In this week's edition...
— QALYs Devalue the Lives of People with Disabilities. View examples of QALY health utilities that assign a lower value to the lives of people with disabilities here.
— MFN Policies Limit Patients’ Ability to Access Treatments that Work Best for Them. We must not import access restrictions that devalue people living with rare diseases.
— Disability Matters with Joyce Bender: PIPC Chairman Tony Coelho and Rep. Steny Hoyer. Listen to the podcast here.
— PCORI Annual Meeting October 19-20. Click here to register.
— Senator Collins Speaks Up Against Importing QALYs to the U.S., Committee Advances Charlotte’s Bill. The video is available on LinkedIn here and on X here. We encourage others to share PIPC’s social media thanking the Senator on LinkedIn here and on X here. Hear Charlotte herself describe this terrific progress here.
— AMA Opposes Policies Setting Prices by Exclusive Reference to Other Countries or Averages. View the resolution 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.
— Most-Favored-Nation (MFN) Drug Pricing: You Can’t Import European Prices Without Importing European Tradeoffs. View and share 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.
— The Disability Community Voices Concern About Recent DOJ Memorandum. Learn more HERE and HERE.
— 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.
— QALYs Devalue the Lives of People with Disabilities. View examples of QALY health utilities that assign a lower value to the lives of people with disabilities here.
— MFN Policies Limit Patients’ Ability to Access Treatments that Work Best for Them. We must not import access restrictions that devalue people living with rare diseases.
— Disability Matters with Joyce Bender: PIPC Chairman Tony Coelho and Rep. Steny Hoyer. Listen to the podcast here.
— PCORI Annual Meeting October 19-20. Click here to register.
— Senator Collins Speaks Up Against Importing QALYs to the U.S., Committee Advances Charlotte’s Bill. The video is available on LinkedIn here and on X here. We encourage others to share PIPC’s social media thanking the Senator on LinkedIn here and on X here. Hear Charlotte herself describe this terrific progress here.
— AMA Opposes Policies Setting Prices by Exclusive Reference to Other Countries or Averages. View the resolution 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.
— Most-Favored-Nation (MFN) Drug Pricing: You Can’t Import European Prices Without Importing European Tradeoffs. View and share 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.
— The Disability Community Voices Concern About Recent DOJ Memorandum. Learn more HERE and HERE.
— 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. QALYs Devalue the Lives of People with Disabilities. In many other countries, governments use the quality-adjusted life year (QALY) metric to assign a numeric value to patients’ lives and decide whether covering tests, treatments, services, and other forms of care is worth the cost. Decisions based on “cost effectiveness” which is typical in countries that ration care can delay or deny care to people with disabilities. Low QALY values and inaccurate measures of quality of life and health improvement can lead policymakers to determine that care is not cost effective or worth covering. These calculations may fail to reflect how people adapt to disability, the value of greater independence, or the benefits of accommodations and supportive services, yet are being considered for use in the U.S. through Most Favored Nation or international reference pricing schemes. View examples of QALY health utilities that assign a lower value to the lives of people with disabilities here.
2. MFN Policies Limit Patients’ Ability to Access Treatments that Work Best for Them. Devina, the mother of a child with cystic fibrosis shares her story of moving from Iowa to Canada only to learn that in Canada she is not able to access the medication her daughter needs. Devina’s daughter suffers from side effects from the medications currently available in Canada. Despite medications that work better for her existing, she cannot access them and is unable to fully manage her Cystic Fibrosis. We must not import access restrictions that devalue people living with rare diseases.
3. Disability Matters with Joyce Bender: PIPC Chairman Tony Coelho and Rep. Steny Hoyer. In a podcast that was broadcast on July 7, 2026, Tony Coelho and Rep. Steny Hoyer joined the conversation to share what brought them to become disability advocates, sharing the background of the process of passing the Americans with Disabilities Act (ADA) and the bipartisanship that was needed to not only pass the legislation but to ensure its implementation. Tony Coelho shared the importance of the role of President George Bush and his strong commitment to signing it. Other Members of Congress mentioned as champions of the ADA's passage included former Senators Orrin Hatch, Bob Dole, Ted Kennedy and Tom Harkin as well as Rep. Jim Sensenbrenner. The two old friends shared personal stories of witnessing discrimination at an early age and how it drove them to be involved in advancing equal rights. Rep. Hoyer acknowledged the iconic phrase from the Declaration of Independence, "We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.” He stated, "But it takes us to make sure that they are realities. That's what America is about, and that's what America continues to need to be about.” Listen to the podcast here.
