This week more than 30 people living with ALS, caregivers, loved ones, and advocates met during the third annual More Than Our Stories event. At this grassroots event organized by three individual advocates, Jenny, Cathy and Michele, open discussions were had among attendees on legislative priorities to bring to members of Congress to expand support systems for those facing the financial impact of this disease, to invest in breakthrough research in ALS, and to provide pathways for people living with this disease to access therapies that may give them a chance to live.
It is moments like this, driven by people living with ALS and those most affected by ALS, where hope can be found. It is where transformative movements are built and action begins to drive change.
So, as many attendees in the room were on the Hill yesterday meeting with members of Congress and putting what they learned into action we wanted to urge you all to take action with us and share with you what we walked away from the one-day meeting with.
First, before you email, call or meet with your member of Congress or a member of their team include the following:
- Start with an introduction: Who are you and what’s your objective for getting in touch?
- Provide facts: Share information about the disease and relevant information that supports what you are going to ask of them.
- Give your story: Put a face to the facts.
- Match their priorities: Do a little research ahead of time to understand their top issues and what committees they sit on and how they might align with your priorities.
- Make an ask: Share one or a few things they can do to help rewrite the ALS story.
- Thank your member: End with a thank you and see if they would be open to hearing more from you as things progress in the ALS fight.
Wondering what you could ask your congressional leader to support? Below we’ve put some of the asks you can make to your members of Congress today.
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- The Accelerating Access to Critical Therapies Act for ALS (ACT for ALS)(H.R.7071) is a bipartisan piece of legislation introduced by Congressman Jeff Fortenberry and Congressman Mike Quigley in June 2020.
- ACT for ALS will provide resources through the National Institutes of Health (NIH) to fund expanded access programs for therapies in development from small biopharmaceutical companies, increasing the opportunity for people with terminal, currently untreatable, diseases to access promising therapies.
- ACT for ALS establishes a Center of Excellence for Neurodegenerative Diseases within the FDA to accelerate the development and approval of therapies for devastating neurodegenerative diseases.
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- The Promising Pathway Act (S.3872 and H.R.7269) is a piece of legislation introduced in the Senate by Senators Braun, Murkowski and McSally and in the House by Representatives Quigley, Gallagher, Westerman and Swalwell June 2020.
- The Promising Pathway Act (PPA) calls for the U.S. Food and Drug Administration (FDA) to establish a rolling, real-time, priority review pathway to grant or deny provisional approval status for drugs intended to treat, prevent, or diagnose serious or life-threatening diseases or conditions—including those posing a threat of epidemic or pandemic (e.g., COVID-19).
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- Find out here if your member has joined the ALS Caucus.
- The ALS Caucus is a bipartisan group of the most engaged ALS champions on the Hill.
- Launched in June 2019 the House ALS Caucus now includes 124 Members of Congress.
- Launched in January 2020 the Senate ALS Caucus now includes 15 Senators.
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- ALS is a fast-progressing disease with significant changes taking place in the 5 months post diagnosis.
- ALS takes, on average, more than a year from symptoms to reach a diagnosis.
- At that point, people living with ALS and their families don’t have a day to lose and the financial pressure from medical bills and lost income for the people living with ALS and possibly also a caregiver, are immediately being felt.
- It is projected that the annual cost of care for a person living with ALS each year can range from $16k to $200K (Source)
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- The National Institutes of Health is one of the largest funders of ALS research.
- In the final FY2020 appropriations a directive was included that NIH should coordinate ALS research across its Institutes and report to Congress on ALS research priorities 2020-2024.
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- Ask your Representative and Senators to support an NIH funding level of $44.7 billion for FY2021, a $3 billion increase over the previous year.
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- Veterans are twice as likely as the general population to be diagnosed with ALS (Source).
- Established in 2007, the Department of Defense ALS research program funds innovative research to develop new treatments for ALS for the benefit of Service members, Veterans, and the general public.
- In the final FY2020 appropriations the budget for this program was doubled from $10 million to $20 million.
- With this additional funding, the DOD ALS research program has expanded its grant offerings, fueling preclinical therapy development.
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- Alert your Members that people living with ALS and their families want broader access to clinical trials and access to therapies outside of trials.
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This information is current as of June 18th, 2020
