In this week's edition...
— MFN would import access restrictions – hear Paula’s story. Click here to view Paula's story.
— 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.
— 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.
— PIPC Submits Letters Expressing Concern with Virginia PDAB Bill. View our letter here.
— States Renew Attack on Section 504 of the Rehabilitation Act and the Integration Mandate. Click here to read more.
— EACH/PIC Coalition Version 2.0 of Patient Experience Survey: Prescription Drug Affordability and Unaffordability. Learn more here.
— Survey Shows Virginia Voters Trust Doctors and are Skeptical of PDABs. Click here to view.
— PIPC Data Mine Blog: Why Patients Shouldn’t Bear Individual Harms for Better Population Averages. View the new PIPC Data Mine Blog here.
— Opportunity: Sign an Open Letter Rejecting Use of QALYs and Similar Measures. See details below.
— Update on the Texas v. Kennedy Lawsuit. 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.
— MFN would import access restrictions – hear Paula’s story. Click here to view Paula's story.
— 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.
— 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.
— PIPC Submits Letters Expressing Concern with Virginia PDAB Bill. View our letter here.
— States Renew Attack on Section 504 of the Rehabilitation Act and the Integration Mandate. Click here to read more.
— EACH/PIC Coalition Version 2.0 of Patient Experience Survey: Prescription Drug Affordability and Unaffordability. Learn more here.
— Survey Shows Virginia Voters Trust Doctors and are Skeptical of PDABs. Click here to view.
— PIPC Data Mine Blog: Why Patients Shouldn’t Bear Individual Harms for Better Population Averages. View the new PIPC Data Mine Blog here.
— Opportunity: Sign an Open Letter Rejecting Use of QALYs and Similar Measures. See details below.
— Update on the Texas v. Kennedy Lawsuit. 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 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. 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.
2. 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.
3. 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.
4. PIPC Submits Letters Expressing Concern with Virginia PDAB Bill. PIPC shared the concerns of patients and people with disabilities related to efforts in Virginia to establish a Prescription Drug Affordability Board (PDAB) by submitting comments to the Virginia Subcommittee on Health and Human Resources and a letter to the Virginia State Senate. We oppose HB 483 and SB 271 which would allow for reference to value assessments of new health innovations using quality-adjusted life years (QALYs) and similar measures. Over 100 organizations representing patients and people with disabilities agree.
View our letter here.
5. States Renew Attack on Section 504 of the Rehabilitation Act and the Integration Mandate. On January 23, Texas and eight other states – Alaska, Florida, Indiana, Kansas, Louisiana, Missouri, Montana, and South Dakota – renewed their attack on Section 504 of the Rehabilitation Act and the integration mandate. In the new complaint, the states are now asking the court to: (1) declare that the entire Section 504 rule is unlawful; (2) stop the Department of Health and Human Services (HHS) from enforcing the entire rule; and (3) stop HHS from telling states they cannot take actions that place people with disabilities at “serious risk” of institutionalization. If the states' challenge is successful, the disability community will experience greater difficulty participating in their communities.
To protect the disabled community, we encourage contacting your governor and attorney general to withdraw the lawsuit. More information about contacting your representatives can be found here.
Click here to read more.
6. EACH/PIC Coalition Version 2.0 of Patient Experience Survey: Prescription Drug Affordability and Unaffordability. PIPC is pleased to share the updated version of a patient-led analysis of how people actually experience affordability in their daily lives. Patients define affordability as “the ability to consistently obtain medications within their essential monthly household budget, considering income, total healthcare costs, and life circumstances.” 100% of patients who said they stopped taking a drug due to affordability cited insurance-related reasons: denials, prior authorizations, step therapy, or exclusion of copay assistance on Medicare. 75% of patients who skipped or stretched doses also reported at least one instance of care disruption due to insurance delays. Improving insurance processes was among the final recommendations to address affordability challenges. Learn more here.
7. Survey Shows Virginia Voters Trust Doctors and are Skeptical of PDABs. A statewide survey of Virginia voters conducted by Quantum Survey Group finds that voters strongly trust doctors — not insurers, government boards, or health economists and policy analysts — to act in their best interest when it comes to their health care. Voters also identify insurance companies as the party playing the biggest role in determining how much they pay out of pocket for health care and grow increasingly skeptical of Prescription Drug Affordability Boards (PDABs) once real-world impacts are introduced. While affordability is a concern for many, support for upper payment limits on prescription medicines is shallow and erodes quickly when voters learn how such policies could affect access, premiums, and local decision-making.
