a day to honor the millions of men and women who put on
the uniform to defend our Nation. In communities across the Nation, we
will gather to thank all veterans for their service, for their having
risked their lives so that the rest of us could enjoy freedom.
I rise to offer legislation that is meant to honor veterans who are
too often forgotten. Tonight, on the eve of the day meant to highlight
their heroism, more than 130,000 veterans will be homeless, left
without a home and without a warm meal. For many, they are on the
streets with their families--husbands and wives and children left
without any safety net. Perhaps they recently lost their job. Perhaps
they recently lost their home to foreclosure. Why they are on the
streets matters less than why we have left them on their own.
When coming into office, President Obama set a goal of ending
homelessness among veterans within 5 years. This is a goal that I
strongly support. VA Secretary Shinseki, himself a decorated veteran,
has aggressively taken on this challenge, focusing efforts and funding
toward eradicating homelessness.
Last Friday, I rose on this floor to increase funding for the
homelessness and grant per diem program to the fully authorized amount
of $150 million. This vital program has produced real results, offering
transitional housing to veterans and their families and allowing
organizations to construct and renovate facilities that can provide a
multitude of services. I am hopeful that we will see this amendment
pass and this level of funding included in the final bill.
However, if we are going to reach the President's goal of ending
veterans' homelessness in five years, more will be needed. For that
reason, I am joined today by Senator Bond in introducing S. 2760,
legislation to increase the authorization of the grant and per diem
program to $200 million. This increased funding can provide hundreds,
perhaps thousands, of new beds and facilities for veterans in all 50
States.
Congressman Harry Teague introduced similar legislation earlier this
year in the House where it has been marked up in subcommittee and is
awaiting further action. I am hopeful that we will see Congress stand
up to this moral obligation and provide the full resources needed for
the thousands of veterans who have no home, who have no hope.
Last week, as I offered my amendment, I read a letter from a 15-year-
old Boy Scout from Albuquerque. His father and grandfather are veterans
and he is planning to follow in their footsteps and join the military
himself when he is old enough. This young man wrote to say how angry he
is that we are not doing enough to help our homeless veterans. ``These
men and women are doing what they were called to do by our
government,'' he wrote, ``but then they come back and are treated so
poorly by everyone. We, as a Nation, need to do more to help our
veterans.''
To the smart young man who wrote me that letter and to all of
America's veterans, this bill builds on efforts to meet our country's
moral obligations to the men and women who so bravely served our
country. I thank Senator Bond for his support and I urge fast action to
move this legislation forward.
______

By Mr. UDALL of Colorado (for himself and Mr. Bennet):
S. 2762. A bill to designate certain lands in San Miguel, Ouray, and
San Juan Counties, Colorado, as wilderness, and for other purposes; to
the Committee on Energy and Natural Resources.
Mr. UDALL of Colorado. Mr. President, today I am introducing the San
Juan Mountains Wilderness Act of 2009. This bill is the Senate
companion to the bill introduced by Representative John Salazar in the
House of Representatives.
I want to thank Representative Salazar for all of his great work in
bringing this bill forward. I am proud to sponsor this legislation in
the Senate along with my Colorado colleague, Senator Bennet.
The San Juan Mountains Wilderness Act would designate about 33,383
acres in southwestern Colorado as wilderness, and about 21,697 acres as
a special management area. It would also withdraw about 6,596 acres
from mineral entry lands within the Naturita Canyon.
The bill is the result of the extensive work by many people to
develop a collaborative approach to wilderness proposals and land
protection designations. Representative Salazar and his staff worked
with the affected Colorado county commissioners and interested
stakeholders in developing this legislation. It is crafted to take into
account the various ongoing uses of these lands, such as for water and
recreation, while also providing strong managerial protection for these
sensitive lands.
These lands are indeed worthy of this designation.
This region of Colorado is blessed with stunning beauty. Much of the
land proposed for wilderness and other protections in this legislation
are additions to existing wilderness. Those areas include the Mt.
Sneffels Wilderness Area and the Lizard Head Wilderness--two areas that
contain fourteen thousand foot peaks. They are defined

