In this week's edition...
— Former Members of Congress and Physicians Call Out How MFN Devalues Disabled Lives. View the article here.
— MFN Policies Devalue Patients, Limiting Treatments for People like Gerry. We must not import access restrictions that devalue people living with chronic illnesses.
— Access at Risk: Innovation for Health Equity in a Time of Uncertainty. Register here.
— Trump Administration Pushes Compliance Deadlines for DOJ's Title II Rule on Digital Accessibility. PIPC will continue to monitor the rule and advocate to ensure that the disabled community does not witness a deterioration in accessibility standards.
— 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.
— Roll Call Publishes Article on the Current State of AHRQ. Click here to read the full piece.
— NIH Strategic Plan for Disability Health Research FY26-FY30. View the report here.
— HEMA Finalizes Report on Economic Evaluation. View PIPC’s critique of the draft report here. View the final report here.
— HIV+HEP Submits letter Opposing GUARD Model. View the press release and letter here.
— Devaluing Disabled Lives, International Laws Fall Short of Protecting Equal Access to Health Care for People with Disabilities as Compared to the U.S. View the new Data Mine Blog here.
— Health Affairs Discusses MFN Drug Pricing and QALYs. Click here to read the full article.
— Oregon PDAB Holds Forums in April/May for Patient and Disability Input. View more information here about PDAB forums. View the EACH/PIC Coalition recent report allowing respondents to explain how insurance design, cumulative health costs, and life circumstances affect their ability to access care. Get involved in telling your story 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.
— Former Members of Congress and Physicians Call Out How MFN Devalues Disabled Lives. View the article here.
— MFN Policies Devalue Patients, Limiting Treatments for People like Gerry. We must not import access restrictions that devalue people living with chronic illnesses.
— Access at Risk: Innovation for Health Equity in a Time of Uncertainty. Register here.
— Trump Administration Pushes Compliance Deadlines for DOJ's Title II Rule on Digital Accessibility. PIPC will continue to monitor the rule and advocate to ensure that the disabled community does not witness a deterioration in accessibility standards.
— 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.
— Roll Call Publishes Article on the Current State of AHRQ. Click here to read the full piece.
— NIH Strategic Plan for Disability Health Research FY26-FY30. View the report here.
— HEMA Finalizes Report on Economic Evaluation. View PIPC’s critique of the draft report here. View the final report here.
— HIV+HEP Submits letter Opposing GUARD Model. View the press release and letter here.
— Devaluing Disabled Lives, International Laws Fall Short of Protecting Equal Access to Health Care for People with Disabilities as Compared to the U.S. View the new Data Mine Blog here.
— Health Affairs Discusses MFN Drug Pricing and QALYs. Click here to read the full article.
— Oregon PDAB Holds Forums in April/May for Patient and Disability Input. View more information here about PDAB forums. View the EACH/PIC Coalition recent report allowing respondents to explain how insurance design, cumulative health costs, and life circumstances affect their ability to access care. Get involved in telling your story 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. 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.
2. 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.
3. Access at Risk: Innovation for Health Equity in a Time of Uncertainty. Patient Advocate Foundation (PAF) invites you to the next virtual Innovation Summit series, Access at Risk: Innovation for Health Equity in a Time of Uncertainty, on Thursday, May 14, 2026, at 12 pm ET. The invitation states, "Join us as we explore ways to protect and expand access to care for everyone amid rapid changes and uncertainty. From shifts in coverage to reduced subsidies and ongoing challenges to equity, we’ll examine what these developments mean for patients, caregivers, and communities and what we can do together to respond." The keynote speaker, Daniel E. Dawes, JD is a widely respected healthcare and public health leader, health policy expert, educator, and researcher who serves as Senior Vice President of Global Health and Founding Dean of the School of Global Health at Meharry Medical College. This event will include interactive opportunities throughout the program, giving you the chance to share how hope is showing up in your community. You’ll also hear from people at the intersection of health, policy, and education, who are tackling barriers and creating solutions within their communities. They’ll share their journeys, lessons learned, and advice for anyone committed to making tangible, meaningful change. Please note that PAF will have an ASL interpreter and live captions available for the entire event. Register here.
