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
    • 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 2021
    • 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 >
      • 2020
      • 2019
      • 2018
      • 2017
      • 2016
      • 2015
      • 2014
      • 2013
      • 2012
      • 2011
      • 2010

Stop Discriminatory Value
​Standards in Health Care
Advance Alternatives that Help Patients and People with Disabilities 

Sign the Petition
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Patients and people with disabilities face major threats as private insurers and government programs look to cut costs using quality-adjusted-life-years (QALY) and other assessments that discriminate against patients, people with disabilities, and seniors. Recently, new threats have emerged, including: (1) a pharmacy benefit manager's new plan to limit access to prescription drugs using a rigid cost-per-QALY threshold, similar to that used by the United Kingdom's National Health Service; (2) the use of cost-per-QALY thresholds by New York's Medicaid program; and (3) a new Medicare proposal that would set reimbursement for physicial-administrated medicines based off decisions made in countries that use QALYs and cost-effectiveness thresholds to set national coverage. Join us in opposing discriminatory denials of care across our health insurance system. Patients and people with disabilities deserve to have our lives valued, because nobody should be considered too expensive to get the care they need.
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    ​“It’s devastating to not even be able to try a drug that could work for you… I understand a line has to be drawn but it feels unfair that other people make decisions about your life and how much it's worth.”

    - Patient with breast cancer in the U.K.

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    ​“It’s incredibly cruel to use the cost-effectiveness line and it makes me shake with rage…It’s like being in a dystopian society – it has been approved in Scotland and the US and Europe but England is just lagging so far behind… It’s an abomination of human rights that the drug isn’t available. It feels like discrimination against his disability.”

    - Parent of child with SMA in the U.K.

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    "There's no way I can't try this drug. It's the last thing that might save my life… It's crazy that I live in Canada, but now I'm looking at having to sell my house for coverage of my medication."

    - Patient with breast cancer in Canada

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    ​"'If they do approve it in September, she could be too far gone and then we’d be told it’s not worth the NHS’s resources."

    - Parent of child with Batten’s disease in the U.K.

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:​
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  • Canada: Alberta Care will not cover the cost of a patient's lifesaving cancer treatment, forcing her to pay out of pocket. Since Health Canada won't cover a lifesaving spinal muscular atrophy treatment, one family is desperately trying to access the drug through fundraising or a lottery.
  • New Zealand: Couple cycle to Parliament with a coffin in tow to raise awareness over Pharmac's failure to provide access to lifesaving drugs. Click here, here, here, and here to read more. One cancer patient who received a lifesaving drug through a compassionate care program is pushing Pharmac to fund the drug to help others. Pharmac is finally seeking proposals for new medicines for diabetes patients after neglecting them for years. Click here to read more.
  • United Kingdom: UK child cancer free after seeking CAR-T Cell therapy in Singapore when NHS would not allow him access to it. NHS neglects Lyme Disease sufferers.
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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

CVS: Value Our Health

In August, CVS announced that they would offer new insurance plans that exclude drugs if they exceed a subjective “cost-effectiveness” threshold. 
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White Paper: Uses and
​Misuses of the QALY

Value assessment, and the use of cost-effectiveness in particular, is receiving renewed interest as a tool for controlling health care spending.
Learn More

PIPC Response to CEVR Article on ICER's New 'evLYG'

In response to a recent blog post entitled “Will ICER’s Response to Attacks on the QALY Quiet the Critics?” PIPC Chairman Tony Coelho replies: Absolutely not.
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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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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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