[[Page S11347]]

by their rugged beauty or rock and ice surrounded by forests that frame
these peaks in summer's vibrant greens and brilliant fall colors.
The bill also establishes a new area called McKenna Peak. This peak
presides over imposing sandstone cliffs which rise 2,000 feet above the
plain that presents a remarkable opportunity to add a unique landform
to the National Wilderness Preservation System. It also provides
important winter wildlife habitat for large numbers of deer and elk.
The Peak borders North Mountain, now considered to contain one of the
largest deer and elk herds in all of Colorado. The Division of Wildlife
places winter numbers of deer at 500 to 600, with up to 150 wintering
elk. The favorable habitat for deer and elk naturally draws many
hunters. Over 30,000 recreation user days are recorded annually during
hunting season in the game management unit of which McKenna Peak is a
part.
A wild horse herd numbering about 100 roams the western reaches of
McKenna Peak within the designated Spring Creek Wild Horse Herd
Management Area. Bald eagles winter in the lower reaches of the area,
and peregrine falcons have been sighted as well. Mountain lions,
bobcats, and black bear are also known to inhabit McKenna Peak. Other
natural features of interest include rich fossil beds.
Moreover, the bill would establish the Sheep Mountain Special
Management Area. This area is equally as striking as the surrounding
mountains and valleys that are already protected or would be protected
as wilderness in this legislation. However, since helicopter skiing
currently exists in this area, the legislation designates this area in
a way that protects its wilderness character, but still allows this use
to continue. It is the sort of accommodation that is reflective of
sound wilderness and land protection proposals, and I appreciate the
compromises that are reflected in this approach.
As many of these lands are in high altitude areas, there should not
be any issues related to water or other conflicts. As a result, the
legislation does not exert a federally reserved water right, but allows
access to existing water facilities and needs while also precluding any
federal assistance for any new or expansion of existing water resource
facility.
This bill has been carefully crafted and narrowly tailored to apply
deserving protections to these lands. I look forward to working with my
colleagues in seeing it passed.
Mr. President, I ask unanimous Consent that the text of the bill be
printed in the Record.
There being no objection, the text of the bill was ordered to be
printed in the Record, as follows:

S. 2762

Be it enacted by the Senate and House of Representatives of
the United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

This Act may be cited as the ``San Juan Mountains
Wilderness Act of 2009''.

SEC. 2. DEFINITIONS.

In this Act:
(1) Covered land.--The term ``covered land'' means--
(A) lands designated as wilderness under section 3 or
section 4; and
(B) lands designated as a special management area under
section 4.
(2) Nonconforming use.--The term ``nonconforming use''
means any commercial helicopter-assisted skiing or
snowboarding activities within the lands designated as a
special management area under section 4 that have been
authorized by the Secretary as of the date of enactment of
this Act.
(3) Secretary.--The term ``Secretary'' means the Secretary
of the Interior or the Secretary of Agriculture, as
appropriate.
(4) State.--The term ``State'' means the State of Colorado.

SEC. 3. ADDITIONS TO THE WILDERNESS PRESERVATION SYSTEM.

