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  • Home
  • About
    • Mission and Priorities
    • Meet the Chairman
    • Steering Committee
    • PIPC Member List
    • Contact
  • The Issues
    • Patient Access
    • Value Our Health
    • 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 2020
    • 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 >
      • 2019
      • 2018
      • 2017
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      • 2015
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The PIPC Blog

PIPC Weekly Update: March 1, 2021

3/1/2021

 
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In This Week’s Issue:
 
1. NCD Calls on HHS to Strengthen Rights and Protections for People with Disabilities in Letter, click here to read the letter.
2. PIPC Joins 30 Leading Disability and Civil Rights Stakeholders in Letter Asking HHS to Step Up Nondiscrimination Efforts, click here to read the letter.
3. Chairman's Corner: CBO Confirms Use of Discriminatory Metrics in H.R. 3, see details below.
4. PCORI Virtual Briefing on COVID-19 & Telehealth, click here to learn more and register.
5. Emerging Threats in States for Use of Discriminatory Metrics, see details below.
6. 2021 AUCD Virtual Gala, click here to learn more and register.
7. EveryLife Foundation for Rare Diseases Report on the Economic Burden of Rare Diseases in America and the Rare on the Road Leadership Tour, see details below.
8. Vaccination Equity and Communication, see details below.
9. PCORI Seeks Nominations for Advisory Panels, click here to learn more, submit a nomination, or apply to be on an advisory panel.
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: Atopic Dermatitis, Treatments, High Cholesterol, Anemia in Chronic Kidney Disease, Lupus Nephritis, Multiple Myeloma, Alzheimer's Disease, 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.  


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PIPC Weekly Update: February 22, 2021

2/22/2021

 
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In This Week’s Issue:
 
1. PIPC Joins 30 Leading Disability and Civil Rights Stakeholders in Letter Asking HHS to Step Up Nondiscrimination Efforts, click here to read the letter.
2. Chairman's Corner: CBO Confirms Use of Discriminatory Metrics in H.R. 3, see details below.
3. PIPC Congratulates Andy Imparato on Appointment to COVID-19 Health Equity Task Force, click here to view the announcement.
4. Emerging Threats in States for Use of Discriminatory Metrics, see details below.
5. 2021 AUCD Virtual Gala, click here to learn more and register.
6. EveryLife Foundation for Rare Diseases Report on the Economic Burden of Rare Diseases in America and the Rare on the Road Leadership Tour, see details below.
7. Pharmacy Benefit Managers Push for QALYs in Medicare Despite Implications for Discrimination, see details below.
8. IVI Webinar on Principles for Good Value Assessment, click here to register and to learn more.
9. Vaccination Equity and Communication, see details below.
10. PCORI Seeks Nominations for Advisory Panels, click here to learn more, submit a nomination, or apply to be on an advisory panel.
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: Atopic Dermatitis, Treatments, High Cholesterol, Anemia in Chronic Kidney Disease, Lupus Nephritis, Multiple Myeloma, Alzheimer's Disease, 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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PIPC Weekly Update: February 16, 2021

2/16/2021

 
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In This Week’s Issue:
 
1. Chairman's Corner: CBO Confirms Use of Discriminatory Metrics in H.R. 3, see details below.
2. PIPC Congratulates Andy Imparato on Appointment to COVID-19 Health Equity Task Force, click here to view the announcement.
3. Emerging Threats in States for Use of Discriminatory Metrics, see details below.
4. Op-Ed: Washington State Bill Includes Group Known for Discriminatory Practices, click here to read the full op-ed.
5. EveryLife Foundation for Rare Diseases Report on the Economic Burden of Rare Diseases in America and the Rare on the Road Leadership Tour, see details below.
6. Op-Ed: The Biden Administration Needs to Look Beyond ICER for Value Assessment, click here to read the op-ed.
7. Pharmacy Benefit Managers Push for QALYs in Medicare Despite Implications for Discrimination, see details below.
8. IVI Webinar on Principles for Good Value Assessment, click here to register and to learn more.
9. Vaccination Equity and Communication, see details below.
10. PCORI Seeks Nominations for Advisory Panels, click here to learn more, submit a nomination, or apply to be on an advisory panel.
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: Atopic Dermatitis, Treatments, High Cholesterol, Anemia in Chronic Kidney Disease, Lupus Nephritis, Multiple Myeloma, Alzheimer's Disease, 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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Chairman's Corner: CBO Confirms Use of Discriminatory Metrics in H.R. 3