4. PCORI Annual Meeting October 19-20. Registration is now open for the 2026 PCORI Annual Meeting, taking place Oct. 19-20, in Washington, D.C. Join patients, researchers and other healthcare decision makers from across the country for two days of learning, collaboration and connection at PCORI’s annual event highlighting patient-centered comparative clinical effectiveness research (CER). Topics include: (1) explore the latest findings from PCORI-funded patient-centered CER.; and (2) hear from healthcare leaders and experts through engaging sessions. Network with a national community committed to improving healthcare decision making and health outcomes. Click here to register.
5. Senator Collins Speaks Up Against Importing QALYs to the U.S., Committee Advances Charlotte’s Bill. On June 17, 2026, during a legislative hearing of the Senate Health Education Labor and Pensions (HELP) Committee, Senator Collins spoke in opposition to a proposed amendment that would use foreign reference pricing to set the price for drugs in the United States. The Senator pointed out that the policy "does not correct for the dangers of discriminatory metrics known as QALYs, or quality adjusted life years. The problem with QALYs is that they discount the value of life because a patient is older, or ill, or has a disability. I cannot support that. And I am surprised that the senator from Vermont thinks that that is appropriate. The Affordable Care Act, rightfully prohibited the use of QALYs in the Medicare program. That certainly should be done here, too. This is just a perfect example of why something this complicated should go through the committee process. This is an extremely flawed approach.” In light of her comments, Senator Cassidy recommended to table the amendment. The video is available on LinkedIn here and on X here. We encourage others to share PIPC’s social media thanking the Senator on LinkedIn here and on X here.
Additionally, the Committee voted unanimously to advance the Charlotte Woodward Organ Transplant Discrimination Prevention Act (S. 1782), a long-awaited move to ensure people with disabilities are not discriminated against in the distribution of organs for transplant. Hear Charlotte herself describe this terrific progress here. Both moves underscore the committee’s commitment to valuing disabled lives.
6. AMA Opposes Policies Setting Prices by Exclusive Reference to Other Countries or Averages. At the Annual Meeting of the American Medical Association’s (AMA) House of Delegates, the AMA "adopted new policies aimed at improving patient access to evidence-based obesity treatments while advancing broader efforts to address prescription drug affordability and insurance coverage barriers.” The AMA policy explicitly did not support Most Favored Nation style policies, stating, "RESOLVED, that our American Medical Association remain committed to the position that international price indices or averages should not be used in isolation to set or determine prescription drug prices or payments (New HOD Policy)” and "RESOLVED, that our AMA work with state medical societies and specialty societies to educate policymakers on the risks of misaligned reimbursement under international reference pricing models and to promote approaches that reduce drug costs without jeopardizing patient access or practice sustainability (Directive to Take Action).” View the resolution here.
7. 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.
8. 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.
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.
12. The Disability Community Voices Concern About Recent DOJ Memorandum. The Department of Justice issued a memorandum saying that federal courts have misinterpreted the rights of individuals with disabilities to be integrated in their communities. The disability community has rallied, stating that this opinion is deeply flawed and flies in the face of long-established Supreme Court precedent, decades of well-established federal law, and the will of Congress. As background, twenty-seven years ago this month, the Supreme Court held in Olmstead v. L.C. that in enacting Title II of the Americans with Disabilities Act (ADA), Congress prohibited the unnecessary isolation or segregation of individuals with disabilities as a form of discrimination. It declared that unjustified isolation is a form of discrimination that the ADA was meant to eradicate. Since the Olmstead decision, federal courts have uniformly recognized that people with disabilities have the right to be integrated in their communities. Learn more HERE and 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
Meeting: Maine PDAB
July 27, 2026
Click here to view.
Meeting: Minnesota PDAB
July 31, 2026
Click here to view.
Meeting: Colorado PDAB
August 7, 2026
Click here to view.
Meeting: Oregon PDAB
August 19, 2026
Click here to view.
