MADISON COUNTY, Ala. (WHNT) — Getting your hands on an at home COVID-19 test has proven challenging recently, but it’s a useful tool in fighting the pandemic.
However, for those who are blind or visually impaired they are inaccessible. The National Federation of the Blind says the tests were not made with braille or other nonvisual tools. But members of the organization are hoping to change that.
Kathy Thompson lives in Madison County. She has been diagnosed with a rare genetic disease called Usher Syndrome.
“It is the most common cause of deaf blindness in the United States,” Thompson said. She has Type 2 Usher Syndrome. Kathy is hard of hearing and visually impaired.
“My vision is literally the size of my head. Most people can see all the way out to here, I can only see about 18 degrees. I have tunnel vision and that’s Retinitis pigmentosa,” she explained.
Kathy recently bought an at home COVID-19 test after returning from a trip to Maryland. She describes the difficultly of trying to read the result, which showed up as a pink line on a white background.
“With my vision I need high contrast and a pink line on a white background is not high contrast. I had to have someone here at the house to read the test result because I was afraid I was going to read it incorrectly,” she said.
Having to call another person to read test results, can obviously place them at risk if the test is positive.
Improving accessibility of at home COVID-19 tests is a priority for the National Federation of the Blind. Huntsville chapter leaders explain the civil rights group’s efforts. “Our President Mark Riccobono, sent a letter to January 3rd to President Biden requesting him to work with the National federation of the blind as partnership as he said in the letter, to work together to find a way that we can make these tests accessible to all Americans,” said Luke Seibert, President, Greater Rocket City Chapter of the National Federation of the Blind.
The civil rights group has also sent a letter to the head of the FDA. They haven’t received a response back.
“This is not that hard to do, it’s just a matter of thinking before we produce these devices and it’s unfortunate that we haven’t even heard back from the President of the United States yet,” said Larry Povinelli, Treasurer, Greater Rocket City Chapter of the National Federation of the Blind.
Huntsville chapter members say there are several ways the test could be accessible, and the technology is already used for many other medical devices. Povinelli provided a statement to News 19 explaining some of the way this could be accomplished.
“There are labels on the drugs, with braille instructions. They’re also chips that are embedded in the drug bottle that can be scanned by a device and it reads you all the instructions of the drug dosage, frequency, and the side effects, etc. The same information a sighted person sees on paper. The pharmaceutical companies provide this when they know that a person is blind. In addition, if there’s any kind of reading component to the test, which I assume there is, that component would provide an audible reading of the results. A simple positive or negative, either in a verbal or even a form like one beep for positive and two beeps for negative. Finally, since iPhones are completely accessible to the blind, some type of instruction/reading could be utilized through the iPhone,” Povinelli explained.
News 19 also reached out to The Alabama Institute for the Deaf and Blind. Jennifer Rehfeld works as a case manager for the blind and visually impaired. She says there are some apps people can use to help interpret directions of a medical device.
“Be My Eyes, Seeing AI, can kind of help a little bit with reading print and and with helping people to navigate those tests if they need it. And we are also providing training in learning how to use those apps if requested,” said Rehfeld.
Kathy points out, this is just the latest challenge related to accessibility during the pandemic she has had to overcome.
Transportation was another issue.
“To go and get tested, I would have to decide because I don’t drive, who in my family was I willing to risk,” she stated.
That’s forced her to try to isolate at home in a more isolating world. Even when she is out, she is finding walls … Metaphorical and physical.
“I can read somebody’s lips. I’m fluent in reading lips, but when it’s covered up,” she said. “And what’s really bad is when they started putting up those plexiglass things at the cashier. I didn’t realize because it’s clear. I can’t tell you how many times I ran into it with my head or my hand trying to find the hole that I could give them my money.”
She laughs as she tells that story, showing her positivity in a difficult situation.
Kathy has this message for the community of North Alabama.
“In this crazy time that we have with this pandemic and take a step back and be thoughtful, be caring be kind,” she said.
As the world continues to battle COVID-19, another group of fighters is still battling for access.
While the organization awaits a response from the federal government regarding testing accessibility, the National Federal of the Blind is using social media to raise awareness about this issue. Huntsville chapter members says the issue with the at home COVID tests are a part of a larger effort.
“Trying to pass legislation through Congress to make medical devices accessible, whether it be blood pressure testers or other equipment,” Seibert said. “The capability is there.”
He says the National Federation of the Blind wants to require manufactures to work with the civil rights group in the hopes of making progress when it comes to accessibility.