2/10/2021

 
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​The fight against disability discrimination in health care is not new. For 30+ years we have fought the use of metrics that discriminate in our healthcare system, like the Quality-Adjusted Life Year (QALY). In 2019, patients and people with disabilities, myself included, dared to question House legislation known as H.R. 3 which sought to lower the prices of drugs by referencing discriminatory reimbursement strategies from foreign governments, many of which rely on the QALY thereby restricting access to care for people with chronic conditions and disabilities. ​

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PIPC Weekly Update: February 8, 2021

2/8/2021

 
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In This Week’s Issue:
 
1. New CBO Working Paper Confirms How QALYs Used in the 2019 H.R. 3 Bill, see details below.
2. Emerging Threats in States for Use of Discriminatory Metrics, see details below.
3. Pharmacy Benefit Managers Push for QALYs in Medicare Despite Implications for Discrimination, see details below.
4. IVI Webinar on Principles for Good Value Assessment, click here to register and to learn more.
5. 60 Patient and Disability Groups Join PIPC in Comment Letter to HHS Opposing Most Favored Nations Rule, see details below.
6. COVID-19 Response for Vulnerable Patients, see details below.
7. PCORI Seeks Nominations for Advisory Panels, click here to learn more, submit a nomination, or apply to be on an advisory panel.
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: Atopic Dermatitis, Treatments, High Cholesterol, Anemia in Chronic Kidney Disease, Lupus Nephritis, Multiple Myeloma, Alzheimer's Disease, 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.  


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PIPC Weekly Update: February 1, 2021

2/1/2021

 
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In This Week’s Issue:
 
1. 60 Patient and Disability Groups Join PIPC in Comment Letter to HHS Opposing Most Favored Nations Rule, see details below.
2. Emerging Threats in States for Use of Discriminatory Metrics, see details below.
3. ICER Hosts Public Meeting for its Assessment of Treatments for High Cholesterol, see details below.
4. IVI Welcomes New Chief Scientific Officer, see details below.
5. NCD Letter on 'Most Favored Nations' Rule, click here to read the letter.
6. COVID-19 Response for Vulnerable Patients, see details below.
7. PCORI Seeks Nominations for Advisory Panels, click here to learn more, submit a nomination, or apply to be on an advisory panel.
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: Atopic Dermatitis, Treatments, High Cholesterol, Anemia in Chronic Kidney Disease, Lupus Nephritis, Multiple Myeloma, Alzheimer's Disease, 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.  


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PIPC Weekly Update: January 25, 2021

1/25/2021

 
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In This Week’s Issue:
 
1. Emerging Threats in States for Use of Discriminatory Metrics, see details below.
2. Patient-Centered Models of Hepatitis C Care, click here to read more.
3. HHS' Office of Civil Rights Releases RFI Dealing with Value Assessment, see details below.
4. NCD Letter on 'Most Favored Nations' Rule, click here to read the letter.
5. Advancing Comparative Clinical Effectiveness Research: Putting Patients and People with Disabilities at the Center of the Value Discussion, click here to view a recording of the PIPC forum.
6. Over 40 Leading Patient and Disability Groups Join PIPC Letter Opposing Most Favored Nations Rule, click here to read the letter.
7. COVID-19 Response for Vulnerable Patients, see details below.
8. PCORI Seeks Nominations for Advisory Panels, click here to learn more, submit a nomination, or apply to be on an advisory panel.
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: Atopic Dermatitis, Treatments, High Cholesterol, Anemia in Chronic Kidney Disease, Lupus Nephritis, Multiple Myeloma, Alzheimer's Disease, 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: January 19, 2021

