Massachusetts ALS Advocacy: Testimony by John Hedstrom, Executive Director

Massachusetts State House Boston
The ALS Association Massachusetts Chapter, along with the Epilepsy Foundation, testified today on their bill to protect persons with ALS and other disabilities' access to care and block use of discriminatory methods to determine cost-effectiveness of medical treatments and drugs.



In Support of H. 201 and S. 753
“An Act Advancing Health Care Research and Decision-Making Centered on Patients and People with Disabilities”

Offered by: John Hedstrom, Executive Director The ALS Association, Massachusetts Chapter


Dear Chairs Friedman and Lawn and Members of the Joint Committee on Health Care Financing:

I am John Hedstrom, Executive Director of the ALS Association, Massachusetts Chapter and I appear before you today to urge your support of H. 201 and S. 753.

The ALS Association serves approximately 20,000 persons with ALS nationwide on an annual basis, of which our Chapter serves 500 persons. Every 90 minutes, someone is diagnosed with ALS, more than 5,000 people a year. Every 90 minutes, someone passes away from ALS – a terrible disease that is 100 percent fatal. My testimony today seeks to ensure there are no unnecessary barriers to access to care nor an ability to utilize discriminatory metrics in determining cost-effective medical care.

H.201 is necessary because the Massachusetts Health Policy Commission signed a contract with the Institute for Clinical and Economic Review (ICER), which could lead to the use of ICER’s Quality-Adjusted Life Year (or QALY) in determining the cost-effectiveness of medical treatments and interventions.

What is QALY? It is a disability weight applied to a person’s level of health. Think of a sliding scale from zero, which constitutes death, to one, which constitutes a year of perfect health. Generally, someone with a disability or disease will be quantified somewhere between zero and one based on the severity of the disability or disease. It does not account for how an individual would value their health and life, nor would it account patient variation in clinical care.

How does QALY work? QALY’s methodology, and others like it, is discriminatory on its face and in its application. It pits persons with disabilities and chronic disease against persons considered healthy. It places a price tag on the value of living a full year of life in perfect health. Drugs that do not offer a full year of life, or that offer less-than-full quality of life, are rated lower on QALY’s scale and, thus, may not qualify for reimbursement.

What is the impact of QALY on persons with ALS? When analyses have applied QALY to a person with ALS, their score reflects a number less than zero or a state worse than death. Bluntly, it would be more cost-effective to let that person die than provide them with treatments that are anything less than a cure. The ALS community does not take such a draconian view. They are some of the strongest, most hopeful people I know living with a fatal disease. Upon diagnosis, persons with ALS have a life expectancy of 2 to 5 years. A drug that allows them to live 6 to 8 to 12 months longer can seem like a lifetime. They value treatments that maintain their independence and provide more time with loved ones that much longer.

Massachusetts is the home of the Ice Bucket Challenge, infusing well-over $100 million into ALS research. Massachusetts is a world leader in ALS research and home to several pharmaceutical companies leading the fight to end ALS, including Amylyx, a Cambridge-based company, which recently filed for FDA approval of its drug – the first in over two decades.

Massachusetts citizens deserve the protections included in H201, which:
• Bans the use of QALY and other discriminatory metrics which use averages to determine the effectiveness and value of treatments
• Installs a requirement for Massachusetts to rely on research that meets the criteria of patient-centered outcomes and scientific rigor.
• Involves patients and people with disabilities in a substantive manner in the state’s decision-making processes.
• Ensures patients and physicians remain the ultimate decisionmakers in the provision of clinical care with an appellate process and physician override mechanism.

ALS is an incredibly complicated disease, but we are learning and discovering more every single day. I urge you to enact H. 201 and S. 753, as well as H. 1256 which you are also considering today, and ensure that Massachusetts does not put up an unnecessary roadblock to access to treatments based on a discriminatory method of valuing human life.

Thank you for your time.

Author Information:

John Hedstrom is the Executive Director of The ALS Association Massachusetts Chapter. John came to the Chapter by way of Washington, DC and California with an extensive background in health care advocacy and association executive leadership. He has effected change and served as the front-line voice for multiple national organizations, establishing himself as a trusted resource for many constituencies. John was born and raised in Massachusetts and now resides in the area with his wife and three children. In his tenure at The ALS Association Massachusetts Chapter, John has worked tirelessly to lead the Massachusetts Chapter to the forefront of the ALS Association. He continues to prioritize providing our families with more comprehensive care services, funding additional research, and more robust advocacy efforts.

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