The federal government continues to tout the need for price controls to improve health care affordability. The latest approach, Most Favored Nation (MFN), would tie U.S. pharmaceutical prices to those set by foreign governments. While it may sound good in theory, in practice, these kinds of price-setting policies threaten access to treatments and chill research and development into the cures of tomorrow. These policies also do nothing to address pharmacy benefit managers or large health insurers that continue to profit off the backs of patients.
Specifically, by tying prices to European counties, MFN risks bringing QALYs to the U.S. QALYs, or quality-adjusted life years, is rationing by another name. QALY-based systems undervalue medicines and assign numerical values to patients’ lives based on health status. As such, QALYs place greater value on years lived in full health and place less value on gains in health with those with chronic diseases, disabilities, or rare conditions – they ignore what makes people human and silence the voices of vulnerable populations who need vital care.
This approach risks deepening health disparities by favoring younger and healthier populations, limiting access to care for patients, and discouraging innovation in treatments that serve smaller patient communities but have life-changing impact.
The greatest concern with MFN is not simply government price-setting, but that it could import the same value-assessment framework that has long been criticized for discriminating against patients with chronic illnesses and disabilities. While policymakers often frame these proposals as affordability reforms, they do little to address increasing health care costs and restricting access. Plus, QALY-based systems have been found to violate the Americans with Disabilities Act.
Health care affordability remains a serious challenge in the United States, with four in ten adults reporting that they have rationed or skipped prescribed medications because of cost. But rationing through QALY-based price controls is not a patient-centered solution; instead, policymakers should address the entities deciding what medicines patients can access and what they pay – PBMs and insurers.
In California, these concerns are especially relevant as policymakers continue debating how affordability should be measured and who gets a voice in those decisions. For patient advocates, the issue is not just cost, but whether state entities such as the Office of Health Care Affordability (OHCA) will approach drug policy in ways that reflect real patient experience rather than abstract formulas.
The California Rare Disease Caucus’ push for stronger patient representation within OHCA underscores the need for decision-making processes that are transparent, inclusive, and grounded in the realities of people living with chronic and rare conditions. If California wants to lead on affordability, it should reject policies that enable QALY-like rationing and instead center the voices of the patients most affected.
Government price-setting policies that rely on MFN and QALY-driven measurements risk reducing patients to metrics rather than recognizing their individual needs. For patients living with rare diseases, disabilities, and chronic conditions, access to treatment should not depend on formulas that discount the value of their lives. Policymakers must pursue reforms that ensure every patient has access to the treatments that best meet their unique health needs.
