ALS Advocacy Victory: Access to Complex Rehabilitation Technology Preserved

As ALS progresses, people living with the disease heavily depend on complex rehabilitative technology (CRT), especially their personally customized power wheel chairs. The ALS Association played a critical role both through direct lobbying and grassroots advocacy to win support for legislation to convince the Centers for Medicare and Medicaid Services (CMS) to abandon plans to apply competitive bidding to CRT. This makes it possible for people living with ALS to continue to obtain the CRT equipment that is customized to their needs.

CMS made this decision after bipartisan legislation (S.1132/H.R.2465) to ensure access to CRT, which was supported by 79 Representatives and 8 Senators. The ALS Association unwaveringly worked to achieve this success by making this legislation a priority at the National ALS Advocacy Conference and encouraging advocates to contact their Members of Congress. Read more to learn about this exciting legislative win.

CMS’s durable medical equipment benefit for complex rehabilitative technology (CRT) was drafted over 40 years ago. Since then, CRT equipment has advanced radically.  CRT products include power wheelchairs and the personalized accessories that go along with it, such as: custom head support and seating systems, mounting hardware, adjustable leg rests and more to help meet a person’s unique medical and functional needs.

Complex power wheel chairs
Examples of complex power wheelchairs

Of great concern to The ALS Association was CMS’ determination over the past several years to move CRT into a “competitive bidding” process that would make it much harder for people living with ALS to secure and maintain personally customized wheelchairs and accessories. Again and again, CMS announced their plans to do so.

Based on advocacy from The ALS Association and others, Congress has repeatedly rejected CMS’ plan to apply competitive bidding to CRT. If the CMS plan passed, it would mean that people who used this equipment would face numerous challenges when trying to access the appropriate equipment.

After a long fought battle, the ALS community achieved a very important victory! On June 23rd, 2017, the CMS announced that it has abandoned plans to apply competitive bidding rates to CRT Power Wheelchairs, which was set to go into place on July 1, 2017. Finally, CMS got the message that Congress wants to be sure that people living with ALS and other neuromuscular diseases who rely on CRT continue to have access to medically necessary CRT equipment.

The ALS Association worked closely with the National Coalition for Assistive & Rehab Technology (NCART) on this very important issue. This success wouldn’t have been possible without the tremendous grassroots efforts from our advocacy community reaching out to their local legislators. All of the emails, meetings and outreach was listened to and acted on. CMS dropped its plans that would have made access to CRT much more difficult because of the pressure they felt from Congress.  As a result, people living with ALS will be protected from drastic reductions in access to specialized equipment that is medically necessary. Today, we can celebrate this win for our community, and recognize that our voices matter and are being heard!

A copy of CMS’ statement on Access to CRT can be read here:

Be sure to thank your Senator or Representative if they helped make this possible. Our supporters in New York are Senator Kirsten Gilibrand (@SenGillibrand) and Representatives Tom Suozzi (NY-3; @RepTomSuozzi ‏), Kathleen Rice (NY-4; @RepKathleenRice ‏), Grace Meng (NY-6; @RepGraceMeng ‏), Jerry Nadler (NY-10; @RepJerryNadler ‏), Joe Crowley (NY-14; @repjoecrowley ‏), Eliot Engel (NY-16; @RepEliotEngel ‏), and Sean Maloney (NY-18; @RepSeanMaloney ‏). In New Jersey, we can thank Representatives Leonard Lance (NJ-7; @RepLanceNJ7 ‏) and Albio Sires (NJ-8; @RepSires ‏) for their support.

Advocating for Change on Capitol Hill: 7 Years and Counting

Janet Palkewick Advocates for ALS on Capital Hill
Janet Palkewick Advocates for ALS on Capital Hill

Janet Palkewick is defying the odds, living with ALS for nearly 27 years. She was diagnosed in 1989 while pregnant with her fourth child. When she hit the 20 year mark, she decided it was time to join the larger fight to end ALS.

“I realized I was still living for a purpose. I decided it was time to get more involved with finding a cure,” Janet said.

Which is why Janet decided to become an ALS advocate. She will be heading to Capitol Hill with The ALS Association for the 8th time this May for our Public Policy and Advocacy Conference along with her children and grandchildren. This important conference includes a day of lobbying elected officials on Capitol Hill.

“Having 7 years of experience, I’m very comfortable speaking about ALS and asking for the needed funding. Is it worth the time, expense, being drained both physically and emotionally? A great big YES,” Janet said. “I feel accomplished, I was heard. I made a difference.”

Janet admits sharing her story with lawmakers can be difficult but says the lawmakers have always been receptive.

