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
      • 2017
      • 2016
      • 2015
      • 2014
      • 2013
      • 2012
      • 2011
      • 2010

Reject Health Policies that Devalue and Ration Care for Any American
Advance Alternatives that Value Patients and People with Disabilities 

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    What is Your Life Worth Around the World? 

    CLICK HERE TO VIEW VALUE OUR HEALTH'S MAP
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    Canada’s Reliance on Discriminatory Value Assessments Forces Patients to Get Worse to Get Better
    ​When it is “Cost Effective"

    Click Here Hear Laura's Story
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    ​Because Brett was Born in Canada, He Cannot Access the Same Treatments as his Brother​

    Click Here to Hear Brett's Story
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    Even When Proven Effective, the United Kingdom Denies Care, Fails to Value People Living with Chronic Disease

    Click Here to Hear Ailsa's Story
Click here to read the open
letter to policymakers
Click here to join the 80+
organizations and sign On
Since its founding, the Partnership to Improve Patient Care (PIPC) has been at the forefront of the fight to put patients first in our nation’s healthcare system and ensure individual patients with different health care needs – including people with disabilities and older adults – are not ignored and devalued. All lives are valuable, and our health care policy should adhere to this fundamental American belief. We strongly urge policymakers to reject policies that would devalue and ration care for any American whether modeled after foreign or domestic value assessment methodologies.  

As an organization representing patients, people with disabilities, older adults, healthcare professionals, children and family caregivers, we strongly oppose policies that rely on discriminatory, one-size-fits-all value metrics such as the Quality-Adjusted Life Year, or QALY. The reason is simple: value assessments that use QALYs or similar metrics don’t just value treatment. They assign a financial value to the group of people for whom a given treatment is intended based on their health status. In practice, treatments for a group of people that are sicker, older, or disabled, may be assessed as less valuable. Health policies based on these methods justify public and private payers restricting access by not covering them or using benefit management techniques that effectively ration access. Instead, policies should drive equal access to quality healthcare for every American.
 
Therefore, we are eager to work productively with policymakers to improve the health of Americans. We agree people should not be denied or face barriers to medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative “worth” based on the presence or absence of disabilities or age. There is a long history of robust, bipartisan opposition to QALY-based policies in Medicare and Medicaid that underscores America’s core belief that the lives of individuals with disabilities, older adults and infants are worth just as much as any other person.
 
A wide range of organizations and leaders across the political spectrum and health care landscape have echoed our concerns. And the National Council on Disability has repeatedly warned Congress against enacting policies that reference QALY-based metrics and has explicitly recommended that CMS refrain from pursuing policies to reduce Medicare and Medicaid prescription drug costs that utilize pricing models from foreign countries relying heavily on QALYs and similar measures. We are concerned about policies that would prioritize cost savings by, in effect, both dictating and rationing care based on assessing the perceived value of those receiving care.
 
We are committed to collaborating with the administration, Congress and states on common sense health reforms that address affordability while also preserving equal access to care. We will work across the aisle to ensure the implementation of solutions that allow America’s patients, families, and their healthcare professionals to decide the best care for them. 

What Happens in Countries Using QALYs and Cost-Based Thresholds to Determine Coverage

Other countries are often referenced as examples of how the use of QALYs or similar cost-based thresholds impact access to care:​​
  • Australia: In Australia’s one-size-fits-all health system, people die waiting for coverage. A pancreatic cancer patient with the “wrong cancer” cannot access a life-saving drug available to others with breast cancer.
  • Australia: Families are calling for greater access to a medication that helps manage a severe form of epilepsy, but it is not yet available through the PBS.
  • Canada: Life on Hold – Federal, provincial, and territorial governments use flawed evaluations of the benefits and costs of new drugs that delay access to novel and new treatments.
  • Canada: Access Delayed is Access Denied — A Canadian viewpoint. 
  • Croatia: Croatia’s health system does not value patient quality of life and innovation. "We Can’t Find Those Drugs” - A Son’s Quest to find treatment for his father. 
  • New Zealand: Facing “slow” and “cruel” culture, universal agreement that Pharmac's HTA processes were "flawed" and the model required a complete overhaul rather than "tinkering".
  • United Kingdom: While U.K. decides if drug is “cost effective”, children with Duchenne Muscular Dystrophy wait - while their disease progresses. Time is muscle.

Cancer patients in New Zealand are turning to crowdfunding to gain access to a drug that has a 60 percent success rate in various forms of the disease. #ValueOurHealth #BeQALYAware https://t.co/d97afPcBfd

— Partnership to Improve Patient Care (PIPC) (@PIPCpatients) January 29, 2024
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Case Studies

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United Kingdom
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Ireland
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Canada
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Australia
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Germany

PIPC Responds to Most Favored Nation Executive Order

"We urge Congress and the administration to reconsider a Most Favored Nation policy that would import foreign standards  where disabled lives are too often not considered worth saving."
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Letter on Proposed International Pricing Index 

PIPC's letter highlights concerns that this new policy would import QALY-based standards to key U.S. health programs
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Referencing International Prices: What Experts are Saying

A new resource from Value Our Health compiles experts' statements regarding the unintended consequences of international reference pricing policies. 
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NCD Highlights Impact of QALYs on Disability Community

As detailed in a report from the National Council on Disability, the use of QALYs continuously devalues the lives of people with disabilities by creating unnecessary barriers to access.
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CCD Letter to Congress

​"CCD is very concerned that these provisions effectively import a QALY-based and discriminatory system from abroad. These systems are discriminatory against people with disabilities and do not have a place in the United States health care system.”
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German Health System & Its Impact on Patient Access

​Though the German system does not rely on the QALY, the flawed process by which they determine a treatment’s clinical benefits has significant implications for access to care.
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Congress Moves to Import Discriminatory Health Policies

"If we as a nation want to have a serious and nuanced discussion about getting to a fair and equitable health system, we must reject reliance on QALYs and other discriminatory metrics and embrace PCORI as part of the solution."
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Chairman Coelho in San Jose Mercury News

PIPC Chairman Tony Coehlo penned an op-ed in The Mercury News outlining his concerns with the Trump administration’s proposed international drug pricing index. ​
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PIPC Applauds NCD Efforts to Combat Health Discrimination

"We believe that more work needs to be done to provide a full picture and understanding of the inherent bias of discriminatory metrics used in health care decision-making."
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NCD Statement on  International Pricing Index 

“Making prescription medicines more affordable is a proper and necessary goal for the U.S., but it is not in the best interest of Americans to import price controls from countries that use the IPI to determine U.S. drug pricing.”
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60 Groups Oppose HHS 'Most Favored Nations' Rule

60 leading groups and individuals representing the patient and disability communities signed onto PIPC's comment letter to HHS opposing the Trump administration's Most Favored Nations rule.
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NCD Letter on 'Most Favored Nations Rule' 

NCD's letter to CMS outlines serious concerns about the impact of the Most Favored Nations rule on the disability community. 
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