4. Trump Administration Pushes Compliance Deadlines for DOJ's Title II Rule on Digital Accessibility. The Administration recently released new information pertaining to the DOJ Title II rule on digital accessibility, which includes a delay in compliance timelines to 2027 for large entities and 2028 for small entities. This update will result in a further delay in ensuring access to crucial state and local services, including voting, transportation, and education.
PIPC will continue to monitor the rule and advocate to ensure that the disabled community does not witness a deterioration in accessibility standards.
5. 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.
6. Roll Call Publishes Piece on the Current State of AHRQ. On April 7, Roll Call's Jessie Hellmann published an article discussing the Agency for Healthcare Research and Quality (AHRQ), examining its spending trends and staff layoffs. In the piece, she writes the following: "A small federal agency responsible for studying how health care works for patients is largely dormant despite receiving millions of dollars from Congress for research into antibiotic resistance, health care access and safety or quality of care. The Agency for Healthcare Research and Quality has spent none of the $345 million appropriated by Congress for the current fiscal year, and $80 million of its fiscal 2025 funding was sent back to the Treasury. AHRQ hasn’t funded any new research projects in almost a year, and it hasn’t issued grant funding for existing projects since before the end of the previous fiscal year in September, according to multiple people familiar with the matter. That has left the agency, created in 1999 to fund research into how health care delivery can be safer and better for patients, in limbo as the Trump administration signals its desire to reduce its funding or transfer its functions elsewhere."
Click here to read the full piece.
7. NIH Strategic Plan for Disability Health Research FY26-FY30. On March 26, 2026, the NIH published a strategic plan for disability health research that provides a comprehensive roadmap to advance innovative, responsible research that promotes the health and well-being of Americans with disabilities. The plan outlines strategic goals and objectives in four areas: Research, Workforce, Resources and Infrastructure, and Stewardship. In addition, four crosscutting themes identify important overarching considerations that intersect with multiple goals and objectives of the plan: Whole Person Health, Inclusion, Interdisciplinary Collaboration and Technology. The report states, "As people with disabilities are multifaceted and have a wide range of experiences, NIH will encourage researchers to incorporate this complexity and heterogeneity into their research designs, methods, and measures to conduct meaningful and effective research.” View the report here.
8. HEMA Finalizes Report on Economic Evaluation. The Institute for Clinical and Economic Review (ICER), Canada’s Drug Agency (CDA-AMC), and the National Institute for Health and Care Excellence (NICE - England) convened the Health Economics Methods Advisory (HEMA) group to make recommendations on new methods and processes for economic evaluation. This first HEMA report focuses on the benefits considered in economic evaluation. Last December, PIPC published a Data Mine blog related to the draft report and the concerns on which we were aligned with USC Schaeffer’s comments to that draft. PIPC stated, "HEMA proposes a set of principles that, despite sounding neutral, effectively defend the QALY-based status quo. Their framework places population averages at the center of valuation and treats individual differences as secondary. They caution that any new value element must also account for what other patients lose when resources shift, assuming that tradeoffs among patients are an unavoidable part of the system.” After reading the final report, it appears that HEMA did not make substantive changes to their original draft as they continue to defend QALYs and similar measures and the use of community preferences rather than those of patients themselves. View PIPC’s critique of the draft report here. View the final report here.
9. HIV+HEP Submits letter Opposing GUARD Model. HIV+Hep also commented on the proposed GUARD Model importing QALY-based pricing from other countries. The press release stated, "As detailed in this comment, the GUARD Model relies on foreign list prices that cannot be directly compared to how prescription drugs are priced, paid for, or accessed in the United States. U.S. list prices incorporate substantial downstream obligations that materially reduce net prices and support patient access, including hundreds of billions in annual domestic statutory and market-based obligations, such as Medicaid and commercial rebates, 340B discounts, and patient assistance programs. By failing to account for these dynamics, the model risks undermining existing affordability mechanisms and destabilizing patient assistance and safety net programs that many patients depend on. At the same time, the proposal acknowledges potential effects on research and development and treatment advancement, yet does not require CMS to evaluate those impacts, even as patients continue to depend on advances toward better therapies and potential cures. Lastly, its monitoring framework is retrospective by design, offering no meaningful protection for patients who cannot afford even a temporary disruption in care.” View the press release and letter here.
