In this week's edition...
— Health Affairs: PIPC Chairman Highlights PDAB Shortcomings. Click here to view the article.
— TODAY: NMQF Patient-Centered Physical Laws Framework (PLF) and MFN. Register to join here.
— ICER Again Fails to Address Patient and Disability Concerns Related to its Biased Methodology. View PIPC’s Data Mine blog related to the methodology and protocol here.
— PIPC Response to Trump Administration’s Continued Push for MFN Pricing. Click here to view the statement.
— Pharmaphorum Discusses the Affordability of Medicines and Innovation. Click here to read the article.
— PIPC Chairman Explains that the MFN is Exacting Too High a Price for Patients and People with Disabilities. Click here to read the statement.
— SFS Releases Survey Results Detailing Americans' Rejection of Foreign Drug Pricing Schemes. See details below.
— Data Mine Blog Analyzes a New Study from OHE on International Reference to QALYs. See details below.
— Reps. Cammack and Hern Introduce QALY Ban Bill. See details below.
— 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.
— Health Affairs: PIPC Chairman Highlights PDAB Shortcomings. Click here to view the article.
— TODAY: NMQF Patient-Centered Physical Laws Framework (PLF) and MFN. Register to join here.
— ICER Again Fails to Address Patient and Disability Concerns Related to its Biased Methodology. View PIPC’s Data Mine blog related to the methodology and protocol here.
— PIPC Response to Trump Administration’s Continued Push for MFN Pricing. Click here to view the statement.
— Pharmaphorum Discusses the Affordability of Medicines and Innovation. Click here to read the article.
— PIPC Chairman Explains that the MFN is Exacting Too High a Price for Patients and People with Disabilities. Click here to read the statement.
— SFS Releases Survey Results Detailing Americans' Rejection of Foreign Drug Pricing Schemes. See details below.
— Data Mine Blog Analyzes a New Study from OHE on International Reference to QALYs. See details below.
— Reps. Cammack and Hern Introduce QALY Ban Bill. See details below.
— 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.
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. Health Affairs: PIPC Chairman Highlights PDAB Shortcomings. Health Affairs published an article entitled “State Prescription Drug Affordability Boards: When Cost Takes Precedence over Health." The author, PIPC Chairman Tony Coelho stated, “For more than 40 years, I have advocated against policies that discriminate against people with disabilities and other vulnerable populations. Recently, I've grown increasingly alarmed watching states prioritize short-term budget savings over patients' needs through Prescription Drug Affordability Boards (PDABs). These boards are relying on overtly discriminatory standards for judging the value of health and disability—either directly or by referencing decisions made by other countries that use these standards. While PDABs exist to reduce system costs, they're doing so at the expense of patients and people with disabilities.” Click here to view Chairman Coelho’s article. Click here to view the Sisters Working it Out article on PDAB’s flawed approach to equity and access.
2. TODAY: NMQF Patient-Centered Physical Laws Framework (PLF) and MFN. PIPC is pleased to join the National Minority Quality Forum today at 12pm at a session on "Applying PLF to MFN Policy” and introducing the NMQF Patient-Centered Physical Laws Framework (PLF). The invite states, "This new lens for evaluating healthcare policies translates the natural laws that govern our bodies' healing processes into practical principles for evaluating healthcare policies. PLF imposes a more informed level of analysis that respects the time-sensitive nature of disease progression; preserves patients' energy for healing rather than navigating bureaucratic obstacles; supports the body's natural drive toward health equilibrium etc.” Register to join here.
3. ICER Again Fails to Address Patient and Disability Concerns Related to its Biased Methodology. Last September, PIPC published a Data Mine blog highlighting concerns that ICER’s expected report on launch price and access used an unreliable protocol relying on discriminatory measures. The report has now been published, and met expectations for making unreliable assumptions and conclusions based on discriminatory measures, despite much uncertainty in the data. As PIPC stated in the original blog reviewing the study protocol, the report would never survive a rigorous peer review. While PIPC continues to review the report, we would highlight that it very blatantly translates uncertain and inaccurate data into flawed conclusions about equal value life years (EvLYs) lost derived from ICER’s discriminatory QALY-based studies, as well as extrapolations about the impact on premiums, insurance and mortality.
