PIPC Weekly Update: May 18, 2026

In this week's edition...

— MFN Policies Devalue Patients, Limiting Treatments for People like Gerry. We must not import access restrictions that devalue people living with chronic illnesses.
-- PIPC Provides Additional Comments to Minnesota PDAB. View the PIPC letter here.
-- PIPC Report: The UK Health System, Lessons for the U.S. and the Risks of MFN Drug Pricing. Click here to read the full report.
-- Indiana Withdraws from Attack on Section 504 of the Rehabilitation Act and the Integration Mandate. View the Arc of Indiana press release HERE. Learn more HERE about how state advocates are pushing back.
-- Accessible Healthcare for People with Disabilities: An Implementation Guide for Healthcare Organizations. View and share the resource HERE.
-- Liver Disease Set of Patient-Centered Outcome Measures. To learn more about this project, please visit the website here. You can share the patient survey here.
-- Most-Favored-Nation (MFN) Drug Pricing: You Can’t Import European Prices Without Importing European Tradeoffs. View and share HERE.
-- Former Members of Congress and Physicians Call Out How MFN Devalues Disabled Lives. View the article here.
-- Michigan Seeks to Incorporate QALYs into Appropriations Bill. View the letters HERE. 
— Patients and People with Disabilities Urge Policymakers to Reject Importing Foreign Drug Pricing Policies. View PIPC’s response to the SOTU here. View the letters from 119 organizations to CMS commenting on the GLOBE and GUARD models here. View the blog here. Learn more about the implications of importing QALYs here.
​-- Opportunity: Sign an Open Letter Rejecting Use of QALYs and Similar Measures. See details below.
— Emerging Threats in States for Use of Discriminatory Metrics. See details below.
— What Happens in Countries Using QALYs and Cost-Based Thresholds? See details below.
— ICER's QALY-Based Study Topics. See details below.
— Upcoming Events and Webinars. See details below.

What We're ReadingPIPC welcomes new members to advance our efforts to assure patients and people with disabilities are at the center of research and policy! Please reach out to [email protected] for more information.

1. MFN Policies Devalue Patients, Limiting Treatments for People like Gerry. Patients abroad struggle to access novels medications, importing these policies risks importing the same challenges for American patients. Gerry, an Irish patient, lives with Primary Biliary Cholangitis (PBC). There are novel treatments available for PBC but Gerry cannot access them in Ireland despite the fact that he would benefit from these treatments most now, before he starts showing symptoms and progressing towards liver failure. We must not import access restrictions that devalue people living with chronic illnesses.

2. PIPC Provides Additional Comments to Minnesota PDAB. At the April, 2026 meeting, the Minnesota Prescription Drug Affordability Board had the opportunity to learn from the results of a patient-led survey related to the affordability of medications. During the conversation, the board indicated that it was not positioned to address patient out-of-pocket costs. PIPC has not received a response to its letter in September 2025 providing the PDAB with information on the laws and regulations governing the use of discriminatory value assessments. Therefore, PIPC provided a letter to the PDAB urging it "to pause its work and to collaborate with patients and people with disabilities on a process that is transparent, includes their meaningful engagement, and safeguards against discrimination in a manner that is compliant with federal laws against use of measures that devalue disabled lives.” View the PIPC letter here.

3. Most-Favored-Nation (MFN) Drug Pricing: You Can’t Import European Prices Without Importing European Tradeoffs. The IP Policy Institute published a blog written by Dr. Gabriela Lenarczyk, a Postdoctoral Fellow at the International Center for Bioscience Innovation Law (Inter-CeBIL), providing a uniquely European perspective of the implications of importing prices (i.e. QALYs) from other countries. In a nutshell, consistent with the National Council on Disability statement that referencing international prices risks similar coverage denials, the piece concludes: "Borrowing Europe’s observable prices risks borrowing some of the trade-offs embedded in European pricing systems.” Her conclusions are consistent with those of PIPC and the patient and disability communities that have long opposed policies like Most Favored Nation. We know that other countries rely on QALYs to make decisions about reimbursement and coverage that are explicitly barred from use in Medicare here in the U.S. The blog takes a deeper dive into the tradeoffs that European systems tolerate and that the U.S. would be importing - with the biggest impact on access for the patient and disability communities that U.S. laws barring QALYs and similar measures are intended to protect. View and share HERE.

