ALS advocates are pursuing an aggressive set of public policy priorities for people living with ALS and their families. These priorities include increased federal funding for ALS research, creating new pathways for expedited approval of promising treatments including the Promising Pathway Act and ACT for ALS, making permanent expanded access to telehealth, and increasing access to high-quality health care and veteran's benefits.
People with ALS on Tuesday called on the FDA to use its existing authority and the flexibility it promised the ALS community it would use to make experimental drugs that show incremental benefits available as quickly as possible. The comments came in a “We Can’t Wait” Action Meeting with FDA organized by The ALS Association.
We are deeply grateful to the eight speakers who shared their wisdom and personal experience with the FDA, as well as the more than 150 others from the community who have done so online. We continue to hear that people with ALS want effective treatments now, even if they offer modest benefit, and are willing to face considerable uncertainty and risk to do so.
Later this month, the ALS Association will host a virtual session focused on the urgent need for timely access to new therapies. Leaders from the U.S. Food and Drug Administration (FDA) and industry companies will listen to people living with ALS speak directly about their expectations for their experiences with the disease and how important it is to have timely access to therapies that have the potential to provide incremental benefit in improving how people feel, function and live.
Recent changes to Medicare will enable people with ALS to receive services from speech language pathologists via telehealth through the end of the COVID-19 pandemic. These services include clinical care for swallowing and speech-generating devices - many challenges people living with ALS are faced with every day.
Recent changes at the Centers for Medicare & Medicaid Services (CMS) will enable people with ALS to receive critical services provided by speech therapists, normally provided at in-person visits, via telehealth during the pandemic. These services include clinical care for swallowing and speech-generating devices - many challenges people living with ALS are faced with every day.
“Shortly after being diagnosed, I began researching and discovered how devastating this disease really is,” Pattie says. “In those early months I struggled emotionally with the outlook that was now my reality. Eventually, I chose to use my situation as motivation to try and make a difference for the future of ALS.”
The ALS Association supports ACT for ALS and the Promising Pathway Act as they were originally introduced in the last Congress. Following the 2020 election, a new Congress was sworn-in in January of 2021. The legislative process requires that both bills be reintroduced to the newly elected Congress, and we are working with our congressional champions to reintroduce them as soon as possible. We believe both bills will make a positive impact on people living with ALS and look forward to working with the community and Congress to pass them.
On December 22, the ALS Disability Insurance Access Act became law. Since the law was passed, The ALS Association has met with the Social Security Administration to ensure applications for SSDI are quickly processed and benefits start immediately for people with ALS.
The ALS Disability Insurance Access Act went into law Tuesday, removing the 5-month delay for people with ALS to access the Social Security Disability benefits. This marks the culmination of a multi-year fight by ALS advocates across the country.
The ALS community earned a hard-fought victory this week with passage of the ALS Disability Insurance Access Act, ending the five-month waiting period for people with to start receiving their Social Security Disability Insurance (SSDI) benefits.
The U.S. Senate on Wednesday passed the ALS Disability Insurance Access Act – a huge success that would not have been possible without the tireless advocacy of ALS advocates across the country. Thank you for every action you took to make this vote a reality!
The ALS Association and I AM ALS on Friday submitted a petition to the Food and Drug Administration calling on the agency and Amylyx Pharmaceuticals to act swiftly and with urgency to make AMX0035 available as soon as possible. The petition was signed by more than 50,000 people from across the country who have been affected by ALS.
Voting safely during a pandemic is challenging enough, but what do you do if you're high risk for contracting the coronavirus and facing mobility and motor function challenges? While the 2020 election is now just days away, it’s more important than ever to understand your rights, the voting options available in your state, and make your plan to share your voice.
Before his diagnosis, John Russo had two fears: the first was getting attacked by a shark while fishing at night, and the second was being diagnosed with ALS. He managed to avoid the sharks, but not ALS. After taking a few weeks to process what the rest of his life would look like, he realized he needed to face down his biggest fear and keep going. He found a new purpose: making life better for people living with ALS across the country, as well as deepening research efforts to learn more about the disease.
More than 43,000 people signed The ALS Association’s petition, launched September 3 with I Am ALS, to call on the FDA and Amylyx Pharmaceuticals to work together to speed up the process of getting AMX0035 available for people living with ALS as quickly as possible.
Increased access to telehealth has long been a priority for The ALS Association and its advocates, as many people living with the disease have difficulty traveling to multidisciplinary clinics. In fact, many of the policy changes the Association pursued long before the pandemic have been enacted in response to the COVID-19 public health crisis. It is now critical that we fight to make those changes permanent.