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The
ALS Association Capital
Office |
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News
Release |
(202)
638-6997 FAX (202)
638-6316 | |
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Contact:
The ALS AssociationPat
Wildman (202)
638-6997 xxxxxx@xxxxxxxxxxxxxxxxx | |
Advocates Urge Congress to Preserve Access to
Wheelchairs Needed by People with Lou Gehrig’s
Disease
WASHINGTON,
DC (September 25, 2007) – At
a Capitol
Hill press conference today, The ALS Association and people living with Lou
Gehrig’s disease (amyotrophic lateral sclerosis, ALS) urged Congress to preserve access to
power wheelchairs as Medicare prepares to implement a new competitive
acquisition program for durable medical equipment.
The
Centers for Medicare and Medicaid Services (CMS) is in the process of
developing
national competitive acquisition program, scheduled to take effect next
year
that would change how Medicare covers items of durable medical equipment,
including complex power wheelchairs. Under the program, Medicare will use
bids
not only to determine reimbursement rates for certain items of DME but also
which suppliers may participate in Medicare.
As
a result, people with ALS may be forced to obtain wheelchairs from
providers who
do not have the experience or expertise that is needed to meet their
complex
needs. For those in rural
areas, a
supplier experienced with ALS may not be available and those that are
available
may not be able to provide the level of service that is desperately needed
by
people with ALS.
“People with ALS who have lost the ability to
stand,
walk, use their arms and hands, and even breathe on their own, require the
use
of wheelchairs that are far more complex than those typically needed by
most
Medicare beneficiaries,” said Steve Gibson, Vice President of
Government
Relations for The ALS Association.
“Unfortunately, this new program does not recognize the
complexities of
ALS or take into account the significant cost of these chairs and the
services
that are required to ensure they meet the specific medical needs of people
with
ALS.”
Gwen Brooks, a woman living with ALS from Silver
Spring
The
ALS Association has endorsed H.R. 2231, the “Medicare Access to
Complex
Rehabilitation and Assistive Technology Act,” legislation introduced
by
Representatives Tom Allen (D-ME) and Ron Lewis (R-KY). The bill would exempt complex power
wheelchairs, such as the ones needed by people with ALS, from the
competitive
acquisition program.
“While we applaud Congress and the Centers
for Medicare
and Medicaid Services for working to reduce costs and combat fraud and
abuse,
these efforts must not be accomplished at the expense of people with ALS,
who
are among the most vulnerable Medicare patients,” said Gibson. “This legislation preserves
patient
access to needed technologies and recognizes that one-size-fits-all
policies are
not always appropriate when it comes to ALS. We urge Congress to pass H.R.
2231
this session.”
The Association is the only national not-for-profit health agency dedicated solely to the fight against ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig’s Disease). The ALS Association is fighting on every front − research, patient and community services, public education, and advocacy − to improve living with ALS. The mission of The Association is to lead the fight to cure and treat ALS through global, cutting-edge research, and to empower people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support.
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The
Amyotrophic Lateral
Sclerosis Association
Capital
Office
Telephone
202/638-6997 Fax
202/638-6316 The ALS Association is the only national not-for-profit
voluntary health organization whose sole mission is to find a cure
for and
improve living with ALS. Member
National Health Council |
September 24, 2007 The Honorable Tom Allen The Honorable Ron Lewis Dear Representatives Allen and
Lewis: I am writing on behalf of The ALS Association
and
the thousands of people with ALS we serve across the country to
express
our strong support for H.R. 2231, the “Medicare Access to
Complex
Rehabilitation and Assistive Technology Act.” Your leadership in
introducing
this important legislation is vital to ensuring that people with ALS
continue to have access to complex power wheelchairs, which play a
critical role in the lives of all people living with this horrific
disease. The ALS Association and our more than 40
Chapters
and affiliates across the country represent people living with
amyotrophic
lateral sclerosis (ALS), their families, and caregivers. As the only national
voluntary
health association dedicated solely to the fight against ALS, The
Association works to support people with ALS every day. Our goals are to improve the
quality of life for those living with the disease and to discover a
treatment and cure.
As you know, ALS, more commonly known as Lou
Gehrig’s disease, is a progressive, fatal, neurodegenerative
disease that
erodes a person’s ability to control muscle movement. The average life expectancy
for
people with ALS is two to five years following diagnosis and there is
no
known cause, cure or means of prevention for the disease. Currently, only one drug has
been
approved by the FDA to treat ALS, but that drug has shown only
limited
affects, prolonging life by just a few months. However, advances in
technology,
particularly the availability of complex power wheelchairs, have
enabled
people with ALS to continue to live productive lives as they fight
the
debilitating affects of the disease.
The ALS Association is concerned that changes
in
Medicare coverage and reimbursement policies, such as
Medicare’s
competitive acquisition program, may inappropriately restrict patient
access to the quality health care that the Medicare program was
created to
deliver. We are
particularly
concerned with how this new program may impact the availability of
the
highly customized, complex power wheelchairs on which people with ALS
desperately need to complete the daily activities that most of us
take for
granted.
People who have lost the ability to stand,
walk,
use their arms and hands, and even breathe on their own require the
use of
wheelchairs that are far more advanced than those typically needed by
most
Medicare beneficiaries.
Indeed, the complex chairs required by people with ALS are
highly
customized so that they can respond to their unique medical
needs. Unfortunately, the
competitive
acquisition program as currently proposed does not recognize the
complexities of ALS, the difficulties imposed by the disease, or the
sophisticated equipment and services that are required to improve the
lives of people with ALS and their families. While we applaud Congress and the Centers for
Medicare and Medicaid Services for working to reduce costs and combat
fraud and abuse, these efforts must not be accomplished in a manner
that
is detrimental to beneficiaries, like people with ALS, who are among
the
most vulnerable Medicare patients.
That is why we are pleased to endorse H.R.
2231. By exempting only
those
complex technologies needed by people with ALS and other serious
conditions, the bill preserves patient access to needed technologies
and
recognizes that one-size-fits-all policies are not always appropriate
when
it comes to ALS.
On behalf of the people with ALS and their
families we serve, The ALS Association applauds your leadership on
this
important issue and your commitment to our cause. We look forward to working
with
you and your colleagues to enact H.R. 2231 this session. Sincerely, Steve Gibson Vice President, Government Relations and
Public
Affairs | ||