Partnership to Improve Patient Care

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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
  • News
    • Press Releases
    • 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
      • QALY Webinar
      • PCORI Advocacy Webinar
      • APM Webinar
      • Patient Empowerment Webinar
      • Value Assessments Briefing
    • Past PIPC Forums >
      • 2023
      • 2022
      • 2021
      • 2020
      • 2019
      • 2018
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      • 2015
      • 2014
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The PIPC Blog

PIPC Weekly Update: May 26, 2020

5/26/2020

 
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In This Week’s Issue:
 
1. Key Issues with ICER's Report on COVID-19, click here to read PIPC's one-pager.
2. Beware Undervaluing COVID-19 Drugs, click here to read the op-ed.
3. New Survey: Majority of Americans Don't Know Healthcare Rationing Takes Place in Their Own Backyard, click here to read more.
4. Over 60 Leading Patient and Disability Groups Join PIPC in Letter to New ICER VP for Patient Engagement, click here to read the letter.
5. ICER’s Cost Model Is Not Only Wrong It’s Also Dangerous, click here to read the article.
6. Gunnar Esiason: A Flawed Economic Model Should Not Be Used to Deny Access to a Miracle Medication, click here to read the op-ed.
7. In Letter to PCORI, PIPC Offers Input on Next 10 Years, click here to read the letter.
8. ICER Report Adds Insult to Injury for Cystic Fibrosis Patients, click here to read the blog.
9. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
10. ICER's QALY-Based Study Topics: Hemophilia A, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis, Bladder Cancer, Opioid Treatments, click here to provide patient input.
11. Upcoming Events and Webinars, see details below.
12. Medical Journal Articles, see details below.
13. AHRQ Effective Program Updates, see details below.  


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PIPC Weekly Update: May 18, 2020

5/18/2020

 
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In This Week’s Issue:
 
1. Over 60 Leading Patient and Disability Groups Join PIPC in Letter to New ICER VP for Patient Engagement, click here to read the letter.
2. ICER’s Cost Model Is Not Only Wrong It’s Also Dangerous, click here to read the article.
3. Gunnar Esiason: A Flawed Economic Model Should Not Be Used to Deny Access to a Miracle Medication, click here to read the op-ed.
4. IVI Announces Patient Advisory Council, click here to read more.
5. In Letter to PCORI, PIPC Offers Input on Next 10 Years, click here to read the letter.
6. ICER Report Adds Insult to Injury for Cystic Fibrosis Patients, click here to read the blog.
7. APPLICATION DEADLINE FRIDAY: PCORI Engagement Awards to Address COVID-19, click here to learn more.
8. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
9. ICER's QALY-Based Study Topics: Hemophilia A, Acute Migraine, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis, Bladder Cancer, Opioid Treatments, click here to provide patient input.
10. Upcoming Events and Webinars, see details below.
11. Medical Journal Articles, see details below.
12. AHRQ Effective Program Updates, see details below.  


Read More

PIPC Weekly Update: May 11, 2020

5/11/2020

 
Picture
In This Week’s Issue:
 
1. Gunnar Esiason: A Flawed Economic Model Should Not Be Used to Deny Access to a Miracle Medication, click here to read the op-ed.
2. IVI Announces Patient Advisory Council, click here to read more.
3. In Letter to PCORI, PIPC Offers Input on Next 10 Years, click here to read the letter.
4. ICER Report Adds Insult to Injury for Cystic Fibrosis Patients, click here to read the blog.
5. Ruderman Foundation White Paper: Fair Resource Allocation During the COVID-19 Pandemic, click here to read the paper.
6. LA Times Editorial: Take Disability, QALYs Out of Equation for COVID-19 Care, click here to read the editorial.
7. PCORI Engagement Awards to Address COVID-19, click here to learn more.
8. PIPC, Other Disability and Patient Organizations Call for Further Guidance on COVID-19 Patient Non-Discrimination, click here to read the letter.
9. DUE WEDNESDAY: Request for Nominations for the Board of Governors of the Patient-Centered Outcomes Research Institute, click here to read the notice and to submit a nomination.
10. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
11. ICER's QALY-Based Study Topics: Hemophilia A, Acute Migraine, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis, Bladder Cancer, Opioid Treatments, click here to provide patient input.
12. Upcoming Events and Webinars, see details below.
13. Medical Journal Articles, see details below.
14. AHRQ Effective Program Updates, see details below.  


Read More

PIPC Weekly Update: May 4, 2020

5/4/2020

 
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​In This Week’s Issue:
 
1. In Letter to PCORI, PIPC Offers Input on Next 10 Years, click here to read the letter.
2. ICER Report Adds Insult to Injury for Cystic Fibrosis Patients, click here to read the blog.
3. Ruderman Foundation White Paper: Fair Resource Allocation During the COVID-19 Pandemic, click here to read the paper.
4. LA Times Editorial: Take Disability, QALYs Out of Equation for COVID-19 Care, click here to read the editorial.
5. PCORI Engagement Awards to Address COVID-19, click here to learn more.
6. Cancer Organizations Call on States to Protect Cancer Patients Amid COVID-19, click here to read the letter.
7. PIPC, Other Disability and Patient Organizations Call for Further Guidance on COVID-19 Patient Non-Discrimination, click here to read the letter.
8. Request for Nominations for the Board of Governors of the Patient-Centered Outcomes Research Institute, click here to read the notice and to submit a nomination.
9. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
10. ICER's QALY-Based Study Topics: Hemophilia A, Acute Migraine, Sickle Cell Disease, Ulcerative Colitis, Cystic Fibrosis, Bladder Cancer, Opioid Treatments, click here to provide patient input.
11. Upcoming Events and Webinars, see details below.
12. Medical Journal Articles, see details below.
13. AHRQ Effective Program Updates, see details below. 


Read More

PIPC Patient Blog: ICER Report Adds Insult to Injury for Cystic Fibrosis Patients

5/1/2020

 
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​By Siri Vaeth, MSW

My daughter, Tess, lives with cystic fibrosis (CF). She is twenty-five years old. Not too long ago that would have been unimaginable for a CF patient. I’m so grateful for the medical advances that allow my child to have a full life.


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