In this week's edition...
— House Appropriations Bill Seeks to Rescind PCORI Funds. View section 530 here. Learn more about PCORI here.
— Tell Congress to Oppose Most Favored Nation Policies Importing QALYs to the U.S. Learn more here. Reach out to your Member of Congress here.
— States Attack Section 504 of the Rehabilitation Act and the Integration Mandate, Impact on People with Disabilities, Rare Diseases and Older Adults Massive. View the Arc of Indiana press release HERE. Learn more HERE about how state advocates can push back.
— Ohioans Oppose MFN Drug Pricing Due to Risks for Rural and Disability Communities. Click here to view Margaret Ann Ruhl's piece and click here to view Pandora Shaw-Dupras' piece.
— MFN Policies Devalue Patients, Limiting Treatments for People like Gerry. We must not import access restrictions that devalue people living with chronic illnesses.
— Most-Favored-Nation (MFN) Drug Pricing: You Can’t Import European Prices Without Importing European Tradeoffs. View and share HERE.
— 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.
— 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.
— Former Members of Congress and Physicians Call Out How MFN Devalues Disabled Lives. View the article 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.
— House Appropriations Bill Seeks to Rescind PCORI Funds. View section 530 here. Learn more about PCORI here.
— Tell Congress to Oppose Most Favored Nation Policies Importing QALYs to the U.S. Learn more here. Reach out to your Member of Congress here.
— States Attack Section 504 of the Rehabilitation Act and the Integration Mandate, Impact on People with Disabilities, Rare Diseases and Older Adults Massive. View the Arc of Indiana press release HERE. Learn more HERE about how state advocates can push back.
— Ohioans Oppose MFN Drug Pricing Due to Risks for Rural and Disability Communities. Click here to view Margaret Ann Ruhl's piece and click here to view Pandora Shaw-Dupras' piece.
— MFN Policies Devalue Patients, Limiting Treatments for People like Gerry. We must not import access restrictions that devalue people living with chronic illnesses.
— Most-Favored-Nation (MFN) Drug Pricing: You Can’t Import European Prices Without Importing European Tradeoffs. View and share HERE.
— 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.
— 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.
— Former Members of Congress and Physicians Call Out How MFN Devalues Disabled Lives. View the article 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 Reading
PIPC 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. House Appropriations Bill Seeks to Rescind PCORI Funds. The House bill providing appropriations for the U.S. Departments of Labor, HHS and Education (Labor/HHS) includes a provision that seems to rescind PCORI funding, although the provision rescinded is not clearly identified nor is it clear what happens to the trust fund and the ongoing PCORI-funded research. As background, the PCOR Trust Fund receives (1) annual mandatory appropriations authorized by Congress, (2) fees on health insurance and self-insured plans, and (3) transfers from the Medicare Part A and Part B trust funds. In 2010, CBO scored PCORI as saving over $2 billion over 10 years. The bill will be heard in the full committee on Tuesday. View section 530 here. Learn more about PCORI here.
2. Tell Congress to Oppose Most Favored Nation Policies Importing QALYs to the U.S. It continues to be important to remind both sides of the aisle that there is a long bipartisan history of opposition to QALYs and importing QALYs isn’t any better. Conversations about a Most Favored Nation model continue on the Hill and we are seeing a cultural shift toward modeling other countries where providing treatment to people who are older or have disabilities may not be considered “worth it.” If anything, Congress should be focused on protecting access to care. Even the National Council on Disability has consistently opposed referencing QALYs, including from other countries, to inform reimbursement/pricing and coverage knowing that QALYs were created to ration health care. Any amendment seeking to codify international reference pricing is inconsistent with policy accomplishments to ban use of QALYs on both sides of the aisle. The Inflation Reduction Act barred use of measures devaluing disabled lives in the Medicare Drug Price Negotiation Program, further making the use of QALYs in Medicare negotiation illegal. The House passed legislation in 2024 that would extend the existing ban on use of QALYs and similar measures across Medicare to other federal programs. Learn more here. Reach out to your Member of Congress here.
3. States Attack Section 504 of the Rehabilitation Act and the Integration Mandate, Impact on People with Disabilities, Rare Diseases and Older Adults Massive. 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, a requirement that individuals with disabilities receive care, services, and education in the most integrated setting appropriate to their needs to prevent unnecessary institutionalization. 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 can push back.
4. Ohioans Oppose MFN Drug Pricing Due to Risks for Rural and Disability Communities. Two opinions have been published recently in Ohio highlighting the risks of Most Favored Nation policies. Margaret Ann Ruhl from Ohio is a former State Representative who recently spoke out against Most Favored Nation policies that she feels are a threat to America’s longterm strength. She stated, "Rural communities already struggle with limited access to specialists, long travel times, and hospitals operating on thin margins. If MFN pricing undermines the investment that supports new treatments and cures, rural patients are likely to feel the consequences first. Fewer breakthrough treatments. Longer waits. More reliance on outdated medications.” View the opinion here.
Pandora Shaw-Dupras is CEO of Easterseals of Central and Southeast Ohio Inc. which serves children and adults with disabilities. She raised concerns for people with disabilities stating, "By tying U.S. drug prices to those set by nations that rely on QALYs, the MFN model effectively outsources American health policy to systems that do not share our civil rights protections. It would allow discriminatory calculations–explicitly rejected by disability advocates and restricted under several U.S. laws–to influence which treatments are developed, covered, or even brought to market here.” View the opinion here.
5. 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.
6. 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.
7. 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.
8. 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).
9. 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.
10. 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.
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:
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.
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.
