Thirty years after the passage of the Americans with Disabilities Act, significant reforms to our national health care system are still needed to complete the promise of equal opportunities for those with disabilities. Milestones such as the passage of the Affordable Care Act have brought those with disabilities closer to fully participating in all aspects of community life, living independently and achieving economic self-sufficiency. But amid this progress, health plans, legislators, and the Trump administration are eyeing discriminatory methods to rate the cost-effectiveness of medical treatments that devalue the lives of people with disabilities and those managing the most challenging medical conditions.
This summer, President Donald Trump signed an executive order to lower drug prices that explicitly relies on a model that discriminates against people with disabilities. The Trump administration’s executive action uses the controversial International Pricing Index model to lower drug prices, which relies on the quality-adjusted life-year methodology to rate the value of drugs. This action should concern people with disabilities, disability rights advocates and anyone who manages a complex medical condition, because the QALY discriminates against the most vulnerable among us.
Simply put, the QALY uses a calculation to weight a drug’s cost-effectiveness by associating a random dollar amount to one year of perfect health. Here’s the problem: People with disabilities may never experience the “perfect” quality of life that the QALY uses, meaning certain drugs that improve my life or someone else’s may never reach us because the QALY calculated that they were not cost-effective.
The action from the Trump administration should scare any patient, because it is the first time the QALY has been used in federal programs to make treatment cost and access decisions. If we don’t look up now, this gradual use of QALY could be the first step in adopting this methodology more broadly in health care policy.
I live with quadriplegic cerebral palsy with a severe speech impairment and require personal assistance services to get out of bed and help me with daily living activities. I have a master’s in Rehabilitation Counseling. I was privileged to serve as the chair of the Presidential Committee for People with Intellectual Disabilities under the Obama administration. In 2012, I had an 11-centimeter aortic aneurysm that dissected. If the QALY methodology had been adopted in my health care plan to make treatment-access decisions, both private and Medicaid, my health care plan would have deemed the surgery unnecessary, and you would not be reading this from me today.
Working in the disability field, I have had the opportunity to meet wonderful and inspiring people with abundant talents and a passion to make an impact. If the QALY is adopted across our health care system, people with complex needs such as me have to be fearful of dying. With unemployment increasing among people with disabilities during this pandemic, methodologies such as the QALY will limit the health care services people need in order to remain healthy enough to work.
Over 30 years, the social model of disability states that the environment disables the person and the condition. This philosophy was interwoven in the ADA fabric when it was drafted and passed more than 30 years ago and QALYs turn this on its head. In November 2019, the National Council on Disability issued Quality-Adjusted Life-Years and the Devaluation of Life with Disability: Part of the Bioethics and Disability Series. The NCD, a federally appointed council to make recommendations to improve the quality of life for people with disabilities, recommended that Congress pass legislation to prohibit the use of QALY in private insurance and the Medicare and Medicaid programs. Though not yet challenged in federal courts, scholars and advocates have determined that the QALY methodology will be found to be unconstitutional and in violation of other federal laws such as the ADA.
People with disabilities rightfully fear use of QALYs undervalues access to vital treatments that extend or improve their lives. So why is it that this Administration is reducing medicine access now – in the middle of a pandemic? The Trump administration should reverse its action, because the QALY has no place in American healthcare.
As members of Congress consider future health care reforms, they should follow the recommendation of the NCD and prohibit the QALY from private insurance, Medicare, and Medicaid. Advocates should use their voice to let their representatives know that they should keep the promise of the ADA and prohibit the QALY.
Jack Brandt is a disability policy specialist for the Partnership for People with Disabilities at Virginia Commonwealth University and previously served as chair of the Presidential Committee for People with Intellectual Disabilities under the Obama administration.
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