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Help change the laws and policies that affect thousands of people with ALS and their families.
Become an Advocate
Help change the laws and policies that affect thousands of people with ALS and their families.
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ALS advocates lead the fight to defeat ALS on the frontlines. You can lead us closer to a world without ALS by joining the dedicated network of ALS advocates nation-wide. As an ALS advocate, you can help change the laws & policies that affect thousands of people living with ALS and their families.

 

Latest Advocacy News


Members of Congress Sign “Dear Colleague” Letter to Protect Access to Noninvasive Ventilators

July 1, 2019

As a result of the efforts of ALS advocates like you, more than 38 Senators and 178 House members have signed a “Dear Colleague” letter urging the Centers for Medicare and Medicaid Services (CMS) to reverse its decision to include non-invasive ventilators in competitive bidding (CB). This issue was a top priority for those attending the 2019 ALS Advocacy Conference. Hill visits made by advocates, as well as emails from across the country, made major difference in securing Congressional support. You can view the Senate letter here and the House letter here to find out if your member of Congress signed.

Noninvasive ventilators require clinical support as well as frequent and substantial servicing. They should not be subject a CB process where the lowest bidder determines reimbursement. If CMS’s decision is not reversed, access to noninvasive ventilators by people living with ALS would be harmed with devastating results – more emergency room visits and hospitals stays. In addition, beneficiaries unable to receive the necessary care in their homes, could be forced into institutional setting – worsening their quality of life and increasing the cost to taxpayers.

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ALS in the Military
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The ALS Association has developed a report, “ALS in the Military: Unexpected Consequences of Military Service,” that details the numerous studies that have been conducted which have found that military veterans, regardless of the branch of service, regardless of the era in which they served, and regardless of whether they served during a time of peace or a time of war, are at a greater risk of dying from ALS than if they had not served in the military.

The full report includes reviews of numerous studies, reports, and other evidence demonstrating the link between ALS and military service.

Read the Full Report

Appropriations Requests Submitted for Fiscal Year 2020 with Strong Bipartisan Support

Appropriations are annual decisions made by Congress about how the federal government spends money. The ALS Association is pro-active in ensuring all deadlines for Senate and House appropriations are met, including submitting individual requests to key offices and circulating “Dear Colleague” letters in the House and Senate.

As part of the annual appropriation process, the chairs and ranking members of the appropriations committees establish deadlines for members to indicate their top priorities for the fiscal year. In response, the ALS Association works with congressional champions to generate “Dear Colleague” letters, which provides members with the opportunity to put their support of ALS programs on the record. The greater the number of signatures – the more influence these letters carry when the appropriations committees allocate funding for federal programs.

Due to the ALS community’s advocacy efforts in spring of 2019, strong bipartisan support increased for the ALS Research Program (ALSRP) at the Department of Defense (DOD), the National ALS Registry at the Centers for Disease Control and Prevention (CDC), and the National Institutes of Health (NIH) for fiscal year 2020, which runs from October 1, 2019 to September 30, 2020.

DOD ALSRP and CDC National ALS Registry Funding

The ALS Association’s House and Senate “Dear Colleague” letters asked for an increase from $10 million to $20 million for the DOD ALSRP and level funding of $10 million for the CDC National ALS Registry. Learn more about the signed letters below:

  • Fiscal Year 2020 House ALS Appropriations Dear Colleague
    A bipartisan group of 133 representatives, led by Reps. Courtney (D-CT), Holding (R-NC), Engel (D-NY), King (R-NY), Moulton (D-MA), and Fitzpatrick (R-PA) signed this House letter.
  • Fiscal Year 2020 Senate ALS Appropriations Dear Colleague
    A bipartisan group of 26 senators, led by Sens. Chris Coons (D-DE) and Bill Cassidy (R-LA) signed this Senate letter.

NIH Funding

In addition to the “Dear Colleague” letters generated by The ALS Association and congressional champions, the Association supported a letter calling for increases in NIH funding.

Continued ALS research at the NIH – the largest public funder of ALS research in the world – is vital to the discovery of treatments and a cure for the disease. In fiscal year 2018, NIH spent approximately $83 million on ALS research, with the National Institute of Neurological Disorders and Stroke (NINDS) making the largest investment and four other NIH Institutes contributing the balance.

  • Fiscal Year 2020 Senate NIH Dear Colleague
    A bipartisan letter of 62 senators, led by Sens. Robert Casey (D-PA) and Richard Burr (R-NC), called for maintaining a strong commitment to funding for the NIH.

ALS Advocates Making a Difference!

  • Annual government funding for ALS research has increased from $15 million a year to over $80 million a year, including a total of more than $950 million since The Association created a Public Policy Department in 1998.
  • Eliminated the 24 month Medicare waiting period for people living with ALS, the only time the law has ever been changed since Medicare was created.
  • Social Security Administration issues presumptive disability regulations for ALS, making it easier for people with ALS to receive disability benefits
  • Helped to implement historic regulations at the Department of Veteran Affairs that designate ALS as a service connected disease, ensuring veterans living with ALS and survivors have access to VA benefits.
  • Led effort to enact the ALS Registry Act, which created the National ALS Registry and is the largest ALS research project ever created.
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Accelerating Drug Development

It costs $1-2 billion and can take up to 15 years to bring an effective ALS treatment to market. Through a strategic collaboration of research, patient care, and public policy initiatives, The ALS Association is working to accelerate development of new treatments and ensure access to them. People with ALS are at the core of our mission, and to that end we are working to speed up the drug development process with several critical programs.

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