September 25, 2007 

The ALS Association Endorses House
Bill for Access to Power Wheelchairs

At a Capitol Hill press conference on September 25, 2007, 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. 

Tom Garafola and Gwen Brooks, who both have ALS, joined Congressman Ron Lewis (R-KY), sponsor of the “Medicare Access to Complex Rehabilitation and Assistive Technology Act,” at a Capitol Hill press conference on September 25.

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 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, Md., noted that for people with ALS, power wheelchairs are not simply a matter of convenience. “These are not the wheelchairs you see advertised on television all the time,” Brooks said. “People living with ALS like me do not need wheelchairs because they’re convenient. We need them because we don’t have a choice. This disease has robbed me of the ability to walk and do the things most people take for granted. I need this chair to live life.”  

The 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,” Gibson said. “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 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. 

To view the letter from The ALS Association endorsing H.R. 2231, click here.