This week, The ALS Association continued to step up the fight on Capitol Hill to ensure PALS have access to power wheelchairs. The Association’s latest action comes in response to several changes that have been proposed in Medicare coverage policies for power wheelchairs, including the complex chairs so desperately needed by people with ALS.

The ALS Association and PALS Speak Out Against Competitive Acquisition!

This morning, The Association orchestrated the appearance of two people with ALS at a Capitol Hill press conference convened to urge Congress to pass the “Medicare Access to Complex Rehabilitation and Assistive Technology Act (HR 2231).” The legislation, introduced by Representatives Tom Allen (D-ME) and Ron Lewis (R-KY), would exempt complex power wheelchairs from Medicare’s new competitive acquisition program, which is expected to be implemented in 2008. The Association is very concerned that competitive acquisition may limit the types of chairs available to people with ALS, reduce services, and force PALS to obtain chairs from suppliers who do not know the unique medical needs of people with ALS. (Click here to read The Association’s letter endorsing HR 2231).

The ALS Association is the only national organization representing people with ALS to endorse HR 2231 and the press conference provided us with the opportunity to demonstrate how this issue would impact people with ALS specifically.

At the press conference, PALS Gwen Brooks and Tom Garafola shared their personal experiences with the disease and the important role power wheelchairs play in their lives. Garafola, joined by his wife Claudia, educated the press and Members of Congress in attendance about the unique nature of the disease, its progression and why wheelchairs are so vital to people with ALS. “I am grateful that Medicare has provided coverage for my chair and I can’t imagine what a person with ALS would do without it,” said Garafola. “This chair helps to replace what ALS has taken from me.”

Gwen Brooks also shared her personal story, saying “people with ALS like me do not need wheelchairs because they’re convenient. We need them because we don’t have a choice. I need this chair to live life.” (Click here to read The ALS Association’s competitive acquisition press release).

The bill’s sponsors Tom Allen (D-ME) and Ron Lewis (R-KY) both expressed their appreciation for The Association’s support and to Tom and Gwen for their efforts to raise awareness of the issue. Representative Allen also spoke of his personal connection to the disease as a good friend of his was recently diagnosed with ALS. Representative Allen also participated in the Northern New England Chapter’s walk, which took place in Portland, ME earlier this month.

Also attending the press conference were Representatives Betty Sutton (D-OH), Tom Price (R-GA), and Marsha Blackburn (R-TN). (Photos from the press conference: Reps. Tom Allen and Tom Price ; Tom Garafola and Gwen Brooks with Rep. Ron Lewis ; Tom Garafola speaking to reporters with his wife Claudia and Gwen Brooks ).

The Advocacy Department would like to thank the DC-MD-VA Chapter, specifically Director of Patient Services Colleen Maguire, for helping Gwen and Tom attend today's press conference.

The ALS Association Opposes Changes to Medicare’s First Month Purchase Option

This week, The Association also urged Congress to reject proposals to eliminate the “first month purchase option” for power wheelchairs. The provision, which was included in the House-passed Children’s Health and Medicare Protection (CHAMP) Act would take away a person’s ability to choose whether to purchase a power chair and also would limit what type of chair they can obtain, particularly the highly complex power wheelchairs that people with ALS rely on throughout the course of their disease. (Click here to read The ALS Association’s first month purchase option press release ).


The ALS Association has established several programs and strategies that identify and help to address a wide variety of Medicare issues of importance to the ALS community, including power wheelchairs. If you or someone you know experiences a problem with Medicare, please contact the Advocacy Department at advocacy@alsa-national.org.

If you have any questions about Medicare’s competitive acquisition program or changes proposed to the first month purchase option, please contact Pat Wildman at pwildman@alsa-national.org.