PIPC submitted comments to CMS making the following recommendations in response to its proposed rule governing the program. 

• CMS should avoid one-size fits all value metrics such as the QALY.
• CMS should develop a formalized process to ensure continuous, robust engagement of patients and people with disabilities at multiple levels.
• Where high-quality patient data exists, like FDA Voice of the Patient Reports, CMS should use it. 
• Using patient insights, CMS should clearly communicate how it intends to use the input it receives, and how that input is reflected in the final negotiated prices.
• CMS should solicit input from a variety of patients who rely on the treatments in question, including those in rural areas to ensure representation of the diversity of the patients and communities affected by the topic.
• CMS should ensure that opportunities for patient engagement are accessible.
• To gauge both successes and challenges, CMS should establish a structured process for continuous review and assessment of its engagement strategy and its holistic processes. 

​Read the full letter below: 

CMS’s public explanations leave patients with questions about what evidence shaped negotiated prices and how their input was considered. 

In this week's edition...
 
— QALYs Devalue the Lives of People with Disabilities. View examples of QALY health utilities that assign a lower value to the lives of people with disabilities here.
— MFN Policies Limit Patients’ Ability to Access Treatments that Work Best for Them. We must not import access restrictions that devalue people living with rare diseases.
— Disability Matters with Joyce Bender: PIPC Chairman Tony Coelho and Rep. Steny Hoyer. Listen to the podcast here.
— PCORI Annual Meeting October 19-20. Click here to register.
— Senator Collins Speaks Up Against Importing QALYs to the U.S., Committee Advances Charlotte’s Bill. The video is available on LinkedIn here and on X here. We encourage others to share PIPC’s social media thanking the Senator on LinkedIn here and on X here. Hear Charlotte herself describe this terrific progress here.
— AMA Opposes Policies Setting Prices by Exclusive Reference to Other Countries or Averages. View the resolution here.
— Tell Congress to Oppose Most Favored Nation Policies Importing QALYs to the U.S. Learn more here. Reach out to your Member of Congress here. 
— Most-Favored-Nation (MFN) Drug Pricing: You Can’t Import European Prices Without Importing European Tradeoffs. View and share 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.
— Former Members of Congress and Physicians Call Out How MFN Devalues Disabled Lives. View the article here.
— Opportunity: Sign an Open Letter Rejecting Use of QALYs and Similar Measures. See details below.
— The Disability Community Voices Concern About Recent DOJ Memorandum. Learn more HERE and HERE.
— 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...
 
— MFN Policies Limit Patients’ Ability to Access Treatments that Work Best for Them. We must not import access restrictions that devalue people living with rare diseases.
— Disability Matters with Joyce Bender: PIPC Chairman Tony Coelho and Rep. Steny Hoyer. Listen to the podcast here.
— PCORI Annual Meeting October 19-20. Click here to register.
— Senator Collins Speaks Up Against Importing QALYs to the U.S., Committee Advances Charlotte’s Bill. The video is available on LinkedIn here and on X here. We encourage others to share PIPC’s social media thanking the Senator on LinkedIn here and on X here. Hear Charlotte herself describe this terrific progress here.
— Atlantic: How Britain Became As Poor As Mississippi. View the article here.
— AMA Opposes Policies Setting Prices by Exclusive Reference to Other Countries or Averages. View the resolution here.
— Tell Congress to Oppose Most Favored Nation Policies Importing QALYs to the U.S. Learn more here. Reach out to your Member of Congress here. 
— Most-Favored-Nation (MFN) Drug Pricing: You Can’t Import European Prices Without Importing European Tradeoffs. View and share 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.
— Former Members of Congress and Physicians Call Out How MFN Devalues Disabled Lives. View the article here.
— Opportunity: Sign an Open Letter Rejecting Use of QALYs and Similar Measures. See details below.
— The Disability Community Voices Concern About Recent DOJ Memorandum. Learn more HERE and HERE.
— 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

Devina, a mother of a child with Cystic Fibrosis, explains her struggle to gain access to treatments that are not available in Canada, but are in the United States and elsewhere. 

In this week's edition...
 
— Advocates Request Changes to the VA National Formulary Act of 2025. View the letter here.
— Senator Collins Speaks Up Against Importing QALYs to the U.S., Committee Advances Charlotte’s Bill. The video is available on LinkedIn here and on X here. We encourage others to share PIPC’s social media thanking the Senator on LinkedIn here and on X here. Hear Charlotte herself describe this terrific progress here.
— The Disability Community Voices Concern About Recent DOJ Memorandum. Learn more HERE and HERE.
— AMA Opposes Policies Setting Prices by Exclusive Reference to Other Countries or Averages. View the resolution here.
— Tell Congress to Oppose Most Favored Nation Policies Importing QALYs to the U.S. Learn more here. Reach out to your Member of Congress here. 
— MFN Policies Devalue Patients, Limiting Treatments for People like Gerry. We must not import access restrictions that devalue people living with chronic illnesses.
— Most-Favored-Nation (MFN) Drug Pricing: You Can’t Import European Prices Without Importing European Tradeoffs. View and share 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.
— Former Members of Congress and Physicians Call Out How MFN Devalues Disabled Lives. View the article 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...
 
