NCD letter to POTUS regarding drug pricing

June 25, 2025

President Donald J. Trump
The White House
1600 Pennsylvania Ave. NW
Washington, DC 20500

Dear President Trump,

I am writing in my capacity as Vice Chair / Acting Chair of the National Council on Disability (NCD), an independent, bipartisan federal agency that advises Congress, President, and his Administration, regarding your May 12, 2025 Executive Order titled, “Delivering Most Favored Nation Prescription Drug Pricing to American Patients,” in which you directed U.S. Department of Health and Human Services Secretary Kennedy; Vince Haley, Assistant to the President for Domestic Policy; and Centers for Medicare & Medicaid Services Administrator Oz to communicate most-favored-nation price targets to pharmaceutical manufacturers to bring prices down in line with other comparably developed nations. NCD offers our advisement in future activities surrounding this laudable goal.¹

NCD agrees that the high prices of prescription drug prices place an undue financial burden and indeed act as a barrier to many Americans from maintaining good health, including Americans with disabilities, who are significantly more likely to have unmet prescription needs than nondisabled peers.² In many instances, these prescription drugs are the difference between stable health and acute care crisis; or between life and premature death. These stark contrasts compromise the quality of life of far too many Americans, and NCD supports your goal in lowering prescription drug prices and in “making America healthy again” through the concerted campaigns of your administration.

NCD has extensively covered the topic of the health status (and disparities) of Americans with disabilities for the last 15 years and recently offered our assistance and research to Secretary Kennedy and his Make America Healthy Again Commission’s work.

In 2009, NCD issued a comprehensive report titled “The Current State of Health Care for People with Disabilities,” in which we highlighted the numerous challenges that people with disabilities face when accessing health care, and the stark health outcome disparities that exist as a result.³ In 2019, we issued a report titled “Quality-Adjusted Life Years (QALY) and the Devaluation of Life with a Disability” and in 2022, we reprised the topic by offering “Alternatives to QALY-Based Cost Effectiveness Analysis for the Value of Prescription Drugs and Other Health Interventions.”⁴ The 2019 report described how use of the QALY in Standard cost-effectiveness analysis (CEA) results in undervaluing prescription drugs that extend the lives of people with disabilities, resulting in restricted insurance coverage in countries where it is commonly utilized to inform coverage decisions. In the 2022 supplement, we described alternatives to the QALY developed in recognition to the ethical concerns and discriminatory aspects of the QALY and briefly described each of methodological alternatives and their strengths and weaknesses. Also in 2022, we offered advisement to policymakers within a health policy framework that seeks to end the health disparities experienced by people with disabilities and improve health care access and experiences of Americans with disabilities, sharing the Make America Health Again executive order’s goal to prize health promotion and disease prevention.⁵

We hope that the hard work of Secretary Kennedy and Administrator Oz and others will result in voluntary agreement from the industry to lower pricing to offered targets. However, in absence of that, should your administration pursue rulemaking to effectuate drug price changes, we strongly urge you to consult NCD for advisement and briefing on our research to ensure that in pursuit of your most worthy goal of lowering drug prices, the prices are not lowered with the unintended consequence of discrimination against Americans with disabilities.

NCD’s health disparities work has been informed by what we consider a “dream team” of interdisciplinary experts that have helped advise the Council’s deliberations, including practicing physicians, members of the allied health professions, academics, and researchers. With the benefit of their in-the-field insights, the policy expertise and research of NCD, and NCD’s established knowledge of the disability community, we can offer added practical value to your ongoing policy discussions, and we are prepared to do so immediately.

If NCD can assist the Administration’s activities in pursuit of lower drug prices through a briefing or consultation, please do not hesitate to contact me or my Executive Director, Ana Torres-Davis, at atorresdavis@ncd.gov. We stand ready to serve.

Respectfully,

David Shawn Kennemer
Vice Chair, Acting Chair

Cc: The Honorable Robert F. Kennedy, Jr.

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