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

After 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.

The pandemic response has been data-driven. Counts of the number of Covid-19 tests, infections, and mortality have been essential in shaping public health policies and response efforts. But for people with disabilities, which includes more than 61 million American adults, barriers to getting tested or accessing health care mean data from this group are less likely to be included in surveillance estimates. This creates a bias in the overall Covid-19 data that has ramifications for everyone, as this skew in the Covid-19 national estimates can misguide response efforts.

Tracking Covid-19 among people with disabilities is also limited by the lack, or inadequacy, of data reported by states. State-level data is used to create Covid-19 surveillance curves, making it a powerful tool in directing the pandemic response. Although state-reported data comes from various sources, it is largely derived from medical record information, including Covid-19 testing, hospitalization, and mortality statistics.

But consider the last time you were at the doctor. You were likely asked your age, gender identity, race, ethnicity, and even marital status. Were also asked if you have a disability? The answer is likely “no.” Information on disability is not often collected in health care settings. This has implications for patient outcomes but is also a missed opportunity for the national pandemic response. Although people with disabilities are at high risk for Covid-19, this information gap makes it almost impossible to develop strategies to reduce that risk.

Disability-related Covid-19 statistics have been reported from a few residential facilities and registries of recipients of state services. While these estimates are staggering, these data represent only a fraction of the disabled population and are a partial view of pandemic’s impact on the disability community. Relying on these data alone will not be sufficient and without expanded data collection the Covid-19 response will continue to miss the mark for the majority of disabled people.

The need for Covid-19 disability data mirrors calls for better data collection and reporting by race and ethnicity. As states have begun to release Covid-19 data by race, important disparities have been identified. While there is much work to be done, state-level data have substantiated the need for a more equitable pandemic response to reduce Covid-19 infection rates and improve outcomes for racial minorities. Without similar data by disability, the Covid-19 response may not fully reach disabled Americans, which includes more than 25% of the U.S. population.

As a public health professional, I understand surveillance data, but it took my own pandemic experience to realize that these disability data gaps reflect a deeper social injustice. Data are powerful. Data allow us to generate evidence, track change, and support advocacy efforts. Representation in data-collection efforts has implications for society, and the exclusion of disability from surveillance curtails the ability to address inequities for this group. While this is a long-standing issue, the urgency of the ongoing pandemic presents an opportunity to capitalize on the global fixation with data by including disability in data-collection efforts and moving toward disability inclusion and equity.

As we continue to monitor the pandemic and eagerly wait for the Covid-19 curves to flatten, it is important to consider who might be missing from these estimates.

In many ways this pandemic is a reminder that disability must “get counted.”

Bonnielin K. Swenor is director of the Johns Hopkins Disability Health Research Center and associate professor of ophthalmology at the Wilmer Eye Institute at Johns Hopkins School of Medicine, and associate professor of epidemiology at the Johns Hopkins Bloomberg School of Public Health.