“I have never had a bad meeting. The lawmakers or their aides have listened with genuine interest and concern. It is very important for lawmakers to understand that ALS does in fact affect the whole family. We need to show the personal side of ALS, put a face on the disease. Sometimes it gets very emotional; there are lots of tears. But that’s okay, it’s making ALS real,” Janet said.

Staying motivated and positive isn’t always easy, but Janet says the progress she has seen since her diagnosis keeps her motivated.

“More has been accomplished toward finding an ALS cure in the last 10 years than the previous 70 years. Actually, since my diagnosis 27 years ago, the most headway has been made in the last 5 years. I am hopeful! I must remain hopeful that there will be a cure in my lifetime,” Janet said.

One of the bills our advocates will be talking to lawmakers about in May, would eliminate the 5 month waiting period for disability insurance for people diagnosed with ALS. Janet says it’s important for everyone to speak up on this issue, even if you are not directly affected by ALS.

“When there is an issue to be addressed, I not only send my letter, I also ask others to do likewise. Advocacy is not limited to PALS and family, anyone can be an ALS Advocate. I am a firm believer in fundraising and advocating all year long. After all, PALS and their families need help all through the year,” Janet said.

 Advocacy week will be held from May 14th – May 16th. To join the Greater New York Chapter delegation or to find out more about how you can get involved head to our website at or call Wendy DuBoff at 212-720-3054.

Take Action: Help Ensure Medicare Covers New Treatments for ALS!

Help  ensure that  Medicare covers new treatments for ALS as soon as they are developed. It is critically important that we act now because a number of promising treatments are in development and several could be approved within the next few years. If those treatments are approved, but not covered by Medicare, many people with ALS simply will not have access to them.

Continue reading Take Action: Help Ensure Medicare Covers New Treatments for ALS!

Legislation Introduced to Waive Five Month SSDI Waiting Period For People Living With ALS!


We have great news! Senators Sheldon Whitehouse (D-RI) and Tom Cotton (R-AR) introduced S. 2904, the ALS Disability Insurance Access Act, to waive the five-month Social Security Disability waiting period for people living with ALS. Representatives Seth Moulton (D-MA) and Peter King (R-NY) introduced H.R. 5183, identical legislation in the House of Representatives.

Under current law, people disabled with ALS who qualify for SSDI must wait five months before receiving benefits and Medicare; regardless of the level of disability,and regardless of how fast the Social Security Administration approves the claim.

The ALS Disability Insurance Access Act would eliminate the five-month waiting period for people with ALS so they can receive disability benefits and Medicare ASAP! Please urge your Members of Congress to cosponsor the ALS Disability Insurance Access Act and support people living with ALS. You can visit our action center to send a customizable letter to your Members of Congress.


ALS Disability Insurance Access Act Introduced in Congress to Eliminate Five-Month Waiting Period for Social Security Disability Insurance for People with ALS

Washington, D.C. (May 10, 2016)— The ALS Association welcomed the introduction of new legislation to waive the Social Security Disability Insurance (SSDI) five-month waiting period for people living with ALS. The ALS Disability Insurance Access Act was introduced in the Senate by Senator Sheldon Whitehouse (D-RI) and in the House by Representatives Seth Moulton (D-MA) and Peter King (R-NY). The legislation was introduced during The Association’s Annual National ALS Advocacy Day when nearly 1,000 ALS advocates from across the U.S. were meeting with Members of Congress on Capitol Hill to continue the fight against the disease.

“People with ALS, who have lost the ability to walk, talk and even breathe on their own and who currently do not have an effective treatment option, should not be forced to wait to receive benefits they deserve and have paid for,” said Barb Newhouse, President and CEO of The ALS Association. “We applaud Senator Whitehouse and Representatives Moulton and King for their leadership in fighting for people with ALS and working to ensure they have access to the vital health and disability benefits that are so essential to everyone living with ALS and their families.”

Amyotrophic lateral sclerosis (ALS) is neurodegenerative disease that affects nerve cells in the brain and the spinal cord, leading to total paralysis and death within two to five years of diagnosis. For unknown reasons, veterans are twice as likely to develop ALS as the general population. There is no known cause or cure. Currently, there is only one drug approved by the U.S. Food and Drug Administration (FDA) that modestly extends survival.

“Those battling Lou Gehrig’s Disease shouldn’t have to wait to get benefits they’ve earned, especially given the unique challenges the disease poses for patients and their families,” said Whitehouse. “I’m proud to stand with the ALS community in introducing this legislation in the Senate.”

SSDI provides critical benefits to people disabled with ALS and is a vital resource for ALS families who are unable to work and generate an income due to the disabling and fatal nature of the disease. Moreover, eligibility for SSDI enables people with ALS to immediately qualify for Medicare as Congress waived the 24-month Medicare waiting period for people with ALS in 2000. However, under current law, people with ALS who qualify for SSDI still must wait five months before they can begin to receive both SSDI and Medicare, regardless of the degree of disability and regardless of how fast the Social Security Administration approves claims.