ICER fails to take responsibility for its own influence over utilization management and coverage decisions by insurers that lead to affordability challenges for patients. Despite acknowledging how much information feeding the report’s conclusions was inaccurate, incomplete and unknown, ICER published it anyway. PIPC will continue to review the report in more detail.
View PIPC’s Data Mine blog related to the methodology and protocol here.
4. PIPC Response to Trump Administration’s Continued Push for MFN Pricing. PIPC released a statement warning against reliance on discriminatory measures like quality-adjusted life years (QALYs) and similar measures of cost effectiveness in decisions related to reimbursement and coverage of health care, including Most Favored Nation (MFN) pricing, that adopt other countries’ discriminatory QALY standards by referencing their reimbursement decisions. PIPC stated, "While we do not know the details of recent actions by the Administration or policies that are pending at the Office of Management and Budget, we remain very concerned that these efforts could open the door to reliance on QALYs and similar cost-effectiveness metrics in U.S. policy via reference to foreign prices...The United States must prioritize early access to innovations that optimize quality of life for all. We must protect against the kind of care rationing that is accepted elsewhere in the world. That means avoiding approaches that would modify U.S. coverage or pricing policy to factor in QALYs and similar measures, whether directly or by reference to other countries.” Stories like the Williams’ family illustrate why QALYs have no place in U.S. policy. Patients do not have the luxury of time. Click here to view the Williams’ struggle for access to care for Wilson disease. Click here to view the PIPC statement.
5. Pharmaphorum Discusses the Affordability of Medicines and Innovation. On October 10, Pharmaphorum published an article discussing how to make medicines affordable without choking off the innovations for patients. The article explains the following: "QALYs and cost-effectiveness thresholds cannot fully capture the broader impact of innovation. Consider the COVID-19 vaccines: delivered in record time, they saved millions of lives, shielded health systems, and allowed economies to reopen. But none of that showed up in a cost-effectiveness model. The same is true for gene therapies, cancer breakthroughs, and rare disease treatments now coming forward." Click here to read the article.
6. PIPC Chairman Explains that the MFN is Exacting Too High a Price for Patients and People with Disabilities. In his latest "Chairman's Corner" blog, PIPC Chairman Tony Coelho explains why the "Most Favored Nation" (MFN) approach to drug pricing will devalue disabled lives. He explains the following: "Since it was first advanced by CMS in 2019, I’ve staunchly opposed proposals for so-called foreign reference pricing or Most Favored Nation pricing for drugs – not because I don’t want to see lower drug prices, but because this approach exacts too high a price on patients and people with disabilities."
Click here to read the statement. Learn more here about how other countries devalue people with disabilities in the United Kingdom, Australia, South Korea, and Canada.
7. SFS Releases Survey Results Detailing Americans' Rejection of Foreign Drug Pricing Schemes. On September 17, Survivors for Solutions (SFS) released a new survey of over 1,200 individuals which found strong, bipartisan opposition to policies that import foreign drug pricing standards, such as the Most Favored Nation (MFN) proposal, which relies on discriminatory metrics like the Quality-Adjusted Life Year (QALY) to determine value. The data reveal deep concern about how the QALY metric is a tool used by European governments to undervalue the lives of older individuals, people with disabilities, and those living with chronic illness when determining the cost of treatments.
Key findings include: (1) 85% of respondents are concerned about policies that ration care based on cost formulas; (2) 84% are concerned that QALY-based policies discriminate against seniors and patients with disabilities; (3) 88% are concerned about “one-size-fits-all” government price-setting that limits doctor and patient choice; (4) over three-quarters of respondents prefer market-based reforms that lower prices by reining in middlemen and empowering patients. Additionally, they support safeguards against policies like the QALY.
Click here to read more.
