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.
Chairman's Corner: Tennessee Medicaid Waiver Shows Callous Disregard for Patients and People with Disabilities
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.
Is the life of a person with a disability or chronic condition less valuable than the life of a person without one? There is renewed interest among lawmakers to tackle healthcare costs, specifically, the rising cost of prescription drugs. However, the Administration’s proposed International Pricing Index (IPI) model, an initiative proposed in 2018 that would arbitrarily base prices of American medications off the government set prices of medications in foreign countries, is deeply flawed. Yet, we may see some version of it reintroduced soon.
The final New York budget is complete. And now we know for sure that states feel empowered by this administration to discriminate in their Medicaid programs. I had hoped that we were past these tactics to discriminate when, in 1992, HHS denied a state Medicaid waiver using quality-adjusted-life-years (QALYs) to determine its coverage because of its implications for violating the Americans with Disabilities Act (ADA) and when, in 2010, Congress banned use of QALYs in Medicare. But it looks like we are fighting this kind of discrimination state-by-state now.
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
Chairman's Corner: Will ICER’s Response to Attacks on the QALY Quiet the Critics?: A Reply from the Partnership to Improve Patient Care
In response to a recent blog post entitled “Will ICER’s Response to Attacks on the QALY Quiet the Critics?” (December 18, 2018) we must unfortunately reply: Absolutely not. Regrettably, ICER’s response suggests that for patients, the only options are a) a metric that is widely acknowledged to discriminate against the elderly and people with disabilities, or b) a metric that ignores elements of value that are critically important to patients. Patients need another option, and PIPC is committed to supporting it.
The Partnership to Improve Patient Care (PIPC) has a long history advocating for the perspectives of patients and people with disabilities to be considered in the value assessment of treatment options. It is a step in the right direction for the Institute for Clinical and Economic Review (ICER) to advance a new project to develop and test alternative methods for the evaluation of potentially curative treatments. As part of this work, we encourage ICER to consider innovative methodologies beyond flawed cost effectiveness methodologies that use a quality-adjusted-life-year (QALY) or similar metric. This process could be an opportunity to learn from the mistakes of other countries that have embraced the use of a cost-per-QALY metric to determine treatment value with serious implications for access to care by people with disabilities and serious chronic conditions.
This post originally appeared as an op-ed in the San Jose Mercury News on January 2, 2019.
The Trump administration proposed an “international pricing index” intended to reduce drug spending under Medicare Part B by replicating the rates negotiated in other countries. It seems like a commonsense solution: Why should America pay more than other countries?The truth, however, is more complicated: lower foreign prices emerge from one-size-fits-all health care systems that drive patients to use certain drugs while refusing others, irrespective of individual needs.
Recently, the Institute for Clinical Economic Review (ICER) announced that their future reports will incorporate more prominently “a calculation of the Equal Value of Life Years Gained (evLYG).” For over a decade, representatives of patients and people with disabilities have communicated to ICER that QALYs are fundamentally flawed and inherently discriminatory. The QALY was developed as a tool to make one-size-fits-all decisions, not facilitate patient-centered health care.
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.”
Chairman's Corner: Congress Must Protect Health Care Access From Being Denied Based on Flawed Analysis
In an op-ed for The Hill, PIPC Chairman Tony Coelho outlined his concerns with MedPAC’s pursuit of cost-effective analysis to make coverage and reimbursement decisions. As he writes, "As policymakers encourage a transition towards value-based health care, I worry that more focus is being given to what is most cost-effective for the “average patient” than creating a system that works for each individual patient. I am not average. You are not average. We are the reason a health-care system exists — our health and well-being, our treatment, our recovery."
As Chairman of the Partnership to Improve Patient Care (PIPC), I have seen tremendous progress in the patient-centeredness movement, particularly in changing the culture of medical research. Yet, our leaders should know that we still have a long way to go to give patients, people with disabilities, veterans and caregivers a voice in how we deliver care that patients value. They deserve a seat at the table in any discussion of health care policy, as well as meaningful opportunities to voice their unique and real experiences
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."
PIPC Chairman Tony Coelho recently penned a blog for HuffPost, complimenting steps that are being taken that show progress in shifting toward value-based healthcare decisions. “While a tremendous amount of work remains to be done, policymakers took two steps recently that show progress is possible. One was approval by the Senate Finance Committee of the CHRONIC Care Act, a bipartisan bill (yes, they still exist!) whose success is attributable to significant stakeholder engagement and that, if enacted, will help to meet real patient needs.”