“The cruel and unforgiving nature of ALS makes it imperative that we provide the best possible care for people living with the disease,” said Congressman Moulton. “I join millions of people in Massachusetts and around the world who have been inspired by my friend, Pete Frates. In the face of tremendous adversity, Pete and his family have focused their efforts on raising awareness and advocating for research towards finding a cure. You only need to spend a few minutes with Pete to appreciate his resilience, and we owe it to Pete, his family, and all Americans impacted by ALS to provide top quality care. I’m proud to introduce this bipartisan bill to provide critical SSDI benefits that people living with ALS and their families need and deserve.”

The ALS Disability Insurance Access Act would waive the five-month waiting period for people disabled with ALS and enable them to immediately begin to receive SSDI benefits and Medicare. The legislation builds on previous actions taken by Congress and the Social Security Administration that recognize the unique nature of ALS, a disease the progresses rapidly, always is disabling and always is fatal. In fact, Congress already waived the 24-month Medicare waiting period for ALS, the only time the waiting period has ever been waived. SSA also has implemented a number of policies to expedite the review of ALS claims for SSDI and Supplemental Security Income benefits.

“Given the prognosis for those diagnosed with ALS, it defies common sense and decency to require these same individuals to wait for benefits they have paid for and most importantly deserve,” said King.

Newhouse continued, “Congress originally justified the five-month waiting period by saying it allows time for temporary conditions to reverse. Unfortunately, that’s not currently possible for someone with ALS. In fact, nearly 50 percent of people with ALS will die within 16 months of diagnosis. For them, five months can mean the difference between life and death.”

PALS Sonal Shah Honored By NJ State Officials

IMG_0988Pictured: Sonal Shah (blanket over shoulders), Sonal Shah’s mother, Saroj Vyas, (behind Sonal), Assemblywoman Nancy Munoz (top left) and Lt. Governor Kim Guadagno (top right)

On Wednesday, October 28th,  New Jersey Lt. Governor Kim Guadagno and Assemblywoman Nancy Munoz met with PALS advocate Sonal Shah and presented her with the legislation that was signed by Governor Chris Christie designating May as ALS Awareness Month in NJ.

Read about this legislation here.

New Jersey Passes Law Promoting ALS Awareness

Sonal ShahPictured: PALS Sonal Shah. Photo by Mahvash Saba

New Jersey Governor Chris Christie recently signed a bill into law that designates the third Wednesday in May as “ALS Awareness Day” and May as “ALS Awareness Month” thanks in large part to the efforts of PALS Sonal Shah, an active ALS advocate and author of “My Life, Legacy and ALS,” an autobiographical look at her life as a person living with ALS.

Gov. Christie sent an official letter to Sonal congratulating her for bringing awareness of ALS to the residents of New Jersey. “Your tireless efforts to share your story and participation in many events supporting ALS surely have touched many lives,” he wrote. “You have set an example of selflessness for others to follow, and I applaud your activism for such a worthy cause.” Gov. Christie thanked Sonal for her bravery, compassion and courage.

We are proud of Sonal’s unwavering dedication to the cause of PALS in New Jersey and nationwide through continued activism and advocacy. We also thank Gov. Christie and the New Jersey State legislature for passing this resolution, which will surely help to increase awareness of the many life challenges facing ALS patients locally and beyond.



Congress Acts on ALS Priorities!

US_Capitol_west_sideThanks to your efforts and those of thousands of other ALS advocates, Congress has taken significant action during the past month to support the fight against ALS. The updates below reflect the power of your advocacy and demonstrate that the ALS community is producing results on Capitol Hill!

National ALS Registry

The House Appropriations Committee approved $10 million to continue funding for the National ALS Registry! This is a 28% increase over last year!

ALS Research Program at the Department of Defense

The Senate Appropriations Committee approved $10 million dollars for the ALSRP, a 33% increase over last year!

21st Century Cures Act & Dormant Therapies

The House of Representatives approved H.R. 6, the 21st Century Cures Act, sweeping legislation that would help to advance ALS research and accelerate the discovery and development of new treatments. Among the many key provisions, the bill increases funding for the National Institutes of Health (the single largest source of ALS research funding) by $8.75 billion and also increases funding for the FDA by $550 million, providing the agency with additional resources to help improve and expedite the drug development and approval process. The bill now heads to the Senate where The Association is working to add the Dormant Therapies Act to the Senate version of 21st Century Cures.

Ensuring Access to Speech Generating Devices (SGDs)

And to cap off the great progress of the past 30 days, just this week the House passed the Steve Gleason Act to help ensure access to SGDs. The bill is on its way to the President who is expected to sign it into law!

