The ALS Association

ALS Ice Bucket Challenge Progress

Healthcare Reform

Statement for the Record: Hearing to Consider the Graham-Cassidy-Heller-Johnson Proposal

September 25, 2017
The ALS Association submitted a statement to the Senate Finance Committee for a hearing on Monday, September 25 at 2:00 pm ET. The statement notes that the Graham-Cassidy proposal would:

  1. Undermine nationwide protections for patients with preexisting conditions.
  2. Remove current premium assistance and thus harm people who lose their jobs after an ALS diagnosis and must purchase health insurance for themselves and family members.
  3. Dramatically cut access to Medicaid by cutting and capping funds through block grants impacting not only people living with ALS who depend solely on Medicaid, but also those who receive both Medicare and Medicaid.
  4. Harm veterans who do not qualify for VA benefits but rely on Medicaid.

The ALS Association joined with 16 other leading national patient organizations in a statement opposing the Graham-Cassidy-Heller-Johnson Proposal. This statement was submitted to the Senate Finance Committee for its September 25 hearing.

Affordable, adequate care is vital to the people living with ALS that we represent and can mean the difference between life and death. See the statement here.

  Watch a livestream of the Senate Finance Committee hearing.


Sixteen Patient and Provider Groups Oppose Graham/Cassidy Bill

September 18, 2017
The ALS Association and 15 leading patient and provider groups oppose the proposal put forward by Senators Lindsey Graham (R-S.C.), Bill Cassidy (R-La.), Dean Heller (R-Nev.), and Ron Johnson (R-Wis.) that will negatively impact patients’ access to adequate and affordable health coverage and care. The bill would limit funding for the Medicaid program, roll back important essential health benefit protections, and potentially open the door to annual and lifetime caps on coverage, endangering access to critical care for millions of Americans. Affordable, adequate care is vital to the patients we represent. Other groups that have signed on to the statement include: American Cancer Society Cancer Action Network, American Diabetes Association, American Heart Association, American Lung Association, Arthritis Foundation, Cystic Fibrosis Foundation, Family Voices, JDRF, Lutheran Services in America, March of Dimes, National Health Council, National Multiple Sclerosis Society, National Organization for Rare Diseases, Volunteers of America and WomenHeart.


Compromise critical to improving health care coverage, say 13 national patient advocacy organizations

August 2, 2017
13 nonpartisan patient and provider groups representing millions of Americans issued a statement today regarding the recent consideration of health care reform principles by the Senate.


Twelve non-partisan patient and provider groups representing millions of Americans call up on the Senate to reject legislation to repeal the Affordable Care Act.

July 27, 2017
Find the statement here. In addition to The ALS Association, other signers include: American Heart Association, American Lung Association, Cystic Fibrosis Foundation, Family Voices, Lutheran Services, March of Dimes, MS Society, Muscular Dystrophy Association National Health Council, NORD and Volunteers of America.


Testimony in Support of the Steve Gleason Enduring Voices Act

July 20, 2017
The ALS Association is proud to submit written testimony to the House Energy and Commerce Committee in support of the Steve Gleason Enduring Voices Act (H.R. 2465). Read the testimony here.


15 National Patient Advocacy Organizations Urge Congress to Oppose the ACA Repeal and Take a Bipartisan Approach to Reform

July 18, 2017
The ALS Association joins with 14 other nonpartisan patient and provider groups representing millions of Americans call upon Congress to work in a bipartisan fashion and draft a new bill that will strengthen and expand access to affordable and adequate health care coverage. The joint statement noted that any attempt to repeal the ACA without replacing it with equal or better coverage is unacceptable especially for Americans with pre-existing conditions. The statement notes that “ When both sides of the aisle work together, they have always found the most durable and long-lasting solutions to the problems facing our country.”


ALS Association joins with Patient Advocacy Groups on Better Care Reconciliation Act (BCRA)

July 7, 2017
The ALS Association joins with other patient groups in opposing the amendment to the Better Care Reconciliation Act (BCRA) proposed by Senator Ted Cruz, which could create serious access and affordability problems for any person with a pre-existing health condition, chronic disease or disability. The opposition is based on the fact that the proposal would segment the insurance risk pool into the young and healthy versus older and sicker individuals. Without the younger, healthier people in the risk pool, the Cruz proposal would result in higher, not lower, premiums for people with serious and chronic conditions. The amendment is also opposed by the America's Health Insurance Plans (AHIP).


ALS Association joins with Patient Advocacy Groups on American Health Care Act (AHCA)

May 1, 2017
On behalf of more than one hundred million Americans battling chronic and other major health conditions – especially people living with ALS - the ALS Association joins with the following organizations in opposition to the American Health Care Act (AHCA): American Cancer Society Cancer Action Network, American Diabetes Association, American Heart Association, American Lung Association, Cystic Fibrosis Foundation, JDRF, March of Dimes, National Organization for Rare Disorders, National MS Society, WomenHeart

(For further details about why The ALS Association and other patient advocacy organizations oppose the AHCA, please click here. For a statement of Health Care Reform Principles, please click here.)

As Congress considers this legislation, the ALS Association, and other patient advocacy organizations, challenge lawmakers to remember their commitment to their constituents and the American people to protect lifesaving health care for millions of Americans, including those who struggle every day with rare, chronic and other major health conditions. We stand ready to work with Congress toward a proposal that ensures all Americans have affordable access to the care they need.

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