(a) Designation.--In accordance with the Wilderness Act (16
U.S.C. 1131 et seq.), the following areas in the State are
designated as wilderness areas and as components of the
National Wilderness Preservation System:
(1) Certain lands in the Grand Mesa, Uncompahgre, and
Gunnison National Forests comprising approximately 3,170
acres, as generally depicted on a map titled ``Proposed
Wilson, Sunshine, Black Face and San Bernardo Additions to
the Lizard Head Wilderness'', dated May 2009, and which are
hereby incorporated into the Lizard Head Wilderness area.
(2) Certain lands in the Grand Mesa, Uncompahgre, and
Gunnison National Forests comprising approximately 8,375
acres, as generally depicted on a map titled ``Proposed
Liberty Bell and Last Dollar Additions to the Mt. Sneffels
Wilderness'', dated May 2009, and which are hereby
incorporated into the Mt. Sneffels Wilderness area.
(3) Certain lands in the Grand Mesa, Uncompahgre, and
Gunnison National Forests comprising approximately 13,224
acres, as generally depicted on a map titled ``Proposed
Whitehouse Additions to the Mt. Sneffels Wilderness'', dated
May 2009, and which are hereby incorporated into the Mt.
Sneffels Wilderness area.
(4)(A) Certain lands in the San Juan Resource Area of the
Bureau of Land Management comprising approximately 8,614
acres, as generally depicted on a map titled ``Proposed
McKenna Peak Wilderness'', dated May 2009, and which shall be
known as the McKenna Peak Wilderness.
(B) The lands designated under subparagraph (A) shall be
administered as a component of the National Landscape
Conservation System.
(b) Map and Description.--
(1) In general.--As soon as practicable after the date of
the enactment of this Act, the Secretary shall file a map and
a legal description of each wilderness area designated by
this Act with--
(A) the Committee on Natural Resources of the House of
Representatives; and
(B) the Committee on Energy and Natural Resources of the
Senate.
(2) Force of law.--A map and legal description filed under
paragraph (1) shall have the same force and effect as if
included in this Act, except that the Secretary may correct
clerical and typographical errors in the map and legal
description.
(3) Public availability.--Each map and legal description
filed under paragraph (1) shall be filed and made available
for public inspection in the Office of the Director of the
Bureau of Land Management and in the Office of the Chief of
the Forest Service, as appropriate.

SEC. 4. SHEEP MOUNTAIN SPECIAL MANAGEMENT AREA.

(a) Designation.--Certain lands in the Grand Mesa,
Uncompahgre, and Gunnison and San Juan National Forests
comprising approximately 21,697 acres as generally depicted
on a map titled ``Proposed Sheep Mountain Special Management
Area'' and dated May 2009, are hereby designated as the Sheep
Mountain Special Management Area.
(b) Maps and Descriptions.--
(1) In general.--As soon as practicable after the date of
enactment of this Act, the Secretary shall file maps and
legal descriptions of the Federal land described in
subsection (a) with--
(A) the Committee on Energy and Natural Resources of the
Senate; and
(B) the Committee on Natural Resources of the House of
Representatives.
(2) Force of law.--The maps and legal descriptions filed
under paragraph (1) shall have the same force and effect as
if included in this Act, except that the Secretary may
correct typographical errors in the maps and legal
descriptions.
(3) Public availability.--Each map and legal description
filed under paragraph (1) shall be on file and available for
public inspection in the appropriate offices of the United
States Forest Service.
(c) Management.--
(1) In general.--Until Congress determines otherwise,
activities within the area designated in subsection (a) shall
be managed by the Secretary of Agriculture so as to maintain
the area's presently existing wilderness character and
potential for inclusion in the National Wilderness
Preservation System.
(2) Prohibitions.--The following shall be prohibited on the
Federal land described in subsection (a):
(A) Permanent roads.
(B) Except as necessary to meet the minimum requirements
for the administration of the Federal land and to protect
public health and safety--
(i) the use of motorized or mechanized vehicles, except as
described in paragraph (3); and
(ii) the establishment of temporary roads.
(3) Allowable activities.--The Secretary may allow
activities, including helisking, that have been authorized as
of the date of the enactment of this Act to continue within
the area designated in subsection (a). The designation under
subsection (a) shall not impact future permit processes
relating to such activities.
(4) Applicable law.--Any uses of the Federal land described
in subsection (a), including activities described in
paragraph (3), shall be in accordance with applicable law.
(d) Withdrawal.--Subject to valid existing rights, the
Federal land described in subsection (a) is withdrawn from--
(1) all forms of entry, appropriation, or disposal under
the public land laws;
(2) location, entry, and patent under the mining laws; and
(3) disposition under all laws relating to mineral and
energy leasing.
(e) Designation as Wilderness.--Lands described in
subsection (a) shall be designated as wilderness on the date
on which the Secretary publishes in the Federal Register
notice that the nonconforming use has terminated.
(f) Administration as Wilderness.--Upon its designation as
wilderness under subsection (e), the Sheep Mountain Special
Management Area shall be--
(1) known as the Sheep Mountain Wilderness; and
(2) administered in accordance with the Wilderness Act (16
U.S.C. 1133 et seq.) and section 3.

