In this week's edition...
— 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.
— Rare Disease Toolkit for Value Our Health. The rare disease toolkit is available here. View the newest element of the toolkit, a chart outlining QALY utility values for certain rare diseases 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.
— Partnership for Part D Access: Action Alert. View the Action Alert HERE.
— California Patients and People with Disabilities: Attend the Patient and Consumer Forum on Health Care Affordability! The meeting will be held on March 10 at 1pm. View details here.
— Florida Bill Would Import QALYs, Devalue People with Disabilities. Learn more about the experiences of patients and people with disabilities in other countries here. View the letter from PIPC here. View a constituent letter from The Speak Foundation here.
— Roll Call: Bipartisan call for Congress to ban metric that devalues people with disabilities. View the Roll Call opinion here. View the Open Letter here from over 100 groups. View PIPC's one pager 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.
— 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.
— Rare Disease Toolkit for Value Our Health. The rare disease toolkit is available here. View the newest element of the toolkit, a chart outlining QALY utility values for certain rare diseases 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.
— Partnership for Part D Access: Action Alert. View the Action Alert HERE.
— California Patients and People with Disabilities: Attend the Patient and Consumer Forum on Health Care Affordability! The meeting will be held on March 10 at 1pm. View details here.
— Florida Bill Would Import QALYs, Devalue People with Disabilities. Learn more about the experiences of patients and people with disabilities in other countries here. View the letter from PIPC here. View a constituent letter from The Speak Foundation here.
— Roll Call: Bipartisan call for Congress to ban metric that devalues people with disabilities. View the Roll Call opinion here. View the Open Letter here from over 100 groups. View PIPC's one pager 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. 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.
2. Rare Disease Toolkit for Value Our Health. After a tremendous rare disease week, rare disease patients, families and friends hopefully came away feeling empowered to fight for policymakers to value our health. A new Rare Disease Toolkit is now available on the PIPC website to help those advocating for people with rare diseases and conditions, including information related to the quality-adjusted life year (QALY) health utilities that devalue people with rare diseases, international stories from countries where QALYs are used to ration care, and evidence that bipartisanship is possible to protect disabled lives. The rare disease toolkit is available here. View the newest element of the toolkit, a chart outlining QALY utility values for certain rare diseases here.
3. 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.
4. 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.
5. 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.
6. 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.
7. 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.
8. Partnership for Part D Access: Action Alert. The Partnership for Part D Access has launched an action alert to help patients, caregivers, and providers send letters directly to their Members of Congress expressing concerns about CMS’s proposed GUARD (Guarding U.S. Medicare Against Rising Drug Costs) model. This may be of interest to PIPC members and friends representing patients with certain serious health conditions — mental health challenges, cancer, HIV, epilepsy, and those at risk of organ rejection. The Partnership points out that the "GUARD model would apply international pricing benchmarks to certain Medicare Part D therapies, including medications in the six protected classes. CMS has projected that the model is not designed to directly lower patient out-of-pocket costs and could result in an estimated $3.6 billion increase in patient cost-sharing. There is concern that these cost pressures could translate into plan behaviors that disrupt access for patients who depend on consistent treatment.” View the Action Alert HERE.
9. California Patients and People with Disabilities: Attend the Patient and Consumer Forum on Health Care Affordability! In the absence of an official patient or disability voice, California’s Office of Health Care Affordability is holding a meeting to engage patients. The announcement stated, "The Patient and Consumer Forum on Health Care Affordability is a meeting where The Office of Health Care Affordability (OHCA) will engage directly with patients, consumers and advocates on OHCA’s work to promote more affordable health care while maintaining or improving access, equity, and quality.” Although it was not enacted, Assembly Bill 278 (AB 278) was introduced in 2025 to underscore the importance of patient engagement during a period of significant state action on health care costs and system oversight, with the goal of ensuring decisions are centered on patients and people with disabilities. This meeting is a non-legislative step toward meaningful engagement of the patient community. The meeting will be held on March 10 at 1pm. View details here.
