Prioritizing Health Care: Patient or Payer First?
The Honorable Tony Coelho is a former United States congressman from California and primary author and sponsor of the Americans with Disabilities Act. Tony was elected to Congress in 1978 and served for six terms until 1989. In 1986, Tony was elected House Majority Whip.
This has been a tough year for patients and people with disabilities, in more ways than many recognize. As the primary author of the Americans with Disabilities Act (ADA) and a patient with epilepsy, I am frustrated that policymakers continue to ignore how their policies discriminate against patients and people with disabilities. One example looming under the radar is the ongoing use of quality-adjusted-life-years (QALYs) developed by health economists to compare the cost effectiveness of health care treatments, and now used to limit care to veterans.
QALYs have significant methodological limitations known to disadvantage people with disabilities and serious chronic conditions for whom “optimal health” may not be achieved even with treatment, a fact widely recognized by patients, policymakers, and even health economists. The U.S. Department of Health and Human Services cited in 1992 that Oregon’s use of QALYs to determine coverage potentially violates the ADA.
Despite deep-seated concerns, research based on QALYs serves as the foundation for insurance coverage decisions, both public and private. Academics, like those employed by the Institute for Clinical Effectiveness Review (ICER), use QALYs to determine whether the extra dollar on health care spent is worth it. Insurers and policymakers use QALYs to determine whether we are worth it.
Congress banned the Patient Centered Outcomes Research Institute (PCORI) from using QALYs to determine treatment value, choosing instead to measure effectiveness based on outcomes that matter to patients, ranging from clinical to quality of life. Also, Medicare cannot use QALYs to restrict coverage. Last year, after strong opposition from patients, CMS had to abandon a proposal to use ICER’s cost-effectiveness reviews in Medicare -- an attempt to sidestep the Medicare law.
Despite efforts to improve health care to veterans in the wake of some very public concerns about the quality and accessibility of its system, ICER announced the Veterans Administration (VA) will rely on its QALY-based cost effectiveness reports to determine drug formularies. This further entrenches the VA’s coverage decisions based on what is cost effective to the payer in the short term, not what is clinically effective for veterans in the long term. With constricting budgets, some State Medicaid programs also aggressively use cost-effectiveness thresholds to limit access for low-income patient populations. We also find ourselves defending PCORI and the need for comparative clinical effectiveness research that measures the impact of treatments on outcomes that matter to patients, as defined by patients, as opposed to defining treatment value based on payer-centric cost-based analyses. Cost effectiveness comparisons do not consider many non-medical costs borne by patients, families and caregivers and ironically are not always so cost effective in the real world.
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.
If Congress and the administration want to put “patients first” and drive “patient-centered” policies, their credibility hinges on actually partnering with patients and people with disabilities. If the next iteration of health care legislation does not have the support of patients or people with disabilities, that’s a sure sign it’s really not about improving their health care. If our health care programs want to deliver better and more accessible care to active duty military and their dependents, as well as those retired from the Armed Services, patients and people with disabilities that have served this country must be at the table when coverage is determined, instead of ivory tower academics seeking to ration care based on short sighted cost effectiveness comparisons. Finally, to be truly innovative, the Innovations Office for Medicare and Medicaid must follow the lead of the Food and Drug Administration and PCORI by creating a meaningful patient engagement infrastructure that goes beyond “token” engagement, and rely on patients and people with disabilities to co-create alternative payment models that achieve value to the patient.
There are many stakeholders in health care, ranging from providers, insurers, innovators, information technology developers, and more. But if the nation’s policies aren’t serving our primary stakeholder -- the patient -- then we aren’t doing our job.