— Advocates Request Changes to the VA National Formulary Act of 2025. View the letter here.
— Senator Collins Speaks Up Against Importing QALYs to the U.S., Committee Advances Charlotte’s Bill. The video is available on LinkedIn here and on X here. We encourage others to share PIPC’s social media thanking the Senator on LinkedIn here and on X here. Hear Charlotte herself describe this terrific progress here.
— DOJ Attacks the Americans with Disabilities Act and Section 504 Integration Mandate, Impact on People with Disabilities, Rare Diseases and Older Adults Massive. Learn more HERE and HERE.
— AMA Opposes Policies Setting Prices by Exclusive Reference to Other Countries or Averages. View the resolution here.
— Tell Congress to Oppose Most Favored Nation Policies Importing QALYs to the U.S. Learn more here. Reach out to your Member of Congress here. 
— Ohioans Oppose MFN Drug Pricing Due to Risks for Rural and Disability Communities. Click here to view Margaret Ann Ruhl's piece and click here to view Pandora Shaw-Dupras' piece.
— MFN Policies Devalue Patients, Limiting Treatments for People like Gerry. We must not import access restrictions that devalue people living with chronic illnesses.
— Most-Favored-Nation (MFN) Drug Pricing: You Can’t Import European Prices Without Importing European Tradeoffs. View and share 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.
— Former Members of Congress and Physicians Call Out How MFN Devalues Disabled Lives. View the article 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.

— Senator Collins Speaks Up Against Importing QALYs to the U.S., Committee Advances Charlotte’s Bill. The video is available on LinkedIn here and on X here. We encourage others to share PIPC’s social media thanking the Senator on LinkedIn here and on X here. Hear Charlotte herself describe this terrific progress here.
— DOJ Attacks the Americans with Disabilities Act and Section 504 Integration Mandate, Impact on People with Disabilities, Rare Diseases and Older Adults Massive. Learn more HERE and HERE.
— AMA Opposes Policies Setting Prices by Exclusive Reference to Other Countries or Averages. View the resolution here.
— Tell Congress to Oppose Most Favored Nation Policies Importing QALYs to the U.S. Learn more here. Reach out to your Member of Congress here. 
— Ohioans Oppose MFN Drug Pricing Due to Risks for Rural and Disability Communities. Click here to view Margaret Ann Ruhl's piece and click here to view Pandora Shaw-Dupras' piece.
— MFN Policies Devalue Patients, Limiting Treatments for People like Gerry. We must not import access restrictions that devalue people living with chronic illnesses.
— Most-Favored-Nation (MFN) Drug Pricing: You Can’t Import European Prices Without Importing European Tradeoffs. View and share HERE.
— 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.
— 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.
— 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...
 
— AMA Opposes Policies Setting Prices by Exclusive Reference to Other Countries or Averages. View the resolution here.
— Tell Congress to Oppose Most Favored Nation Policies Importing QALYs to the U.S. Learn more here. Reach out to your Member of Congress here. 
— States Attack Section 504 of the Rehabilitation Act and the Integration Mandate, Impact on People with Disabilities, Rare Diseases and Older Adults Massive. View the Arc of Indiana press release HERE. Learn more HERE about how state advocates can push back.
— Ohioans Oppose MFN Drug Pricing Due to Risks for Rural and Disability Communities. Click here to view Margaret Ann Ruhl's piece and click here to view Pandora Shaw-Dupras' piece.
— MFN Policies Devalue Patients, Limiting Treatments for People like Gerry. We must not import access restrictions that devalue people living with chronic illnesses.
— Most-Favored-Nation (MFN) Drug Pricing: You Can’t Import European Prices Without Importing European Tradeoffs. View and share HERE.
— 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.
— 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.
— 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...
 
— House Appropriations Bill Seeks to Rescind PCORI Funds. View section 530 here. Learn more about PCORI here.
— Tell Congress to Oppose Most Favored Nation Policies Importing QALYs to the U.S. Learn more here. Reach out to your Member of Congress here. 
— States Attack Section 504 of the Rehabilitation Act and the Integration Mandate, Impact on People with Disabilities, Rare Diseases and Older Adults Massive. View the Arc of Indiana press release HERE. Learn more HERE about how state advocates can push back.
— Ohioans Oppose MFN Drug Pricing Due to Risks for Rural and Disability Communities. Click here to view Margaret Ann Ruhl's piece and click here to view Pandora Shaw-Dupras' piece.
— MFN Policies Devalue Patients, Limiting Treatments for People like Gerry. We must not import access restrictions that devalue people living with chronic illnesses.
— Most-Favored-Nation (MFN) Drug Pricing: You Can’t Import European Prices Without Importing European Tradeoffs. View and share HERE.
— 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.
— 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.
— 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 Chairman Tony Coelho Publishes Statement on VA PDAB Bills. PIPC Chairman Tony Coelho issued a statement on the vetoes of ​HB 483 and SB 271 in Virginia.
— Ohioans Oppose MFN Drug Pricing Due to Risks for Rural and Disability Communities. Click here to view Margaret Ann Ruhl's piece and click here to view Pandora Shaw-Dupras' piece.
— MFN Policies Devalue Patients, Limiting Treatments for People like Gerry. We must not import access restrictions that devalue people living with chronic illnesses.
— 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.

PIPC Chairman Tony Coelho issued the following statement on the vetoes of ​HB 483 and SB 271 in Virginia. 

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.