1/19/2021

 
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In This Week’s Issue:
 
1. Over 40 Leading Patient and Disability Groups Join PIPC Letter Opposing Most Favored Nations Rule, click here to read the letter.
2. AJMC: Practical Patient-Centered Value Assessment is Needed, click here to read the article.
3. PIPC Submits Comment Letter to ICER on Draft Evidence Report for High Cholesterol Treatments, click here to read the letter.
4. PIPC and National Alliance for Hispanic Health Statements on HHS Secretary-Designate Xavier Becerra, see details below.
5. COVID-19 Response for Vulnerable Patients, see details below.
6. PCORI Seeks Nominations for Advisory Panels, click here to learn more, submit a nomination, or apply to be on an advisory panel.
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: Atopic Dermatitis, Bladder Cancer, Opioid Treatments, High Cholesterol, Anemia in Chronic Kidney Disease, Lupus Nephritis, Multiple Myeloma, Alzheimer's Disease, 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.  


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Chairman's Corner: Tennessee Medicaid Waiver Shows Callous Disregard for Patients and People with Disabilities

1/19/2021

 
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​It is hard to know where to begin in such a moment. In my lifetime, I have never seen anything like this riotous transition of power, with insurrection led by a power-hungry President and his delegates. While the world is watching insurrection, agencies under his control are pushing out rules and waivers that may not be easily undone. 

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PIPC Weekly Update: January 11, 2021

1/11/2021

 
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In This Week’s Issue:
 
1. Over 40 Leading Patient and Disability Groups Join PIPC Letter Opposing Most Favored Nations Rule, click here to read the letter.
2. AJMC: Practical Patient-Centered Value Assessment is Needed, click here to read the article.
3. PIPC Submits Comment Letter to ICER on Draft Evidence Report for High Cholesterol Treatments, click here to read the letter.
4. PIPC and National Alliance for Hispanic Health Statements on HHS Secretary-Designate Xavier Becerra, see details below.
5. COVID-19 Response for Vulnerable Patients, see details below.
6. PCORI Seeks Nominations for Advisory Panels, click here to learn more, submit a nomination, or apply to be on an advisory panel.
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: Atopic Dermatitis, Bladder Cancer, Opioid Treatments, High Cholesterol, Anemia in Chronic Kidney Disease, Lupus Nephritis, Multiple Myeloma, Alzheimer's Disease, 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.  


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PIPC Weekly Update: December 14, 2020

12/14/2020

 
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In This Week’s Issue:
 
1. SPOTS STILL AVAILABLE — PIPC Forum 2020: Putting Patients and People with Disabilities at the Center of the Value Discussion, click here to learn more and RSVP.
2. PIPC Submits Comment Letter to ICER on Draft Evidence Report for High Cholesterol Treatments, click here to read the letter.
3. PIPC and National Alliance for Hispanic Health Statements on HHS Secretary-Designate Xavier Becerra, see details below.
4. COVID-19 Response for Vulnerable Patients, see details below.
5. PIPC Statement on Behalf of People with Disabilities and Serious Chronic Conditions on MFN Importing QALYs, see details below.
6. NASHP Report on Patient-Centered Outcomes Research in Telehealth Policymaking, click here to read the report.
7. National Health Council Webinar on Multi-Criteria Decision Analysis, click here to read about and watch clips from the webinar.
8. PIPC Primer: PCORI and ICER Background, Funding, and Impact on Patient-Centered Care, click here to view the primer.
9. PCORI Seeks Nominations for Advisory Panels, click here to learn more, submit a nomination, or apply to be on an advisory panel.
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: Atopic Dermatitis, Sickle Cell Disease, Bladder Cancer, Opioid Treatments, High Cholesterol, Anemia in Chronic Kidney Disease, Lupus Nephritis, Multiple Myeloma, Alzheimer's Disease, 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.  


