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Dearth of disability-related Covid-19 data can confound response efforts

  June 12, 2020 | By Bonnielin Swenor, STAT

fter a few days of feeling feverish, exhausted, achy, and having an intermittent sore throat, I feared the worst: Covid-19. I immediately self-quarantined. My husband begged me to call the doctor, but I didn’t see the point, as I knew I would be told to get tested. For me, that medical advice was complicated by my disability.

I am visually impaired due to a degenerative retinal disease and can no longer drive because of my vision loss. At the peak of physical distancing restrictions, getting to a testing site meant cramming my entire family into our car, since my husband is the only driver in our household and we have two small children who cannot be home alone. I am not only a protective mom but also a contentious epidemiologist, and other options like having a friend drive me to get tested or taking an Uber seemed irresponsible.

I was never tested. My case was mild enough that I recovered at home. I recognize my privilege in having the option to get a Covid-19 test, since accessing testing and non-urgent health care is not possible for many Americans – especially those with disabilities.

Barriers to Covid-19 testing, including transportation challenges and inaccessibility of testing sites, can lead to delays in access to health care and worse outcomes for people with disabilities. But less appreciated are the profound implications these barriers have on Covid-19 surveillance.

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