In this week's edition...
— Louisiana Considers MFN Bill. View the PIPC letter here. View the COGI letter here.
— HEMA Finalizes Report on Economic Evaluation. View PIPC’s critique of the draft report here. View the final report here.
-- PIPC Responds to Continued Consideration of Virginia PDAB Legislation.
Click here to read the letter.
-- HIV+HEP Submits letter Opposing GUARD Model. View the press release and letter here.
-- PQA to Hold Heart Failure Technical Expert Panel. A TEP information document provides details on the panel. See PQA's recent blog for more information.
-- PIPC Responds to SOTU and Most Favored Nation. View the statement here. View the letters from 119 organizations to CMS commenting on the GLOBE and GUARD models here.
— Chairman's Corner: OHE Report Confirms Nearly All Countries Referenced in GLOBE, GUARD Models Reference QALYs. View the blog 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.
— MFN would import access restrictions – hear Paula’s story. Click here to view Paula's story.
— 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.
— Louisiana Considers MFN Bill. View the PIPC letter here. View the COGI letter here.
— HEMA Finalizes Report on Economic Evaluation. View PIPC’s critique of the draft report here. View the final report here.
-- PIPC Responds to Continued Consideration of Virginia PDAB Legislation.
Click here to read the letter.
-- HIV+HEP Submits letter Opposing GUARD Model. View the press release and letter here.
-- PQA to Hold Heart Failure Technical Expert Panel. A TEP information document provides details on the panel. See PQA's recent blog for more information.
-- PIPC Responds to SOTU and Most Favored Nation. View the statement here. View the letters from 119 organizations to CMS commenting on the GLOBE and GUARD models here.
— Chairman's Corner: OHE Report Confirms Nearly All Countries Referenced in GLOBE, GUARD Models Reference QALYs. View the blog 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.
— MFN would import access restrictions – hear Paula’s story. Click here to view Paula's story.
— 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 sara@pipcpatients.org for more information.
1. Louisiana Considers MFN Bill. The Louisiana legislature was contacted by PIPC and others requesting the state avoid policies such as proposed in SB 401 that would devalue disabled lives by referencing measures such as the Quality-Adjusted Life Year (QALY) that have detrimental implications for access to needed care and treatment. As drafted, SB 401 would reference drug prices in other countries, thereby importing their use of QALYs and similar measures to value treatments, an algorithm that devalues the patients and people with disabilities that stand to most benefit from innovation. View the PIPC letter here. View the COGI letter here.
2. 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.
3. PIPC Responds to Continued Consideration of Virginia PDAB Legislation. PIPC submitted a letter to State legislative leaders in Virginia voicing continued concern about SB 271 due to the bill’s discriminatory implications for people with disabilities and patients with chronic conditions. PIPC remains concerned about this legislation, which would carry significant risks for patients and people with disabilities through the use of QALYs and other measures that discriminate. The letter also urges lawmakers to consider the implications of Maximum Fair Price (MFP) reference pricing for formulary placement, delayed or denied care, and increased out-of-pocket costs for patients choosing the care their doctors prescribe and that best meets their health needs.
"We can all agree that affordable access to health care is a significant priority," the letter states. "We do not need more policies putting payers between decisions made by doctors and patients."
Click here to read the letter.
4. 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.
5. PQA to Hold Heart Failure Technical Expert Panel. PQA, the Pharmacy Quality Alliance, is convening a measure development technical expert panel (TEP) to support the development of a new health plan measure concept: Evidence of Guideline-Directed Medical Therapy in Persons with Heart Failure. This measure will assess the percentage of individuals with prescription claims for guideline-directed medical therapies for the treatment of heart failure. The TEP will include up to three additional individuals representing patients, caregivers and patient advocates. Given the focused nature of this TEP, preference will be given to individuals with lived experience with heart failure. The first TEP meeting is April 22. A TEP information document provides details on the panel. See PQA's recent blog for more information.
6. PIPC Responds to SOTU and Most Favored Nation. In response to the State of the Union and Presidential calls for Congress to advance Most Favored Nation policies, PIPC provided the following statement:
"Yesterday, over 100 organizations representing patients, people with disabilities, chronic conditions, rare diseases, older adults and caregivers sent a letter to the administration urging them not to pursue so-called Most Favored Nation policies that would link the prices of drugs in the U.S. to those in other countries. We voiced concern that such policies would “lead to a health system devaluing disability that is in direct conflict with American civil rights and disability policy by importing policies that rely on the premise that people with disabilities and older adults are less valuable and less worth treating than ‘healthy’ people.” By referencing decisions in other countries, Most Favored Nation policies would adopt standards used by other countries to ration treatment by assigning a numeric value to the lives of individual patients. This is the wrong approach for America. We urge policymakers - whether in the administration or Congress — to reject proposals that import cost-effectiveness metrics like the quality-adjusted life year from Europe and elsewhere."
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.”
"We look forward to working with Congress and the administration on policies that promote equal access to affordable health care for all Americans.”
View the statement here. View the letters from 119 organizations to CMS commenting on the GLOBE and GUARD models here.
7. Chairman's Corner: OHE Report Confirms Nearly All Countries Referenced in GLOBE, GUARD Models Reference QALYs. PIPC Chairman Tony Coelho recently published a new Chairman Blog: "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.” View the blog here.
8. 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.