[[Page S11348]]

SEC. 5. ADMINISTRATIVE PROVISIONS.

(a) In General.--
(1) Subject to valid rights in existence on the date of the
enactment of this Act, land designated as wilderness under
section 3 or section 4 shall be administered by the Secretary
in accordance with--
(A) the Wilderness Act (16 U.S.C. 1131 et seq.); and
(B) this Act.
(2) The Secretary may continue to authorize the competitive
running event permitted since 1992 in the vicinity of the
boundaries of the Sheep Mountain Special Management Area
designated by section 4(a) and the Liberty Bell addition to
the Mt. Sneffels Wilderness designated by section 3(a)(2) in
a manner compatible with the preservation of such areas as
wilderness.
(b) Effective Date of the Wilderness Act.--With respect to
land designated as wilderness under section 3 or section 4,
any reference in the Wilderness Act (16 U.S.C. 1131 et seq.)
to the effective date of the Wilderness Act shall be deemed
to be a reference to the date of the enactment of this Act or
the date of the Secretary designating the land as wilderness.
(c) Fish and Wildlife.--Nothing in this Act shall affect
the jurisdiction or responsibility of the State with respect
to wildlife and fish.
(d) No Buffer Zones.--
(1) In general.--Nothing in this Act shall create a
protective perimeter or buffer zone around covered land.
(2) Activities outside wilderness.--The fact that a
nonwilderness activity or use can be seen or heard from
within covered land shall not preclude the conduct of the
activity or use outside the boundary of the covered land.
(e) Withdrawal.--Subject to valid rights in existence on
the date of the enactment of this Act, covered land is
withdrawn from all forms of--
(1) entry, appropriation, or disposal under public land
laws;
(2) location, entry, and patent under mining laws; and
(3) disposition under all laws pertaining to mineral and
geothermal leasing or mineral materials.
(f) Acquired Land.--Any land or interest in land located
inside the boundaries of covered land that is acquired by the
United States after the date of the enactment of this Act
shall become part of the relevant wilderness or special
management area and shall be managed in accordance with this
Act and other applicable law.
(g) Grazing.--Grazing in covered land shall be administered
in accordance with section 4(d)(4) of the Wilderness Act (16
U.S.C. 1133(d)(4)), as further interpreted by section 108 of
Public Law 96-560, and the guidelines set forth in appendix A
of the Report of the Committee on Interior and Insular
Affairs to accompany H.R. 2570 of the 101st Congress (H.
Rept. 101-405).
(h) Ames Hydroelectric Project.--The inclusion in the
National Wilderness Preservation System or designation under
section 4 of this Act as a Special Management Area as
described in section 4 of this Act, shall not be construed to
interfere with the operation and maintenance of the Ames
Hydroelectric Project, as currently licensed by the Federal
Energy Regulatory Commission, or as reauthorized in the
future, including reasonable use of National Wilderness
Preservation System lands or Special Management Area for any
necessary repair or replacement of existing facilities,
transport of water and aerial or land access. All means of
access to the project that are currently permitted by the
Secretary on the date of enactment of this Act shall be
maintained.

SEC. 6. WATER.

