The Call to Action to Bar Reference to Discriminatory Metrics in U.S. Health Pricing and Coverage Policy
On Tuesday, December 14, the Partnership to Improve Patient Care (PIPC) hosted its 12th annual PIPC Forum. This year's forum focused on the recommendation of the National Council on Disability (NCD) for an unambiguous ban on the quality adjusted life year (QALY) within the text of the Build Back Better Act (H.R. 5367), as well as the increasing reference to comparative and cost effectiveness assessments in determining reimbursement, coverage, and programs at the state and federal level.
PIPC Chairman Tony Coelho introduced the Chairman of NCD, Andrés Gallegos. Chairman Gallegos, talked about NCD’s work and research on the QALY highlighting that the QALY perpetuates health inequities for people with disabilities and emphasizing that NCD is pushing for a broad, unambiguous ban on the use of the QALY.
Advocates Jenn McNary and Meghan Moyer shared the ways in which this translates to our health care system, and mechanisms through which the QALY is currently being used to limit access to needed treatments for patients and people with disabilities.
Here are some key excerpts from our speakers:
“When we were working with Congress to pass the legislation creating PCORI, we thought that the bar on using the quality-adjusted life year by Medicare was enough. However, the National Council on Disability’s report in 2019 told us we still had work to do. The use of QALYs rising not falling means we are seeing discrimination in health care rising, not falling.” – Tony Coelho, Chairman, Partnership to Improve Patient Care
“Explicit and implicit discriminatory bias within health care professions represents an insidious virus against which people with disabilities have been fighting for decades. Where it is used, the QALY is an additional embedded bias cloaked under the virtue of cost savings.” – Andrés Gallegos, Chairman, National Council on Disability
“In our most recent advice to Congress we advise that Congress extend those prohibitions [prohibitions against the use of the QALY in the ACA] throughout federal programs. The Build Back Better Act is a tremendous opportunity to do so and to memorialize the protections with an unambiguous ban on the use of the QALY. We remain hopeful that our advice will be heeded as we all await the final text of that bill.” – Andrés Gallegos, Chairman, National Council on Disability
“The QALY perpetuates health inequities for people with disabilities. Not only does it have a discriminatory effect, the QALY discriminates in design as well. It is a pricing methodology that devalues the lives of people with disabilities. The calculation relied upon by the QALY reduces the value of treatments that do not bring a person back to perfect health, in the sense of not having a disability and meeting society’s standards of health and functioning. In that school of mathematics, you can imagine how disadvantaged scores of people with disabilities truly are. “ – Andrés Gallegos, Chairman, National Council on Disability
“The idea that we are going to put a number that is a multiplier in deciding who gets treated, what gets treated, what is worth the cost, and that number is going to be presented as if it’s evidence-based or as if it’s not biased, and then we are going to make our decision around treatment based on that, is fundamentally discriminatory.” - Meghan Moyer, Disability Rights Oregon
“Let’s bring it back to the people these policies impact…I would challenge anybody who is a decision maker who think of those people as throw away kind of people to instead really think of them as human beings who want to live their best lives for as long as they have a life. It’s about quality and not quantity.” – Jenn McNary, Patient Advocate
“We don’t expect that there aren’t’ going to be hard choices. We don’t’ expect that they won’t look at cost-effectiveness, but it has to be done in a way that is unbiased, that does not discriminate against people with disabilities and that looks at how bias has played into health inequities today.” – Meghan Moyer, Disability Rights Oregon
“The HPC (Health Policy Commission) in Massachusetts makes recommendations to the DUR and those recommendations are going to be based on QALYs and they are doing to be based on ICER scores. In fact there is an actual contract between HPC and ICER.” – Jenn McNary
Additionally, we heard about potential solutions from experts Caitlin McCormick for PCORI, Dr. Richard Xie from Innovation and Value Initiative, and Dr. Elisabeth Oerhlein from National Health Council, who shared the work their organizations are doing to further a patient-centered health care system. Below are some key excerpts:
“The patient voice and the patient input need to be incorporated and solicited throughout the development and application of these methods (for value assessment). And the second thing is health equity. The COVID pandemic has highlighted the widening disparities in our society and very often we focus on population averages, but we do not look into a subgroup’s specific input and implication of policy on disparities across subgroups. So there is a need to really incorporate the equity considerations in anything we do.” -Richard Xie, PhD, Innovation and Value Initiative
“The efforts that PCORI now is going to be funding in terms of enhancing the data landscape is going to be so helpful for us in making these analyses, even those that use cost-effectiveness, making them better reflect patient experiences and costs that matter to patients.” - Elisabeth Oehrlein, PhD MS, National Health Council
“PCORI has been working through an approach to its new provision that ensures transparency, notably patient engagement throughout implementation, considers the full range of treatment options, develops standards for identifying and capturing patient-centric cost data, addresses concerns around the use and misuse of cost data that could lead to cost-effectiveness or inappropriate value assessment, and hopes to expand beyond traditional health economic perspectives on cost and value.” – Caitlin McCormick, Patient-Centered Outcomes Research Institute
Full PIPC Forum
PIPC Chair Tony Coelho
NCD Chair Andrés Gallegos
PCORI's Caitlin McCormick
Panel Discussion #1
Panel Discussion #2