Children at excessive threat must be a high precedence

David M. Perry

Last October, a large study from the UK found that people with Down syndrome with SARS-CoV-2 virus were “four times more likely to be hospitalized and ten times more likely to die than the general population”. “My son, an autistic boy with Down syndrome, was 13 years old at the time, and I remember the fear I felt reading these numbers that confirmed everything I feared.

A few weeks later, in early November, word came from the 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 a month fearing it would get worse, but luckily not.

The FDA is expected to approve the Pfizer vaccine for adolescents ages 12 to 15 in the next few days. This is so welcome news, and I want to believe that our public health systems will prioritize the safety of my son and any teenagers who are at high risk of dangerous complications from COVID. Given the data, it seems like an easy phone call. But over the past few months we have seen time and again how disabled adults are too often excluded from vaccine priority systems, with deadly consequences. Now is our chance to do better.

Overlook people with disabilities

Despite the risk data, adults with Down syndrome were generally not prioritized with our early introduction of vaccines unless they happened to live in an institutional setting or in a community. The Centers for Disease Control and Prevention has added Down’s syndrome to the list of diseases that deserve early December vaccination. Unfortunately, as reported in the US TODAY, many health departments across the country failed to respond to this information and adequately vaccinate its vulnerable citizens.

Attorneys in Minnesota (where I live) struggled with the state when early vaccination approval was granted only to paid caregivers. This meant that carers or parents who were paid to support their children could be vaccinated, but unpaid parents and disabled adults themselves could not. That only changed thanks to the relentless lobbying of the Down Syndrome Association of Minnesota and others.

The same story played out across the country for all types of people at high risk for hospitalizations and death. Her health care assistants could get vaccinated, but they could not. And it wasn’t just that disabled people were overlooked. Alice Wong, a San Francisco-based national disability rights leader, launched the #HighRiskCA campaign after California penalized access to vaccines for high-risk disabled people under the age of 65.

Wong told the Los Angeles Times that the ruling was “clearly erased, this is eugenics, and I view this as a form of violence.” Her online campaign kicked off, helped shift priorities in California, and added similar experiences across the country under the hashtag #HighRiskUSA.

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

Vaccinate the teenagers who need it most

And there is 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 but couldn’t, caught COVID and eventually died.

We have to do better this time. Of course I want to protect my son. I am a parent and I have tunnel vision when it comes to my children’s safety. But I also want government agencies to get their jobs done and set up a transparent and smooth system that routes Pfizer vaccines into dedicated rooms for high-risk teenagers. As vaccine surpluses build up, you should 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 past year, the pandemic has largely exacerbated pre-existing inequalities, made the vulnerable more vulnerable and increased discrimination. But with this intensification comes visibility, and I remain optimistic that we can learn from our system failures and do better next time. For kids like my son, next time starts now.

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

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