We still have more work to do, but, together, we have made significant progress! You are making a difference so please keep an eye out for our updates and action alerts as the legislative process moves forward.

Thank you to the entire ALS community

The Steve Gleason Act Heads to the President's Desk!

US_Capitol_west_sideGreat news in the fight to ensure access to speech generating devices (SGDs).

On Wednesday, July 15, the House of Representatives passed the Steve Gleason Act. The legislation would help ensure access to SGDs and eye tracking technology and allow people to keep their SGD if they are admitted to hospice, a hospital or nursing facility. The bill also would allow people to purchase SGDs and therefore restore their ability to upgrade SGDs and allow people with ALS to access email, the internet and environmental controls.

Previously passed in the Senate on April 22, the legislation now heads to the President’s desk to become law!

Thank you to Representatives Cathy McMorris Rodgers (R-WA) & Steve Scalise (R-LA) along with Senator David Vitter (R-LA) for their leadership to champion the Steve Gleason Act in Congress.  Thanks also to the bill’s other champions:  Senators Susan Collins (R-ME), Charles Grassley (R-IA), Angus King (I-ME), Mark Kirk (R-IL), Amy Klobuchar (D-MN), and Lisa Murkowski (R-AK).

Special thanks to Team Gleason and Steve Gleason for his continued inspiration and dedication to helping people living with ALS, while he himself fights the disease.

Thank you to everyone!  You clearly have made a difference!

PALS Make a Difference in Washington DC at the National ALS Advocacy Day and Public Policy Conference

Janet P

Photo: ALS Advocate Janet Palkewick with her son, Philip, at The Walk to Defeat ALS.

This coming May, ALS Association Advocates from all over the country will meet up in Washington, DC to visit with members of Congress. This powerful annual event in our nation’s capitol has brought about big wins for the ALS Association in support of patients, including:

• Generating more than $800 million in government funding for ALS research since 1998.
• Establishing regulations so that people with ALS automatically meet the medical eligibility requirements for Social Security Disability Insurance.
• Eliminating the 24-month Medicare waiting period for ALS.
• Working with the VA to make ALS a service connected disease, providing veterans with ALS and their survivors access to the highest level of health and disability benefits.
• Enacting the National ALS Registry to establish the single largest ALS research program ever created.

While much has been accomplished, there is still more to do and we are asking every person and family member affected by ALS to join the Greater New York Chapter delegation from May 7-9 this year for the National ALS Advocacy Day and Public Policy Conference.

Janet Palkewick, from N. Haledon, NJ, a mother of four who has lived with Lou Gehrig’s Disease for more than 20 years, says one of the most important reasons to go to Washington DC is to put a face on the disease.

“With these PALS all coming to the meetings, our Senators, Congressmen and their aides can personally see the ‘human side’ of ALS and what it does to families,” said Janet.

When she was diagnosed in 1989, Janet was busy raising three kids and had a fourth baby on the way. She says life became “a real challenge for all of us” and after her diagnosis she never expected to see her baby go to kindergarten.

“Not only have I been blessed to see him grow up but also I’ve lived to see each of my other three children graduate college, marry, buy their own homes and have children,” said Janet who now has six grandchildren.

For the past six years Janet has gone to Washington, DC for the Advocacy Conference, becoming an integral part of The ALS Association’s delegation on Capitol Hill. She says she will continue to go “as long as I am able, to speak for my fellow PALS who are not able to and for the ones who have already lost their ALS battle.” Janet travels from her home in New Jersey to Washington, DC with her daughter every year and she has often also been accompanied by her sons and grandchildren.

“My 7-year-old grandson went last year and my 10-year-old granddaughter is going for her second time this year,” Janet said. “As you can see ALS Advocacy is important to my family!”

Lawmakers get to see firsthand how the disease affects more than just the patient. “During the meetings, all the members of our group – PALS and family members – share their unique ALS stories and how it has affected their lives,” described Janet. “At the end of each meeting, the leader of the group presents a request for support of the legislative and funding priorities that have been established by the ALS community.”

Out of everything Advocates have accomplished in Washington DC, Janet is most proud of the National ALS Registry. Janet was one of the first participants invited to do a test run of the website before it launched.

For those who are deciding whether to attend Advocacy Day this year, Janet says, “Go if you can because the accomplishments are so rewarding. You will be in a group with other people who have been at Advocacy Day previously, and you will never be physically, mentally, or emotionally alone. You will never regret what you are doing for yourself, PALS and all those whose lives have been touched by ALS. We are all connected.”

Join The ALS Association Greater New York Chapter from Wednesday, May 7th through Friday, May 9th for the National ALS Advocacy Day and Public Policy Conference in Washington, DC. Click here to register to become an Advocate today.

For information contact Development Manager Loren Domilici at (212) 720-3060 or