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.

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

Today, the Partnership to Improve Patient Care (PIPC) released a public opinion poll by Morning Consult regarding the use of cost-effectiveness assessments to determine value of coverage and treatment costs. The survey demonstrates that voters resoundingly reject the main tenets of cost-effectiveness analyses with 82 percent of American voters objecting to their use in determining health care coverage and reimbursement decisions. These types of measures, which are often used outside of the U.S. to limit patient access to medicines, have been frequently criticized as discriminatory by patients and persons with disabilities. Increasingly, policymakers and payers have proposed to use these same tools to limit coverage for Medicare and Medicaid beneficiaries.  

This post originally appeared as an op-ed in Morning Consult on March 15, 2019. 

Across the nation, there’s a collective agreement that something must be done by lawmakers and regulators to address the rising cost of health care. As new policies and regulations are designed to meet affordability standards, it is important that patient-centered solutions remain at the forefront. However, that is not what we’re seeing in recent state policies across the nation

​An article in STAT News notes that CVS may consider changes to its new cost-effectiveness program as a result of backlash from over 90 leading advocacy organizations representing patients, people with disabilities, physicians, and caregivers. Spearheaded by the Partnership to Improve Patient Care (PIPC), stakeholder groups criticized CVS Caremark’s decision last month to incorporate the Institute for Clinical and Economic Review’s (ICER)”quality-adjusted-life-year” metric in some of its coverage choices. “From a clinical care perspective, QALY calculations ignore important differences in individual patient’s needs and preferences,” the letter states. “From an ethical perspective, valuing individuals in ‘perfect health’ more highly than those in ‘less than perfect’ states of health, is deeply troubling.” Dr. Troyen Brennan, a CVS executive vice president and chief medical officer, responded to the letter saying that “It behooves us to spend some time to understand the concerns of the disability community and, if necessary, modify the measures so the process treats every life as being of equal value. We’ll go with the program we have now, but we’re looking for ways that we might modify it down the line.”

An article in BioPharmaDive highlights the latest pushback on efforts to establish quantitative frameworks for valuing medicines. These efforts, spearheaded by the Partnership to Improve Patient Care (PIPC), criticized CVS Caremark’s decision last month to “incorporate value-based drug pricing analyses in some of its coverage choices.” The letter, composed by many prominent groups including the American Association of People with Disabilities, the National Alliance on Mental Illness, and Vietnam Veterans of America, argues that their “main issues with ICER’s framework are not new and mirror some of the criticisms laid out by the drug industry’s trade lobby PhRMA. The article highlights that Tony Coelho, President of PIPC and former Congressman who led efforts to pass the Americans with Disabilities Act, took a strong stance on CVS’ decision characterizing it as an “outdated policy that has no place being referenced as a value-based initiative.”

An article in BioCentury highlights the Partnership to Improve Patient Care (PIPC)’s recent letter to CVS Health Corp, which voices the importance of a reconsideration of a new formulary that would be restricted to drugs deemed cost effective by the Institute for Clinical and Economic Review (ICER). This formulary, the article states, would “allow clients to exclude from their plan any drug with a launch price that exceeds a cost-effectiveness ration of $100,000 per-quality adjusted life year (QALY) gained as determined by ICER.” The letter, composed by 94 patient groups and individuals, criticized ICERS’s cost effectiveness analysis by arguing that cost effectiveness inherently ignores existing differences among patients. “CVS spokeperson Christine Cramer told BioCentury that the firm believes as more PBM clients adopt such programs, manufacturers will begin to moderate lunch prices,” the article states 

An article in the Washington Examiner highlights the Partnership to Improve Patient Care (PIPC)'s recent letter to CVS Caremark, which voices opposition to CVS' use of quality-adjusted-life-year metric. Joined by over 90 stakeholder groups, PIPC criticizes CVS for ignoring important differences among patients while relying on a flawed one-size-fits-all assessment. "Cost-effectiveness analysis discriminates against the chronically ill, the elderly and people with disabilities, using algorithms that calculate their lives as 'worth less' than people who are younger or non-disabled," the letter states. 

PIPC Chairman Tony Coelho has penned a new blog in Real Clear Health that criticizes CVS Caremark’s use of the quality-adjusted life year (QALY) metric when deciding treatment coverage. “CVS touted its program as an ‘innovation,’ but it is anything but. Under the new policy, CVS would offer employers policies that exclude drugs from their formularies if they exceed a subjective ‘cost-effectiveness’ threshold. CVS would rely on a deeply flawed value assessment model developed by the Institute for Clinical and Economic Review (ICER) in determining whether treatments fall below a $100,000 ‘cost per quality-adjusted-life-year’ limit. Patient advocates have been down this road before. In the early 1990’s Oregon proposed using a similar ‘cost-effectiveness’ formula in Medicaid, but ultimately backed away from it in part due to concern that it discriminated against people with disabilities and would violate the Americans with Disabilities Act.”

By: Janni Lehrer-Stein
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I learned recently, many weeks after its early June announcement, that the Institute for Clinical Economic Review (ICER) based in Boston will develop a report assessing the cost effectiveness of a new cure for blindness, a gene therapy for vision loss associated with a form of retinal disease. By the time I learned about it, the comment period had closed to allow stakeholders to share key information relevant to the first phase of development of the evidence report. While ICER said it would contact key patient groups and clinical experts to gain further insights on the patient perspective and clinical context of this new treatment option, I had never heard about it when I could have had a voice in the initial phase of the study.  It’s not clear how hard they worked to get the patient perspective, and I certainly have a perspective to share

In an op-ed published in RealClearHealth, PIPC Chairman Tony Coelho examines the limitations of quality-adjusted-life-years (QALYs) and how this tools for value-assessment may systematically discriminate against patients and individuals with disabilities. As he writes, "Underlying all this is the key question we must ask ourselves when considering any policy related to the payment and delivery of health care: for whom are we creating this policy? Who is the ultimate stakeholder? If the answer is not the people served by health systems -- patients and people with disabilities -- then we have a serious problem."