PIPC submitted written testimony in Massachusetts supporting S. 465. S. 465 includes language that would bar the use of the discriminatory quality-adjusted life year (QALY) and similar metrics. The language mirrors the language barring the QALY and similar metrics included in Medicare. The bill includes several other critical patient protections, including requirements for patient centered research and a physical override mechanism.
Dear Chair Jehlen, Chair Stanley and Members of the Joint Committee on Elder Affairs:
I am writing on behalf of the Partnership to Improve Patient Care (PIPC) to express support for S. 465, An Act supporting individuals suffering with amyotrophic lateral sclerosis and their families. This bill includes critical protections against discrimination in health care for people with disabilities and chronic illnesses. Passing this bill would mark a critical step in curbing the discrimination people with disabilities and chronic illnesses have long experienced in health care.
S. 465 would enshrine essential patient protections including: a ban on the use of the Quality-Adjusted Life Year (QALY) and similar measures, a requirement for Massachusetts to rely on research that meets criteria of patient-centeredness, robust engagement with patients and people with disabilities, and an appeals and physician override mechanism. These are critically important provisions to ensure people with disabilities and chronic illnesses are able to access the care they need without discriminatory barriers.
Assessments based on QALYs and similar measures assign a financial value to health improvements provided by a treatment that do not account for outcomes that matter to people living with the relevant health condition and that attribute a lower value to life lived with a disability. When applied to health care decision-making, the results can mean that people with disabilities and chronic illnesses, including older adults, are deemed not worth the cost to treat. For decades, the patient and disability communities have opposed the use of the discriminatory QALY to determine cost effectiveness or “value” of treatments. The National Council on Disability (NCD), an independent federal agency, concluded in a 2019 report that QALYs place a lower value on treatments which extend the lives of people with chronic illnesses and disabilities. NCD recommended that policymakers and insurers reject QALYs, concluding the use of the QALY would be contrary to United States disability policy and civil rights laws.
The United States has a thirty-year, bipartisan track record of opposing the use of the QALY and similar discriminatory metrics and has established appropriate legal safeguards to mitigate their use. Section 504 of the Rehabilitation Act ensures that people with disabilities will not be “excluded from participation in, be denied the benefits of, or otherwise be subjected to discrimination,” under any program offered by any Executive Agency, including Medicare, with new regulations explicitly barring use of discriminatory value assessments in decisions impacting access to care. Title II of the Americans with Disabilities Act (ADA) extended this protection to programs and services offered by state and local governments. Following the ADA’s passage in 1990, HHS rejected a state waiver application in 1992 because its reliance on QALYs and cost effectiveness standards would have violated the ADA and led to discrimination against people with disabilities in determining the state’s prioritized list of services.
In 2010, the Affordable Care Act (ACA) prohibited QALYs and similar metrics from being used by HHS as a threshold to establish what type of health care is cost effective or recommended, as well as prohibiting their use as a threshold in Medicare to determine what is covered, reimbursed or incentivized.
Much to our concern, despite this clear precedent, QALYs continue to be referenced in health care policies. It is particularly concerning that the Massachusetts Health Policy Commission is working with the Institute for Clinical and Economic Review (ICER), which is on record stating that QALYs are the “gold standard.” To mitigate against use of ICER’s assessments or assessments using a similar QALY-based methodology to dictate access to care in Massachusetts, it is imperative that strong patient protections are codified into law.
An Act supporting individuals suffering with amyotrophic lateral sclerosis and their families would address these issues and mitigate use of discriminatory value assessments against residents of Massachusetts living with disabilities.
Sincerely,
Thayer Surette Roberts
Deputy Director
Partnership to Improve Patient Care
I am writing on behalf of the Partnership to Improve Patient Care (PIPC) to express support for S. 465, An Act supporting individuals suffering with amyotrophic lateral sclerosis and their families. This bill includes critical protections against discrimination in health care for people with disabilities and chronic illnesses. Passing this bill would mark a critical step in curbing the discrimination people with disabilities and chronic illnesses have long experienced in health care.
S. 465 would enshrine essential patient protections including: a ban on the use of the Quality-Adjusted Life Year (QALY) and similar measures, a requirement for Massachusetts to rely on research that meets criteria of patient-centeredness, robust engagement with patients and people with disabilities, and an appeals and physician override mechanism. These are critically important provisions to ensure people with disabilities and chronic illnesses are able to access the care they need without discriminatory barriers.
Assessments based on QALYs and similar measures assign a financial value to health improvements provided by a treatment that do not account for outcomes that matter to people living with the relevant health condition and that attribute a lower value to life lived with a disability. When applied to health care decision-making, the results can mean that people with disabilities and chronic illnesses, including older adults, are deemed not worth the cost to treat. For decades, the patient and disability communities have opposed the use of the discriminatory QALY to determine cost effectiveness or “value” of treatments. The National Council on Disability (NCD), an independent federal agency, concluded in a 2019 report that QALYs place a lower value on treatments which extend the lives of people with chronic illnesses and disabilities. NCD recommended that policymakers and insurers reject QALYs, concluding the use of the QALY would be contrary to United States disability policy and civil rights laws.
The United States has a thirty-year, bipartisan track record of opposing the use of the QALY and similar discriminatory metrics and has established appropriate legal safeguards to mitigate their use. Section 504 of the Rehabilitation Act ensures that people with disabilities will not be “excluded from participation in, be denied the benefits of, or otherwise be subjected to discrimination,” under any program offered by any Executive Agency, including Medicare, with new regulations explicitly barring use of discriminatory value assessments in decisions impacting access to care. Title II of the Americans with Disabilities Act (ADA) extended this protection to programs and services offered by state and local governments. Following the ADA’s passage in 1990, HHS rejected a state waiver application in 1992 because its reliance on QALYs and cost effectiveness standards would have violated the ADA and led to discrimination against people with disabilities in determining the state’s prioritized list of services.
In 2010, the Affordable Care Act (ACA) prohibited QALYs and similar metrics from being used by HHS as a threshold to establish what type of health care is cost effective or recommended, as well as prohibiting their use as a threshold in Medicare to determine what is covered, reimbursed or incentivized.
Much to our concern, despite this clear precedent, QALYs continue to be referenced in health care policies. It is particularly concerning that the Massachusetts Health Policy Commission is working with the Institute for Clinical and Economic Review (ICER), which is on record stating that QALYs are the “gold standard.” To mitigate against use of ICER’s assessments or assessments using a similar QALY-based methodology to dictate access to care in Massachusetts, it is imperative that strong patient protections are codified into law.
An Act supporting individuals suffering with amyotrophic lateral sclerosis and their families would address these issues and mitigate use of discriminatory value assessments against residents of Massachusetts living with disabilities.
Sincerely,
Thayer Surette Roberts
Deputy Director
Partnership to Improve Patient Care
| ma_s._465_2025_final_for_submission_.pdf |