4. Indiana Withdraws from Attack on Section 504 of the Rehabilitation Act and the Integration Mandate. Texas and seven other states – Alaska, Florida, Kansas, Louisiana, Missouri, Montana, and South Dakota – renewed their attack on Section 504 of the Rehabilitation Act and the integration mandate. In the new complaint, the states are now asking the court to: (1) declare that the entire Section 504 rule is unlawful; (2) stop the Department of Health and Human Services (HHS) from enforcing the entire rule; and (3) stop HHS from telling states they cannot take actions that place people with disabilities at “serious risk” of institutionalization. If the states' challenge is successful, the disability community will experience greater difficulty participating in their communities. In good news, the Arc of Indiana announced that the Attorney General dropped out of the lawsuit, demonstrating the power of advocacy. View the Arc of Indiana press release HERE. Learn more HERE about how state advocates are pushing back.

5. Accessible Healthcare for People with Disabilities: An Implementation Guide for Healthcare Organizations. People with disabilities continue to face significant barriers to high-quality healthcare. Disability Equity Collaborative's new Implementation Guide is a comprehensive resource to help healthcare organizations close those gaps. Designed for organizations of all sizes — from small rural clinics to large health systems — the Guide supports any role, from frontline staff to executive leadership. It includes four chapters: (1) Building a Disability Accessibility Program; (2) Documenting Disability Status and Accommodation Needs; (3) Providing Accommodations; and (4) Effective Communication.

View and share the resource HERE.

6. Liver Disease Set of Patient-Centered Outcome Measures. ICHOM is currently working on a Liver Disease Set of Patient-Centered Outcome Measures seeking your support by sharing the Patient Validation Survey with your members and networks. They are seeking feedback from people living with liver disease, as well as carers, to ensure that the outcomes we measure truly reflect what matters most to patients and families. To learn more about this project, please visit the website here. The ICHOM Liver Disease Working Group is entering a key phase of this project, and this survey is a vital opportunity to shape a meaningful, patient-centered outcomes set. The survey is anonymous and takes only a few minutes to complete. You can share the patient survey here (currently available in the US, UK, Malaysia and New Zealand).

7. PIPC Report: The UK Health System, Lessons for the U.S. and the Risks of MFN Drug Pricing. ​Debate over drug pricing and health care affordability in the U.S. has put a renewed spotlight on costs in other countries compared to the U.S., and on the tools used in other countries to control costs. 

A number of leading stakeholders and researchers have noted that application of foreign reference pricing in the U.S. — for example, through the recent “Most Favored Nation” (MFN) proposals — would have the effect of importing the standards and values that those countries rely on in setting health care policy, and that these standards often do not reflect the values and preferences of U.S. patients and consumers. First and foremost among these is the quality-adjusted life year (QALY), a metric used by the UK and many other developed nations, including 18 of the 19 countries referenced in MFN proposals during the second Trump administration.

For several decades, the QALY has been widely recognized as being inappropriate for use in the U.S. In 1992, the Bush administration prevented use of QALYs to prioritize services available under a state Medicaid waiver. The Affordable Care Act (ACA) included a prohibition on use of QALYs or similar metrics in Medicare coverage and reimbursement decisions, reflecting concerns about the discriminatory implications of these approaches. These patient-focused safeguards are not present in many of the countries whose pricing systems are now being referenced in U.S. policy discussions. Further, the QALY is only one component of a broader set of health technology assessment (HTA) practices used internationally to evaluate treatments and determine access.

PIPC released a white paper examining how HTA processes in the UK diverge from the U.S.’ patient-centered principles, including key shortcomings such as: (1) failure to meaningfully capture the full range of outcomes (health and quality of life) that matter to patients and caregivers; (2) imposition of evidence standards that disadvantage patients with serious diseases and conditions; (3) lack of transparency and flexibility in HTA processes; and (4) failure of patient input to meaningfully shape decision outcomes.