10. Devaluing Disabled Lives, International Laws Fall Short of Protecting Equal Access to Health Care for People with Disabilities as Compared to the U.S. A new PIPC Data Mine Blog highlights how international laws protecting people with disabilities differ from the U.S., underscoring a very different ethic in how other countries provide equal access to health care. "The U.S. has been the model for other nations in enacting laws and policies supporting the inclusion of people with disabilities in communities and society, rooted in an ethic that disabled lives are valuable. American laws protecting people with disabilities from discrimination, often rooted in bias and stigma, extend to our health system...Other countries have followed the U.S. lead, modeling our rules on accessibility of public spaces and accommodations to enable people with disabilities to work and to live in communities. However, they fall short in providing protections for people with disabilities specific to access to health care…” View the new Data Mine Blog here.
11. Health Affairs Discusses MFN Drug Pricing and QALYs. On February 18, Health Affairs published an article to discuss concerns regarding the Trump administration's 'most-favored nation' (MFN) policy's reliance on quality-adjusted life years (QALY), explaining that it will lead to denials of care to individuals with disabilities and chronic diseases. In the article, authors explain following: "Reflecting longstanding concerns about potentially discriminatory methodologies, Congress has resisted reliance on quality-adjusted life-years (QALYs) as a determining factor for health care decisions. The concern is that use of QALYs and similar metrics may deny care to people living with disabilities and chronic diseases. Recent proposals by both Democrats and Republicans to reduce drug prices in the US by anchoring them to prices set in other developed countries resurfaces this debate. By referencing drug prices set by foreign governments, these proposals rely on evidence standards and values of these nations, which often rely on QALYs and other cost-effectiveness methods."
Click here to read the full article.
12. Oregon PDAB Holds Forums in April/May for Patient and Disability Input. Oregonians have an opportunity to share their personal stories so the PDAB learns from patients about real-world experiences affording drugs and all the associated costs of our care. There have been lingering questions from across stakeholders about the PDAB and its usefulness to address affordability challenges given its narrow mandate. Disbanding the PDAB was raised at the September, 2025 board meeting, as well as changing its mission to goals that are better suited to achieve affordability. Advocates question whether the PDAB is asking the right questions as they view this process as giving patients a chance to learn from the PDAB as opposed to the PDAB learning from patients.
Comments have raised similar concerns. The Let My Doctor Decide Action Network stated, "I still remain deeply concerned, however, that the current process's narrow focus on drug list prices, rather than the total cost to patients, risks limiting access to essential medications while creating longer-term negative health outcomes rather than achieving the goal of improved access to affordable drugs. Even Regence Blue Cross Blue Shield of Oregon stated, “Of all the policy proposals put forward this year, 85% fall outside the board’s statutory authority. Many of these proposals impact provider reimbursement rather than consumer affordability, which represents a significant departure from the board's core mission of addressing prescription drug costs."
View more information here about PDAB forums. View the EACH/PIC Coalition recent report allowing respondents to explain how insurance design, cumulative health costs, and life circumstances affect their ability to access care. Get involved in telling your story here.
13. 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
Meeting: Maine PDAB
April 27, 2026
Click here to view.
Webinar: Access at Risk: Innovation for Health Equity in a Time of Uncertainty
May 14, 2026
Click here to view.
Meeting: Colorado PDAB
May 15, 2026
Click here to view.
Meeting: Maryland 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.
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. 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.
2. 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.
3. Access at Risk: Innovation for Health Equity in a Time of Uncertainty. Patient Advocate Foundation (PAF) invites you to the next virtual Innovation Summit series, Access at Risk: Innovation for Health Equity in a Time of Uncertainty, on Thursday, May 14, 2026, at 12 pm ET. The invitation states, "Join us as we explore ways to protect and expand access to care for everyone amid rapid changes and uncertainty. From shifts in coverage to reduced subsidies and ongoing challenges to equity, we’ll examine what these developments mean for patients, caregivers, and communities and what we can do together to respond." The keynote speaker, Daniel E. Dawes, JD is a widely respected healthcare and public health leader, health policy expert, educator, and researcher who serves as Senior Vice President of Global Health and Founding Dean of the School of Global Health at Meharry Medical College. This event will include interactive opportunities throughout the program, giving you the chance to share how hope is showing up in your community. You’ll also hear from people at the intersection of health, policy, and education, who are tackling barriers and creating solutions within their communities. They’ll share their journeys, lessons learned, and advice for anyone committed to making tangible, meaningful change. Please note that PAF will have an ASL interpreter and live captions available for the entire event. Register here.
