In this week's edition...
— CMS Extends Deadline to March 18 to Register for Public Engagement Events. View the drugs being reviewed here and get help preparing to tell your story by registering for the Patient Inclusion Council here. Register to participate by March 18 in a CMS' virtual, patient-focused roundtable event or speak at the virtual, livestreamed town hall meeting focused on clinical considerations regarding the selected drugs. Public engagement events will be held in April 2026. Reach out to [email protected] using the subject line “Public Engagement” with any questions.
— PIPC Responds to Continued Consideration of Virginia PDAB Legislation.
Click here to read the letter.
— HIV+HEP Submits letter Opposing GUARD Model. View the press release and letter here.
— President of NDSS Publishes Opinion Opposing Policies Importing QALYs. Click here to read the full piece. Click here to learn more about Most Favored Nation and concerns related to importing QALYs.
— PQA to Hold Heart Failure Technical Expert Panel. A self-nomination form is available for patients, caregivers and patient advocates. A TEP information document provides details on the panel and what is required for nominations. See PQA's recent blog for more information.
— PIPC Submits Comments to Connecticut Legislature Opposing Use of QALYs and Similar Measures. View the PIPC letter here. View the letter from Color of Gastrointestinal Illnesses (COGI) here.
— 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.
— 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.
— 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.
— CMS Extends Deadline to March 18 to Register for Public Engagement Events. View the drugs being reviewed here and get help preparing to tell your story by registering for the Patient Inclusion Council here. Register to participate by March 18 in a CMS' virtual, patient-focused roundtable event or speak at the virtual, livestreamed town hall meeting focused on clinical considerations regarding the selected drugs. Public engagement events will be held in April 2026. Reach out to [email protected] using the subject line “Public Engagement” with any questions.
— PIPC Responds to Continued Consideration of Virginia PDAB Legislation.
Click here to read the letter.
— HIV+HEP Submits letter Opposing GUARD Model. View the press release and letter here.
— President of NDSS Publishes Opinion Opposing Policies Importing QALYs. Click here to read the full piece. Click here to learn more about Most Favored Nation and concerns related to importing QALYs.
— PQA to Hold Heart Failure Technical Expert Panel. A self-nomination form is available for patients, caregivers and patient advocates. A TEP information document provides details on the panel and what is required for nominations. See PQA's recent blog for more information.
— PIPC Submits Comments to Connecticut Legislature Opposing Use of QALYs and Similar Measures. View the PIPC letter here. View the letter from Color of Gastrointestinal Illnesses (COGI) here.
— 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.
— 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.
— 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. CMS Extends Deadline to March 18 to Register for Public Engagement Events. Under the Medicare Drug Price Negotiation Program, the current cycle of negotiation and renegotiation is underway. CMS invited patients, caregivers, representatives of patient advocacy organizations, clinicians, researchers, and others to share information about the selected drugs, the conditions they treat, and/or other drugs that treat the same conditions. Individuals who have experience with the selected drug, as well as individuals who have experience with a health condition treated by the selected drug or experience with other drugs for the health condition, are encouraged to register. View the drugs being reviewed here and get help preparing to tell your story by registering for the Patient Inclusion Council here.
Register to participate by March 18 in a CMS' virtual, patient-focused roundtable event or speak at the virtual, livestreamed town hall meeting focused on clinical considerations regarding the selected drugs. Public engagement events will be held in April 2026. Reach out to [email protected] using the subject line “Public Engagement” with any questions.
2. PIPC Responds to Continued Consideration of Virginia PDAB Legislation. PIPC submitted a letter to State legislative leaders in Virginia voicing continued concern about SB 271 due to the bill’s discriminatory implications for people with disabilities and patients with chronic conditions. PIPC remains concerned about this legislation, which would carry significant risks for patients and people with disabilities through the use of QALYs and other measures that discriminate. The letter also urges lawmakers to consider the implications of Maximum Fair Price (MFP) reference pricing for formulary placement, delayed or denied care, and increased out-of-pocket costs for patients choosing the care their doctors prescribe and that best meets their health needs.