Meeting: Washington State PDAB
Sept. 16, 2026
Click here to view.
PCORI Annual Meeting
October 19-20, 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. QALYs Devalue the Lives of People with Disabilities. In many other countries, governments use the quality-adjusted life year (QALY) metric to assign a numeric value to patients’ lives and decide whether covering tests, treatments, services, and other forms of care is worth the cost. Decisions based on “cost effectiveness” which is typical in countries that ration care can delay or deny care to people with disabilities. Low QALY values and inaccurate measures of quality of life and health improvement can lead policymakers to determine that care is not cost effective or worth covering. These calculations may fail to reflect how people adapt to disability, the value of greater independence, or the benefits of accommodations and supportive services, yet are being considered for use in the U.S. through Most Favored Nation or international reference pricing schemes. View examples of QALY health utilities that assign a lower value to the lives of people with disabilities here.
2. MFN Policies Limit Patients’ Ability to Access Treatments that Work Best for Them. Devina, the mother of a child with cystic fibrosis shares her story of moving from Iowa to Canada only to learn that in Canada she is not able to access the medication her daughter needs. Devina’s daughter suffers from side effects from the medications currently available in Canada. Despite medications that work better for her existing, she cannot access them and is unable to fully manage her Cystic Fibrosis. We must not import access restrictions that devalue people living with rare diseases.
3. Disability Matters with Joyce Bender: PIPC Chairman Tony Coelho and Rep. Steny Hoyer. In a podcast that was broadcast on July 7, 2026, Tony Coelho and Rep. Steny Hoyer joined the conversation to share what brought them to become disability advocates, sharing the background of the process of passing the Americans with Disabilities Act (ADA) and the bipartisanship that was needed to not only pass the legislation but to ensure its implementation. Tony Coelho shared the importance of the role of President George Bush and his strong commitment to signing it. Other Members of Congress mentioned as champions of the ADA's passage included former Senators Orrin Hatch, Bob Dole, Ted Kennedy and Tom Harkin as well as Rep. Jim Sensenbrenner. The two old friends shared personal stories of witnessing discrimination at an early age and how it drove them to be involved in advancing equal rights. Rep. Hoyer acknowledged the iconic phrase from the Declaration of Independence, "We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.” He stated, "But it takes us to make sure that they are realities. That's what America is about, and that's what America continues to need to be about.” Listen to the podcast here.
4. PCORI Annual Meeting October 19-20. Registration is now open for the 2026 PCORI Annual Meeting, taking place Oct. 19-20, in Washington, D.C. Join patients, researchers and other healthcare decision makers from across the country for two days of learning, collaboration and connection at PCORI’s annual event highlighting patient-centered comparative clinical effectiveness research (CER). Topics include: (1) explore the latest findings from PCORI-funded patient-centered CER.; and (2) hear from healthcare leaders and experts through engaging sessions. Network with a national community committed to improving healthcare decision making and health outcomes. Click here to register.
5. Senator Collins Speaks Up Against Importing QALYs to the U.S., Committee Advances Charlotte’s Bill. On June 17, 2026, during a legislative hearing of the Senate Health Education Labor and Pensions (HELP) Committee, Senator Collins spoke in opposition to a proposed amendment that would use foreign reference pricing to set the price for drugs in the United States. The Senator pointed out that the policy "does not correct for the dangers of discriminatory metrics known as QALYs, or quality adjusted life years. The problem with QALYs is that they discount the value of life because a patient is older, or ill, or has a disability. I cannot support that. And I am surprised that the senator from Vermont thinks that that is appropriate. The Affordable Care Act, rightfully prohibited the use of QALYs in the Medicare program. That certainly should be done here, too. This is just a perfect example of why something this complicated should go through the committee process. This is an extremely flawed approach.” In light of her comments, Senator Cassidy recommended to table the amendment. The video is available on LinkedIn here and on X here. We encourage others to share PIPC’s social media thanking the Senator on LinkedIn here and on X here.
Additionally, the Committee voted unanimously to advance the Charlotte Woodward Organ Transplant Discrimination Prevention Act (S. 1782), a long-awaited move to ensure people with disabilities are not discriminated against in the distribution of organs for transplant. Hear Charlotte herself describe this terrific progress here. Both moves underscore the committee’s commitment to valuing disabled lives.