8. Data Mine Blog Analyzes a New Study from OHE on International Reference to QALYs. A new analysis by the Office of Health Economics (OHE) – the world’s oldest independent health economics research organization – sheds light on this crucial issue. To answer the question of how QALYs are used across countries to inform reimbursement and pricing decisions, OHE reviewed Health Technology Assessment (HTA) practices across Organisation for Economic Co-operation and Development (OECD) countries, with a goal of reporting on how QALYs are used in pricing and reimbursement decisions. OECD member countries have been the reference for prices included in proposed U.S. drug pricing policies such as “Most Favored Nation” pricing, a concept advanced by the current Trump administration, as well as Congressional legislative proposals. Click here to read more.
9. Reps. Cammack and Hern Introduce QALY Ban Bill. Representatives Kat Cammack (FL-03) and Kevin Hern (OK-01) introduced 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 in federal programs like Medicare, Medicaid, CHIP, and ACA exchanges. “The use of so-called cost-effective measures like QALYs threatens access to lifesaving care for the most vulnerable Americans,” said Congresswoman Cammack. “I am honored to lead this legislation alongside my colleague Rep. Kevin Hern to ensure that no patient is denied treatment simply because a mathematical formula decided their life is worth less. Every American—regardless of disability, chronic illness, or rare condition—deserves equal access to care.” View the press release here. View more information about the bill here. View PIPC's one pager here.
10. Opportunity: Sign an Open Letter Rejecting Use of QALYs and Similar Measures. In 2021, the Partnership to Improve Patient Care (PIPC), the American Association of People with Disabilities, and several organizations from the patient and disability communities partnered to publish an Open Letter that grounded our advocacy against policies that would reference QALYs and similar measures that devalue people with disabilities and older adults. 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 a revised Open Letter! The threat for incorporating QALYs and similar measures into the American health system has grown with the last administration’s reference to QALY-based studies in the Medicare Drug Negotiation Program and in this administration's Executive Order seeking to model foreign countries that base drug prices on discriminatory value assessments. 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.
Click here to contact your Member of Congress.
11. 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, a Joint Status Report was filed by HHS and 17 states, requesting that the court continue the pause in the case.
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
ICER Launch Price and Access Report Webinar
Oct. 27, 2025
Click here to view.
Colorado PDAB Meeting
Nov. 14, 2025
Click here to view.
Maryland PDAB Meeting
Nov. 17, 2025
Click here to view.
Oregon PDAB Meeting
Nov. 19, 2025
Click here to view.
Washington PDAB Meeting
Nov. 19, 2025
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. Health Affairs: PIPC Chairman Highlights PDAB Shortcomings. Health Affairs published an article entitled “State Prescription Drug Affordability Boards: When Cost Takes Precedence over Health." The author, PIPC Chairman Tony Coelho stated, “For more than 40 years, I have advocated against policies that discriminate against people with disabilities and other vulnerable populations. Recently, I've grown increasingly alarmed watching states prioritize short-term budget savings over patients' needs through Prescription Drug Affordability Boards (PDABs). These boards are relying on overtly discriminatory standards for judging the value of health and disability—either directly or by referencing decisions made by other countries that use these standards. While PDABs exist to reduce system costs, they're doing so at the expense of patients and people with disabilities.” Click here to view Chairman Coelho’s article. Click here to view the Sisters Working it Out article on PDAB’s flawed approach to equity and access.
2. TODAY: NMQF Patient-Centered Physical Laws Framework (PLF) and MFN. PIPC is pleased to join the National Minority Quality Forum today at 12pm at a session on "Applying PLF to MFN Policy” and introducing the NMQF Patient-Centered Physical Laws Framework (PLF). The invite states, "This new lens for evaluating healthcare policies translates the natural laws that govern our bodies' healing processes into practical principles for evaluating healthcare policies. PLF imposes a more informed level of analysis that respects the time-sensitive nature of disease progression; preserves patients' energy for healing rather than navigating bureaucratic obstacles; supports the body's natural drive toward health equilibrium etc.” Register to join here.