"We can all agree that affordable access to health care is a significant priority," the letter states. "We do not need more policies putting payers between decisions made by doctors and patients."
Click here to read the letter.
3. HIV+HEP Submits letter Opposing GUARD Model. HIV+Hep also commented on the proposed GUARD Model importing QALY-based pricing from other countries. The press release stated, "As detailed in this comment, the GUARD Model relies on foreign list prices that cannot be directly compared to how prescription drugs are priced, paid for, or accessed in the United States. U.S. list prices incorporate substantial downstream obligations that materially reduce net prices and support patient access, including hundreds of billions in annual domestic statutory and market-based obligations, such as Medicaid and commercial rebates, 340B discounts, and patient assistance programs. By failing to account for these dynamics, the model risks undermining existing affordability mechanisms and destabilizing patient assistance and safety net programs that many patients depend on. At the same time, the proposal acknowledges potential effects on research and development and treatment advancement, yet does not require CMS to evaluate those impacts, even as patients continue to depend on advances toward better therapies and potential cures. Lastly, its monitoring framework is retrospective by design, offering no meaningful protection for patients who cannot afford even a temporary disruption in care.” View the press release and letter here.
4. President of NDSS Publishes Opinion Opposing Policies Importing QALYs. Hampus Hillerstrom, President of the National Down Syndrome Society (NDSS), recently published a piece in which he criticizes foreign countries' use of discriminatory metrics that affect access to treatment for individuals with disabilities and chronic conditions. In his article, he writes the following: "In both the United Kingdom and Canada, patients often wait years for innovative drugs that are available immediately in the United States. The National Institute for Health and Care Excellence, the British agency that determines which medicines are available to patients, recently recommended against routine use of new Alzheimer’s disease drugs because they failed to meet rigid cost-per-QALY thresholds, making it harder for patients to access treatments proven to slow cognitive decline. This is important for adults with Down syndrome who have a 90% chance of getting Alzheimer’s in their lifetime."
Click here to read the full piece. Click here to learn more about Most Favored Nation and concerns related to importing QALYs.
5. PQA to Hold Heart Failure Technical Expert Panel. PQA, the Pharmacy Quality Alliance, is convening a measure development technical expert panel (TEP) to support the development of a new health plan measure concept: Evidence of Guideline-Directed Medical Therapy in Persons with Heart Failure. This measure will assess the percentage of individuals with prescription claims for guideline-directed medical therapies for the treatment of heart failure. The TEP will include up to three additional individuals representing patients, caregivers and patient advocates. Given the focused nature of this TEP, preference will be given to individuals with lived experience with heart failure. Nominations are due by Friday, March 27. The first TEP meeting is April 22. A self-nomination form is available for patients, caregivers and patient advocates. A TEP information document provides details on the panel and what is required for nominations. See PQA's recent blog for more information.
6. PIPC Submits Comments to Connecticut Legislature Opposing Use of QALYs and Similar Measures. PIPC shared concerns with the Connecticut legislature related to Section 6 of House Bill 5040 and its potential use of third-party comparative effectiveness reviews of prescription drugs in a manner that may allow for use of cost effectiveness analyses using quality-adjusted life years (QALYs) and similar measures from entities like the Institute for Clinical and Economic Review (ICER). PIPC stated, "Before advancing this legislation, it is important for the legislature to also be aware of the existing law and regulations that bar the use of QALYs and similar measures in decisions impacting reimbursement and coverage. We are very concerned that the legislation does not explicitly bar the use of QALYs and similar measures such as the equal value of life year gained (evLYG), consistent with federal law, and potentially allows for use of third-party studies that incorporate the use of QALYs and similar measures.” View the PIPC letter here. View the letter from Color of Gastrointestinal Illnesses (COGI) here.
7. 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.
8. 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.
9. 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.