(a) Findings, Purpose, and Definition.--
(1) Findings.--Congress finds that--
(A) the lands designated as wilderness or a Special
Management Area by this Act are located at the headwaters of
the streams and rivers on those lands, with few, if any,
actual or proposed water resource facilities located upstream
from such lands and few, if any, opportunities for diversion,
storage, or other uses of water occurring outside such lands
that would adversely affect the wilderness values of such
lands;
(B) the lands designated as wilderness or Special
Management Area by this Act are not suitable for use for
development of new water resource facilities, or for the
expansion of existing facilities; and
(C) therefore, it is possible to provide for proper
management and protection of the wilderness value of such
lands in ways different from those utilized in other
legislation designating as wilderness lands not sharing the
attributes of the lands designated as wilderness or Special
Management Area by this Act.
(2) Purpose.--The purpose of this section is to protect the
wilderness values of the lands designated as wilderness or
Special Management Area by this Act by means other than those
based on a Federal reserved water right.
(3) Definition.--As used in this section, the term ``water
resource facility'' means irrigation and pumping facilities,
reservoirs, water conservation works, aqueducts, canals,
ditches, pipelines, wells, hydropower projects, and
transmission and other ancillary facilities, and other water
diversion, storage, and carriage structures.
(b) Restrictions on Rights and Disclaimer of Effect.--
(1) Water rights claims.--Neither the Secretary of
Agriculture nor the Secretary of the Interior, nor any other
officer, employee, representative, or agent of the United
States, nor any other person, shall assert in any court or
agency, nor shall any court or agency consider, any claim to
or for water or water rights in the State of Colorado, which
is based on any construction of any portion of this Act, or
the designation of any lands as wilderness or Special
Management Area by this Act, as constituting an express or
implied reservation of water or water rights.
(2) No affect on water rights.--Nothing in this Act shall
be construed as a creation, recognition, disclaimer,
relinquishment, or reduction of any water rights of the
United States in the State of Colorado existing before the
date of enactment of this Act.
(3) No interpretation or designation.--Except as provided
in subsection (g), nothing in this Act shall be construed as
constituting an interpretation of any other Act or any
designation made by or pursuant thereto.
(4) No precedent.--Nothing in this section shall be
construed as establishing a precedent with regard to any
future wilderness designations.
(c) New or Expanded Projects.--Notwithstanding any other
provision of law, on and after the date of enactment of this
Act neither the President nor any other officer, employee, or
agent of the United States shall fund, assist, authorize, or
issue a license or permit for the development of any new
water resource facility within the areas described in
sections 3 and 4 or the enlargement of any water resource
facility within the areas described in sections 3 and 4.
(d) Access and Operation.--
(1) Access to water resource facilities.--Subject to the
provisions of this subsection, the Secretary shall allow
reasonable access to water resource facilities in existence
on the date of enactment of this Act within the areas
described in sections 3 and 4, including motorized access
where necessary and customarily employed on routes existing
as of the date of enactment of this Act.
(2) Access routes.--Existing access routes within such
areas customarily employed as of the date of enactment of
this Act may be used, maintained, repaired, and replaced to
the extent necessary to maintain their present function,
design, and serviceable operation, so long as such activities
have no increased adverse impacts on the resources and values
of the areas described in sections 3 and 4 than existed as of
the date of enactment of this Act.
(3) Use of water resource facilities.--Subject to the
provisions of subsections (c) and (d), the Secretary shall
allow water resource facilities existing on the date of
enactment of this Act within areas described in sections 3
and 4 to be used, operated, maintained, repaired, and
replaced to the extent necessary for the continued exercise,
in accordance with Colorado State law, of vested water rights
adjudicated for use in connection with such facilities by a
court of competent jurisdiction prior to the date of
enactment of this Act. The impact of an existing facility on
the water resources and values of the area shall not be
increased as a result of changes in the adjudicated type of
use of such facility as of the date of enactment of this Act.
(4) Repair and maintainence.--Water resource facilities,
and access routes serving such facilities, existing within
the areas described in sections 3 and 4 on the date of
enactment of this Act shall be maintained and repaired when
and to the extent necessary to prevent increased adverse
impacts on the resources and values of the areas described in
sections 3 and 4.
(e) Existing Projects.--Except as provided in subsections
(c) and (d), the provisions of this Act related to the areas
described in sections 3 and 4, and the inclusion in the
National Wilderness Preservation System of the areas
described in section 3 and 4, shall not be construed to
affect or limit the use, operation, maintenance, repair,
modification, or replacement of water resources facilities in
existence on the date of enactment of this Act within the
boundaries of the areas described in sections 3 and 4.
(f) Monitoring and Implementation.--The Secretaries of
Agriculture and the Interior shall monitor the operation of
and access to water resource facilities within the areas
described in sections 3 and 4 and take all steps necessary to
implement the provisions of this section.
(g) Interstate Compacts.--Nothing in this Act, and nothing
in any previous Act designating any lands as wilderness,
shall be construed as limiting, altering, modifying, or
amending any of the interstate compacts or equitable
apportionment decrees that apportion water among and between
the State of Colorado and other States. Except as expressly
provided in this section, nothing in this Act shall affect or
limit the development or use by existing and future holders
of vested water rights of Colorado's full apportionment of
such waters.

