High-risk teens like my son should be at the top of the COVID vaccine list this month

Last October, a large study from the United Kingdom revealed that when it comes to the SARS-CoV-2 virus, people with Down syndrome are “four times more likely to be hospitalized – and 10 times more likely to die – than the general population.” My son, an autistic boy with Down syndrome, was 13 at the time and I remember the spike of dread that I felt when I read those numbers, confirming everything that I feared.

A few weeks later, in early November, word came from school that he had been exposed to COVID. Then he got a low fever that just wouldn’t go away. My wife got a positive COVID test and a much higher fever. We spent half the month in terror that things would get worse, though thankfully they didn’t.

The FDA is expected to approve the Pfizer vaccine for teens aged 12-15 in the next few days. This is such welcome news and I want to believe that our public health systems will prioritize the safety of my son and all teens who are at high risk of dangerous complications from COVID. It seems like an easy call to make given the data. But over the past few months, we’ve seen again and again how disabled adults have been excluded from vaccine priority systems, too often with lethal results. Now is our chance to do better.

People with disabilities overlooked

Despite the data on risk, adults with Down syndrome were not generally prioritized when it came to our early vaccine rollout unless they happened to live in an institutional or congregate setting. The Centers for Disease Control and Prevention added Down syndrome to the list of conditions meriting early vaccination in December. Alas, as reported in USA TODAY, many health departments around the country failed to act on this information and adequately vaccinate their vulnerable citizens.

Advocates in Minnesota (where I live) had to fight with the state when early vaccination approval only came for paid caregivers. That meant that aides or parents who are paid to provide support for their kids could get vaccinated, but unpaid parents and disabled adults themselves couldn’t. This only changed thanks to relentless lobbying by the Down Syndrome Association of Minnesota and others.

David and Nico Perry at the bus-stop, on February 2021.

The same story played out across the country for all kinds of people with high risk of hospitalization and death. Their assistants, as health care workers, could get vaccinated, but they couldn’t. And it wasn’t just that disabled people were overlooked. Alice Wong, a national disability rights leader based in San Francisco, launched the #HighRiskCA campaign after California deprioritized vaccine access for disabled individuals at high risk but who were under 65.

Wong told the Los Angeles Times that the decision was “clearly erasure, this is eugenics, and I consider this a form of violence.” Her online campaign took off, helped shift priorities in California, and expanded to incorporate comparable experiences around the country under the hashtag #HighRiskUSA.

Prioritizing equity in all policies:What we learn from vaccine disparities

It didn’t have to be this way, but it’s been clear all along that medical rationing and triage in the face of COVID would follow the prejudices of our societies. Too often, disabled lives are devalued, especially for disabled people further marginalized by poverty, racism or other forms of discrimination. This was true when oxygen and ventilators were allocated as cases spiked. It was true when vaccine priority lists were drawn up and implemented.

Vaccinate the teens who need it most

And there’s a body count. The Daily Beast followed the story of Vincent Welch, a 35-year-old man who lived at home in Michigan. He tried to get vaccinated, couldn’t, caught COVID and eventually died.

This time we have to do better. Obviously, I want to protect my son. I’m a parent and I have tunnel vision when it comes to my kids’ safety. But I also want government agencies to do their job and build a transparent and smooth system that routes Pfizer vaccines into dedicated spaces for high risk teens. As vaccine surpluses grow, set aside enough of the only one approved for 12-15-year-olds for those who need it most.

Lessons from the past year:I was wrong about the COVID-19 vaccines. Here’s what I learned.

Over the last year, the pandemic has largely exacerbated preexisting inequalities, making the vulnerable more vulnerable, intensifying discrimination. But with that intensification comes visibility, and so I remain optimistic that we can learn from our systemic failures and do better the next time around. For kids like my son, that next time starts right now.

David M. Perry, a journalist and historian, is senior academic adviser in the History Department at the University of Minnesota. He can be found at his website or on Twitter: @Lollardfish

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