10. Devaluing Disabled Lives, International Laws Fall Short of Protecting Equal Access to Health Care for People with Disabilities as Compared to the U.S. A new PIPC Data Mine Blog highlights how international laws protecting people with disabilities differ from the U.S., underscoring a very different ethic in how other countries provide equal access to health care. "The U.S. has been the model for other nations in enacting laws and policies supporting the inclusion of people with disabilities in communities and society, rooted in an ethic that disabled lives are valuable. American laws protecting people with disabilities from discrimination, often rooted in bias and stigma, extend to our health system...Other countries have followed the U.S. lead, modeling our rules on accessibility of public spaces and accommodations to enable people with disabilities to work and to live in communities. However, they fall short in providing protections for people with disabilities specific to access to health care…” View the new Data Mine Blog here.
11. 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.
12. 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.
13. 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.
14. 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.
15. 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: 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.
Meeting: Minnesota PDAB
April 14, 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. CMS Extends Deadline to March 18 to Register for Public Engagement Events. Under the Medicare Drug Price Negotiation Program, the current cycle of negotiation and renegotiation is underway. CMS invited patients, caregivers, representatives of patient advocacy organizations, clinicians, researchers, and others to share information about the selected drugs, the conditions they treat, and/or other drugs that treat the same conditions. Individuals who have experience with the selected drug, as well as individuals who have experience with a health condition treated by the selected drug or experience with other drugs for the health condition, are encouraged to register. View the drugs being reviewed here and get help preparing to tell your story by registering for the Patient Inclusion Council here.
Register to participate by March 18 in a CMS' virtual, patient-focused roundtable event or speak at the virtual, livestreamed town hall meeting focused on clinical considerations regarding the selected drugs. Public engagement events will be held in April 2026. Reach out to [email protected] using the subject line “Public Engagement” with any questions.
2. PIPC Responds to Continued Consideration of Virginia PDAB Legislation. PIPC submitted a letter to State legislative leaders in Virginia voicing continued concern about SB 271 due to the bill’s discriminatory implications for people with disabilities and patients with chronic conditions. PIPC remains concerned about this legislation, which would carry significant risks for patients and people with disabilities through the use of QALYs and other measures that discriminate. The letter also urges lawmakers to consider the implications of Maximum Fair Price (MFP) reference pricing for formulary placement, delayed or denied care, and increased out-of-pocket costs for patients choosing the care their doctors prescribe and that best meets their health needs.
"We can all agree that affordable access to health care is a significant priority," the letter states. "We do not need more policies putting payers between decisions made by doctors and patients."
Click here to read the letter.
3. HIV+HEP Submits letter Opposing GUARD Model. HIV+Hep also commented on the proposed GUARD Model importing QALY-based pricing from other countries. The press release stated, "As detailed in this comment, the GUARD Model relies on foreign list prices that cannot be directly compared to how prescription drugs are priced, paid for, or accessed in the United States. U.S. list prices incorporate substantial downstream obligations that materially reduce net prices and support patient access, including hundreds of billions in annual domestic statutory and market-based obligations, such as Medicaid and commercial rebates, 340B discounts, and patient assistance programs. By failing to account for these dynamics, the model risks undermining existing affordability mechanisms and destabilizing patient assistance and safety net programs that many patients depend on. At the same time, the proposal acknowledges potential effects on research and development and treatment advancement, yet does not require CMS to evaluate those impacts, even as patients continue to depend on advances toward better therapies and potential cures. Lastly, its monitoring framework is retrospective by design, offering no meaningful protection for patients who cannot afford even a temporary disruption in care.” View the press release and letter here.
4. President of NDSS Publishes Opinion Opposing Policies Importing QALYs. Hampus Hillerstrom, President of the National Down Syndrome Society (NDSS), recently published a piece in which he criticizes foreign countries' use of discriminatory metrics that affect access to treatment for individuals with disabilities and chronic conditions. In his article, he writes the following: "In both the United Kingdom and Canada, patients often wait years for innovative drugs that are available immediately in the United States. The National Institute for Health and Care Excellence, the British agency that determines which medicines are available to patients, recently recommended against routine use of new Alzheimer’s disease drugs because they failed to meet rigid cost-per-QALY thresholds, making it harder for patients to access treatments proven to slow cognitive decline. This is important for adults with Down syndrome who have a 90% chance of getting Alzheimer’s in their lifetime."
