Congress is again debating health care payment reforms that impact the availability of innovative treatments, with the newest iteration of draft legislation not only failing to be responsive to calls from the disability community to unambiguously bar the use of discriminatory value metrics like the quality-adjusted life year (QALY) across federal programs, but also providing no opportunity for affected stakeholders to provide input.
I have spent my life fighting for people with disabilities to have a seat at the table in policies affecting their lives. When the Americans with Disabilities Act was being debated over 30 years ago, the mantra of disability advocates was “Nothing About Us Without Us.” When Congress debated establishing the Patient-Centered Outcomes Research Institute (PCORI), we fought for patients and people with disabilities to have a voice and a vote and ultimately Congress gave 3 seats on the PCORI Board of Governors to patient and consumer representatives. Now, we must fight for a voice in how politicians define health care value so that we can access the care that is valuable to us.
I have learned the hard way that without concrete requirements in statute, policymakers too often fail to solicit our input and incorporate it into policies affecting our lives. For example, the Affordable Care Act called on the Center for Medicare and Medicaid Innovation (CMMI) to establish patient-centeredness criteria to measure the success of its alternative payment models – but the agency has failed to do so. The Affordable Care Act similarly established a shared decision-making program to advance patient decision aids for preference sensitive care that was never funded or implemented. Throughout these examples, we see lip service from policymakers claiming policies to be centered on patients and people with disabilities while failing to have a process for considering our input or failing to advance policies that would meaningfully incorporate our perspectives into health care decisions. The goal of cutting costs for the government too often happens at the expense of people with disabilities and serious chronic conditions.
The disability community was already disappointed that each iteration of this legislation has failed to incorporate the recommendations of the National Council on Disability. When provisions to reform how Medicare pays for prescription drugs were debated as part of H.R. 3, the National Council on Disability urged Congress not to rely on QALYs and later strongly encouraged the “inclusion of an unambiguous ban on the QALY within the text of the Build Back Better Act (H.R. 5367) in such a way as to convey unequivocal application to the drug price negotiation process” and further recommended extending the QALY ban in Medicare across federal programs as part of their Health Equity Framework. Over 90 organizations representing patients and people with disabilities shared with Congress an Open Letter stating, “…we strongly urge policymakers to reject potentially catastrophic legislation and policies that reference QALYs and similar metrics, which reinforce health inequities, devalue people with disabilities and chronic conditions, older adults and communities of color.” My blog from last November further discusses the need to bar QALYs across federal programs.
As this process unfolds, it is my hope that there will be opportunities for engagement with the patient and disability communities to address the challenges in the legislation currently under consideration. Congress should strengthen, not omit or weaken, provisions requiring affected stakeholders to have not only a voice in the process but to know their input must be given weight in decisions related to the value of treatments. Congress should also act on the recommendations of their federal disability policy advisor, the National Council on Disability, to expand the Affordable Care Act’s ban on use of QALYs and similar metrics across federal programs, including alternative payment models implemented by CMMI.
We have come a long way from Jerry Lewis telethons where people with disabilities are to be pitied and we are expected to rely on others to determine what is in our best interest. People with disabilities know and understand better than anyone – because of our lived experience – how policy can work for or against us. We have a long way to go and must fight for a process that gives us a seat at the table.