10. Florida Bill Would Import QALYs, Devalue People with Disabilities. As Florida’s legislative session gets underway, lawmakers there are considering tying prescription drug prices in the state to those in other countries that rely on quality-adjusted life years (QALYs) to value health services and treatments. HB697 and SB1158 would tie Florida drug prices to that of other countries and would present Florida beneficiaries with the same challenges as patients in those countries who struggle to access the latest innovations to treat their disability or serious chronic disease. PIPC shared concerns that legislation referencing drug prices in other countries would thereby import 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.
Learn more about the experiences of patients and people with disabilities in other countries here. View the letter from PIPC here. View a constituent letter from The Speak Foundation here.
11. Roll Call: Bipartisan call for Congress to ban metric that devalues people with disabilities. Former members of Congress on both sides of the aisle openly called on Congress to extend Medicare’s ban on using QALYs to other programs. PIPC Chairman Tony Coelho and Congresswoman Cathy McMorris Rodgers applauded Representative Kat Cammack for re-introducing the Protecting Health Care for All Patients Act to ensure that Americans with disabilities, chronic illnesses, and rare conditions are not devalued in federal health care decisions. This legislation prohibits the use of Quality-Adjusted Life Years (QALYs)—a metric that assigns lower value to lives with disabilities— and similar measures across federal programs. They stated, "As former members of Congress on different sides of the aisle, we found common ground. We fiercely believe older adults and people with disabilities should not be devalued, especially in our nation’s health care system. The United States should not embrace health care rationing that de-prioritizes the health and wellness of people living with disabilities, or older adults or even infants. Yet that’s where the current political debate takes us.”
View the Roll Call opinion here. View the Open Letter here from over 100 groups. View PIPC's one pager 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: Minnesota PDAB
March 10, 2026
Click here to view.
Webinar: PCORI Success Stories: Real-World Tips from Awardees
March 11, 2026
Click here to view.
Meeting: Washington State PDAB
March 18, 2026
Click here to view.
Meeting: Oregon PDAB
March 18, 2026
Click here to view.
Meeting: Maine PDAB
March 23, 2026
Click here to view.
Meeting: Maryland PDAB
March 23, 2026
Click here to view.
Meeting: Colorado PDAB
April 3, 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. 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.
2. Rare Disease Toolkit for Value Our Health. After a tremendous rare disease week, rare disease patients, families and friends hopefully came away feeling empowered to fight for policymakers to value our health. A new Rare Disease Toolkit is now available on the PIPC website to help those advocating for people with rare diseases and conditions, including information related to the quality-adjusted life year (QALY) health utilities that devalue people with rare diseases, international stories from countries where QALYs are used to ration care, and evidence that bipartisanship is possible to protect disabled lives. The rare disease toolkit is available here. View the newest element of the toolkit, a chart outlining QALY utility values for certain rare diseases here.
3. 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.
4. 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.
5. 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.
6. 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.
7. 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.
8. Partnership for Part D Access: Action Alert. The Partnership for Part D Access has launched an action alert to help patients, caregivers, and providers send letters directly to their Members of Congress expressing concerns about CMS’s proposed GUARD (Guarding U.S. Medicare Against Rising Drug Costs) model. This may be of interest to PIPC members and friends representing patients with certain serious health conditions — mental health challenges, cancer, HIV, epilepsy, and those at risk of organ rejection. The Partnership points out that the "GUARD model would apply international pricing benchmarks to certain Medicare Part D therapies, including medications in the six protected classes. CMS has projected that the model is not designed to directly lower patient out-of-pocket costs and could result in an estimated $3.6 billion increase in patient cost-sharing. There is concern that these cost pressures could translate into plan behaviors that disrupt access for patients who depend on consistent treatment.” View the Action Alert HERE.