Click here to read the full piece. Click here to learn more about Most Favored Nation and concerns related to importing QALYs.
5. PQA to Hold Heart Failure Technical Expert Panel. PQA, the Pharmacy Quality Alliance, is convening a measure development technical expert panel (TEP) to support the development of a new health plan measure concept: Evidence of Guideline-Directed Medical Therapy in Persons with Heart Failure. This measure will assess the percentage of individuals with prescription claims for guideline-directed medical therapies for the treatment of heart failure. The TEP will include up to three additional individuals representing patients, caregivers and patient advocates. Given the focused nature of this TEP, preference will be given to individuals with lived experience with heart failure. Nominations are due by Friday, March 27. The first TEP meeting is April 22. A self-nomination form is available for patients, caregivers and patient advocates. A TEP information document provides details on the panel and what is required for nominations. See PQA's recent blog for more information.
6. PIPC Submits Comments to Connecticut Legislature Opposing Use of QALYs and Similar Measures. PIPC shared concerns with the Connecticut legislature related to Section 6 of House Bill 5040 and its potential use of third-party comparative effectiveness reviews of prescription drugs in a manner that may allow for use of cost effectiveness analyses using quality-adjusted life years (QALYs) and similar measures from entities like the Institute for Clinical and Economic Review (ICER). PIPC stated, "Before advancing this legislation, it is important for the legislature to also be aware of the existing law and regulations that bar the use of QALYs and similar measures in decisions impacting reimbursement and coverage. We are very concerned that the legislation does not explicitly bar the use of QALYs and similar measures such as the equal value of life year gained (evLYG), consistent with federal law, and potentially allows for use of third-party studies that incorporate the use of QALYs and similar measures.” View the PIPC letter here. View the letter from Color of Gastrointestinal Illnesses (COGI) here.
7. 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.
8. 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.
9. 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.
10. Devaluing Disabled Lives, International Laws Fall Short of Protecting Equal Access to Health Care for People with Disabilities as Compared to the U.S. A new PIPC Data Mine Blog highlights how international laws protecting people with disabilities differ from the U.S., underscoring a very different ethic in how other countries provide equal access to health care. "The U.S. has been the model for other nations in enacting laws and policies supporting the inclusion of people with disabilities in communities and society, rooted in an ethic that disabled lives are valuable. American laws protecting people with disabilities from discrimination, often rooted in bias and stigma, extend to our health system...Other countries have followed the U.S. lead, modeling our rules on accessibility of public spaces and accommodations to enable people with disabilities to work and to live in communities. However, they fall short in providing protections for people with disabilities specific to access to health care…” View the new Data Mine Blog here.
11. 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.
12. 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.
13. 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.
14. 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.
15. 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.
- Parkinson's Disease: Draft Scoping Document available. Public comments due by March 27, 2026. Public meeting: October 2026.
- COVID-19: Model Analysis Plan available. Public meeting: June 2026.
- Narcolepsy: Draft Evidence Report available. Public comments are due by April 7, 2026. Public meeting: May 2026.
- IgA Nephropathy: Evidence Report and Evidence Presentation available. Public meeting: February 2026.
- Launch Price and Access Report: Drug Approvals from 2023-2024: Final Report and Webinar Recording available.
- Smoking Cessation: Final Evidence Report and Meeting Summary available.
- Obesity Management: Final Evidence Report and Meeting Summary available.
- Examining Strategies to Ensure Affordable Access for Obesity Medications: White Paper published on April 9, 2025.
- Non-Cystic Fibrosis Bronchiectasis: Final Evidence Report and Meeting Summary available.
- Spinal Muscular Atrophy: Final Evidence Report and Meeting Summary available.
- Multiple Sclerosis — SPMS: Final Evidence Report and Meeting Summary available.
- Retinitis Pigmentosa: Final Evidence Report and Meeting Summary available.
Upcoming Events and Webinars
Meeting: Washington State PDAB
March 18, 2026
Click here to view.
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
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Meeting: Minnesota PDAB
April 14, 2026
Click here to view.
