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More Than a Statistic: One Woman's Story About Losing ADAP Coverage

January 6, 2010

Across the U.S., many low-income people with HIV have seen their access to free HIV medications threatened in recent months. A number of AIDS Drug Assistance Programs (ADAPs) have had their budgets cut, forcing them to scramble to make ends meet. As a result, many programs have had to reduce the number of drugs they're able to provide, make their qualifications for enrollment stricter, or even place HIV-positive people on waiting lists for medications.

Although ADAP waiting lists were practically wiped out earlier in the 2000s, they've recently returned with a vengeance. According to the most recent ADAP Watch report in December, about 350 people are on waiting lists nationwide.

But what does this all really mean to the people who rely on ADAP for their HIV treatment, only to suddenly be let go from the program? Gina is one of those people; we caught up with her late last year to hear her story.


Gina's Story

Gina and her husband live in a small town in Arkansas (she preferred not to say which one, in order to remain anonymous). They have three children, ages 29, 22 and 15. As a family, they have already been through plenty. For more than 20 years, Gina and her husband were both serious drug users, particularly of crystal meth. "It runs rampant in our community," Gina explains. They also both used intravenous drugs and had unprotected sex outside of their marriage. "It's not something we're proud of, just a fact," Gina says, looking back.

For years, Gina's oldest daughter tried to get her mom sober. "She'd constantly say, 'Mom, you're killing yourself. Mom, please stop,'" Gina says. "But it got to the point where I felt I wasn't worth getting sober at all," Gina says. The last straw came in 2004: Gina became "involved with manufacturing crystal meth," as she puts it. Her oldest daughter called the sheriff. Gina was arrested, convicted and sentenced to 10 years in prison.

One might think that something like this could tear a family apart. But for Gina, her husband and her children, it was the beginning of a long recovery. "I'm so grateful to her," Gina says of her oldest daughter for turning her in. "Apart from being away from my family, it's the best thing that happened to me."

Prison was the turning point in Gina's life. While there, she got substance abuse treatment and job training. And in 2005, it was also where she was diagnosed with HIV. "Had I not gone to prison, I feel safe saying that we'd never have known we were sick," she says. "My daughter saved my life."

After she shared her diagnosis with her husband, he got tested and learned he was positive, too. Due to all of the risks they'd taken earlier in their lives, Gina said she and her husband don't know how or when they contracted HIV. "My husband's comment was, 'I would have been surprised if we weren't infected,'" Gina said.

Ultimately, Gina served only 27 months of her 10-year sentence; she was released early based on her good behavior. Now she's drug free and has gotten her life back on track. She and her husband are both in good health, despite being infected not only with HIV, but with hepatitis C and herpes as well. "We've been so lucky. We've never had a herpes breakout, we have normal liver functions, never had any signs of the HIV," Gina says.

Gina and her husband are both on HIV treatment. He started treatment in 2005 at his doctor's recommendation, taking a regimen of Combivir (AZT/3TC) and Sustiva (efavirenz, Stocrin). Gina's CD4 count was higher than her husband's when they were diagnosed, so she did not start treatment until 2007, when her doctor noticed her CD4 count beginning to drop. She's been on Atripla (efavirenz/tenofovir/FTC) ever since. (They've both had good luck wth their regimens: neither one has experienced side effects, they've both had undetectable viral loads for two years and Gina's husband's CD4 count is now almost 700 while hers is over 1,000.)

From the moment they each started treatment, Gina and her husband have both relied completely on the Arkansas ADAP for their HIV medications. And as of the beginning of 2010, their ADAP has cut them off.

Losing ADAP Coverage

When Gina first got out of prison in 2007, her husband changed jobs: His previous job had involved a lot of travel time, and with Gina back, he wanted to make sure the two of them and their children had more time together as a family. His new employer offered insurance -- but Gina and her husband were too afraid to sign up for it.

"We'd need to list HIV as a pre-existing condition, and we were afraid of stigma and discrimination if anyone found out," Gina says. They worried that her husband's boss would find out and he might get fired. Also, only a few of their family members knew about their HIV status, and Gina and her husband were afraid that word might spread quickly around their very small town. "It's not right, but we have to make our own choices, and we have to think of what's right for us," she says.