Upcoming Events and Webinars
Webinar: IPPI on IP at America's 250th
June 10, 2026
Click here to view.
Meeting: Oregon PDAB
June 17, 2026
Click here to view.
Meeting: Maine PDAB
June 22, 2026
Click here to view.
Meeting: Colorado PDAB
June 26, 2026
Click here to view.
Meeting: Washington State PDAB
July 15, 2026
Click here to view.
PIPC 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. House Appropriations Bill Seeks to Rescind PCORI Funds. The House bill providing appropriations for the U.S. Departments of Labor, HHS and Education (Labor/HHS) includes a provision that seems to rescind PCORI funding, although the provision rescinded is not clearly identified nor is it clear what happens to the trust fund and the ongoing PCORI-funded research. As background, the PCOR Trust Fund receives (1) annual mandatory appropriations authorized by Congress, (2) fees on health insurance and self-insured plans, and (3) transfers from the Medicare Part A and Part B trust funds. In 2010, CBO scored PCORI as saving over $2 billion over 10 years. The bill will be heard in the full committee on Tuesday. View section 530 here. Learn more about PCORI here.
2. Tell Congress to Oppose Most Favored Nation Policies Importing QALYs to the U.S. It continues to be important to remind both sides of the aisle that there is a long bipartisan history of opposition to QALYs and importing QALYs isn’t any better. Conversations about a Most Favored Nation model continue on the Hill and we are seeing a cultural shift toward modeling other countries where providing treatment to people who are older or have disabilities may not be considered “worth it.” If anything, Congress should be focused on protecting access to care. Even the National Council on Disability has consistently opposed referencing QALYs, including from other countries, to inform reimbursement/pricing and coverage knowing that QALYs were created to ration health care. Any amendment seeking to codify international reference pricing is inconsistent with policy accomplishments to ban use of QALYs on both sides of the aisle. The Inflation Reduction Act barred use of measures devaluing disabled lives in the Medicare Drug Price Negotiation Program, further making the use of QALYs in Medicare negotiation illegal. The House passed legislation in 2024 that would extend the existing ban on use of QALYs and similar measures across Medicare to other federal programs. Learn more here. Reach out to your Member of Congress here.
3. States Attack Section 504 of the Rehabilitation Act and the Integration Mandate, Impact on People with Disabilities, Rare Diseases and Older Adults Massive. 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, a requirement that individuals with disabilities receive care, services, and education in the most integrated setting appropriate to their needs to prevent unnecessary institutionalization. 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 can push back.
4. Ohioans Oppose MFN Drug Pricing Due to Risks for Rural and Disability Communities. Two opinions have been published recently in Ohio highlighting the risks of Most Favored Nation policies. Margaret Ann Ruhl from Ohio is a former State Representative who recently spoke out against Most Favored Nation policies that she feels are a threat to America’s longterm strength. She stated, "Rural communities already struggle with limited access to specialists, long travel times, and hospitals operating on thin margins. If MFN pricing undermines the investment that supports new treatments and cures, rural patients are likely to feel the consequences first. Fewer breakthrough treatments. Longer waits. More reliance on outdated medications.” View the opinion here.
Pandora Shaw-Dupras is CEO of Easterseals of Central and Southeast Ohio Inc. which serves children and adults with disabilities. She raised concerns for people with disabilities stating, "By tying U.S. drug prices to those set by nations that rely on QALYs, the MFN model effectively outsources American health policy to systems that do not share our civil rights protections. It would allow discriminatory calculations–explicitly rejected by disability advocates and restricted under several U.S. laws–to influence which treatments are developed, covered, or even brought to market here.” View the opinion here.
5. 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.
6. 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.
7. 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.
8. 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).
9. 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.
10. 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.
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. In Australia, families are still fighting to get younger children with severe eczema access to medicines older patients already receive through the pbs. The U.S. should not import pricing systems that delay access and leave families paying thousands out of pocket.
- Australia. An Australian boy with a rare condition may lose his foot because the treatment that could help isn’t listed on the pbs and costs $9,500 a month.
- Australia. Researchers in Australia say glp-1 medicines are reshaping obesity care, but access still depends too much on who can afford them.
- Canada. Canada approved another Alzheimer’s drug, but patients could still wait up to two years for public coverage. That’s the risk of copying foreign pricing systems: approval does not mean access.
- New Zealand. Car T-cell therapy is standard of care in many countries, but New Zealand patients still have access only through clinical trials.
- United Kingdom. England is finally rolling out a Duchenne Muscular Dystrophy drug after a two-year wait that families called agonizing. That’s the danger of systems built around government gatekeeping: patients lose precious time even after breakthroughs exist.
- United Kingdom. In the UK, some insomnia patients must wait for therapy before they can get NHS coverage for a drug that is already helping them, forcing them to pay privately in the meantime.
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.
- Friedreich's Ataxia: Draft Scoping Document available. Public comments are due on June 16, 2026. Public meeting: January 2027.
- Hypertension: Research Protocol available. Public meeting: October 2026.
- Parkinson's Disease: Model Analysis Plan available. Public meeting: October 2026.
- COVID-19: Draft Evidence Report available. Public meeting: June 2026.
- Narcolepsy: Final Evidence Report and Meeting Summary 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
Webinar: IPPI on IP at America's 250th
June 10, 2026
Click here to view.
Meeting: Oregon PDAB
June 17, 2026
Click here to view.
Meeting: Maine PDAB
June 22, 2026
Click here to view.
Meeting: Colorado PDAB
June 26, 2026
Click here to view.
Meeting: Washington State PDAB
July 15, 2026
Click here to view.
