By Angela F. Williams
Patients with disabilities are 11 times more likely to die from COVID-19 than their able-bodied peers. That’s a sobering statistic. And it is why public health officials have prioritized these vulnerable patients for vaccinations.
Unfortunately, when it comes to non-COVID matters, society doesn’t always show the same concern. In fact, many states and private insurers are pushing for a “reform” that could deprive Americans living with multiple sclerosis (MS), cerebral palsy, and other disabilities of life-saving medicines.
The reform relies on a metric known as a “quality-adjusted life year.” These QALYs supposedly quantify the “cost effectiveness” of drugs by assessing the “quality” of an individual’s life. The use of QALYs should concern every American, but especially those living with disabilities or battling chronic illnesses.
When this metric is utilized, a drug that delivers one year of “perfect” health receives one QALY. A drug that provides a benefit – but doesn’t return a patient to “perfect” – receives a fraction of a QALY.
So, by design, QALYs devalue important treatments for chronically ill and disabled patients.
Since even breakthrough drugs will not restore perfect health in those patients, this puts them at a distinct disadvantage when it comes to accessing life-saving or life-improving drugs and medications. While there is no cure for blindness, MS, or cerebral palsy, new drugs can still dramatically improve patient well-being and longevity.
The British national health system regularly employs this tactic to deny coverage for advanced new therapies for chronically ill and disabled patients. Many other nations use QALY-like assessments to determine which medicines are available to patients.
The biggest advocate for their use stateside is the Institute for Clinical and Economic Review – or “ICER” – an influential Boston-based organization.
ICER’s evaluations impose brutally simplistic categories on complex diseases. For instance, the institute splits patients with spinal muscular atrophy that have received treatment into three rudimentary categories: mobile, requiring ventilation and dead.
That classification is offensively reductive. Spinal muscular atrophy is an extremely challenging condition that involves several gradients of incapacitation. Drugs can deliver significant improvements to patients’ well-being without moving them between those three categories.
Worryingly, the institute has become very effective at getting large health insurers to utilize its metrics in their coverage decisions. And now New York health officials have begun using ICER metrics in its state-run Medicaid program, specifically to clamp down on access to advanced cystic fibrosis treatments.
ICER hasn’t been the only group working to jeopardize disabled Americans’ access to medication.
Shortly before President Donald Trump left office, his administration announced a rule that ties the price of physician-administered drugs covered by Medicare to their cost in a select group of other developed nations. In doing so, then-President Trump imported the ruthless QALYs used abroad.
Countless Americans with disabilities rely on cutting-edge medications to live healthy, productive lives. Unfortunately, access to those drugs is now in jeopardy because of ICER and the Trump administration’s rule. As we navigate the ongoing public health crisis, we must work to ensure these individuals have the tools to thrive, not simply survive.
To truly protect the health of the one in four Americans living with disabilities today, policymakers must work to ensure that those most deserving of new medicines are able to access them.
Angela F. Williams is president and CEO of Easterseals, a leading provider of services for people with disabilities, veterans, and seniors. This piece originally ran in the Buffalo News.