Since the mid 1990s a class of drugs called protease inhibitors has dramatically improved the life-expectancy, and quality of life, for many people with HIV and AIDS. Tens of thousands of HIV-positive people in this country who were written off as terminally ill a few years ago are now leading full, productive lives on protease inhibitors. These drugs can be especially effective in children with the virus. But there is a catch. Today as part of our week-long series “The Survivors,” Sharon Lerner reports that an astounding number of HIV-positive young people either can’t or won’t take the drugs that could save their lives.
Maybe you’ve seen them in subway ads, those appealing teens who radiate vitality. If you didn’t notice HIV in the tagline, you might think they were advertising youth itself. Antiviral drugs have saved thousands of lives. HIV infection is spreading more quickly among young people than any other segment of American society. Yet largely thanks to these drugs, as many as 225,000 people under 25 are living with the virus. But there is a caviat to this success story – a big one.
Borkowsky: The drugs work great if you take them. But if you don’t take them, then they don’t work.
Doctor William Borkowsky heads the pediatric infectious disease unit at NYU Medical Center. He says about half his patients don’t take their meds – or at least don’t take them consistently. Either they refuse the drugs altogether, or they skip doses here and there.
Lina is one of Dr. Borkowsky’s patients. She is a quiet 17-year-old with light brown hair and freckles. Lina, who asked that her real name not be used, was infected with the virus at birth, and has been HIV positive her entire life. Recently she spent the night at Bellevue hospital. Dr. Borkowsky had just changed her regimen of pills and was testing her to see how long the medicine stayed in her blood after each dose.
Over the years, Lina has taken more than 12 different anti-viral drugs – or at least that’s what she says:
Lina: I remember the first one I took was a white clear liquid. It was real nasty They had to hold me down to take that ‘cause I was not taking it. Then after that there was a brown light beige one, then, no, before that one there was a white one with a blue stripe in the middle.
Doctor Borkowsky says Lina hasn’t stuck to any of these regimens. He frequently checks up on her with blood tests:
Borkowsky: She’s clearly ignored any attempts that I and the other physician the I assigned to her have made to get her to take medication keep her well. She tells me that she takes the medication. Her father tells me that she takes the medication. But it’s extremely clear to me that in the past couple of years she hasn’t.
But confront Lina with the idea that she’s skipped even a few pills, and she’ll flatly deny it:
Lina: Yeah I was taking my medicine, but they told me that maybe it was not resisting in my body, so… Only like once I didn’t take it, that’s cause I slept over a friend’s house and she didn’t know, so I was like, nah.
Borkowsky: I know in fact, she’s not taking anything.
Borkowsky: It’s not that she’s missing doses. She’s completely not taking anything. She probably doesn’t consider herself destructive, because from her perspective, she’s felt well all along.
Lina’s felt healthy for most of her life. She wants to be a professional wrestler, so she frequently works out. But this past year, for the first time she met the criteria for having full-blown AIDS. You wouldn’t know it to look at her. Even Lina didn’t know it. She felt fine. And Dr. Borkowsky decided not to tell her.
Borkowsky: I had tried scaring her another way, which is she had seen her mother die of central nervous system death. She basically became demented because of HIV and it was a terrible thing to see. I’ve said, you’ve seen the way your mother died and it was a horrible death. Is that something you would want for yourself?
Lina remembers what her mother went through- and she doesn’t want it for herself.
Lina: We had some nurse change her, take a bath for her, because she couldn’t do it herself. We had to feed her. She couldn’t write no more, because her hands was like, stiff. She couldn’t move them. But I still did not believe that’s going to happen to me.
Even adults with HIV can have a hard time staying on their medication. Many of the drugs taste awful. They make people nauseous, tired, headachey. Some pills have to be taken with food, others on an empty stomach. But even the side effects and the hassles don’t fully explain why so many infected teenagers resist treatment. Taking the drugs is a huge problem both for kids like Lina, who have grown up with the virus, and for the majority of HIV- positive teenagers, who are infected through sex or drug use. Alice Meyerson is a nurse practitioner at the Montefiore Medical Center’s Adolescent AIDS Program in the Bronx. She says one key to getting young people to take their meds is tending to their emotional needs.
Alice Meyerson: We have young people who come here who don’t know how to bathe. Their home situations have been so disruptive and so chaotic, they’ve never really sat down at a dinner table to have a meal. It’s very difficult to take medicines if you don’t have some kind of a schedule. For many of the young people, despair is a real issue. Depression is a real issue. Loss is a real issue. And if people are feeling hopeless, they’re not going to take medicine, because medicine is actually a symbol of hope. And what we have to do is change their attitude. Their belief that the medicines, as opposed to being a punishment are a symbol of hope and a symbol of life – and their best opportunity to live.
Perhaps, in Lina’s case, the memory of her mother’s suffering makes it hard for her to take her meds. Or maybe it’s because she has so much to think about besides taking pills. Her father is in and out of the hospital with psychiatric problems. Her brother is autistic. The family’s bills often go unpaid. But somehow, despite all the stress, Lina seems to be doing well lately. Dr. Borkowsky recently reduced the number of pills she has to take. As usual, she says she’s taking them. But this time, Dr. Borkowsky seems to believe her.
Borkowsky: At least for the first month, it’s clear to me that she’s taking it because I can see what’s happening to her. Her viral load which dropped down to just about undetectable within a month. At least she was taking it for the first four weeks. What will happen in the ensuing months is anyone’s guess
So Doctor Borkowsky waits, constantly checking on Lina to see if she’s keeping up with her pills. Others who have HIV or care for those who are infected wait too – for new drugs that are more tolerable and simpler to take. And even, someday, for a cure that finally renders all other medications unnecessary.
For WNYC, this is Sharon Lerner.*Not her real name