6. AMA Opposes Policies Setting Prices by Exclusive Reference to Other Countries or Averages. At the Annual Meeting of the American Medical Association’s (AMA) House of Delegates, the AMA "adopted new policies aimed at improving patient access to evidence-based obesity treatments while advancing broader efforts to address prescription drug affordability and insurance coverage barriers.” The AMA policy explicitly did not support Most Favored Nation style policies, stating, "RESOLVED, that our American Medical Association remain committed to the position that international price indices or averages should not be used in isolation to set or determine prescription drug prices or payments (New HOD Policy)” and "RESOLVED, that our AMA work with state medical societies and specialty societies to educate policymakers on the risks of misaligned reimbursement under international reference pricing models and to promote approaches that reduce drug costs without jeopardizing patient access or practice sustainability (Directive to Take Action).” View the resolution here.
7. 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.
8. 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.
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.
12. The Disability Community Voices Concern About Recent DOJ Memorandum. The Department of Justice issued a memorandum saying that federal courts have misinterpreted the rights of individuals with disabilities to be integrated in their communities. The disability community has rallied, stating that this opinion is deeply flawed and flies in the face of long-established Supreme Court precedent, decades of well-established federal law, and the will of Congress. As background, twenty-seven years ago this month, the Supreme Court held in Olmstead v. L.C. that in enacting Title II of the Americans with Disabilities Act (ADA), Congress prohibited the unnecessary isolation or segregation of individuals with disabilities as a form of discrimination. It declared that unjustified isolation is a form of discrimination that the ADA was meant to eradicate. Since the Olmstead decision, federal courts have uniformly recognized that people with disabilities have the right to be integrated in their communities. Learn more HERE and 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. Australian MS patients nearly faced annual medicine costs of $33,000 after government pricing rules triggered demands for cuts of up to 50%. The U.S. should not import foreign pricing models that put continued access to essential medicines at risk.
- Australia. Australia temporarily preserved access to three MS treatments after manufacturers warned steep government-mandated price cuts could force them off the subsidy system. Foreign reference pricing can turn promised savings into uncertainty for patients
- Australia. Australians are paying more for medicines while restrictive pharmacy rules limit access to lower-cost options, according to a new report.
- Canada. Canada reversed its initial rejection of public coverage for lecanemab, but patients will still face strict eligibility and monitoring requirements. Foreign pricing systems often make regulatory approval only the beginning of another access battle.
- Canada. Canada is trying to accelerate drug approvals as rare-disease patients wait years longer than Americans for treatments, and many medicines never reach Canada at all. The U.S. should not tie its prices to systems struggling with delayed launches and limited availability.
- Canada. A Canadian woman with incurable breast cancer is considering draining her savings and retirement fund to pay $12,000 a month for a treatment her insurance will not cover. Government-centered systems do not guarantee access—and the U.S. should not import their restrictions.
- New Zealand. Foreign pricing models can shift costs from government budgets directly onto patients and families. A New Zealand man with stage 4 melanoma is relying on fundraising because some medicines recommended by his doctors are not publicly funded.
- United Kingdom. Foreign pricing models can lower government spending by leaving patients to bear the cost themselves. After discovering treatments available abroad were not routinely offered through the NHS, a UK brain cancer patient sold her house to fund care.
- United Kingdom. A British woman spent years suffering before paying £925 privately for a treatment unavailable through the NHS. Government-controlled systems can leave patients paying out of pocket when coverage rules fail to keep pace with medical need.
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: Research Protocol available. Public meeting: January 2027.
- Hypertension: Model Analysis Plan available. Public meeting: October 2026.
- Parkinson's Disease: Draft Evidence Report available. Public comments due August 21, 2026. Public meeting: October 2026.
- COVID-19: Evidence Report and Evidence Presentation 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
Meeting: Maine PDAB
July 27, 2026
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Meeting: Minnesota PDAB
July 31, 2026
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Meeting: Colorado PDAB
August 7, 2026
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Meeting: Oregon PDAB
August 19, 2026
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Meeting: Washington State PDAB
Sept. 16, 2026
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PCORI Annual Meeting
October 19-20, 2026
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