9. California Patients and People with Disabilities: Attend the Patient and Consumer Forum on Health Care Affordability! In the absence of an official patient or disability voice, California’s Office of Health Care Affordability is holding a meeting to engage patients. The announcement stated, "The Patient and Consumer Forum on Health Care Affordability is a meeting where The Office of Health Care Affordability (OHCA) will engage directly with patients, consumers and advocates on OHCA’s work to promote more affordable health care while maintaining or improving access, equity, and quality.” Although it was not enacted, Assembly Bill 278 (AB 278) was introduced in 2025 to underscore the importance of patient engagement during a period of significant state action on health care costs and system oversight, with the goal of ensuring decisions are centered on patients and people with disabilities. This meeting is a non-legislative step toward meaningful engagement of the patient community. The meeting will be held on March 10 at 1pm. View details here.
10. Florida Bill Would Import QALYs, Devalue People with Disabilities. As Florida’s legislative session gets underway, lawmakers there are considering tying prescription drug prices in the state to those in other countries that rely on quality-adjusted life years (QALYs) to value health services and treatments. HB697 and SB1158 would tie Florida drug prices to that of other countries and would present Florida beneficiaries with the same challenges as patients in those countries who struggle to access the latest innovations to treat their disability or serious chronic disease. PIPC shared concerns that legislation referencing drug prices in other countries would thereby import 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.
Learn more about the experiences of patients and people with disabilities in other countries here. View the letter from PIPC here. View a constituent letter from The Speak Foundation here.
11. Roll Call: Bipartisan call for Congress to ban metric that devalues people with disabilities. Former members of Congress on both sides of the aisle openly called on Congress to extend Medicare’s ban on using QALYs to other programs. PIPC Chairman Tony Coelho and Congresswoman Cathy McMorris Rodgers applauded Representative Kat Cammack for re-introducing the Protecting Health Care for All Patients Act to ensure that Americans with disabilities, chronic illnesses, and rare conditions are not devalued in federal health care decisions. This legislation prohibits the use of Quality-Adjusted Life Years (QALYs)—a metric that assigns lower value to lives with disabilities— and similar measures across federal programs. They stated, "As former members of Congress on different sides of the aisle, we found common ground. We fiercely believe older adults and people with disabilities should not be devalued, especially in our nation’s health care system. The United States should not embrace health care rationing that de-prioritizes the health and wellness of people living with disabilities, or older adults or even infants. Yet that’s where the current political debate takes us.”
View the Roll Call opinion here. View the Open Letter here from over 100 groups. View PIPC's one pager 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. A patient recovering from brain cancer surgery cannot gain access to a recommended post-op treatment due to arbitrary coverage decisions from PBS.
- Canada. “Fractured” government drug price negotiations leave patients in Canada waiting for access to critical treatments.
- Canada. Government officials in Ontario are finally fast-tracking the rollout of five ‘breakthrough’ cancer drugs to treat six different forms of the illness. While some of the drugs on the list have been approved in Canada for nearly a decade, they were not fully covered under the Ontario Drug Benefit plan.
- New Zealand. A family must petition the government to cover a treatment for Cystic Fibrosis that’s available widely in other countries, but not NZ. Another is considering moving from the country altogether.
- New Zealand. Despite being widely available in other countries, many are still waiting on Pharmac to make a coverage decision on obesity drugs for high risk patients.
- New Zealand. Families of children with ADHD and Autism Spectrum Disorder have been blindsided by Southern Cross Health Insurance pulling the plug on funding their treatment.
- United Kingdom. The parents of a 14‑month‑old girl with an aggressive form of blood cancer have been told they will need to pay an exorbitant amount of money for a drug that has been approved in the US but not in the UK.
- United Kingdom. The family of a 19-year-old with motor neurone disease (MND) are walking from Southampton to Westminster to call for urgent access to a groundbreaking drug that is not covered by the NHS.
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.
- COVID-19: Model Analysis Plan available. Public meeting: June 2026.
- Narcolepsy: Model Analysis Plan available. 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: Minnesota PDAB
March 10, 2026
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Webinar: PCORI Success Stories: Real-World Tips from Awardees
March 11, 2026
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Meeting: Washington State PDAB
March 18, 2026
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Meeting: Oregon PDAB
March 18, 2026
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Meeting: Maine PDAB
March 23, 2026
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Meeting: Maryland PDAB
March 23, 2026
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Meeting: Colorado PDAB
April 3, 2026
Click here to view.