SEC. 7. NATURITA CANYON MANAGEMENT PROVISIONS.

(a) Withdrawal.--Subject to valid rights in existence on
the date of the enactment of this Act, land described in
subsection (b) is withdrawn from all forms of--
(1) entry, appropriation, or disposal under public land
laws;
(2) location, entry, and patent under mining laws; and
(3) disposition under all laws pertaining to mineral and
geothermal leasing or mineral materials.

[[Page S11349]]

(b) Land Described.--The land to be protected under
subsection (a) is the approximately 6,596 acres depicted on
the map titled ``Naturita Canyon Mineral Withdrawal Area''
and dated May 2009.
______

By Mr. KERRY:
S. 2765. A bill to amend the Small Business Act to authorize loan
guarantees for health information technology; to the Committee on Small
Business and Entrepreneurship.
Mr. KERRY. Mr. President, as we move forward in modernizing our
health care system, we must not forget the small businesses that simply
cannot afford the upfront costs of installing new health information
technology. That is why today I am introducing the Small Business
Health Information Technology Financing Act. This bill will amend the
Small Busis Act to allow the administrator of the Small Business
Administration to guarantee up to 90 percent of the amount of a loan to
small business health professionals to be used for the purchase and
installation of health information technology. The loans can be used
for computer hardware, software and other technology that will assist
in the use of electronic health records and prescriptions.
A modernized health system using electronic prescribing and
electronic health records will help improve patient care while reducing
costs. Electronic prescribing not only saves money through improved
efficiency, but more importantly, it reduces medical errors and saves
lives. According to the Institute of Medicine, 1/3 of written
prescriptions require follow-up clarification, with medication mistakes
causing 7,000 deaths and 1.5 million injuries per year. The Medicare
Improvements for Patients and Providers Act that was enacted into law
in July 2008 included provisions from my electronic prescribing bill,
providing incentive payments for medical professionals using electronic
prescribing. Now we must take an additional step to make health IT
accessible to small providers so they can afford to implement new
technology such as e-prescribing and electronic health records.
Small businesses employ more than half of all private sector
employees and have generated 64 percent of net new jobs in the past 15
years. Access to capital for small health providers not only benefits
patients but also boosts small businesses in the medical field. Helping
small businesses grow and succeed is critical as we look to create jobs
and strengthen the economy.
It is my hope that we can move forward with this bill in a bi-
partisan manner. I ask all of my colleagues to support this
legislation.
______