3. ICER Again Fails to Address Patient and Disability Concerns Related to its Biased Methodology. Last September, PIPC published a Data Mine blog highlighting concerns that ICER’s expected report on launch price and access used an unreliable protocol relying on discriminatory measures. The report has now been published, and met expectations for making unreliable assumptions and conclusions based on discriminatory measures, despite much uncertainty in the data. As PIPC stated in the original blog reviewing the study protocol, the report would never survive a rigorous peer review. While PIPC continues to review the report, we would highlight that it very blatantly translates uncertain and inaccurate data into flawed conclusions about equal value life years (EvLYs) lost derived from ICER’s discriminatory QALY-based studies, as well as extrapolations about the impact on premiums, insurance and mortality.
ICER fails to take responsibility for its own influence over utilization management and coverage decisions by insurers that lead to affordability challenges for patients. Despite acknowledging how much information feeding the report’s conclusions was inaccurate, incomplete and unknown, ICER published it anyway. PIPC will continue to review the report in more detail.
View PIPC’s Data Mine blog related to the methodology and protocol here.
4. PIPC Response to Trump Administration’s Continued Push for MFN Pricing. PIPC released a statement warning against reliance on discriminatory measures like quality-adjusted life years (QALYs) and similar measures of cost effectiveness in decisions related to reimbursement and coverage of health care, including Most Favored Nation (MFN) pricing, that adopt other countries’ discriminatory QALY standards by referencing their reimbursement decisions. PIPC stated, "While we do not know the details of recent actions by the Administration or policies that are pending at the Office of Management and Budget, we remain very concerned that these efforts could open the door to reliance on QALYs and similar cost-effectiveness metrics in U.S. policy via reference to foreign prices...The United States must prioritize early access to innovations that optimize quality of life for all. We must protect against the kind of care rationing that is accepted elsewhere in the world. That means avoiding approaches that would modify U.S. coverage or pricing policy to factor in QALYs and similar measures, whether directly or by reference to other countries.” Stories like the Williams’ family illustrate why QALYs have no place in U.S. policy. Patients do not have the luxury of time. Click here to view the Williams’ struggle for access to care for Wilson disease. Click here to view the PIPC statement.
5. Pharmaphorum Discusses the Affordability of Medicines and Innovation. On October 10, Pharmaphorum published an article discussing how to make medicines affordable without choking off the innovations for patients. The article explains the following: "QALYs and cost-effectiveness thresholds cannot fully capture the broader impact of innovation. Consider the COVID-19 vaccines: delivered in record time, they saved millions of lives, shielded health systems, and allowed economies to reopen. But none of that showed up in a cost-effectiveness model. The same is true for gene therapies, cancer breakthroughs, and rare disease treatments now coming forward." Click here to read the article.
6. PIPC Chairman Explains that the MFN is Exacting Too High a Price for Patients and People with Disabilities. In his latest "Chairman's Corner" blog, PIPC Chairman Tony Coelho explains why the "Most Favored Nation" (MFN) approach to drug pricing will devalue disabled lives. He explains the following: "Since it was first advanced by CMS in 2019, I’ve staunchly opposed proposals for so-called foreign reference pricing or Most Favored Nation pricing for drugs – not because I don’t want to see lower drug prices, but because this approach exacts too high a price on patients and people with disabilities."
Click here to read the statement. Learn more here about how other countries devalue people with disabilities in the United Kingdom, Australia, South Korea, and Canada.
7. SFS Releases Survey Results Detailing Americans' Rejection of Foreign Drug Pricing Schemes. On September 17, Survivors for Solutions (SFS) released a new survey of over 1,200 individuals which found strong, bipartisan opposition to policies that import foreign drug pricing standards, such as the Most Favored Nation (MFN) proposal, which relies on discriminatory metrics like the Quality-Adjusted Life Year (QALY) to determine value. The data reveal deep concern about how the QALY metric is a tool used by European governments to undervalue the lives of older individuals, people with disabilities, and those living with chronic illness when determining the cost of treatments.
Key findings include: (1) 85% of respondents are concerned about policies that ration care based on cost formulas; (2) 84% are concerned that QALY-based policies discriminate against seniors and patients with disabilities; (3) 88% are concerned about “one-size-fits-all” government price-setting that limits doctor and patient choice; (4) over three-quarters of respondents prefer market-based reforms that lower prices by reining in middlemen and empowering patients. Additionally, they support safeguards against policies like the QALY.