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PIPC Weekly Update: December 7, 2020

12/7/2020

 
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In This Week’s Issue:
 
1. PIPC and National Alliance for Hispanic Health Statements on HHS Secretary-Designate Xavier Becerra, see details below.
2. You're Invited! PIPC Forum 2020: Putting Patients and People with Disabilities at the Center of the Value Discussion, click here to learn more and RSVP.
3. COVID-19 Response for Vulnerable Patients, see details below.
4. PIPC Statement on Behalf of People with Disabilities and Serious Chronic Conditions on MFN Importing QALYs, see details below.
5. National Health Council Webinar on Multi-Criteria Decision Analysis, click here to read about and watch clips from the webinar.
6. PIPC Primer: PCORI and ICER Background, Funding, and Impact on Patient-Centered Care, click here to view the primer.
7. PCORI Seeks Nominations for Advisory Panels, click here to learn more, submit a nomination, or apply to be on an advisory panel.
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: Sickle Cell Disease, Bladder Cancer, Opioid Treatments, High Cholesterol, Anemia in Chronic Kidney Disease, Lupus Nephritis, Multiple Myeloma, Alzheimer's Disease, 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.  


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PIPC Issues Statement on Biden Choice for Health Secretary

12/7/2020

 
For Immediate Release
​December 7, 2020
Media Contact
Thayer Roberts, Deputy Director
thayer@pipcpatients.org
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Today, Partnership to Improve Patient Care (PIPC) Chairman Tony Coelho issued a statement congratulating President-elect Joe Biden for naming California Attorney General Xavier Becerra as his choice to lead the Department of Health and Human Services (HHS). 


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PIPC Weekly Update: November 30, 2020

11/30/2020

 
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In This Week’s Issue:
 
1. PIPC Statement on Behalf of People with Disabilities and Serious Chronic Conditions on MFN Importing QALYs, see details below.
2. CCD Letter to President-elect Biden's COVID-19 Advisory Board, click here to read the letter.
3. You're Invited! PIPC Forum 2020: Putting Patients and People with Disabilities at the Center of the Value Discussion, click here to learn more and RSVP.
4. More than 40 Leading Patient and Disability Groups Join PIPC Comment Letter on PCORI Outcome Principles, click here to read the letter.
5. PIPC Primer: PCORI and ICER Background, Funding, and Impact on Patient-Centered Care, click here to view the primer.
6. PIPC Releases Targeted Literature Review on Patient-Centered Cost Outcomes, read the whole paper here.
7. New IVI Issue Brief on Open-Source Modeling for Value Assessment, click here to read the issue brief.
8. PhRMA Foundation Challenge Award Program Funding Opportunity -- LETTERS OF INTENT DUE TOMORROW, see details below.
9. PCORI Seeks Nominations for Advisory Panels, click here to learn more, submit a nomination, or apply to be on an advisory panel.
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: Sickle Cell Disease, Bladder Cancer, Opioid Treatments, High Cholesterol, Anemia in Chronic Kidney Disease, Lupus Nephritis, Multiple Myeloma, Alzheimer's Disease, 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


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PIPC Statement on Behalf of People with Disabilities and Serious Chronic Conditions on MFN

11/20/2020

 
For Immediate Release
​November 20, 2020 
Media Contact
Thayer Roberts, Deputy Director
​thayer@pipcpatients.org 
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​Today, the Administration released an Interim Final Rule that would allow for the government to reference prescription drug prices established internationally, regardless of the metrics used by those countries or implications for access to care in those countries, for drugs covered under Part B of Medicare. The Partnership to Improve Patient Care and several other organizations expressed strong opposition to this concept when it was originally proposed in 2018. 


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