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  • Home
  • About
    • Mission and Priorities
    • Meet the Chairman
    • Steering Committee
    • PIPC Member List
    • Contact
  • The Issues
    • 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
  • Blog
    • PIPC Patients' Blog
    • Chairman's Corner
    • PIPC Weekly Update
    • The Data Mine
  • Newsroom
    • PIPC in the News
    • Press Releases
    • Open Letter: We Deserve a Voice
  • Events
    • PIPC Forum 2022
    • Discrimination & Health Care
    • C & GT Webinar
    • ICER COVID Webinar
    • Value Our Health Briefing
    • QALY Briefing
    • QALY Panel
    • Past Webinars >
      • ICER SCD Webinar
      • VOH Sickle Cell Webinar
      • Rare Disease Webinar
      • QALY Webinar
      • PCORI Advocacy Webinar
      • APM Webinar
      • Patient Empowerment Webinar
      • Value Assessments Briefing
    • Past PIPC Forums >
      • 2021
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The PIPC Blog

PIPC Weekly Update: January 27, 2020

1/27/2020

 
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In This Week’s Issue:
 
1. Sickle Cell Webinar and Survey, see details below.
2. Patients are Rightfully Wary of QALY-based Analyses, click here to read the article.
3. Don't Legalize Discrimination against People with Disabilities, click here to read the article.
4. ICER Discriminates against People with Rare Diseases, click here to read the article.
5. Colorado is Next to Propose Use of the Discriminatory QALY Method to Restrict Coverage, see details below.
6. An Independent Federal Agency Recognizes the Danger of QALYs, click here to read the blog post.
7. Friends of PCORI Reauthorization Congratulates PCORI's New Executive Director, click here to read the press release.
8. BPC Highlights Bipartisanship Driving PCORI’s Recent Reauthorization, see details below.
9. New National Health Council Patient Engagement Tool, click here to read more.
10. Patient-Reported Outcome Measures for Oncology Care Call for Public Comment -- Comment by January 29, click here to read more and to comment.
11. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more. 
12. ICER's QALY-Based Study Topics: Hemophilia A, Beta Thalassemia, Acute Migraine, Arthritis, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis, click here to provide patient input.
13. Upcoming Events and Webinars, see details below.
14. Medical Journal Articles, see details below.
15. AHRQ Effective Program Updates, see details below.  


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Friends of PCORI Reauthorization Coalition Congratulates Dr. Nakela Cook as Incoming Executive Director of Patient-Centered Outcomes Research Institute

1/24/2020

 
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Washington, January 16, 2020 – The Friends of PCORI Reauthorization coalition congratulates Nakela Cook, M.D., M.P.H., F.A.C.C., for her new role as incoming Executive Director of the Patient-Centered Outcomes Research Institute (PCORI), a position she will assume on April 15, 2020. Dr. Cook comes to PCORI from the National Institutes of Health’s National Heart, Lung, and Blood Institute (NHLBI), where she served as Senior Scientific Officer and Chief of Staff.


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PIPC Weekly Update: January 21, 2020

1/21/2020

 
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In This Week’s Issue:
 
1. Gunnar Esiason: Listen to Patients, Not Discriminatory Cost-Effectiveness Models, click here to read the article.
2. Colorado is Next to Propose Use of the Discriminatory QALY Method to Restrict Coverage, see details below.
3. California Embracing “Most-Favored Nation” Concept Relying on International Drug Prices Based on QALYs and Similar Metrics, see details below.
4. An Independent Federal Agency Recognizes the Danger of QALYs, click here to read the blog post.
5. Join the Headache Migraine Policy Forum and Migraine.com for a Facebook live event highlighting the patient voice on Migraine, prior to ICER’s meeting on Acute Migraine, see details below. 
6. New Survey for Sickle Cell Patients and Caregivers, click here to take the survey.
7. Upcoming Sickle Cell Disease Webinar: Patient Group Interactions with ICER, see details below.
8. Friends of PCORI Reauthorization Congratulates PCORI's New Executive Director, click here to read the press release.
9. Patient-Reported Outcome Measures for Oncology Care Call for Public Comment, click here to read more and to comment.
10. Recap of the 10th Annual PIPC Forum, click here to see more.
11. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more. 
12. ICER's QALY-Based Study Topics: Hemophilia A, Beta Thalassemia, Acute Migraine, Arthritis, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis, click here to provide patient input.
13. Upcoming Events and Webinars, see details below.
14. Medical Journal Articles, see details below.
15. AHRQ Effective Program Updates, see details below.  


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An Independent Federal Agency Recognizes the Threat of QALYs and Reference to International Prices That Rely on Them: A Summary of the NCD Report

1/13/2020

 
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The National Council on Disability (NCD)’s report to President Donald Trump on Quality-Adjusted Life Years and the Devaluation of Life with a Disability provides a timely understanding and perspective of the implications of QALYs. This report will be an essential tool for advocates, coming from an independent, nonpartisan federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities. 


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PIPC Weekly Update: January 13, 2020

1/13/2020

 
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In This Week’s Issue:
 
1. Gunnar Esiason: Listen to Patients, Not Discriminatory Cost-Effectiveness Models, click here to read the article.
2. Value Our Health Sickle Cell Disease Webinar, see details below.
3. California Embracing “Most-Favored Nation” Concept Relying on International Drug Prices Based on QALYs and Similar Metrics, see details below.
4. Recap of the 10th Annual PIPC Forum, click here to see more.
5. WSJ Editorial: Where You Want to Get Cancer, click here to read the article.
6. Congratulations PCORI on a 10-Year Reauthorization!, click here to view the full press release.
7. Video: Partnerships May Lead to Better Engagement, click here to watch the video.
8. FH Call to Action, see details below.
9. PIPC Joins Leading Patient Groups in Comment Letter on TennCare II Demonstration, click here to read the letter.
10. PIPC Submits Feedback on 'Cures 2.0' Legislation, click here to read the letter.
11. Alliance for Aging Research Letter on Current Drug Proposals, click here to read the letter.
12. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more. 
13. ICER's QALY-Based Study Topics: Hemophilia A, Beta Thalassemia, Acute Migraine, Arthritis, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis, click here to provide patient input.
14. Upcoming Events and Webinars, see details below.
15. Medical Journal Articles, see details below.
16. AHRQ Effective Program Updates, see details below.  


Read More

PIPC Weekly Update: January 6, 2020

1/6/2020

 
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In This Week’s Issue:
 
1. Congratulations PCORI on a 10-Year Reauthorization!, click here to view the full press release.
2. PIPC Joins Leading Patient Groups in Comment Letter on TennCare II Demonstration, click here to read the letter.
3. PIPC Submits Feedback on 'Cures 2.0' Legislation, click here to read the letter.
4. Alliance for Aging Research Letter on Current Drug Proposals, click here to read the letter.
5. PCORI December Board of Governors Meeting, see details below.
6. PIPC Submits Comment Letter to ICER on Draft Evidence Report for Acute Migraines, click here to read the letter
7. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more. 
8. ICER's QALY-Based Study Topics: Beta Thalassemia, Acute Migraine, Arthritis, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis, click here to provide patient input.
9. Upcoming Events and Webinars, see details below.
10. Medical Journal Articles, see details below.
11. AHRQ Effective Program Updates, see details below. 


Read More

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