In this week's edition...

— MFN Policies Devalue Patients, Limiting Treatments for People like Gerry. We must not import access restrictions that devalue people living with chronic illnesses.
-- PIPC Provides Additional Comments to Minnesota PDAB. View the PIPC letter here.
-- PIPC Report: The UK Health System, Lessons for the U.S. and the Risks of MFN Drug Pricing. Click here to read the full report.
-- Indiana Withdraws from Attack on Section 504 of the Rehabilitation Act and the Integration Mandate. View the Arc of Indiana press release HERE. Learn more HERE about how state advocates are pushing back.
-- Accessible Healthcare for People with Disabilities: An Implementation Guide for Healthcare Organizations. View and share the resource HERE.
-- Liver Disease Set of Patient-Centered Outcome Measures. To learn more about this project, please visit the website here. You can share the patient survey here.
-- Most-Favored-Nation (MFN) Drug Pricing: You Can’t Import European Prices Without Importing European Tradeoffs. View and share HERE.
-- Former Members of Congress and Physicians Call Out How MFN Devalues Disabled Lives. View the article here.
-- Michigan Seeks to Incorporate QALYs into Appropriations Bill. View the letters HERE. 
— Patients and People with Disabilities Urge Policymakers to Reject Importing Foreign Drug Pricing Policies. View PIPC’s response to the SOTU here. View the letters from 119 organizations to CMS commenting on the GLOBE and GUARD models here. View the blog here. Learn more about the implications of importing QALYs 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.

In this week's edition...
 
— PIPC Report: The UK Health System, Lessons for the U.S. and the Risks of MFN Drug Pricing. Click here to read the full report.
— Former Members of Congress and Physicians Call Out How MFN Devalues Disabled Lives. View the article here.
— Louisiana Advances Bill to Import QALYs, Advocates Respond. View the Bossier Press-Tribune article here. View the PIPC letter here.
— Michigan Seeks to Incorporate QALYs into Appropriations Bill. View the letters HERE. 
— MFN Policies Devalue Patients, Limiting Treatments for People like Gerry. We must not import access restrictions that devalue people living with chronic illnesses.
— Access at Risk: Innovation for Health Equity in a Time of Uncertainty. Register here.
— Trump Administration Pushes Compliance Deadlines for DOJ's Title II Rule on Digital Accessibility. PIPC will continue to monitor the rule and advocate to ensure that the disabled community does not witness a deterioration in accessibility standards.
— Patients and People with Disabilities Urge Policymakers to Reject Importing Foreign Drug Pricing Policies. View PIPC’s response to the SOTU here. View the letters from 119 organizations to CMS commenting on the GLOBE and GUARD models here. View the blog here. Learn more about the implications of importing QALYs here.
— HEMA Finalizes Report on Economic Evaluation. View PIPC’s critique of the draft report here. View the final report 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.
— Health Affairs Discusses MFN Drug Pricing and QALYs. Click here to read the full article.
— 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.

In this week's edition...
 
— Former Members of Congress and Physicians Call Out How MFN Devalues Disabled Lives. View the article here.
— MFN Policies Devalue Patients, Limiting Treatments for People like Gerry. We must not import access restrictions that devalue people living with chronic illnesses.
— Access at Risk: Innovation for Health Equity in a Time of Uncertainty. Register here.
— Trump Administration Pushes Compliance Deadlines for DOJ's Title II Rule on Digital Accessibility. PIPC will continue to monitor the rule and advocate to ensure that the disabled community does not witness a deterioration in accessibility standards.
— Patients and People with Disabilities Urge Policymakers to Reject Importing Foreign Drug Pricing Policies. View PIPC’s response to the SOTU here. View the letters from 119 organizations to CMS commenting on the GLOBE and GUARD models here. View the blog here. Learn more about the implications of importing QALYs here.
— Roll Call Publishes Article on the Current State of AHRQ. Click here to read the full piece.
— NIH Strategic Plan for Disability Health Research FY26-FY30. View the report here.
— HEMA Finalizes Report on Economic Evaluation. View PIPC’s critique of the draft report here. View the final report here.
— HIV+HEP Submits letter Opposing GUARD Model. View the press release and letter 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.
— Health Affairs Discusses MFN Drug Pricing and QALYs. Click here to read the full article.
— Oregon PDAB Holds Forums in April/May for Patient and Disability Input. View more information here about PDAB forums. View the EACH/PIC Coalition recent report allowing respondents to explain how insurance design, cumulative health costs, and life circumstances affect their ability to access care. Get involved in telling your story here.
— Opportunity: Sign an Open Letter Rejecting Use of QALYs and Similar Measures. See details below.
— Emerging Threats in States for Use of Discriminatory Metrics. See details below.
— What Happens in Countries Using QALYs and Cost-Based Thresholds? See details below.
— ICER's QALY-Based Study Topics. See details below.
— Upcoming Events and Webinars. See details below.

