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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
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The PIPC Blog

PIPC Weekly Update: November 29, 2021

11/29/2021

 
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In This Week’s Issue:
 
1. PIPC and Morning Consult Publish Poll Showing Strong Support for NCD Recommendations to Ban QALYs. Click here to view the poll results.
2. Patient Advocates Push to Overhaul Oregon Medicaid's 'Prioritized List' for Care. Click here to read the article.
3. PIPC Annual Forum: Save the Date for December 14 at 12pm! See details below.
4. Health Affairs Submits Request for Abstracts - Disability and Health. Click here to view the full release.
5. Effective Treatments for People with Chronic Diseases and Disabilities are Being Denied Based on the Discriminatory Quality-Adjusted Life Year. Click here to read the full article. 
6. Assessing the Value of Medicine for Diverse Patients: Implications of a QALY Approach for Health Disparities. Click here to read the full findings and report.
7. NCD Calls for Build Back Better to Bar QALYs Throughout Medicare and Medicaid. Click here to view the letter.
8. Arthritis Foundation and Innovation and Value Initiative Release Paper Highlighting Patient Perspectives in Rheumatoid Arthritis. Click here to read the full press release and here to view the white paper.
9. Use of QALY and Similar Metrics has Real and Tragic Implications for People with Disabilities. Click here to read the article.
10. DREDF Releases Report Responding to a Flawed ICER Analyses, Instead Finds that QALY Violates Disability Nondiscrimination Law. Click here to view the report.
11. Issue Brief: Implications of Reliance on Health Technology Assessment in the VA and TRICARE Formularies. Click here to read the full report.
12. Washington Must Help Patients Choose, Not Dictate Their Care. Click here to read the article.
13. Upcoming opportunity within the Center for Evidence and Practice Improvement at AHRQ, see details below.
14. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
15. Emerging Threats in States for Use of Discriminatory Metrics, see details below.
16. ICER's QALY-Based Study Topics: Beta Thalassemia, Chemotherapy-Induced Neutropenia, COVID-19, Type 2 Diabetes, Hypertrophic Cardiomyopathy, Asthma, Unsupported Price Increase, Fair Access: Coverage Policies. Click here to provide patient input.
17. Upcoming Events and Webinars, see details below.
18. Medical Journal Articles, see details below.
19. AHRQ Effective Program Updates, see details below


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Chairman's Corner: Recent Polling Finds Strong Support for Congress to End Use of Discriminatory Metrics Across Federal Programs

11/23/2021

 
This op-ed originally appeared in Morning Consult on November 23, 2021 
Image of PIPC Chair Tony Coelho
Ten years after the Partnership to Improve Patient Care released its first public opinion survey, our latest poll underscores how vitally important it is for lawmakers to maintain and strengthen safeguards for patients and people with disabilities in all health care policies.

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PIPC Weekly Update: November 22, 2021

11/22/2021

 
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In This Week’s Issue:
 
1. Effective Treatments for People with Chronic Diseases and Disabilities are Being Denied Based on the Discriminatory Quality-Adjusted Life Year. Click here to read the full article. 
2. NCD Calls for Build Back Better to Bar QALYs Throughout Medicare and Medicaid. Click here to view the letter.
3. In Response to Disability Rights Orgs, CVS Backs Down From Pursuing Supreme Court. Click here to view the announcement.
4. Assessing the Value of Medicine for Diverse Patients: Implications of a QALY Approach for Health Disparities. Click here to read the full findings and report.
5. Perspectives of Patients and Providers on ICER’s Assessment of Treatment for HCM. Click here to read the full release.
6. Arthritis Foundation and Innovation and Value Initiative Release Paper Highlighting Patient Perspectives in Rheumatoid Arthritis. Click here to read the full press release and here to view the white paper.
7. Use of QALY and Similar Metrics has Real and Tragic Implications for People with Disabilities. Click here to read the article.
8. DREDF Releases Report Responding to a Flawed ICER Analyses, Instead Finds that QALY Violates Disability Nondiscrimination Law. Click here to view the report.
9. Issue Brief: Implications of Reliance on Health Technology Assessment in the VA and TRICARE Formularies. Click here to read the full report.
10. Washington Must Help Patients Choose, Not Dictate Their Care. Click here to read the article.
11. Upcoming opportunity within the Center for Evidence and Practice Improvement at AHRQ, see details below.
12. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
13. Emerging Threats in States for Use of Discriminatory Metrics, see details below.
14. ICER's QALY-Based Study Topics:  ICER's QALY-Based Study Topics: Chemotherapy-Induced Neutropenia, COVID-19, Type 2 Diabetes, Hypertrophic Cardiomyopathy, Asthma, Unsupported Price Increase, Fair Access: Coverage Policies, click here to provide patient input.
15. Upcoming Events and Webinars, see details below.
16. Medical Journal Articles, see details below.
17. AHRQ Effective Program Updates, see details below.  


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PIPC Patient Blog: How Health Care Systems Do, and Do Not, Support Patients.

11/22/2021

 
Partnership to Improve Patient Care Logo
This op-ed originally appeared in The Boston Globe on November 22, 2021.

By Jenn McNary 
​

I live with my four children, three of whom have rare diseases. My sons Austin and Max both have Duchenne muscular dystrophy, and my son James has primary immune deficiency.

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Perspectives of Patients and Providers on ICER’s Assessment of Treatment for HCM

11/17/2021

 
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FOR IMMEDIATE RELEASE: November 17, 2021

On November 16, 2021, the Institute for Clinical and Economic Review (ICER) published its final evidence report for mavacamten, a new treatment for Hypertrophic Cardiomyopathy (HCM), a disease of the heart muscle affecting over 1 in 500 people. 