9. MFN would import access restrictions – hear Paula’s story. Patients abroad struggle to access novel medications in a timely manner. In a new video, Paula, an Irish woman living with Primary Biliary Cholangitis (PBC) shares her story living with PBC without access to the newest treatments. Paula is a mother of seven who is struggling to maintain the energy to be present for her children due to her PBC. There are novel treatments available, but Irish patients are unable to access them. Paula’s story is a clear message that most favored nation pricing comes with real access risks for patients.
Click here to contact your Member of Congress.
10. 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.
11. 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.
12. 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: Colorado PDAB
April 3, 2026
Click here to view.
Meeting: Maryland PDAB
April 13, 2026
Click here to view.
Meeting: Minnesota PDAB
April 14, 2026
Click here to view.
Meeting: Oregon PDAB
April 15, 2026
Click here to view.
Meeting: Maine PDAB
April 27, 2026
Click here to view,
Meeting: Washington State 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 sara@pipcpatients.org for more information.
1. Louisiana Considers MFN Bill. The Louisiana legislature was contacted by PIPC and others requesting the state avoid policies such as proposed in SB 401 that would devalue disabled lives by referencing measures such as the Quality-Adjusted Life Year (QALY) that have detrimental implications for access to needed care and treatment. As drafted, SB 401 would reference drug prices in other countries, thereby importing their use of QALYs and similar measures to value treatments, an algorithm that devalues the patients and people with disabilities that stand to most benefit from innovation. View the PIPC letter here. View the COGI letter here.
2. 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.
3. PIPC Responds to Continued Consideration of Virginia PDAB Legislation. PIPC submitted a letter to State legislative leaders in Virginia voicing continued concern about SB 271 due to the bill’s discriminatory implications for people with disabilities and patients with chronic conditions. PIPC remains concerned about this legislation, which would carry significant risks for patients and people with disabilities through the use of QALYs and other measures that discriminate. The letter also urges lawmakers to consider the implications of Maximum Fair Price (MFP) reference pricing for formulary placement, delayed or denied care, and increased out-of-pocket costs for patients choosing the care their doctors prescribe and that best meets their health needs.
"We can all agree that affordable access to health care is a significant priority," the letter states. "We do not need more policies putting payers between decisions made by doctors and patients."
Click here to read the letter.
4. 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.
5. PQA to Hold Heart Failure Technical Expert Panel. PQA, the Pharmacy Quality Alliance, is convening a measure development technical expert panel (TEP) to support the development of a new health plan measure concept: Evidence of Guideline-Directed Medical Therapy in Persons with Heart Failure. This measure will assess the percentage of individuals with prescription claims for guideline-directed medical therapies for the treatment of heart failure. The TEP will include up to three additional individuals representing patients, caregivers and patient advocates. Given the focused nature of this TEP, preference will be given to individuals with lived experience with heart failure. The first TEP meeting is April 22. A TEP information document provides details on the panel. See PQA's recent blog for more information.
6. PIPC Responds to SOTU and Most Favored Nation. In response to the State of the Union and Presidential calls for Congress to advance Most Favored Nation policies, PIPC provided the following statement:
"Yesterday, over 100 organizations representing patients, people with disabilities, chronic conditions, rare diseases, older adults and caregivers sent a letter to the administration urging them not to pursue so-called Most Favored Nation policies that would link the prices of drugs in the U.S. to those in other countries. We voiced concern that such policies would “lead to a health system devaluing disability that is in direct conflict with American civil rights and disability policy by importing policies that rely on the premise that people with disabilities and older adults are less valuable and less worth treating than ‘healthy’ people.” By referencing decisions in other countries, Most Favored Nation policies would adopt standards used by other countries to ration treatment by assigning a numeric value to the lives of individual patients. This is the wrong approach for America. We urge policymakers - whether in the administration or Congress — to reject proposals that import cost-effectiveness metrics like the quality-adjusted life year from Europe and elsewhere."
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.”
"We look forward to working with Congress and the administration on policies that promote equal access to affordable health care for all Americans.”
View the statement here. View the letters from 119 organizations to CMS commenting on the GLOBE and GUARD models here.
7. Chairman's Corner: OHE Report Confirms Nearly All Countries Referenced in GLOBE, GUARD Models Reference QALYs. PIPC Chairman Tony Coelho recently published a new Chairman Blog: "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.” View the blog here.
8. 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.
9. MFN would import access restrictions – hear Paula’s story. Patients abroad struggle to access novel medications in a timely manner. In a new video, Paula, an Irish woman living with Primary Biliary Cholangitis (PBC) shares her story living with PBC without access to the newest treatments. Paula is a mother of seven who is struggling to maintain the energy to be present for her children due to her PBC. There are novel treatments available, but Irish patients are unable to access them. Paula’s story is a clear message that most favored nation pricing comes with real access risks for patients.
Click here to contact your Member of Congress.
10. 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.
11. 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.
12. 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.
- Parkinson's Disease: Draft Scoping Document available. Public meeting: October 2026.
- COVID-19: Model Analysis Plan available. Public meeting: June 2026.
- Narcolepsy: Draft Evidence Report available. Public comments are due by April 7, 2026. Public meeting: May 2026.
- IgA Nephropathy: Evidence Report and Evidence Presentation available. Public meeting: February 2026.
- 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: Colorado PDAB
April 3, 2026
Click here to view.
Meeting: Maryland PDAB
April 13, 2026
Click here to view.
Meeting: Minnesota PDAB
April 14, 2026
Click here to view.
Meeting: Oregon PDAB
April 15, 2026
Click here to view.
Meeting: Maine PDAB
April 27, 2026
Click here to view,
Meeting: Washington State PDAB
May 20, 2026
Click here to view.
