In the coming weeks, millions of Americans will receive at-home coronavirus tests through the mail, thanks to a collaboration between President Joe Biden’s administration and the U.S. Postal Service.
But while the distribution may help people who have struggled to acquire rapid tests, it’s not a solution for everyone. For some — those who are blind or low-vision, are elderly, have issues with physical dexterity or have cognitive disabilities — the tests are difficult or impossible to use independently. Their options: not take a home test, risk exposing someone else to the virus to help administer the test or make a trip to a testing center, potentially exposing themselves further.
For many people who are immunocompromised or vulnerable, at-home tests can be a lifeline. So as the omicron variant continues to fuel high COVID-19 case counts, groups across the country, including in Massachusetts, are advocating for companies and the government to make the tests accessible.
“We are knocking on every policy and activism door we, as a disability activism community, can get to, in order to advocate for accessibility of COVID resources and policies,” said Sassy Outwater-Wright, executive director of the Massachusetts Association for the Blind and Visually Impaired, which was founded in 1903 as the first U.S. social service agency dedicated to serving blind and low-vision people. Helen Keller was on its first advisory board.
Accessible at-home tests should be a top priority during this phase of the pandemic, she said. “Not all of us have a family member who can help, especially if we’re isolating with COVID.”
Chancey Fleet, who is blind, said that when she had to take an at-home test earlier this winter, she was fortunate to have help from her husband, who is sighted.
The New York–based tech educator has been advocating for more accessible at-home tests since late 2021. As she reached out to more people in her community, she realized that inaccessible testing is a deep public health problem for disabled people, especially those who live alone and are still self-isolating.
“Their alternative would be to find a sighted person, and if they think they really might have COVID, that means bringing a sighted person close to the sample of COVID to interpret the test, which could harm another person,” she said. “So it's a real, real serious public health issue.”
For many people with disabilities, the pandemic highlighted existing disparities. A report from the National Council on Disability found that people with disabilities are twice as likely as people without disabilities to live below the poverty line. According to statistics from the National Federation of the Blind, people who are over 65 are almost three times as likely to have a visual disability as people under 65. The pandemic has already had a disproportionate effect on elderly people and people who live in poverty.
There are workarounds. Apps like Be My Eyes, which is free, and Aira virtually connect blind or low-vision people with a sighted person to assist with life tasks, such as interpreting coronavirus test results. The National Federation of the Blind is now offering blind people free access to Aira to help with at-home testing. There are also some tests, like the kit from Cue Health Inc., that can send results to a smartphone using Bluetooth technology, which could then be read with a screen reader audibly.
Those apps and tests, however, can be costly or raise privacy concerns with sharing medical information to third parties. A pack of three tests from Cue Health costs $474. Another at-home coronavirus test, made by Ellume, can be used with a free app that includes video and audio instructions, and can send results to an email address. Its retail price is around $38 for a single test.
“Using those is predicated on you having quite a lot of fluency in how to use a smartphone to work through accessibility issues,” Fleet said, noting that elderly people, and people who are newly blind, may not be proficient in assistive technology.
The technology workarounds also do not address the challenges of people who struggle with physical dexterity or following written instructions. Completing each precise step could involve swabbing your nose in a circle repeatedly or inserting an exact amount of droplets into a tiny reader, all while making sure nothing gets contaminated.
“The test demands more of us than it does of the general population,” Fleet said. “Thinking about not just blind people, but people with limited fine motor skills would be great.”
Fleet said that people who live alone or think they have COVID-19 are “put in an impossible position of having to go out and find a test in the community, increasing everybody's exposure risk, maybe standing in a very long line.” She added that the websites to find those coronavirus tests aren’t always accessible or easy to use.
The federal USPS site is accessible. Boston’s COVID-19 resource site is mostly accessible for people who use assistive technology, aside from a few sections — like the drop-down menus and a few linked PDFs — that may be difficult to navigate with a screen reader.
Demand for at-home testing kits for people with disabilities is high, according to Bill Henning, executive director of the Boston Center for Independent Living. He acknowledges that while not perfect, at-home tests are an important option for people who want to or need to avoid public testing sites.
“Those are challenging scenarios. If you don’t have the stamina to be outside, if it’s cold, you know, do you want to be cutting the line, so to speak, to get that accommodation? It’s daunting for lots of folks,” he said.
Millie Hernandez, who uses a wheelchair and has lupus, an autoimmune disease, said that for many people who are homebound or rely on around-the-clock medical care, traveling to a testing site can be difficult.
“People who are disabled don’t have that luxury,” said Hernandez. As an advocate who works with Boston Center for Independent Living, she said mailed testing kits are “a lifesaver.”
The center received around 450 kits from the Boston Public Health Commission at the end of December, and distributed them all within about 10 days. The agency said they are planning on sending out another round of kits to older adults and disabled people soon.
Henning shared some of the feedback the Boston Center for Independent Living received when people requested at-home tests. “I am severely immunocompromised and [my doctor] doesn’t want me taking any chances,” one person wrote. Another wrote that her son has five home nurses who she would like to regularly test. Another said that, to get a test, he would have to rely on The Ride, the MBTA’s service for disabled people, and he was worried about exposure.
Getting access to existing tools that are supposed to widely available, Henning said, continues to be a challenge.
“The need is understood,” Henning said. “But there’s this whole huge segment of seniors or people with disabilities and health conditions who still really need [to be] getting kits, getting PPE, things like that.”
"The test demands more of us than it does of the general population. Thinking about not just blind people, but people with limited fine motor skills would be great."-Chancey Fleet
Chris Danielson, spokesperson for the National Federation of the Blind, said that so far, advocacy groups have not found any testing kits that are fully accessible. They are continuing to lobby the local and federal government for more options.
“We don’t know of any U.S. companies innovating in this space,” he said.
Danielson hopes that in the future, tests could show results through changes in touch, temperature, smell or sound.
“There are already thermometers that can detect temperature and then speak it aloud, and they’re not very expensive, so why can’t some device detect the result of the test and do the same?” he asked.
Danielson pointed to a company in the United Kingdom that developed an at-home pregnancy test that allows users to feel the results rather than rely on visual cues.
John Koval, director of public affairs for Abbott, which manufactures the BinaxNOW test, didn’t provide specifics, but said the company will look at how “testing and technology can work together to help enable” more accessible home tests in the future.
Fleet said that companies have a unique opportunity to be a pioneer not just for coronavirus tests, but all at-home medical tests.
“Any company that wants to step up right now could be first and could be the bellwether that proves what's possible. And whoever that company is could be positioned very favorably,” she said.