ALS Disability Insurance Access Act Reintroduced in 116th Congress

Bipartisan Legislation Eliminates Five-Month Waiting Period for SSDI Benefits for People Diagnosed with ALS

The ALS Disability Insurance Access Act was reintroduced in the 116th Congress this week as S.578 in the Senate by Senator Sheldon Whitehouse (D-RI) and Senator Tom Cotton (R-AR). Representatives Seth Moulton (D-MA) and Peter King (R-NY) introduced the companion bill in the House as H.R.1407.

The bill was introduced with strong bipartisan support from 40 senators and 90 representatives.

Last year, thanks to your advocacy, the bill gained considerable momentum. Within three months of the 2018 National ALS Advocacy Conference, more than one-third of Congress supported the bill. Within seven months, for the first time ever, the bill was considered for passage through the Senate via unanimous consent.

Multiple research studies indicate that people who have served in the military are at far greater risk of developing ALS and dying from the disease than those with no history of military service.

The ALS Association is honored to work with more than 20,000 people with ALS annually, including active duty military and veterans, through our nationwide system of chapters.

Continue reading ALS Disability Insurance Access Act Reintroduced in 116th Congress

The ALS Association Fights To Protect Health Care Access After Texas Ruling

The ALS Association joined 37 patient groups opposing a decision from a federal court in Texas that declared the Affordable Care Act (ACA) unconstitutional. The Texas v. United States decision is expected to be appealed to the U.S. Court of Appeals for the Fifth Circuit.

The ACA will remain in place during the appeals process, including:

• Coverage protections for pre-existing conditions like ALS.
• Essential health benefits, including coverage of prescription drugs, chronic disease. management, rehab and habilitative services, and mental health.
• Coverage through Medicaid in states where the program was expanded.
• 2019 health insurance plans purchased through the marketplace (HealthCare.gov).

The ALS Association unequivocally opposes any effort to eliminate protections for people with ALS and urges Congress and the U.S. Court of Appeals for the Fifth Circuit to safeguard protections for people with chronic diseases like ALS.

People with ALS Should Have Access to the Medicare Home Health Benefits They Deserve

The ALS Association is ramping up its efforts to make sure people with ALS who rely on Medicare have access to home health care benefits.

“Many people in the community, including people with ALS, people within our chapters, and our clinical partners, have told us about the serious and persistent challenges faced by Medicare beneficiaries with ALS,” said Dr. Neil Thakur, executive vice president for mission strategy at The ALS Association. “Many such beneficiaries, despite being fully qualified, are turned down for the home health benefits they deserve. Other beneficiaries are able to receive Medicare home health but deal with inadequate hours of service and inappropriate termination from care.”

Continue reading People with ALS Should Have Access to the Medicare Home Health Benefits They Deserve

Guest Post: ‘Those With the Most to Lose Should Be Speaking the Loudest’

By Stan Williams

Last year, I sat in the Washington, D.C., offices of my four elected Indiana representatives and saw in their eyes how my words, and the words from my wife, pierced their hearts.

Attending the National ALS Advocacy Conference left me with the unmistakable conclusion that those with the most to lose should be speaking the loudest. We must explain to our elected officials how their inaction affects people living with ALS.

Our real-life experiences of my own battle with ALS, including my wife’s challenges as my caregiver, had an impact on the Congressmen. They listened intently. Some even shed a tear or two.

Continue reading Guest Post: ‘Those With the Most to Lose Should Be Speaking the Loudest’

Members of ALS Community Gather with Representatives from FDA and Industry to Inform FDA Draft Guidance on ALS

The ALS community recently presented its recommendations to the U.S. Food and Drug Administration (FDA) regarding the Amyotrophic Lateral Sclerosis: Developing Drugs for Treatment Guidance for Industry at a day-long event, called ALS Community Workshop: Therapy Development and Regulatory Pathways, which was held in Washington, D.C., on July 12. Over 90 people attended in person, with many more tuning in online.

Throughout the day, there were opportunities to make comments to the FDA and industry representatives, both in-person and online. The Association was proud to host the day to bring many ALS stakeholders together to provide targeted feedback and information to further inform the FDA’s Draft Guidance on ALS Drug Development.

The FDA’s Draft Guidance provides drug developers with recommendations for all aspects of clinical trials for ALS, from study design to risk-benefit considerations to patient selection. For many years, The ALS Association has worked closely with the FDA and members of the ALS community in the development of a comprehensive ALS Guidance to make clinical trials faster, shorter, and more responsive to special considerations inherent to people with ALS and their caregivers.

The Workshop was an opportunity to provide targeted feedback and information from the ALS community to further inform the FDA’s Draft Guidance on ALS Drug Development. After the Workshop, the Association composed a report to the FDA to address key points discussed at the Workshop and to make recommendations on how to improve the FDA’s final Guidance (listed below).

“The purpose today is to build a strong guidance together,” said Calaneet Balas, president and CEO of The ALS Association. “We will be taking the great ideas from this meeting and presenting them to the FDA for their consideration in developing the final Guidance document. We look forward to that document, and to seeing it used widely for making clinical trials faster, more effective, and more aligned with the needs of patients and caregivers. We believe that is the route to the fastest development of new treatments for ALS.”

Continue reading Members of ALS Community Gather with Representatives from FDA and Industry to Inform FDA Draft Guidance on ALS

Guest Post: We Don’t Have Five Months to Wait

By Mary Johnson, Caregiver – Western Pennsylvania

Note: Under current law, people disabled with ALS who qualify for Social Security Disability Insurance (SSDI) must wait five months before receiving SSDI benefits. Every person must wait, regardless of the level of disability or how fast the Social Security Administration (SSA) approves their claim.

The ALS Disability Insurance Access Act (S.379/H.R.1171) would eliminate that five-month waiting period for people with ALS to receive SSDI. People with ALS would receive their SSDI benefits immediately after being approved by the SSA.

The five-month waiting period for Social Security Disability Insurance (SSDI) after an ALS diagnosis has severely impacted my family and I’m mad as hell about it. There’s absolutely no reason people with ALS shouldn’t be getting both SSDI and Medicare benefits immediately.

I can tell you from my own experience – we don’t have five months to wait.

My family has the genetic form of ALS (familial ALS). As of June 2018, I’ve lost 14 family members — siblings, aunts and uncles, nieces and nephews, and cousins – to this horrific disease.

My 25-year-old niece, Amanda, died four months after her ALS diagnosis – before the SSDI waiting period was met. The same situation occurred for my niece, Shannon, who died at age 34. She was diagnosed in January 2013 and died just two months later.

Continue reading Guest Post: We Don’t Have Five Months to Wait

With ALS, Every Day Adds Up

Our Every Drop Adds Up campaign builds on the idea that people coming together for a common goal can make the impossible happen, just as it did four summers ago when the ALS Ice Bucket Challenge soaked the world. Every person helped, research project funded, story shared, discovery made, piece of legislation passed, and auction bid placed – it all adds up!

For people living with ALS and their caregivers and family, every day adds up.

ALS is a journey that begins months, even years, before a diagnosis. Because there’s no definitive test for ALS, doctors must run through a battery of tests, ruling out other potential syndromes, conditions, and diseases before making a diagnosis of ALS.

It’s a journey that, for many people diagnosed with ALS, continues through the five-month waiting period they qualify for Social Security Disability Insurance.

Continue reading With ALS, Every Day Adds Up