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  • Home
  • About
    • Mission and Priorities
    • Meet the Chairman
    • Steering Committee
    • PIPC Member List
    • Contact
  • The Issues
    • Action Center
    • Value Our Health
    • International
    • Where We Stand
    • Value Assessment Frameworks
    • Engaging Patients in Value-Based Payment
    • Patient-Centeredness in Research
  • Resources
    • Advocacy
    • Letters and Comments
    • PCORI Meeting Transcripts
    • Polling
    • Roundtables
    • White Papers
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    • PIPC in the News
    • PIPC Weekly Update
    • PIPC Patients' Blog
    • Chairman's Corner
    • The Data Mine
  • Events
    • Nevada AB 259
    • QALY Panel
    • QALY Briefing
    • Past Webinars >
      • MFN/IPI Webinar 2025
      • Discrimination & Health Care
      • C & GT Webinar
      • ICER COVID Webinar
      • Value Our Health Briefing
      • ICER SCD Webinar
      • VOH Sickle Cell Webinar
      • Rare Disease Webinar
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The PIPC Blog

PIPC Weekly Update: February 26, 2024

2/26/2024

 
In this week's edition...
 
— Oregon Senate and House Committees on Health Pass SB 1508. See details below.
— Trends in Patient Access to, and Utilization of, Prescribed PCSK9 Inhibitors. Click here to view more information about the study.
— Chairman Tony Coelho's Statement on Final Passage of H.R. 485. See details below.
— PIPC Patient Blog: Access Delayed is Access Denied. Click here to read the blog.
— PCORI Seeks Nominations for Advisory Panels. Click here to learn more, to apply to serve on an advisory panel, or submit a nomination.
— 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.
— AHRQ Effective Program Updates. See details below.

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PIPC Chair Testifies Before Oregon House Committee on SB 1508

2/22/2024

 
PIPC Chair Tony Coelho
​On February 21, 2024, PIPC Chairman Tony Coelho testified to the Oregon House Committee on Behavioral Health and Health Care supporting SB 1508.

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PIPC Weekly Update: February 20, 2024

2/20/2024

 
In this week's edition...
 
— PIPC Patient Blog: Access Delayed is Access Denied. Click here to read the blog.
— Chairman Tony Coelho's Statement on Final Passage of H.R. 485. See details below.
— Oregon Senate Committee on Health Passes SB 1508. See details below.
— PIPC Urges Maryland Legislature to Reject QALYs. Click here to read the letters. 
— PCORI Seeks Nominations for Advisory Panels. Click here to learn more, to apply to serve on an advisory panel, or submit a nomination.
— 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.
— AHRQ Effective Program Updates. See details below.

Read More

PIPC Weekly Update: February 12, 2024

2/12/2024

 
In this week's edition...
 
— Chairman Tony Coelho's Statement on Final Passage of H.R. 485. See details below.
— PIPC Patient Blog: Access Delayed is Access Denied. Click here to read the blog.
— PIPC Chairman Tony Coelho Testimony to Oregon Senate in Support of SB 1508. See details below.
— PIPC Urges Maryland Legislature to Reject QALYs. Click here to read the letters. 
— PCORI Seeks Nominations for Advisory Panels. Click here to learn more, to apply to serve on an advisory panel, or submit a nomination.
— 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.
— AHRQ Effective Program Updates. See details below.

Read More

PIPC Chairman Tony Coelho Testimony to Oregon Senate in Support of SB 1508

2/9/2024

 
PIPC Chairman Tony Coelho
​PIPC Chairman Tony Coelho was set to testify on February 7, 2024 to the Oregon Senate Committee on Health Care supporting SB 1508. He provided this testimony in writing as the committee voted to advance the bill.

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Chairman's Corner: PIPC Chairman Tony Coelho's Statement on Final Passage of H.R. 485

2/8/2024

 
Picture
​In response to the final passage of H.R. 485, PIPC Chairman Tony Coelho is pleased to share this statement.

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PIPC Patient Blog: Access Delayed is Access Denied

2/7/2024

 
Beth Vanstone
By Beth Vanstone, Canadian Cystic Fibrosis Patient Advocate, Rare Disease Drug Access Advocate

As politicians point to countries like Canada as models for how they reimburse and cover lifesaving therapies, here is my response as a Canadian.

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PIPC Weekly Update: February 5, 2024

2/5/2024

 
— Patient and Disability Advocates Support H.R. 485 Extending Medicare’s Ban on QALYs and Similar Measures. See details below.
— Webinar Feb. 22: New Report on Proposed Census Changes to Disability Questions titled "No Evidence to Proceed." See details below.
— Health Affairs: Why US Medicare Drug Price Assessments And Negotiations Should Not Use Canada As A Model. Click here to read the article
— PIPC Responds to Cassidy RFI on Access to Cell and Gene Therapies. Click here to read the letter.
— Ban Quality-Adjusted Life-Years in Oregon. Click here to sign the petition. 
— PCORI Seeks Nominations for Advisory Panels. Click here to learn more, to apply to serve on an advisory panel, or submit a nomination.
— 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.
— AHRQ Effective Program Updates. See details below.

Read More

Statement of Support for H.R. 485

2/5/2024

 
​People with disabilities, patients and older adults strongly support H.R. 485, the Protecting Health Care for All Patients Act. This legislation would extend to programs like Medicaid the existing protections in the Medicare program against use of QALYs and similar measures that have been supported by Congressional Democrats in landmark health care bills such as the Affordable Care Act and the Inflation Reduction Act. It’s provisions are consistent with the recommendations of the National Council on Disability, an independent federal agency advising Congress on disability policy. It is well documented that use of such measures results in barriers to care that come from assumptions that people with disabilities have a low quality of life and are not worthy of treatment. Therefore, we urge Democrats and Republicans to come together in an act of bipartisanship to pass the bill and to avoid any amendments that would weaken the ACA and IRA protections against the use of QALYs and similar measures.

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