The ALS Association

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Advocacy News Archive

Thank You to Members of Congress Supporting ALS Disability Insurance Access Act 2019

February 15, 2019

On behalf of people living with ALS as well as their family and friends, we want to thank the following Senators and Representatives for sponsoring the ALS Disability Insurance Access Actprior to its introduction in the 116thCongress. This legislation, introduced in the last Congress as S.379/H.R.1171, will eliminate the unnecessaryand distressing five-monthadditionalwait for Social Security Disability Insurance(SSDI)that people with ALS endure after they are determined eligible for SSDI benefits. Thank you to our Congressional sponsors who are providing leadership – and to all Senators and Representatives who are supporting this effort. View the full list of cosponsors here.

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

December 17, 2018

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

The Affordable Care Act 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 (

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.

ALS Association Strongly Opposes Adding Ventilator to Competitive Bidding Process

December 14, 2018

On behalf of The ALS Association and its 39 Chapters as well as the close to 100 multi-disciplinary ALS clinics in our network, the association sent a clear and compelling message to the Centers for Medicare and Medicaid Services (CMS) that adding ventilators to the competitive bidding will severely impact people living with ALS. Comments were submitted on Friday, December 14 prior to Please see our comments here.

The ALS Association Submits Comments on Medicare Home Health

September 7, 2018

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.

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