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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.

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Latest Advocacy News


The ALS Association Submits Comments on Medicare Home Health

The ALS Association recently submitted comments to the Centers for Medicare and Medicaid Services (CMS) on a proposed regulation for Medicare home health prospective payment system (HHPPS) reimbursement and other issues. Please see our comments here. Our advocacy reflects the input we have received from Chapters and the Public Policy Committee regarding the challenges that people with ALS have in accessing the Medicare home health benefit. In preparing our comment letter, we also touched based with the Center for Medicare Advocacy on issues.

Our letter focuses on two components of the proposed rule – home health and home infusion – which are of critical importance to people living with ALS and their caregivers. Prior to this comment letter, The ALS Association had an initial phone meeting with the top officials at CMS responsible for home health, hospice and durable medical equipment to let them know of our concerns. Our next step is to consult with ALS Chapter care service managers on October 22 as part of Chapter Day at the ALS Clinical Conference. Our Chapter consultation will be an interactive discussion focused on policy solutions that Congress and the Administration can achieve. After additional consultation with the Public Policy Committee, we will communicate with CMS and Congress regarding problems and solutions.

The Medicare home health payment is complex. Payments are made for a 60-day episode of care based on average costs for low-, medium-, and high-cost patients. For high-cost patients, federal law allows for an additional “outlier” payment but that pot of money is capped at 2.5 percent of estimated total payments under home health PPS. Individual agencies are also capped at 5% of their estimated total payments. To keep outlier reimbursements for high-cost patients under the cap, CMS incorporates a significant cut in every outlier payment. In addition, home health agencies who exceed the 5% for their agency – are subjected to extensive audits and risk not being reimbursed at all for care over the cap.

In this year’s proposed rule, CMS provides “a clinical example of how care for a patient with ALS could qualify for an additional outlier payment, which would serve to offset unusually high costs associated with providing home health to a patient with unusual variations in the amount of medically necessary care. This example, using payment policies in place for CY 2018, is provided for illustrative purposes only.” The example does not describe a new payment for home health for ALS. (See page 32377 of the Federal Register proposed rule. [CMS—1689—P] issued July 12, 2019)

Home Health Comments

In our letter, we identify the following problems for home health.

  1. Despite meeting all the requirements, there are serious and persistent problems for people living with ALS accessing any Medicare home health benefits.
  2. For the very few who can access the benefit, the services are well below what has been ordered by their physician and to which they are entitled.
  3. Finally, some beneficiaries who are receiving care are inappropriately terminated from the Medicare home health benefit.

The ALS Association recommends nine approaches that CMS should take action on to stop avoidance, underservice, and inappropriate discharge of people with ALS.

Home Infusion Comments

Intravenous therapy has taken on new significance to those with ALS because Radicava, the first new drug in 22 years that slows the progression of ALS symptoms, was approved by the Food and Drug Administration (FDA) in 2017. It requires long-term intravenous administration. Although Radicava will not be directly impacted by the proposed rule, we believe that the growing use of home intravenous therapy demands our interest in the proper implementation of this benefit.

In our letter, we urge CMS to be particularly sensitive to the unintended access problems that have been created in the home health benefit, so they are not repeated in the implementation of this new and valuable home infusion benefit. Specifically, we are very concerned that analysis by the National Home Infusion Association indicates that CMS’ interpretation of the statute as reflected in the proposed rule is inaccurate and may fail to pay adequately to encourage participation by qualified providers in this benefit and ensure high quality care for beneficiaries.

"Dear Colleague" Letters

A “Dear Colleague” letter is sent by a member of Congress to their colleagues in the House or Senate. It asks for colleagues to “sign-on” to a letter either supporting an appropriations request or cosponsoring a piece of legislation. All Dear Colleague letters are important in terms of moving legislation forward. When a Dear ColleagueAction Alert is posted, all members of the ALS community are asked to contact their Representative or Senators to ask them to sign on.

Thanks to Congressional leaders and to the ALS community for generating these recent Dear Colleague letters:

Department of Defense (DOD) ALS Research Program (ALSRP)

  • Senate Nelson-Cassidy DOD ALSRP Dear Colleague Letter
    A bipartisan group of 13 Senators signed a Dear Colleague letter calling for $10 million in funding for the DOD ALSRP for fiscal year 2019 (FY19). The letter was spearheaded by Senators Bill Nelson (D-FL) and Bill Cassidy (R-LA). The letter was sent to Defense Appropriations Subcommittee Chairman Richard Shelby (R-AL) and Ranking Member Richard Durbin (D-IL). The DOD program is a collaborative effort that includes researchers from the VA, NIH and the private sector partnering together to advance innovative approaches to research and treatment. Everyone who has ALS benefits from this research.
  • House Reichert-Courtney-King-Moulton DOD ALSRP Dear Colleague Letter
    More than 80 Representatives signed a Dear Colleague letter calling for $10 million in funding for the DOD ALSRP for fiscal year 2019 (FY19). The letter was spearheaded by Reps. Dave Reichert (R-WA), Joe Courtney (D-CT), Peter King (R-NY), and Seth Moulton (D-MA). The letter was sent to Defense Appropriations Subcommittee Chairman Kay Granger (R-TX) and Ranking Member Peter Visclosky (D-IN). The DOD program is a collaborative effort that includes researchers from the VA, NIH and the private sector partnering together. Everyone who has ALS benefits from this research.

Centers for Disease Control and Prevention (CDC) National ALS Registry

  • Senate Nelson CDC National ALS Registry Dear Colleague Letter
    A bipartisan group of 12 Senators signed a "Dear Colleague" letter calling for $10 million for FY19 in funding for the National ALS Registry at CDC. The letter was spearheaded by Senators Bill Nelson (D-FL) and Bill Cassidy (R-LA) and sent to the Senate Appropriations Subcommittee for Labor, Health and Human Services chaired by Roy Blount (R-MO) and Ranking Member Patty Murray (D-WA). CDC’s National ALS Registry collects, manages, and analyzes data about people with ALS, connects patients with clinical trials and helps researchers to move forward in find a cure.
  • House Engel-King CDC National ALS Registry Dear Colleague Letter
    There were 65 Representatives that signed a "Dear Colleague" letter calling for $10 million for FY19 in funding for the National ALS Registry at CDC. The letter was spearheaded by Reps. Eliot L. Engel (D-NY) and Peter King (R-NY) and sent to the House Appropriations Subcommittee for Labor, Health and Human Services chaired by Tom Cole (R-OK) and Ranking Member Rosa DeLauro (D-CT). CDC’s National ALS Registry collects, manages, and analyzes data about people with ALS, connects patients with clinical trials and helps researchers to move forward in find a cure.

National Institutes of Health (NIH)

  • Senate Casey-Burr NIH Dear Colleague Letter
    This letter is currently being circulated by Sens. Bob Casey (D-PA) and Richard Burr (R-NC) and sent to the Senate Appropriations Committee chaired by Sen. Thad Cochran (R-MS) and Vice Chairman Patrick Leahy (D-VT).

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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