Click here to read more.
8. Data Mine Blog Analyzes a New Study from OHE on International Reference to QALYs. A new analysis by the Office of Health Economics (OHE) – the world’s oldest independent health economics research organization – sheds light on this crucial issue. To answer the question of how QALYs are used across countries to inform reimbursement and pricing decisions, OHE reviewed Health Technology Assessment (HTA) practices across Organisation for Economic Co-operation and Development (OECD) countries, with a goal of reporting on how QALYs are used in pricing and reimbursement decisions. OECD member countries have been the reference for prices included in proposed U.S. drug pricing policies such as “Most Favored Nation” pricing, a concept advanced by the current Trump administration, as well as Congressional legislative proposals. Click here to read more.
9. Reps. Cammack and Hern Introduce QALY Ban Bill. Representatives Kat Cammack (FL-03) and Kevin Hern (OK-01) introduced 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 in federal programs like Medicare, Medicaid, CHIP, and ACA exchanges. “The use of so-called cost-effective measures like QALYs threatens access to lifesaving care for the most vulnerable Americans,” said Congresswoman Cammack. “I am honored to lead this legislation alongside my colleague Rep. Kevin Hern to ensure that no patient is denied treatment simply because a mathematical formula decided their life is worth less. Every American—regardless of disability, chronic illness, or rare condition—deserves equal access to care.” View the press release here. View more information about the bill here. View PIPC's one pager here.
10. Opportunity: Sign an Open Letter Rejecting Use of QALYs and Similar Measures. In 2021, the Partnership to Improve Patient Care (PIPC), the American Association of People with Disabilities, and several organizations from the patient and disability communities partnered to publish an Open Letter that grounded our advocacy against policies that would reference QALYs and similar measures that devalue people with disabilities and older adults. 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 a revised Open Letter! The threat for incorporating QALYs and similar measures into the American health system has grown with the last administration’s reference to QALY-based studies in the Medicare Drug Negotiation Program and in this administration's Executive Order seeking to model foreign countries that base drug prices on discriminatory value assessments. 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.
Click here to contact your Member of Congress.
11. 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, a Joint Status Report was filed by HHS and 17 states, requesting that the court continue the pause in the case.
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. Prolonged health care negotiations between provinces places patients in the balance as they await easier access to basic medications.
- New Zealand. Patient advocates are calling for urgent action to expand access to meningococcal meningitis vaccines, as funding is currently limited.
- New Zealand. The lack of access to proven obesity treatments is resulting in some patients getting scammed on the black market.
- United Kingdom. The family of a young boy with cancer must resort to crowdfunding in order to gain access to treatments not covered by the NHS.
- United Kingdom. Price negotiations on a “game changing” HIV drug has resulted in arbitrary restrictions that limit access to certain patients.
- United Kingdom. Pharmacies are warning that “40 to 50%" of the medicines they were purchasing were not covered by NHS, thus resulting in more than a dozen closures over the past few years.
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: Public meeting: June 2026.
- Narcolepsy: Draft Scoping Document available. Public comments due November 5, 2025. Public meeting: May 2026.
- IgA Nephropathy: Model Analysis Plan available. Public meeting: February 2026.
- Launch Price and Access Report: Drug Approvals from 2023-2024: Final Report available. Public meeting: October 2025.
- Smoking Cessation: Draft Evidence Report available. Public comments due November 17, 2025. Public meeting: January 2026.
- Obesity Management: Draft Evidence Report available. Public meeting: November 2025.
- Examining Strategies to Ensure Affordable Access for Obesity Medications: White Paper published on April 9, 2025.
- Non-Cystic Fibrosis Bronchiectasis: Evidence Report and Evidence Presentation 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
ICER Launch Price and Access Report Webinar
Oct. 27, 2025
Click here to view.
Colorado PDAB Meeting
Nov. 14, 2025
Click here to view.
Maryland PDAB Meeting
Nov. 17, 2025
Click here to view.
Oregon PDAB Meeting
Nov. 19, 2025
Click here to view.
Washington PDAB Meeting
Nov. 19, 2025
Click here to view.
