As the father of a son with Down syndrome, I’m incredibly thankful that my baby was born in the United States, where he has access to top-notch medical care. Children with Down syndrome often face serious health challenges, such as congenital heart conditions and leukemia. Recent medical breakthroughs have immensely improved and often saved the lives of kids like my son Oskar.
In many other countries, individuals with Down syndrome are harmed when health care systems use discriminatory metrics that severely restrict which treatments are covered.
The health care systems in those countries heavily rely on cost-benefit assessments that rely on a metric known as the Quality-Adjusted Life Year, which seeks to quantify how much a treatment costs for each year of perfect health it offers.
Of course, people with certain disabilities and chronic conditions will never be in perfect health, so treatments geared towards these patient groups are essentially deemed less valuable. Analyses of therapies for conditions like Duchenne muscular dystrophy show the bias even more starkly: some QALY thresholds make no treatment for DMD appear cost-effective at all.
For individuals with disabilities, that assumption is more than offensive in the 21st century. It is dangerous. It tells people with disabilities that their lives are worth less, and it encodes that message directly into health policy.
In both the United Kingdom and Canada, patients often wait years for innovative drugs that are available immediately in the United States. The National Institute for Health and Care Excellence, the British agency that determines which medicines are available to patients, recently recommended against routine use of new Alzheimer’s disease drugs because they failed to meet rigid cost-per-QALY thresholds, making it harder for patients to access treatments proven to slow cognitive decline. This is important for adults with Down syndrome who have a 90% chance of getting Alzheimer’s in their lifetime.
Thankfully, in the United States, Medicare bans the use of QALYs, and lawmakers have introduced legislation to ban its use in all federal health programs.
It would be a tragic mistake for the U.S. to move forward with a well-intentioned but flawed plan to tie drug prices to European health systems where QALY-based cost-effectiveness frameworks influence pricing and reimbursement decisions—effectively importing policies that restrict care and discriminate against those with disabilities.
Americans have spent decades fighting to make sure our health care system reflects the value of kids like my son. Adopting policies that treat individuals with disabilities as “less than” would undo decades of progress.
Hampus Hillerstrom is the president of the National Down Syndrome Society. This piece originally ran in The Well News.