​Gerry discusses his experience living with primary biliary cholangitis (PBC) and the challenges of managing the condition in Ireland. He explains the frustration of knowing that newer therapies are available in countries like the United States, while patients in Ireland face limited access.

 — Patients and People with Disabilities Urge Policymakers to Reject Importing Foreign Drug Pricing Policies. View PIPC’s response to the SOTU here. View the letters from 119 organizations to CMS commenting on the GLOBE and GUARD models here. View the blog here. Learn more about the implications of importing QALYs here.
— Roll Call Publishes Article on the Current State of AHRQ. Click here to read the full piece.
— NIH Strategic Plan for Disability Health Research FY26-FY30. View the report here.
— Louisiana Considers MFN Bill. View the PIPC letter here. View the COGI letter here.
— HEMA Finalizes Report on Economic Evaluation. View PIPC’s critique of the draft report here. View the final report here.
-- PIPC Responds to Continued Consideration of Virginia PDAB Legislation. 
Click here to read the letter.
-- HIV+HEP Submits letter Opposing GUARD Model. View the press release and letter here.
-- PQA to Hold Heart Failure Technical Expert Panel. A TEP information document provides details on the panel. See PQA's recent blog for more information.
— Devaluing Disabled Lives, International Laws Fall Short of Protecting Equal Access to Health Care for People with Disabilities as Compared to the U.S. View the new Data Mine Blog here.
— MFN would import access restrictions – hear Paula’s story. Click here to view Paula's story.
— Health Affairs Discusses MFN Drug Pricing and QALYs. Click here to read the full article.
— Oregon PDAB Holds Forums in April/May for Patient and Disability Input. View more information here about PDAB forums. View the EACH/PIC Coalition recent report allowing respondents to explain how insurance design, cumulative health costs, and life circumstances affect their ability to access care. Get involved in telling your story here.
-- Opportunity: Sign an Open Letter Rejecting Use of QALYs and Similar Measures. See details below.
— Emerging Threats in States for Use of Discriminatory Metrics. See details below.
— What Happens in Countries Using QALYs and Cost-Based Thresholds? See details below.
— ICER's QALY-Based Study Topics. See details below.
— Upcoming Events and Webinars. See details below.

In this week's edition...

— NIH Strategic Plan for Disability Health Research FY26-FY30. View the report here.
— Louisiana Considers MFN Bill. View the PIPC letter here. View the COGI letter here.
— HEMA Finalizes Report on Economic Evaluation. View PIPC’s critique of the draft report here. View the final report here.
-- PIPC Responds to Continued Consideration of Virginia PDAB Legislation. 
Click here to read the letter.
-- HIV+HEP Submits letter Opposing GUARD Model. View the press release and letter here.
-- PQA to Hold Heart Failure Technical Expert Panel. A TEP information document provides details on the panel. See PQA's recent blog for more information.
-- PIPC Responds to SOTU and Most Favored Nation. View the statement here. View the letters from 119 organizations to CMS commenting on the GLOBE and GUARD models here.
— Chairman's Corner: OHE Report Confirms Nearly All Countries Referenced in GLOBE, GUARD Models Reference QALYs. View the blog here.
— Devaluing Disabled Lives, International Laws Fall Short of Protecting Equal Access to Health Care for People with Disabilities as Compared to the U.S. View the new Data Mine Blog here.
— MFN would import access restrictions – hear Paula’s story. Click here to view Paula's story.
— Health Affairs Discusses MFN Drug Pricing and QALYs. Click here to read the full article.
— Oregon PDAB Holds Forums in April/May for Patient and Disability Input. View more information here about PDAB forums. View the EACH/PIC Coalition recent report allowing respondents to explain how insurance design, cumulative health costs, and life circumstances affect their ability to access care. Get involved in telling your story here.
-- Opportunity: Sign an Open Letter Rejecting Use of QALYs and Similar Measures. See details below.
— Emerging Threats in States for Use of Discriminatory Metrics. See details below.
— What Happens in Countries Using QALYs and Cost-Based Thresholds? See details below.
— ICER's QALY-Based Study Topics. See details below.
— Upcoming Events and Webinars. See details below.

​Gerry, who lives with primary biliary cholangitis (PBC), discusses his experience managing the condition and the difficulties he faces in obtaining newer therapies available in countries such as the United States but not in Ireland.
​

In this week's edition... 

