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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
  • 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 >
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The PIPC Blog

Statement on H.R. 485: The Protecting Health Care for All Patients Act

3/23/2023

 
For Immediate Release
March 23, 2023

PIPC Chairman Tony Coelho issued the following statement on H.R. 485, the Protecting Health Care for All Patients Act. 

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Statement Supporting the Protecting Health Care for All Patients Act

1/30/2023

 
For Immediate Release
January 30, 2023
Press Contact
Thayer Roberts (thayer@pipcpatients.org)
The Protecting Health Care for All Patients Act represents an important step forward to strengthen and extend existing protections against use of the quality-adjusted life year (QALY) and similar metrics to all federal programs. The bill advances recent recommendations of the National Council on Disability and reflects longstanding, bipartisan concern with use of QALY standards in health care policy.

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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 Chairman Tony Coelho Applauds HHS Report Acknowledgment of Equity and Access Implications of Discriminatory Metrics Such as QALYs and Urges Policymakers to Avoid One-Size-Fits-All Value Judgements

9/10/2021

 
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​In a report from the U.S. Department of Health and Human Services (HHS) to the White House laying out a “Comprehensive Plan for Addressing High Drug Prices,” HHS acknowledged the equity implications of certain methodologies, such as quality-adjusted-life-years (QALYs), for people of all ages with disabilities and chronic conditions and stated that drug pricing reforms should avoid utilization of methodologies that adversely impact access to needed medications for vulnerable populations.  


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Advocates for People with Disabilities, Chronic Conditions and Older Adults Request Policymakers Reject Health Policies That Discriminate

4/14/2021

 
PictureAmerican Association of People with Disabilities
This press release was first issued by the American Association of People with Disabilities (AAPD) on April 14, 2021. 

Washington, D.C. – We are pleased to join the more than 90 organizations that signed a letter calling on policymakers to reject health policies that discriminate. Every life is valuable. We strongly urge policymakers to reject policies that discriminate against people with disabilities and chronic conditions, older adults, and reinforce health inequities.


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PIPC Joins Over 90 Patient and Disability Groups Urging Policymakers to Reject Policies That Discriminate

4/14/2021

 
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PIPC is proud to have joined over 90 organizations in an open letter calling on policymakers to reject health policies that discriminate. Every life is valuable. We strongly urge policymakers to reject policies that discriminate against people with disabilities and chronic conditions, older adults, and reinforce health inequities


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Patient and Disability Stakeholders Applaud the PCORI Board for Approving Principles for Considering the Full Range of Outcomes Data

3/16/2021

 
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For Immediate Release
March 16, 2021
​Today, patients and people with disabilities applauded that the Patient-Centered Outcomes Research Institute (PCORI) Board of Governors approved principles guiding its work to consider the full range of outcomes data in its research

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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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PIPC Chairman Tony Coelho Congratulates President-elect Biden

11/12/2020

 
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As Chairman of the Partnership to Improve Patient Care (PIPC), I want to express my sincere congratulations to President-elect Joe Biden. Patients and people with disabilities are eager and excited to work with the President-elect and his team on policies that will improve their health and quality of life. 


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PIPC Statement on MFN Importing QALYs to the U.S.

9/13/2020

 
MEDIA ADVISORY
September 13, 2020 
Contact: Shea McCarthy
Phone: (202) 285-3866
​Email: ​smccarthy@thornrun.com
​Today, the Administration released the text of an Executive Order allowing the Department of Health and Human Services (HHS) to rely on foreign governments to set prices for drugs covered under Medicare, regardless of the metrics used by those countries or implications for access to care for patients. The Partnership to Improve Patient Care (PIPC), along with other prominent patient and disability advocacy groups, has consistently expressed strong opposition to this concept, as it will have the impact of limiting and delaying access to needed treatments for Americans. 

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PIPC Statement on the President’s Executive Orders on Prescription Drug Pricing

7/24/2020

 
MEDIA ADVISORY                                            
July 24, 2020
Contact: Shea McCarthy
Phone: (202) 285-3866
​Email: ​smccarthy@thornrun.com
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​Today, the Administration released its anticipated Executive Order related to Medicare. Among its provisions, it 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 Medicare Part B. 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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Statement on Behalf Leading Patient and Disability Groups on Massachusetts Health Policy Commission Final Prescription Drug Regulations

2/6/2020

 
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​On February 5, 2020, the Massachusetts Health Policy Commission (HPC) finalized regulations outlining their approach to assessing the value of prescription drugs. As groups representing patients and people with disabilities, the affordability of health care is a significant priority. That being said, HPC’s regulations put patient access at risk, and may ultimately do more harm than good for patients. They set the stage for third-party analyses by groups like the Institute for Clinical and Economic Review (ICER) and rely on international reference pricing, which relies on QALY-based assessments in determining the “value” of treatments. 


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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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Friends of PCORI Reauthorization Coalition Commends Congress for Extending Funding for Patient-Centered Outcomes Research Institute

12/20/2019

 
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​The Friends of PCORI Reauthorization coalition applauds the action taken today to extend funding for the Patient-Centered Outcomes Research Institute (PCORI) for an additional ten years. PCORI is an independent organization authorized by the “Patient Protection and Affordable Care Act of 2010” to study how different medications and treatments compare, so patients and their caregivers have the information they need to choose the health care and treatment options that are best for them. The passage of H.R. 1865 shows Congress’ commitment to ensure continued support for critical research helping patients and providers make evidence-based health care decisions that work best for them.


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Leading Patient and Disability Advocates Pan ICER’s Flawed Value Assessment Framework

6/11/2019

 
FOR IMMEDIATE RELEASE
June 11, 2019 
Contact: Shea McCarthy
Phone: (202) 688-0227
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​Washington, D.C. – Today, the Partnership to Improve Patient Care and 37 leading patient and disability organizations submitted a comment letter to the Institute for Clinical and Economic Review (ICER) on their 2020 Value Assessment Framework. Given the serious concerns that stakeholders have raised with ICER’s flawed methodology, the letter urges ICER to put patients and people with disabilities at the center of all assessments to ensure they: (1) are transparent, (2) align with innovative leaders in the field, and (3) do not rely on the use of quality-adjusted life years (QALYs) and other discriminatory metrics that treat patients as averages. 


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