4. Trump Administration Pushes Compliance Deadlines for DOJ's Title II Rule on Digital Accessibility. The Administration recently released new information pertaining to the DOJ Title II rule on digital accessibility, which includes a delay in compliance timelines to 2027 for large entities and 2028 for small entities. This update will result in a further delay in ensuring access to crucial state and local services, including voting, transportation, and education.
PIPC will continue to monitor the rule and advocate to ensure that the disabled community does not witness a deterioration in accessibility standards.
5. 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.
6. Roll Call Publishes Piece on the Current State of AHRQ. On April 7, Roll Call's Jessie Hellmann published an article discussing the Agency for Healthcare Research and Quality (AHRQ), examining its spending trends and staff layoffs. In the piece, she writes the following: "A small federal agency responsible for studying how health care works for patients is largely dormant despite receiving millions of dollars from Congress for research into antibiotic resistance, health care access and safety or quality of care. The Agency for Healthcare Research and Quality has spent none of the $345 million appropriated by Congress for the current fiscal year, and $80 million of its fiscal 2025 funding was sent back to the Treasury. AHRQ hasn’t funded any new research projects in almost a year, and it hasn’t issued grant funding for existing projects since before the end of the previous fiscal year in September, according to multiple people familiar with the matter. That has left the agency, created in 1999 to fund research into how health care delivery can be safer and better for patients, in limbo as the Trump administration signals its desire to reduce its funding or transfer its functions elsewhere."
Click here to read the full piece.
7. NIH Strategic Plan for Disability Health Research FY26-FY30. On March 26, 2026, the NIH published a strategic plan for disability health research that provides a comprehensive roadmap to advance innovative, responsible research that promotes the health and well-being of Americans with disabilities. The plan outlines strategic goals and objectives in four areas: Research, Workforce, Resources and Infrastructure, and Stewardship. In addition, four crosscutting themes identify important overarching considerations that intersect with multiple goals and objectives of the plan: Whole Person Health, Inclusion, Interdisciplinary Collaboration and Technology. The report states, "As people with disabilities are multifaceted and have a wide range of experiences, NIH will encourage researchers to incorporate this complexity and heterogeneity into their research designs, methods, and measures to conduct meaningful and effective research.” View the report here.
8. HEMA Finalizes Report on Economic Evaluation. The Institute for Clinical and Economic Review (ICER), Canada’s Drug Agency (CDA-AMC), and the National Institute for Health and Care Excellence (NICE - England) convened the Health Economics Methods Advisory (HEMA) group to make recommendations on new methods and processes for economic evaluation. This first HEMA report focuses on the benefits considered in economic evaluation. Last December, PIPC published a Data Mine blog related to the draft report and the concerns on which we were aligned with USC Schaeffer’s comments to that draft. PIPC stated, "HEMA proposes a set of principles that, despite sounding neutral, effectively defend the QALY-based status quo. Their framework places population averages at the center of valuation and treats individual differences as secondary. They caution that any new value element must also account for what other patients lose when resources shift, assuming that tradeoffs among patients are an unavoidable part of the system.” After reading the final report, it appears that HEMA did not make substantive changes to their original draft as they continue to defend QALYs and similar measures and the use of community preferences rather than those of patients themselves. View PIPC’s critique of the draft report here. View the final report here.
9. HIV+HEP Submits letter Opposing GUARD Model. HIV+Hep also commented on the proposed GUARD Model importing QALY-based pricing from other countries. The press release stated, "As detailed in this comment, the GUARD Model relies on foreign list prices that cannot be directly compared to how prescription drugs are priced, paid for, or accessed in the United States. U.S. list prices incorporate substantial downstream obligations that materially reduce net prices and support patient access, including hundreds of billions in annual domestic statutory and market-based obligations, such as Medicaid and commercial rebates, 340B discounts, and patient assistance programs. By failing to account for these dynamics, the model risks undermining existing affordability mechanisms and destabilizing patient assistance and safety net programs that many patients depend on. At the same time, the proposal acknowledges potential effects on research and development and treatment advancement, yet does not require CMS to evaluate those impacts, even as patients continue to depend on advances toward better therapies and potential cures. Lastly, its monitoring framework is retrospective by design, offering no meaningful protection for patients who cannot afford even a temporary disruption in care.” View the press release and letter here.