Click here to view. View statement from Rare Access Advocacy Project related to PDAB legislation here.
8. PIPC Data Mine Blog: Why Patients Shouldn’t Bear Individual Harms for Better Population Averages. The recent draft Health Technology Assessment (HTA) methods report released by the Health Economics Methods Advisory (HEMA) group makes it crystal clear – policy grounded in convention HTA methods (like the QALY) are willing to harm the individual for the sake of the formula-derived average. The report was produced by a collaboration led by the Institute for Clinical and Economic Review (ICER) and health agencies in the UK and Canada. It underscores PIPC’s position on why policymakers must reject government policy based on national HTA, whether through direct use of ICER-style cost-effectiveness thresholds or indirect reliance on HTA-based decisions made in other countries.
View the new PIPC Data Mine Blog here.
9. 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.
10. Update on the Texas v. Kennedy Lawsuit. Texas v. Kennedy is a lawsuit brought by 17 states in federal court in the Northern District of Texas. The lawsuit challenges 2024 regulations from the U.S. Department of Health and Human Services (HHS), claiming that Section 504 of the Rehabilitation Act is unconstitutional.
As outlined by Bazelon, DREDF, The Arc, CPR and National Health Law Program, the Texas v. Kennedy case remains a significant threat to the rights of people with disabilities. The 17 states continue to challenge the updated Section 504 regulations, which include a ban on disability discrimination in medical treatment decisions including the use of discriminatory value assessments. On July 29, 2025, a Joint Status Report was filed by HHS and 17 states, requesting that the court continue the pause in the case. On October 27, 2025, another Joint Status Report was filed by the parties, requesting that the court continue the "stay" in the case. On January 9, 2026, an additional Joint Status Report was filed by the parties, which discussed the HHS proposed rule to amend the Section 504 regulations pertaining to gender dysphoria. The parties noted that a new report would be published 14 days after a final rule is published.
Click here and scroll down to reach out to your State Attorney General.
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: Oregon PDAB
February 18, 2026
Click here to view.
Meeting: Colorado PDAB
February 20, 2026
Click here to view.
Meeting: Maine PDAB
February 23, 2026
Click here to view.
Webinar: Enhancing the Acute Stroke Care System for Optimal Treatment Outcomes — Integrating BDMS’s Model of Comprehensive Stroke Excellence
February 25, 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: Maryland PDAB
March 23, 2026
Click here to view.
1. 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.
2. 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.
3. 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.
4. PIPC Submits Letters Expressing Concern with Virginia PDAB Bill. PIPC shared the concerns of patients and people with disabilities related to efforts in Virginia to establish a Prescription Drug Affordability Board (PDAB) by submitting comments to the Virginia Subcommittee on Health and Human Resources and a letter to the Virginia State Senate. We oppose HB 483 and SB 271 which would allow for reference to value assessments of new health innovations using quality-adjusted life years (QALYs) and similar measures. Over 100 organizations representing patients and people with disabilities agree.
View our letter here.
5. States Renew Attack on Section 504 of the Rehabilitation Act and the Integration Mandate. On January 23, Texas and eight other states – Alaska, Florida, Indiana, Kansas, Louisiana, Missouri, Montana, and South Dakota – renewed their attack on Section 504 of the Rehabilitation Act and the integration mandate. In the new complaint, the states are now asking the court to: (1) declare that the entire Section 504 rule is unlawful; (2) stop the Department of Health and Human Services (HHS) from enforcing the entire rule; and (3) stop HHS from telling states they cannot take actions that place people with disabilities at “serious risk” of institutionalization. If the states' challenge is successful, the disability community will experience greater difficulty participating in their communities.
To protect the disabled community, we encourage contacting your governor and attorney general to withdraw the lawsuit. More information about contacting your representatives can be found here.
Click here to read more.
6. EACH/PIC Coalition Version 2.0 of Patient Experience Survey: Prescription Drug Affordability and Unaffordability. PIPC is pleased to share the updated version of a patient-led analysis of how people actually experience affordability in their daily lives. Patients define affordability as “the ability to consistently obtain medications within their essential monthly household budget, considering income, total healthcare costs, and life circumstances.” 100% of patients who said they stopped taking a drug due to affordability cited insurance-related reasons: denials, prior authorizations, step therapy, or exclusion of copay assistance on Medicare. 75% of patients who skipped or stretched doses also reported at least one instance of care disruption due to insurance delays. Improving insurance processes was among the final recommendations to address affordability challenges. Learn more here.