​Together, these features can result in patients in the UK encountering long delays in access to new tests and treatments and reduced flexibility for physicians to tailor care to the needs of different patients. As U.S. policymakers consider approaches such as MFN pricing, understanding how these underlying systems shape access and decision-making is critical to ensuring that efforts to lower costs do not come at the expense of patient-centered care.

Click here to read the full report.

8. Former Members of Congress and Physicians Call Out How MFN Devalues Disabled Lives. Republicans and Democrats have historically agreed on laws and policies banning QALYs and similar measures from being used in the United States to determine reimbursement and coverage policies. It is a rare example of bipartisanship opposing disability discrimination now threatened by efforts to advance "Most Favored Nation" pricing. In a new article from former Members of Congress, Drs. Larry Bucshon and Michael Burgess, they stated "Polling shows that voters across parties overwhelmingly oppose QALY-based rationing. More than eight in 10 voters say they are concerned about government and insurers making drug pricing and reimbursement decisions based on blanket cost-effectiveness metrics. Because foreign pricing relies on QALYs, indexing U.S. drug prices to those set by foreign health bureaucracies would necessarily import QALYs as well. As a result, the U.S. would at once begin devaluing lifesaving treatments for millions of patients. That prospect should prompt widespread resistance. Mimicking foreign health systems’ price controls might look like a shortcut to savings. But by importing prices that reflect QALY-based metrics, we would simply be outsourcing our decisions about which patients deserve treatment. That bureaucratic rationing has no place in a country that recognizes the equal dignity of every human life.” View the article here.

9. Michigan Seeks to Incorporate QALYs into Appropriations Bill. Last week, a provision popped into a Michigan appropriations bill that calls for incorporating the President’s Most Favored Nation Executive Order. The wording is vague and broad, making it that much more concerning. It calls for incorporating the Order into "both Medicaid managed care and fee-for-service pharmaceutical products specifically seeking most-favored-nation pricing for high-cost pharmaceuticals on this state’s preferred drug list.” PIPC sent a letter to the Michigan legislature "to urge the legislature to avoid policies that would devalue disabled lives by relying on measures such as the Quality-Adjusted Life Year (QALY) that have detrimental implications for access to needed care and treatment.” PIPC explained the current federal laws that prohibit the use of QALYs and similar measures. Color of Gastrointestinal Illnesses (COGI) and a COGI Ambassador shared similar concerns stating, "Therefore, COGI has real concerns that this new policy proposing to import international prices may lead to Michigan patients experiencing the same care denials and delays that are seen in other countries. Other countries consider less effective and older drugs as therapeutic alternatives, despite evidence that they are not necessarily interchangeable for patients in the real world. Patients with Crohn’s disease are often forced to cycle through many treatments before finding the one that works for them. The experience of patients in other countries should be a warning not to model their systems of health care.” View the letters HERE. 

10. Patients and People with Disabilities Urge Policymakers to Reject Importing Foreign Drug Pricing Policies. As Congress and the administration continue to debate policies like Most Favored Nation that would import foreign drug pricing policies to the U.S., patients and people with disabilities have shared their opposition and stories from patients in Canada and Europe to underscore the implications for access to care. PIPC Chairman Tony Coelho stated, “Both sides of the aisle have long opposed the use of quality-adjusted life years (QALYs) to value health care. No one is arguing with the need to address affordability. But Most Favored Nation only sounds good because its supporters fail to explain to Americans how people with disabilities and chronic conditions that most need relief are devalued and therefore denied or delayed access to care in the foreign countries being modeled.” Recently, PIPC Chairman Tony Coelho published a Chairman Blog highlighting how the proposed policies are contrary to U.S. law banning the use of QALYs and similar measures in Medicare coverage and reimbursement decision. He stated, "A report by the Office of Health Economics (OHE) – the world’s oldest health economics research organization – confirms what we’ve been warning about for years. If the U.S. references prices in other countries, we’ll be embracing decisions that employ the quality adjusted life year (QALY). In fact, OHE’s analysis shows that 18 of the 19 countries referenced in CMS’ GLOBE and GUARD models make use of QALYs in their decisions about value and pricing. There’s no denying that these two major new policy changes – proposed under the guise of “models” or “demonstrations” by the Center for Medicare and Medicaid Innovation (CMMI) – will import the use foreign value standards that devalue people with disabilities, older adults, and other groups.” We look forward to working with Congress and the administration on policies that promote equal access to affordable health care for all Americans. View PIPC’s response to the SOTU here. View the letters from 119 organizations to CMS commenting on the GLOBE and GUARD models here. View the blog here. Learn more about the implications of importing QALYs here.