Her husband has since changed jobs again, and Gina currently works two jobs to help make ends meet. However, none of their employers offers insurance, making ADAP-based assistance critical. After all, HIV medications can be extremely expensive, and they worried they'd be unable to afford them on their own.

At first, ADAP coverage was not a problem for Gina or her husband: Due to their lack of insurance and low income, they were eligible for aid, and case workers helped them get set up. As recently as mid-2009, Gina had received a letter re-confirming her ADAP eligibility. "It said we were under 500% of the poverty line, so we qualified for ADAP," she said.

But things were about to change. Due largely to the nationwide recession, which left many HIV-positive people out of work and in need of assistance, the number of people enrolled in Arkansas' ADAP almost doubled during 2009, with no corresponding increase in funding. In response, officials changed the eligibility rules for new entrants: Instead of being under 500% of the federal poverty line, a person's income now had to be under 200% of the poverty line (meaning a person's salary could be no higher than $20,800 for them to qualify for ADAP).

Forty-nine people in Arkansas, including Gina and her husband, were suddenly no longer eligible for ADAP. In September, she received a second letter informing her of the change.

"It was quite shocking," she says. "I got a letter out of the mailbox from the state, saying that as of December 31 [2009], we'd no longer be covered.

"My husband doesn't handle bad news well. I waited until I double-checked to tell him. I was very disheartened. I called the doctor's office and spoke with the nurse -- she'd only just found out, too."

"The Lord brought us through 20 years of drug use," Gina says. "We turned our lives around, and now this."

Now What?

Since Gina and her husband received their letter, Arkansas' ADAP has been forced to further tighten its eligibility restrictions. It dropped the qualification level down to 150% of the poverty line, which will remove another 82 clients from the rolls, effective in March. According to Nathaniel Smith, M.D., M.P.H., the director of Arkansas' Center for Public Health Practice, the state is applying for a supplemental grant of $1 million, with the hopes that the extra money will let them avoid making even more cuts.

But despite a slowly improving economy, things still look bleak for ADAP and other HIV/AIDS service programs in Arkansas. Which means it's up to people like Gina to advocate on their own behalf in order to maintain her access to HIV medications. That can be a tall order, however. "I consider myself a 'want to be' activist," Gina explains. Despite "feeling imprisoned" because she's not out about her status, her anger has forced her hand: "How is our government going to help one day, then turn around and cut us off dry?" she asks. She has contacted all of her state senators and congressional representatives, hoping to stress to them how important medical care is for people living with HIV/AIDS.

Meanwhile, nurses with the Arkansas ADAP have been trying to help dropped clients apply for help from other sources. Gina and her husband's case workers have helped them find several programs to cover the cost of medications. "It took a total of three separate entities to cover our prescribed meds. ... It took several man hours and tons of paperwork," she says. She is now enrolled in several pharmaceutical companies' programs, including Bridges to Access, which helps low-income HIVers in the U.S. who don't have insurance to get access to drugs from GlaxoSmithKline (which include Combivir, Epzicom [abacavir/3TC] and Trizivir [AZT/3TC/abacavir]).

Gina recommends talking with a medical assistance program coordinator, such as an advocate or case worker, for help finding and enrolling in programs. "Basically, all pharmaceutical companies offer medication assistance, so it is a process of filling out apps and submitting necessary documents," she says. Applications generally include income verification, such as a 1040 income tax return, which is what Gina used.

Gina and her husband managed to secure continued access to their HIV meds, and they know how lucky they are. "We are very grateful for the wonderful support staff provided by our HIV doctor and their diligence to make sure we would not be without our necessary medications," she says.

"Sometimes events do seem overwhelming, like being dropped from ADAP, but there is still hope for those who truly seek it."

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This article was provided by TheBody.
See Also
2014 National ADAP Monitoring Project Annual Report (PDF)
ADAP Waiting List Update: 35 People in 1 State as of July 23
More Personal Accounts of ADAP


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