7. Survey Shows Virginia Voters Trust Doctors and are Skeptical of PDABs. A statewide survey of Virginia voters conducted by Quantum Survey Group finds that voters strongly trust doctors — not insurers, government boards, or health economists and policy analysts — to act in their best interest when it comes to their health care. Voters also identify insurance companies as the party playing the biggest role in determining how much they pay out of pocket for health care and grow increasingly skeptical of Prescription Drug Affordability Boards (PDABs) once real-world impacts are introduced. While affordability is a concern for many, support for upper payment limits on prescription medicines is shallow and erodes quickly when voters learn how such policies could affect access, premiums, and local decision-making.
Click here to view. View statement from Rare Access Advocacy Project related to PDAB legislation here.
8. PIPC Data Mine Blog: Why Patients Shouldn’t Bear Individual Harms for Better Population Averages. The recent draft Health Technology Assessment (HTA) methods report released by the Health Economics Methods Advisory (HEMA) group makes it crystal clear – policy grounded in convention HTA methods (like the QALY) are willing to harm the individual for the sake of the formula-derived average. The report was produced by a collaboration led by the Institute for Clinical and Economic Review (ICER) and health agencies in the UK and Canada. It underscores PIPC’s position on why policymakers must reject government policy based on national HTA, whether through direct use of ICER-style cost-effectiveness thresholds or indirect reliance on HTA-based decisions made in other countries.
View the new PIPC Data Mine Blog here.
9. 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.
10. Update on the Texas v. Kennedy Lawsuit. Texas v. Kennedy is a lawsuit brought by 17 states in federal court in the Northern District of Texas. The lawsuit challenges 2024 regulations from the U.S. Department of Health and Human Services (HHS), claiming that Section 504 of the Rehabilitation Act is unconstitutional.
As outlined by Bazelon, DREDF, The Arc, CPR and National Health Law Program, the Texas v. Kennedy case remains a significant threat to the rights of people with disabilities. The 17 states continue to challenge the updated Section 504 regulations, which include a ban on disability discrimination in medical treatment decisions including the use of discriminatory value assessments. On July 29, 2025, a Joint Status Report was filed by HHS and 17 states, requesting that the court continue the pause in the case. On October 27, 2025, another Joint Status Report was filed by the parties, requesting that the court continue the "stay" in the case. On January 9, 2026, an additional Joint Status Report was filed by the parties, which discussed the HHS proposed rule to amend the Section 504 regulations pertaining to gender dysphoria. The parties noted that a new report would be published 14 days after a final rule is published.
Click here and scroll down to reach out to your State Attorney General.
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.
- Canada. Innovative cancer treatments continue to be out of reach for patients due to arbitrary coverage decisions, as well as inconsistent funding for treatments across provinces.
- Canada. A Winnipeg cancer patient is traveling to the U.S. to receive treatment that is not covered in Canada.
- Canada. Patients continue to be left in limbo and out of the decision-making process as the government slow-walks changes to its rare disease program that would provide more funding and access.
- New Zealand. A patient with an aggressive form of breast cancer sold her business to pay out of pocket for a treatment not covered by Pharmac.
- United Kingdom. Two studies led by University College London found UK patients received chemotherapy and radiotherapy less often than in comparable countries and faced longer waits.
- United Kingdom. The vast majority of people taking weight loss drugs will have to pay to get them privately as the NHS has not yet built up the support service capacity
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: Research Protocol available. Public meeting: June 2026.
- Narcolepsy: Model Analysis Plan available. Public meeting: May 2026.
- IgA Nephropathy: Evidence Report available. Public meeting: February 2026.
- Launch Price and Access Report: Drug Approvals from 2023-2024: Final Report and Webinar Recording available.
- Smoking Cessation: Evidence Report and Presentation available. Public meeting: January 2026.
- 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: Oregon PDAB
February 18, 2026
Click here to view.
Meeting: Colorado PDAB
February 20, 2026
Click here to view.
Meeting: Maine PDAB
February 23, 2026
Click here to view.
Webinar: Enhancing the Acute Stroke Care System for Optimal Treatment Outcomes — Integrating BDMS’s Model of Comprehensive Stroke Excellence
February 25, 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: Maryland PDAB
March 23, 2026
Click here to view.