10. Devaluing Disabled Lives, International Laws Fall Short of Protecting Equal Access to Health Care for People with Disabilities as Compared to the U.S. A new PIPC Data Mine Blog highlights how international laws protecting people with disabilities differ from the U.S., underscoring a very different ethic in how other countries provide equal access to health care. "The U.S. has been the model for other nations in enacting laws and policies supporting the inclusion of people with disabilities in communities and society, rooted in an ethic that disabled lives are valuable. American laws protecting people with disabilities from discrimination, often rooted in bias and stigma, extend to our health system...Other countries have followed the U.S. lead, modeling our rules on accessibility of public spaces and accommodations to enable people with disabilities to work and to live in communities. However, they fall short in providing protections for people with disabilities specific to access to health care…” View the new Data Mine Blog here.
11. Health Affairs Discusses MFN Drug Pricing and QALYs. On February 18, Health Affairs published an article to discuss concerns regarding the Trump administration's 'most-favored nation' (MFN) policy's reliance on quality-adjusted life years (QALY), explaining that it will lead to denials of care to individuals with disabilities and chronic diseases. In the article, authors explain following: "Reflecting longstanding concerns about potentially discriminatory methodologies, Congress has resisted reliance on quality-adjusted life-years (QALYs) as a determining factor for health care decisions. The concern is that use of QALYs and similar metrics may deny care to people living with disabilities and chronic diseases. Recent proposals by both Democrats and Republicans to reduce drug prices in the US by anchoring them to prices set in other developed countries resurfaces this debate. By referencing drug prices set by foreign governments, these proposals rely on evidence standards and values of these nations, which often rely on QALYs and other cost-effectiveness methods."
Click here to read the full article.
12. Oregon PDAB Holds Forums in April/May for Patient and Disability Input. Oregonians have an opportunity to share their personal stories so the PDAB learns from patients about real-world experiences affording drugs and all the associated costs of our care. There have been lingering questions from across stakeholders about the PDAB and its usefulness to address affordability challenges given its narrow mandate. Disbanding the PDAB was raised at the September, 2025 board meeting, as well as changing its mission to goals that are better suited to achieve affordability. Advocates question whether the PDAB is asking the right questions as they view this process as giving patients a chance to learn from the PDAB as opposed to the PDAB learning from patients.
Comments have raised similar concerns. The Let My Doctor Decide Action Network stated, "I still remain deeply concerned, however, that the current process's narrow focus on drug list prices, rather than the total cost to patients, risks limiting access to essential medications while creating longer-term negative health outcomes rather than achieving the goal of improved access to affordable drugs. Even Regence Blue Cross Blue Shield of Oregon stated, “Of all the policy proposals put forward this year, 85% fall outside the board’s statutory authority. Many of these proposals impact provider reimbursement rather than consumer affordability, which represents a significant departure from the board's core mission of addressing prescription drug costs."
View more information here about PDAB forums. View the EACH/PIC Coalition recent report allowing respondents to explain how insurance design, cumulative health costs, and life circumstances affect their ability to access care. Get involved in telling your story here.
13. 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: Revised Scoping Document available. Public meeting: October 2026.
- Parkinson's Disease: Research Protocol available. Public meeting: October 2026.
- COVID-19: Draft Evidence Report available. Public comments are due by May 4, 2026. Public meeting: June 2026.
- Narcolepsy: Draft Evidence Report available. Public meeting: May 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
April 27, 2026
Click here to view.
Webinar: Access at Risk: Innovation for Health Equity in a Time of Uncertainty
May 14, 2026
Click here to view.
Meeting: Colorado PDAB
May 15, 2026
Click here to view.
Meeting: Maryland PDAB
May 18, 2026
Click here to view.
Meeting: Washington State PDAB
May 20, 2026
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Meeting: Oregon PDAB
May 20, 2026
Click here to view.