11. Opportunity: Sign an Open Letter Rejecting Use of QALYs and Similar Measures. Please join PIPC, ALS Association, Alliance for Aging Research, American Association of People with Disabilities, Epilepsy Foundation of America and Patients Rights Action Fund in signing an Open Letter opposing the direct or indirect reference to QALYs and similar measures! It is our goal to capitalize on the long history of robust, bipartisan opposition to QALY-based policies in Medicare and Medicaid that underscores America’s core belief that the lives of individuals with disabilities, older adults and infants are worth just as much as any other person.

The central theme of the updated letter is this: All lives are valuable, and our health care policy should adhere to this fundamental American belief. We strongly urge policymakers to reject policies that would devalue and ration care for any American whether modeled after foreign or domestic value assessment methodologies. 

Click HERE to sign the updated Open Letter. Note we will add new signatories every few days to the updated letter which is available to share with policymakers here.

Learn More About Emerging Threats in States for Use of Discriminatory Metrics

Several states are advancing policies that would reference quality-adjusted life years (QALYs) and similar measures known to discriminate and devalue people with disabilities and serious chronic conditions, despite laws barring their use. Contrary to the law, these measures are considered by some to be the “gold standard” for measuring cost effectiveness of treatments, including the Institute for Clinical and Economic Review (ICER) and by foreign countries. Their use as a reference for U.S. coverage and reimbursement decisions is concerning due to implications for access to care, as seen internationally where a focus on cost effectiveness disadvantages coverage of health care for people with conditions that are chronic or disabling. To keep track of state-based threats, several resources are available:

• Patient Access Project State-by-state tracker of QALY-based policies and legislation, including Prescription Drug Affordability Boards, P&T Committees, and reference to discriminatory policies in foreign countries. 
• Value Of Care Coalition advocacy tracker of state PDAB comment opportunities.
• AIMED Alliance resources and tracker of state PDAB activities.
• PIPC resources on use of QALYs and similar measures internationally.
• EACH/PIC Coalition resources.
• Value Our Health toolkit and resources on implications for disability discrimination. 

International News: What Happens in Countries Using QALYs and Cost-Based Thresholds?Other countries are often referenced as examples of how the use of QALYs or similar cost-based thresholds impact access to care.

• Australia. An Australian woman with rare mucosal melanoma says patients often have to wait until their cancer becomes more advanced before they qualify for potentially life-saving medicines. That’s the danger of systems built around strict cost control: access comes late, when patients can least afford delay.

 

• Australia. With millions potentially living with undiagnosed kidney disease, advocates are pushing for testing + access to medicines that can delay progression for years. Australia is a reminder that squeezing health budgets doesn’t solve disease burden.

 

• Canada. In Canada, millions want access to GLP-1 medicines, but cost and coverage barriers stand in the way. Even with growing demand, many patients still pay out of pocket or face partial coverage.

 

• New Zealand. A New Zealand family has had to raise more than $55,000 just to keep paying for a cancer medicine not funded by Pharmac. That’s what happens in systems built around rigid reimbursement limits: if the government says no, families are left to fundraise for treatment on their own.

 

• New Zealand. A father in New Zealand had to leave his children behind and go to Australia for cancer treatment because the drugs he needed weren’t funded at home. That’s what happens under heavily constrained pricing systems: “savings” on paper, patients shut out in real life.

 

• New Zealand. Doctors in New Zealand are warning that cancer patients are falling behind the rest of the world because access to medicines is too limited. Foreign reference pricing is often sold as cost control, but the real tradeoff is fewer treatment options and worse outcomes.