— Louisiana Considers MFN Bill. View the PIPC letter here. View the COGI letter here.
— HEMA Finalizes Report on Economic Evaluation. View PIPC’s critique of the draft report here. View the final report here.
-- PIPC Responds to Continued Consideration of Virginia PDAB Legislation. 
Click here to read the letter.
-- HIV+HEP Submits letter Opposing GUARD Model. View the press release and letter here.
-- PQA to Hold Heart Failure Technical Expert Panel. A TEP information document provides details on the panel. See PQA's recent blog for more information.
-- PIPC Responds to SOTU and Most Favored Nation. View the statement here. View the letters from 119 organizations to CMS commenting on the GLOBE and GUARD models here.
— Chairman's Corner: OHE Report Confirms Nearly All Countries Referenced in GLOBE, GUARD Models Reference QALYs. View the blog here.
— Devaluing Disabled Lives, International Laws Fall Short of Protecting Equal Access to Health Care for People with Disabilities as Compared to the U.S. View the new Data Mine Blog here.
— MFN would import access restrictions – hear Paula’s story. Click here to view Paula's story.
— Health Affairs Discusses MFN Drug Pricing and QALYs. Click here to read the full article.
— Oregon PDAB Holds Forums in April/May for Patient and Disability Input. View more information here about PDAB forums. View the EACH/PIC Coalition recent report allowing respondents to explain how insurance design, cumulative health costs, and life circumstances affect their ability to access care. Get involved in telling your story here.
-- Opportunity: Sign an Open Letter Rejecting Use of QALYs and Similar Measures. See details below.
— Emerging Threats in States for Use of Discriminatory Metrics. See details below.
— What Happens in Countries Using QALYs and Cost-Based Thresholds? See details below.
— ICER's QALY-Based Study Topics. See details below.
— Upcoming Events and Webinars. See details below.

In this week's edition...
 
— HEMA Finalizes Report on Economic Evaluation. View PIPC’s critique of the draft report here. View the final report here.
— PIPC Responds to Continued Consideration of Virginia PDAB Legislation. 
Click here to read the letter.
— HIV+HEP Submits letter Opposing GUARD Model. View the press release and letter here.
— 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.
— 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.

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.

In this week's edition...
 
— 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.
— 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.
— Partnership for Part D Access: Action Alert. View the Action Alert HERE.
— California Patients and People with Disabilities: Attend the Patient and Consumer Forum on Health Care Affordability! The meeting will be held on March 10 at 1pm. View details here. 
— Roll Call: Bipartisan call for Congress to ban metric that devalues people with disabilities. View the Roll Call opinion here. View the Open Letter here from over 100 groups. View PIPC's one pager here. 
— Opportunity: Sign an Open Letter Rejecting Use of QALYs and Similar Measures. See details below.
— Emerging Threats in States for Use of Discriminatory Metrics. See details below.
— What Happens in Countries Using QALYs and Cost-Based Thresholds? See details below
— ICER's QALY-Based Study Topics. See details below.
— Upcoming Events and Webinars. See details below.

In this week's edition...
 
— PIPC Responds to SOTU and Most Favored Nation. View the statement here. View the letters from 119 organizations to CMS commenting on the GLOBE and GUARD models here.
— Rare Disease Toolkit for Value Our Health. The rare disease toolkit is available here. View the newest element of the toolkit, a chart outlining QALY utility values for certain rare diseases here.
— Chairman's Corner: OHE Report Confirms Nearly All Countries Referenced in GLOBE, GUARD Models Reference QALYs. View the blog here.
— Devaluing Disabled Lives, International Laws Fall Short of Protecting Equal Access to Health Care for People with Disabilities as Compared to the U.S. View the new Data Mine Blog here.
— MFN would import access restrictions – hear Paula’s story. Click here to view Paula's story.
— Health Affairs Discusses MFN Drug Pricing and QALYs. Click here to read the full article.
— Oregon PDAB Holds Forums in April/May for Patient and Disability Input. View more information here about PDAB forums. View the EACH/PIC Coalition recent report allowing respondents to explain how insurance design, cumulative health costs, and life circumstances affect their ability to access care. Get involved in telling your story here.
— Partnership for Part D Access: Action Alert. View the Action Alert HERE.
— California Patients and People with Disabilities: Attend the Patient and Consumer Forum on Health Care Affordability! The meeting will be held on March 10 at 1pm. View details here. 
— Florida Bill Would Import QALYs, Devalue People with Disabilities. Learn more about the experiences of patients and people with disabilities in other countries here. View the letter from PIPC here. View a constituent letter from The Speak Foundation here.
— Roll Call: Bipartisan call for Congress to ban metric that devalues people with disabilities. View the Roll Call opinion here. View the Open Letter here from over 100 groups. View PIPC's one pager here. 
— Opportunity: Sign an Open Letter Rejecting Use of QALYs and Similar Measures. See details below.
— Emerging Threats in States for Use of Discriminatory Metrics. See details below.
— What Happens in Countries Using QALYs and Cost-Based Thresholds? See details below.
— ICER's QALY-Based Study Topics. See details below.
— Upcoming Events and Webinars. See details below.

​PIPC 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). 

​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.  

The Partnership to Improve Patient Care issued the following statement in response to President Trump's State of the Union Address.