Life is challenging these days for Tracey Kelly, 61. The upbeat central Illinoisian, who was diagnosed with HIV in 2002, is currently one of her soulmate Terry’s primary caregivers. Though they are no longer romantically involved, together, Kelly and Terry, who is battling brain cancer, have raised two kids, who in turn have given them grandchildren.

Says Kelly of Terry, “She took care of me years ago when I had AIDS. She got into bed with me and told me that her heart was breaking. So now it’s my heart that’s breaking—and my turn to take care of her.”


One thing Kelly doesn’t have to stress about as she cares for Terry is her own health coverage. Kelly is one of roughly 12 million Americans—including a large proportion of the nation’s roughly 1 million people living with HIV—who are so-called dually eligible for both Medicaid and Medicare, usually because they meet Medicare’s age (65 and older) or disability requirement and Medicaid’s low-income requirement. Between the two programs, says Kelly, plus Medicare’s Extra Help program, she doesn’t pay a dime for any of her health care needs.

“It’s seamless for me,” Kelly says, adding that she hasn’t had a problem with her coverage since the government, in recent years, basically abolished the much-hated “doughnut hole” within Medicare, which meant that the program covered drug costs up to a certain amount, after which recipients had to cover the costs entirely themselves until they reached a second threshold, at which point Medicare picked up the costs again. It was a coverage gap that cost many recipients into the low thousands per year, and Kelly wasn’t spared.

“Once, at the pharmacy,” she recalls, “my pharmacist said, ‘You’re now in the doughnut hole, and you’ll have to pay $1,600 for your HIV meds.’ Terry, who was there with me, joked, ‘Well, I’ve got $400 in my wallet—can we buy two pills?’”

Kelly now says her remaining issues with her dual coverage—under which Medicare, as the primary payer, picks up about 80% of her health costs, and Medicaid generally picks up the rest—are manageable. She wears contact lenses, but neither plan, she notes, covers vision or dental beyond Medicaid’s coverage of an annual eye exam and a limited range of very basic lenses and frames if necessary.

Thankfully, she notes, her dental needs are covered by the Ryan White CARE Act (RWCA) program, the federal/state payer of last resort for income-eligible Americans living with HIV who can’t obtain coverage in other ways. “I needed dentures a few years ago, and Ryan White covered that,” she says.

Medicaid, she adds, requires her to have $600 worth of expenses each month that she must “spend down” to remain eligible for the program, but much of that chunk goes to billable hours for her RWCA case manager, which luckily Medicaid also covers. “So for the past five years, my spend-down has been covered.”

Kelly says that because her health care coverage has many moving parts—Medicare, Medicaid and RWCA—she’s especially grateful for her RWCA case manager, who helps her sort it all out. She urges other folks with HIV to reach out to their local HIV and AIDS service organization and/or RWCA administrative office for similar help. “You have to pick up the phone and find out what’s out there for you in terms of help,” she says. “You have to stay on top of stuff.”

And she’s thankful for that assistance, so she can focus on taking care of Terry—which now involves re-obtaining her driver’s license so she can use Terry’s car to more easily traverse the 20 miles separating their homes.

“We’re not together anymore romantically, but she’s still my soulmate,” says Kelly. “To this day, my grandkids call her Grandma Terry.”