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PIPC Weekly Update: November 15, 2021

11/15/2021

 
Picture
In This Week’s Issue:
 
1. NCD Calls for Build Back Better to Bar QALYs Throughout Medicare and Medicaid. Click here to view the letter.
2. In Response to Disability Rights Orgs, CVS Backs Down From Pursuing Supreme Court. Click here to view the announcement.
3. Arthritis Foundation and Innovation and Value Initiative Release Paper Highlighting Patient Perspectives in Rheumatoid Arthritis. Click here to read the full press release and here to view the white paper.
4. Use of QALY and Similar Metrics has Real and Tragic Implications for People with Disabilities. Click here to read the article.
5. DREDF Releases Report Responding to a Flawed ICER Analyses, Instead Finds that QALY Violates Disability Nondiscrimination Law. Click here to view the report.
6. PCORI Invites Your Input: Science of Engagement Potential Funding Initiative. See below for details.
7. Issue Brief: Implications of Reliance on Health Technology Assessment in the VA and TRICARE Formularies. Click here to read the full report.
8. Washington Must Help Patients Choose, Not Dictate Their Care. Click here to read the article.
9. Upcoming opportunity within the Center for Evidence and Practice Improvement at AHRQ, see details below.
10. 2021 PCORI Annual Meeting Scheduled for Nov. 17-19, click here for details.
11. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
12. Emerging Threats in States for Use of Discriminatory Metrics, see details below.
13. ICER's QALY-Based Study Topics:  ICER's QALY-Based Study Topics: Chemotherapy-Induced Neutropenia, COVID-19, Type 2 Diabetes, Hypertrophic Cardiomyopathy, Asthma, Unsupported Price Increase, Fair Access: Coverage Policies, 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: November 8, 2021

11/8/2021

 
Picture
In This Week’s Issue:
 
1. Arthritis Foundation and Innovation and Value Initiative Release Paper Highlighting Patient Perspectives in Rheumatoid Arthritis. Click here to read the full press release and here to view the white paper.
2. Use of QALY and Similar Metrics has Real and Tragic Implications for People with Disabilities. Click here to read the article.
3. Disability Rights Orgs Urge Supreme Court to Uphold Protections Against Disability Discrimination. Click here to view the press release.
4. The Key to Addressing Rising Health Care Costs is Patient-Centered Evidence. Click here to read the opinion piece.
5. DREDF Releases Report Responding to a Flawed ICER Analyses, Instead Finds that QALY Violates Disability Nondiscrimination Law. Click here to view the report.
6. PCORI Invites Your Input: Science of Engagement Potential Funding Initiative. See below for details.
7. Issue Brief: Implications of Reliance on Health Technology Assessment in the VA and TRICARE Formularies. Click here to read the full report.
8. Washington Must Help Patients Choose, Not Dictate Their Care. Click here to read the article.
9. PIPC Submits Submits Comments on ICER Draft Evidence Report for Severe Asthma. Click here to read the letter.
10. Upcoming opportunity within the Center for Evidence and Practice Improvement at AHRQ, see details below.
11. 2021 PCORI Annual Meeting Scheduled for Nov. 17-19, click here for details.
12. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
13. Emerging Threats in States for Use of Discriminatory Metrics, see details below.
14. ICER's QALY-Based Study Topics: Hypertrophic Cardiomyopathy, Myasthenia Gravis, Atopic Dermatitis, Alzheimer's Disease, Asthma, Type 2 Diabetes, click here to provide patient input.
15. Upcoming Events and Webinars, see details below.
16. Medical Journal Articles, see details below.
17. AHRQ Effective Program Updates, see details below.  


Read More

PIPC Weekly Update: November 1, 2021

11/1/2021

 
Picture
In This Week’s Issue:
 
1. Disability Rights Orgs Urge Supreme Court to Uphold Protections Against Disability Discrimination. Click here to view the press release.
2. The Key to Addressing Rising Health Care Costs is Patient-Centered Evidence. Click here to read the opinion piece.
3. DREDF Releases Report Responding to a Flawed ICER Analyses, Instead Finds that QALY Violates Disability Nondiscrimination Law. Click here to view the report.
4. PCORI Invites Your Input: Science of Engagement Potential Funding Initiative. See below for details.
5. Issue Brief: Implications of Reliance on Health Technology Assessment in the VA and TRICARE Formularies. Click here to read the full report.
6. Washington Must Help Patients Choose, Not Dictate Their Care. Click here to read the article.
7. DREDF Comments on Tenncare III and Impact on People with Disabilities. Click here to view the comments.
8. PIPC Submits Submits Comments on ICER Draft Evidence Report for Severe Asthma. Click here to read the letter.
9. Upcoming opportunity within the Center for Evidence and Practice Improvement at AHRQ, see details below.
10. 2021 PCORI Annual Meeting Scheduled for Nov. 17-19, click here for details.
11. PCORI Transcript of Sept. 27-28 Meeting, see links to transcripts below.
12. International News: What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage? See below for more.
13. Emerging Threats in States for Use of Discriminatory Metrics, see details below.
14. ICER's QALY-Based Study Topics: Hypertrophic Cardiomyopathy, Myasthenia Gravis, Atopic Dermatitis, Alzheimer's Disease, Asthma, Type 2 Diabetes, click here to provide patient input.
15. Upcoming Events and Webinars, see details below.
16. Medical Journal Articles, see details below.
17. AHRQ Effective Program Updates, see details below.  


Read More

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