Living with HIV/AIDS: The Uninsured
Joyce Turner-Keller will never forget the day she was infected with HIV.
It was 1995 and she woke up at 5 am for an early morning jog around her Picayune, Miss. neighborhood. Turner-Keller, then 45, was a flight attendant and a minister, and that morning her parishioners were coming over for a church service. As she was returning from her jog a man in a police uniform suddenly leaped out from the bushes and pushed her through the doorway of her house.
Once inside, the man, who was white, told Turner-Keller, who is black, that she had stolen her job from a white woman. Then he raped her.
Although Turner-Keller was afraid of reporting the crime to the police, she informed her doctor, but was never given an HIV test.
Six years later, in October 2001, after being in a car accident, she developed a staph infection that spread throughout her entire body. A doctor performed a blood test and discovered Turner-Keller had full blown AIDS.
Turner-Keller didn’t have insurance at the time, but managed to find coverage. That can’t be said for everyone in the US living with HIV/AIDS.
Nationwide, Medicaid and Medicare are the two largest providers of health coverage for HIV/AIDS patients. But under current law, states use different standards to determine eligibility for public assistance, which means HIV/AIDS patients have very different coverage options based on where they live.
Turner-Keller, now 58, was quickly put on Medicaid, and Medicare. She also qualified for programs under the Ryan White Health Care Act, which provides $2.1 billion a year in funding for HIV/AIDS programs for low-income people when no other resources are available.
“I’m one of the blessed ones,” Turner-Keller said about her healthcare coverage, while speaking on the phone from her home in Baton Rouge, La. But she knows others with HIV who have virtually ended up homeless.
Health programs targeting HIV are based in urban areas. Once diagnosed, people from rural places with HIV have been forced to move to more expensive urban areas to access healthcare. For health reasons many HIV patients can’t maintain employment, so they fall behind on their rent. If they get waitlisted for a program like HOPWA (Housing Opportunities for Persons with AIDS), often times they end up on the street.
If Turner-Keller had been diagnosed with HIV alone, and not full blown AIDS, she would not have been eligible for Medicaid- a federally run program to support disabled people who cannot work- in Louisiana, because HIV by itself is not listed as a disability. But other states provide HIV waivers for patients to access Medicaid.
If New York HIV patient Victor H Benadava, 46, were in Louisiana he might not be eligible for the Medicaid benefits he receives. But in New York he is.
“New York has a great system,” Benadava said. “If you have HIV you will be taken care of.” He even knows people who have moved to New York to access increased benefits.
Benadava, who immigrated to the US from France in 1989, was diagnosed with HIV in 2000. At the time of diagnosis he was living in San Francisco, using crystal meth, and having unprotected sex with men.
“When you’re on drugs you think you’re superman and nothing will happen to you,” said Benadava. Aside from his HIV medication, he’s now been drug free for six years. Although he would like to work again, he’s afraid of losing his Medicaid benefits. So he volunteers at Gay Men’s Health Crisis, a New York organization that serves people with HIV/AIDS. He’s also a member of the Ryan White Planning Council of New York.
“There should be a program to allow people to work again without losing their benefits,” Benadava said.
Currently, the average healthcare cost for HIV/AIDS patients is $20,000 a year according to the HIV Cost and Services Utilization Study; and, according to an HIV/AIDS advocate in a Midwestern state who requested to be identified by his initials, E.H., it’s nearly impossible to meet those costs without public assistance.
E.H. offered the story of one of his clients to illustrate: he was working at a prominent hardware store making around $15 an hour when he was diagnosed with HIV. He had insurance coverage through his employer and was healthy enough to continue working. But He had a 30 percent co-pay on his medication, about $300 a month.
He didn’t always have enough money for the co-pay so many times he charged it to his credit card. He wound up owing $40,000 in medical bills and, with no hope of paying, he was recently forced to declare bankruptcy.
When Justin Goforth, the Director of the Medical Adherence Unit at the Whitman-Walker Clinic in Washington DC meets people living in Virginia with HIV, his only advice is, “have you considered moving?”
In Virginia, as in Louisiana, HIV is not considered a disability, so almost no HIV patients qualify for Medicaid or Medicare, Goforth and Erinne Loubier, the Whitman-Walker Clinic’s director of public benefits, said in a phone interview.
Instead, most receive health coverage for HIV through programs funded by the Ryan White Health Care Act.
But Ryan White programs only covers HIV/AIDS medication. Medication to treat conditions brought on by the disease, like diabetes or depression, are not covered, nor is medication to treat the often bad side-effects brought on by the HIV medication itself.
To qualify for a Ryan White program, an HIV patient’s income must fall below 200 percent of the Federal Poverty Guidelines, which in 2008 was $10,400 for a one-person household. So a patient, if single, must earn less than $20,800. If a patient earns more they won’t receive any assistance from the Ryan White program.
If a patient in Virginia, who does not qualify for the Ryan White program, does not have adequate insurance from his or her employer, premiums and co-pays can become very expensive.
“Quite a few people have had to sell their houses, quit their jobs, and get on welfare to access services,” said Loubier.
Other times, according to Loubier, HIV patients come to the Whitman-Walker Clinic sick after having been off their HIV medication for six months at a time. When they’re asked why they haven’t been taking their medication, they explain that they lost their job, which means they lost their insurance, and they didn’t have the money to pay for more medication.
But, according to Loubier and Goforth, the people that struggle the most in Virginia are the relatively healthy people with HIV. Because Virginia does not have an HIV waiver providing access to Medicaid, it is only available for people with disabilities. So many HIV positive people only receive substantial healthcare once the virus progresses to a stage where they are disabled.
“It’s a real catch-22,” said Loubier.