By Mr. KERRY (for himself and Mr. Casey):
S. 2766. A bill to provide for the coverage of medically necessary
food under Federal health programs and private health insurance; to the
Committee on Finance.
Mr. KERRY. Mr. President, each year an estimated 2,550 children in
the U.S. are diagnosed with an inborn error of metabolism disorder. For
the rest of their lives they will need modified foods that are void of
the nutrients their body is incapable of processing. They may also
require supplementation with pharmacological doses of vitamins and
amino acids. The good news is that with treatment they can lead normal,
productive lives. But without these foods and supplements, patients can
become severely brain-damaged and hospitalized.
Newborn screening has made a tremendous difference in the early
diagnosis of metabolic disorders, but affordable and accessible
treatment options remain out of reach for too many Americans. Medical
foods and supplements which are necessary for treatment may not be
covered by insurance policies and can be prohibitively expensive for
many families. For those with a metabolic disorder, medical foods are
critical in treatment, just as other conditions are treated with pills
or injections. The sporadic insurance coverage of treatment has already
been recognized as a problem. Over 30 States have enacted laws to
enforce coverage of medical foods, but too many loopholes Thmain and
federal legislation is necessary to ensure that these individuals
receive what they need to stay well.
The Medical Foods Equity Act follows the April 2009 recommendations
of the U.S. Health and Human Services Secretary's Advisory Committee on
Heritable Disorders in Newborns and Children. It will ensure coverage
of medical foods and necessary supplements for individuals with
disorders as recommended by the Advisory Committee and, most
importantly, peace of mind for those families affected by inborn errors
of metabolism.
The lack of medical food coverage available to families has a
significant impact on their lives. With the current situation of
varying regulations between States and insurance providers, even
families with coverage find themselves living in fear that a change in
insurance provider will lead to reduced or nonexistent coverage. Too
many Americans across the country are struggling to access the
treatment they need for this type of disorder.
Take the story of Donna from Wilmington, MA. Donna has two daughters
with phenylketonuria and she speaks eloquently about the frustration
she experienced after her employer switched insurance plans. Because
medical foods are not listed along with other necessary medicines,
Donna was forced to navigate a long list mostly made up of durable
medical equipment providers unequipped to help her. Even when she
finally found a pharmacy that could order the formula, she was told
that they required an upfront payment because they were wary of not
being reimbursed by insurance companies. In Donna's own words, she was
dismayed at ``having that feeling like you're being held hostage every
time a change may occur in your insurance or carrier.''
Donna's story sharply illustrates the potential pitfalls even for
those with insurance that offers some coverage. Too many families face
a lack of coverage altogether. Take the case of Gwen of Waltham,
Massachusetts. Her son Austen was 36 hours old when his heart stopped
for over 20 minutes. Thankfully, he was stabilized but one doctor gave
him only 6 months to live. A second opinion brought hope for Austen's
family and a diagnosis of Glutaric Acidemia Type Two. Glutaric Acidemia
Type Two is an inborn error of metabolism managed almost exclusively
through diet. Because of the disorder, Austen cannot metabolize much
fat or protein. He relies on supplements and specialty foods.
MassHealth, Medicaid, covers most of the supplements but not the foods.
Gwen pays for his food out of pocket, a significant strain on the
family budget at a time when many families can least afford it. That
strain is coupled with fears of job security and thoughts of what would
happen if she could not pay for Austen's medical foods. No parent
should have to see their child recover from a life-threatening trauma
only to spend every day worrying about payment for their medical
treatment--a treatment just as necessary as insulin for a diabetic or
chemotherapy for a cancer patient.
As newborn screening and medical advances continue to improve the
ability of those born with an inborn error of metabolism to lead full,
healthy lives, we must make sure that the necessary treatments are
available. The Medical Foods Equity Act will close existing loopholes
in coverage and provide the parity in coverage these families deserve.
It is my hope that we can move forward with this bill in a bi-partisan
manner. I ask all of my colleagues to support this legislation.

____________________