Treatment Gives HIV's Long-Term Survivors Hope, But Takes A Toll : Shots - Health News AIDS has been around for long enough that some people have lived for decades with the HIV virus. But as they age, survivors face new challenges as complicated medication regimens have their own impact on health.
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Treatment Gives HIV's Long-Term Survivors Hope, But Takes A Toll

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Treatment Gives HIV's Long-Term Survivors Hope, But Takes A Toll

Treatment Gives HIV's Long-Term Survivors Hope, But Takes A Toll

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  • <iframe src="" width="100%" height="290" frameborder="0" scrolling="no" title="NPR embedded audio player">
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AIDS has been around long enough now that some people have lived much of their lives infected with HIV. Long-term survivors, as they're called, take medications that are far less toxic than those in the early days. Still, HIV is a virus that doesn't like to be ignored, and even when controlled, can exact a toll. Sarah Varney has this story of a woman in Albany, New York who's lived with HIV for 26 years.

SARAH VARNEY, BYLINE: Crystal Roberts-Lee has lived a tough life, and HIV has, in some ways, been the least of her worries. She was addicted to heroin and cocaine. Her daughter went to prison. A scorpion tattoo crawling across her neck marks the day her husband died from AIDS. Now, at 59, Roberts-Lee is the healthiest she's ever been.

CRYSTAL ROBERTS-LEE: After I take my medicine, it's just a normal day for me. I go on with whatever I have to do. If I'm just out and about, I feel like I'm just like the next person.

VARNEY: Roberts-Lee first learned she had HIV in 1986. She was working as an orderly at a hospital in Albany when she started getting sick. A nurse suggested she get tested for what was then a novel virus that was swiftly killing gay men and drug users in San Francisco, Los Angeles, New York and other cities. Roberts-Lee isn't sure how she became infected - either through the drugs she shot into her arms or her boyfriend, who it turned out was positive.

ROBERTS-LEE: At the time, all my friends were dying. They were just dropping like flies, people I went to school with. And so I was really scared because I wasn't ready to die. I wanted to raise my daughter and see her grow.

VARNEY: She started on AZT, one of the earliest treatments, but couldn't bear the nausea and dizziness. There were other treatments, including one which attacked her liver so violently she landed in a hospice house. She was 98 pounds, all cheek bones and dangling, skeletal fingers.

ROBERTS-LEE: That's me in the chair. I look like bones.

VARNEY: Standing in her bedroom, Roberts-Lee holds a photo from her time in hospice. It's a chilling reminder of the power of the virus living inside her. She's been on a different regimen for the last 10 years or so, seven pills every morning, some for HIV, others for blood pressure. It's a pain to crush them up and take them, she says. She's worked hard to get her 59-year-old body in shape and she doesn't like the daily reminder that she is anything but a vital and fit woman.

ROBERTS-LEE: I'll do anything to distract myself. I'll find something to do. Turn the TV on sometimes and see what the weather is and then I'll slowly go back to it.

VARNEY: For all the marvel of today's drugs and the bus stop posters promising a pill a day takes AIDS away, HIV is a punishing virus, even for those like Roberts-Lee whose viral load is undetectable.

DR. RALPH LIPORACE: We know that people with HIV infection have pre-mature aging.

VARNEY: Ralph Liporace is an HIV specialist at Albany Medical Center and past director of the center's HIV research program.

LIPORACE: Not that their hair is getting gray like mine. That's normal aging. But what we see is an aging of their physical system such that they have increased heart disease, they have increased neurologic problems.

VARNEY: Liporace says while many of his patients no longer go on to develop AIDS, they often have the health problems of much older people - early onset dementia, arthritis, heart attacks at age 40.

LIPORACE: Simply put - this chronic immune activation causes increased inflammation and increased inflammation causes damage to all organ systems.


UNIDENTIFIED MAN: ...through the overnight...

VARNEY: It's lunchtime at Albany Damien Center, a local gathering spot for those with HIV. People carry trays of steamed broccoli and barbeque chicken into the double parlor to sit and watch the local news.

Most here are older and face competing realities. They're aging more quickly into futures they figured they'd never have. The center's program manager, Dorothy Nangle, says she's bringing in doctors to talk about diabetes and heart disease, and at the same time trying to get people here - many never graduated from high school - to plan out their lives.

DOROTHY NANGLE: I always say to people this is a fabulous time in your life. It's actually a time you can look and say, what do I want the rest of my life to look like?

VARNEY: For Crystal Roberts-Lee that future looks like taking care of her granddaughter, a four-year-old firecracker that keeps her on her feet and keeps her running forward.

For NPR News, I'm Sarah Varney in Albany.

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