January 25, 2022
(Sent via email)
The Honorable Senator
Cindy Friedman, Chair
Joint Committee on Health Care Financing
24 Beacon Street, Room 313
Boston, MA 02133
The Honorable Representative
John Lawn, Chair
Joint Committee on Health Care Financing
24 Beacon Street, Room 236
Boston, MA 02133
RE: H.1256 / S.745
Dear Chairs Friedman and Lawn:
I write on behalf of the National Council on Disability (NCD), an independent bipartisan federal agency charged to advise the President, his Administration, Congress, federal agencies, and other policymakers on all matters affecting people with disabilities in this country and in our territories. We exercise our charge, in part, by conducting objective and comprehensive investigations, research, and analyses to assist policymakers in the development of their work. Accordingly, I write to advise you that bills H. 1256 / S. 745 are in alignment with the findings and recommendations NCD has made regarding health equity for people with disabilities, to which I draw your attention.
In 2019, NCD released a bioethics series, including reports on quality-adjusted life years (QALYs) and medical futility and disability bias in health care. NCD’s QALY report outlines the QALY’s discriminatory design in that it places a lower value on treatments which extend the lives of people with chronic illnesses and disabilities; and its discriminatory impact in that in countries where the QALY is used, access is restricted to lifesaving and life-extending medications. The report details the viability of alternative cost-effectiveness methodologies to the QALY that are not as inherently discriminatory against people with disabilities – important context since the disability community’s concerns with the QALY can be and have been misunderstood as being opposed to cost-effectiveness analysis generally, which is inaccurate. NCD unequivocally agrees that drug prices need to be lowered, as high drug prices can themselves be a source of health inequity for people with disabilities. However, their lowering should not be based on a pricing methodology that devalues the lives of people with disabilities and has been proven discriminatory in its impact to access to treatment.
More recently, in a report to Congress and the President about the impact of COVID-19 on people with disabilities, NCD found that people with intellectual or developmental disabilities and medically fragile and technology-dependent individuals faced a high risk of being triaged out of COVID-19 treatment when hospital beds, supplies, and personnel were scarce; were denied the use of their personal ventilator devices after admission to a hospital; and at times were denied the assistance of critical support persons during hospital stays. Further, informal and formal Crisis Standards of Care (CSC), pronouncements that guided the provision of scarce healthcare resources in surge situations, targeted people with certain disabilities for denials of care. Regarding CSC, NCD recommends that the US Department of Health and Human Services require all hospitals, hospital systems, and managed care plans that receive federal financial assistance be required to increase nondiscrimination and due process within, CSC guidelines and medical rationing policies adopted during public health emergencies and emergency surge situations; and that states should require hospitals, managed care entities, and healthcare systems operating in the state, including university teaching hospitals and systems, that are licensed, regulated, or certified in the state or that receive any state funding or that serve any Medicaid enrollees to include people with disabilities or disability advocates on their medical ethics committees and in the development, adoption, or revision of crisis standard of care or medical rationing policies.
In November, consistent with our advice regarding its discriminatory nature, NCD advised U.S. Senate leaders to include an unambiguous ban on the QALY within the text of the Build Back Better Act (H.R. 5367) and expressly prohibit its use in Medicaid and Medicare. As we explained in our letter, it is both the QALY’s discriminatory design and impact that have resulted in its rejection in the U.S. in the past. When Oregon attempted to use the QALY in its Medicaid plan in the 1990s, CMS rejected the plan, finding it violated the Americans with Disabilities Act. The history of restricted access occurring in countries utilizing QALY-based cost effectiveness research raised concerns that its use in the U.S. would result in rationing care to seniors and people with disabilities, leading Congress in 2009 to prohibit its use under the Affordable Care Act of 2010 (ACA).
NCD is mere weeks away from releasing a health equity framework for people with disabilities for federal policymakers. Given your committee leadership responsibilities and purview, we invite you to review it on our website once it is published in early February (www.ncd.gov). In it, we provide the rationale for the need of an all-of-government approach to achieving health equity in the U.S. and our territories for the largest unrecognized minority group in this country – 64 million + people with disabilities, and we return again to citing concerns like the QALY and discriminatory use of CSCs, identifying them as pernicious vehicles for disability discrimination.
Bills H. 1256 / S. 745 at this time are in alignment with our federal research and advice to policymakers in their identification of sources of discrimination and their recommendation for its address. If you have any questions about NCD’s research and advice to policymakers on these topics, please do not hesitate to contact our Executive Director, Anne Sommers McIntosh (firstname.lastname@example.org) and our General Counsel and Director of Policy, Joan Durocher (email@example.com). Thank you.
Andrés J. Gallegos
Cc:// Sen. Patrick O’Connor and Rep. Hannah Kane, Ranking Minority
 National Council on Disability, Bioethics and Disability Report Series (2019) https://ncd.gov/publications/2019/bioethics-report-series.
 See Tufts University’s Center for the Evaluation of Value and Risk in Health letter to Massachusetts Joint Committee on Health Care Financing (November 11, 2021), claiming the QALY helps people with disabilities and that H.1256 / S.745 would prohibit all cost-effectiveness analysis – claims inconsistent with NCD’s research in the area. https://cevr.tuftsmedicalcenter.org/news/2021/cevr-faculty-and-staff-state-opposition-to-proposed-massachusetts-legislation-limiting-cost-effectiveness-analysis.
 National Council on Disability, 2021 Progress Report: The Impact of COVID-19 on People with Disabilities (2021) https://ncd.gov/progressreport/2021/2021-progress-report.
 National Council on Disability, Letter to Congress recommending QALY ban in Build Back Better Act (November 12, 2021). https://ncd.gov/publications/2021/ncd-letter-qaly-ban.
 Robert Pear, “White House Expected to Back Oregon’s Health-Care Rationing,” New York Times, March 18, 1993, pg. 00001, https://www.nytimes.com/1993/03/18/us/white-house-expected-to-back-orego....
 See, e.g., statements made during House and Senate debates on health care reform bills in October and November of 2009, expressing concern that U.S. use of cost-effectiveness research, like that utilized in the United Kingdom and Canada, would result in rationing care similar to that experienced by patients in those countries: Senator Kyl (AZ). Congressional Record 155:142 (October 5, 2009) p. S10081; Senator McConnell (KY). Congressional Record 155:19 (October 28, 2009) p. S25860; Senator Kyl (AZ). Congressional Record 155:161 (November 2, 2009) p. S10970; Representative Broun (GA). Congressional Record 155:162 (November 3, 2009) p. H12274; Representative Pitts (PA). Congressional Record 155:163 (November 4, 2009) p. H12293; Senator Roberts (KS). Congressional Record 155:173 (November 20, 2009) p. S11888.