When Ruben Bermudez, 31, found out that he had HIV more than a decade ago, he didn't want to take his medicine. He went on treatment for a few weeks, but said the intensive pill regimen made him feel dizzy.
He stopped treatment and tried to ignore the diagnosis, moving to Florida from Washington in pursuit of sunshine. In 2008, he learned that one of his best friends died of a brain tumor that couldn't be treated because his immune system has been debilitated by AIDS. Bermudez realized that his only chance at a relatively healthy life would depend on taking pills daily.
"With his passing I decided to wake up and take control of my health and my life," Bermudez says. "Because at that point my HIV was spiraling way downhill. I should have been dead."
But the pills for HIV that he's taken daily since then have come with a hefty price tag. Monthly HIV treatment regimens range from $2,000 to $5,000 — much of it for drugs. With the life expectancy for HIV patients increasing, the lifetime cost of treatment in today's terms is estimated at more than half-million dollars. And while many people qualify for public assistance programs, staying eligible for support is a constant balancing act.
According to the Centers for Disease Control and Prevention, around half the people diagnosed with HIV in the U.S. don't receive regular health care. Of those who do, 42 percent receive Medicaid and 24 percent are uninsured.
People who are uninsured can still qualify for health services through the federally funded and state-run Ryan White Care act, which pays for medication through the AIDS Drug Assistance Program, or ADAP.
While the Obama administration released $79 million in funding for ADAP last week — eliminating waiting lists in 10 states — the program's support has fluctuated with each annual congressional appropriations process.
Each state has an eligibility process to receive ADAP support, and Murray Penner, with the National Alliance of State and Territorial AIDS Directors, explains that in many places the income cut-off limit for aid is $22,000 annually.
"Individuals that are receiving their drugs for free through a program like ADAP or through Medicaid," he says, "are really concerned about earning more than what would then be eligible for that program."
For Bermudez, making sure he remains eligible for assistance with his HIV care has meant refusing offers of full-time employment and raises.
Still, he's grateful to have the support. "I'm really lucky to have those programs available to me, because without them I probably wouldn't — I would not — take medication," he says. "Because I would not be working just to pay for my medication. I probably couldn't even afford it."
Medicaid's recent expansion under the Affordable Care Act may also make it easier for people living with HIV to pay for care, and many hope that with patents expiring on vital drugs in the coming years, cheaper generics may bring down the price.
Expanding access to care has implications beyond treating the virus in the person – public health experts say it's also critical to stopping the disease from spreading. People taking AIDS drugs are much less likely to transmit the virus to someone else, which ameliorates the long-term burden to public assistance programs.
"When we can avert HIV infections," says David Holtgrave, a professor at the Johns Hopkins Bloomberg School of Public Health. "We're not only saving lives. We're also saving dollars as well."
Bermudez, whose health has stabilized since he started taking medications four years ago, hopes to eventually be able to buy private insurance and pay for his drugs himself.
"Hopefully in the future it would available at a reasonable cost for everyone that is working, so that they won't have to do the things that I had to do — to quit jobs or to lie about income or just cover it up or anything like that," Bermudez says. "Because it has to be a way of life that's comfortable for everybody."
AUDIE CORNISH, HOST:
The International AIDS Conference wraps up today here in Washington. All week, the discussion has focused on getting people treatment from the moment they're infected with HIV. Studies show that can improve health and dramatically slow the spread of the virus.
The treatment is expensive. In the U.S., only about half the people living with HIV can afford it. The federal government is trying to make treatment more accessible, as we hear from reporter Jessica Camile Aguirre.
JESSICA CAMILLE AGUIRRE, BYLINE: Ruben Bermudez didn't want to start taking HIV medication. He was diagnosed with the virus in 1999 when he was only 18 years old. After a few weeks on treatments that he said made him sick, he stopped taking them.
RUBEN BERMUDEZ: I was a young guy. I was having fun, going and partying, going to clubs, living a normal teenage young adult life and that's all my focus was.
AGUIRRE: But, when his best friend Vaughn died with AIDS after ignoring his HIV diagnosis, Bermudez decided to go on treatment. He started taking medications in 2008, which were paid for through Medicaid and something called the AIDS Drug Assistance Program, or ADAP, a state-run program funded by the federal government.
BERMUDEZ: I'm really lucky to have those programs available to me because, without them, I probably wouldn't - I would not take medication because I would not be working just to pay for my medication. I probably couldn't even afford it.
AGUIRRE: Almost half the people living with HIV who do receive regular care get it paid for through public assistance programs. That's welcome relief for people like Bermudez because treatment regimens run anywhere from $2,000 to $5,000 a month. But to qualify for assistance, you have to earn below a certain amount annually and many say those thresholds are too low.
Murray Penner is with the National Alliance of State and Territorial AIDS Directors.
MURRAY PENNER: In many states, income eligibility is about $22,000. It's two times the federal poverty level and so, if you make more than that, you would no longer qualify for ADAP.
AGUIRRE: The cutoff leads many people like Bermudez to limit their incomes in order to maintain health care.
BERMUDEZ: One cosmetic company that I worked for - at the time, they were offering me full time hours and, because of the hours, I had to refuse it because I knew that would put me over the bracket to receive free medicine.
AGUIRRE: Problems qualifying for Medicaid aren't unique to people with HIV, but because AIDS drugs are so expensive, access to insurance is even more important. ADAP is meant to cover people who make too much money for Medicaid, but it's faced funding shortages and gaps since it was created in 1990.
ADAP needs to get funding re-approved by Congress every year, though the Obama administration recently released $79 million of additional money for the program.
Medicaid's expansion under the Affordable Care Act may also make it easier for people to pay for the medication they need and many hope that, with patents expiring on vital drugs in the coming years, cheaper generics may bring down the price.
Caring for people with HIV goes beyond treating the virus in the person. It's also critical to stopping the disease from spreading. David Holtgrave studies public health policy at Johns Hopkins University. He says people taking AIDS drugs are much less likely to transmit the virus to someone else.
DAVID HOLTGRAVE: When we can avert HIV infections, we're not only saving lives, we're also saving dollars, as well.
AGUIRRE: And, in the long term, that eases the burden on public assistance programs. As for Ruben Bermudez, who started taking medications four years ago, he's been committed to staying on treatment and, with his health intact, he hopes to eventually be able to buy private insurance and pay for his drugs himself.
For NPR News, I'm Jessica Camille Aguirre.
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This is NPR News. Transcript provided by NPR, Copyright NPR.