In this week's edition...
 
— 86 Organizations Comment to Senate Finance Committee, Oppose Importing QALYs, Urge Decisions Centered on Patients and People with Disabilities. View the RFI comments here.
— PIPC Conducts New Research on Use of Evidence Centered on Patient Experience in Medicare Drug Price Negotiation, Submits IPAY 2028 Comments to CMS. View PIPC's Data Mine Blog analysis here and the IPAY 2028 comments to CMS here.
— As the ADA Turns 36, PIPC Highlights Work to be Done. Learn More About How the QALY Devalues Disabled Lives. 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.
— 100 Members of Congress call on DOJ To Rescind Olmstead Memo. View the letter here. View a message from Senator Kirsten Gillibrand here.
— ICHOM Seeking Experts in Cataracts, Plus Annual Conference December 7-9. Register 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. 
— 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.
— 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 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.