 

• New Zealand. New Zealand specialists are pleading for funding for medicines that are already standard of care overseas. That’s the risk of importing foreign price controls: narrower access for patients that are readily available in other countries.

 

• New Zealand. New Zealand is only now widening access to cystic fibrosis medicines that patients have fought years to obtain. These types of discriminatory pricing systems contribute to delayed access, long waits, and patients left behind while governments ration care.

 

• New Zealand. A New Zealand mother with leukemia is stuck in months-long delay for a stem cell transplant, forcing more toxic treatment and reducing her odds. Cost-constrained systems don’t just affect prices — they can choke the whole care pathway.

 

• South Korea. South Korea is rolling out a “flexible” drug pricing system designed to manage budget pressure and avoid launch delays. But when a country has to redesign pricing rules just to keep companies from delaying launches, that tells you the system is broken.

 

• South Korea. Korea’s own breakthrough epilepsy drug has succeeded overseas but still faces reimbursement delays at home. That’s a telling sign: under government-driven pricing systems, even domestic innovation can struggle to reach patients quickly.

 

• United Kingdom. The UK licensed two Alzheimer’s drugs, but NICE blocked NHS access after deciding the benefits were too small relative to cost. Now the agency has been ordered to reconsider. That’s the risk of government price gatekeeping: patients can be denied access to scientific progress even after regulators approve it. 

 

• United Kingdom. In the UK, a brain cancer patient is fighting for access to a drug available in Scotland but not in other parts of the country.

 

• United Kingdom. A UK cancer patient says a clinical-trial drug helped him live “a normal life again” — but NICE initially rejected it for broader NHS use. That’s the danger of systems built around reference pricing and QALYs: some patients get life-extending medicines through trials or private care, while others are left out.

 

• United Kingdom. The NHS is only now making a menopause available for some patients, even though it was approved back in 2023. Most Favored Nations pricing doesn’t just mean lower prices — they often mean slower access and narrower coverage.

ICER's QALY-Based Study Topics

The Institute for Clinical Economic Review (ICER) conducts cost effectiveness studies for insurers using the cost-per-QALY methodology. ICER provides guidance on its website for patients and patient advocates to provide direct input related to their experiences with the disease. Click here to provide patient input. Click here to view the topics and deadlines.

View PIPC value assessment resources on gene therapies here, on health equity here and an analysis on lack of patient-centered outcomes in value assessment here.

• Hypertension: Research Protocol available. Public meeting: October 2026.

 

• Parkinson's Disease: Research Protocol available. Public meeting: October 2026.

 

• COVID-19: Draft Evidence Report available. Public meeting: June 2026.

 

• Narcolepsy: Evidence Report and Evidence Presentation available. Public meeting: May 2026.

 

• Launch Price and Access Report: Drug Approvals from 2022-2025: Protocol available. Public Meeting: October 2026.

 

• Strengthening the FDA's Accelerated Approval Pathway: Progress and Unfinished Business: White Paper published on April 16, 2026.

 

• IgA Nephropathy: Final Evidence Report and Meeting Summary available.

 

• Launch Price and Access Report: Drug Approvals from 2023-2024: Final Report and Webinar Recording available.

 

• Smoking Cessation: Final Evidence Report and Meeting Summary available.

 

• Obesity Management: Final Evidence Report and Meeting Summary available.

 

• Examining Strategies to Ensure Affordable Access for Obesity Medications: White Paper published on April 9, 2025.

 

• Non-Cystic Fibrosis Bronchiectasis: Final Evidence Report and Meeting Summary available.

 

• Spinal Muscular Atrophy: Final Evidence Report and Meeting Summary available.

 

• Multiple Sclerosis — SPMS: Final Evidence Report and Meeting Summary available.

 

• Retinitis Pigmentosa: Final Evidence Report and Meeting Summary available.

Upcoming Events and Webinars

​Meeting: Maryland PDAB
May 18, 2026
Click here to view.

Meeting: Maine PDAB
May 18, 2026
Click here to view.

Meeting: Washington State PDAB
May 20, 2026
Click here to view.

Meeting: Oregon PDAB
May 20, 2026
Click here to view.