Holding on to Hope

In the last year an estimated 38,730 people were diagnosed with the HIV virus. Thousands more are infected and do not know it. Think it can't happen to you? Shaney McCoy is proof that it can -- but that doesn't mean she's waiting to die.

 by Megan Irwin
 published on Thursday, February 23, 2006

On the cover
Chelsea Kent / STATE PRESS MAGAZINE
AIDS H.O.P.E., a campus AIDS advocacy organization, meets in the ASU sexual health office to discuss prevention and AIDS education.
Chelsea Kent / STATE PRESS MAGAZINE
Shaney McCoy speaks to the HIV and Society class during AIDS week. McCoy was diagnosed with HIV in 1997 when she was 29. She says it took her years to feel comfortable talking about her disease in public. But, after dealing with misconceptions a former boyfriend and his family had about HIV, she decided to go public. "I realized I'm sick of always feeling bad," she says.
Chelsea Kent / STATE PRESS MAGAZINE
Student members of AIDS H.O.P.E. meet every Friday in Manzanita Hall.
Chelsea Kent / STATE PRESS MAGAZINE
A "safe sex" kit, filled with condoms and information on HIV testing.

Shaney McCoy is a middle-class white woman from Clearwater, Kan. Raised in a Christian home, she's played by the rules most of her life. She's doesn't drink, she's not sexually promiscuous, she doesn't touch drugs and she's certainly never shared needles with anyone.

But this blonde-haired, blue-eyed picture of wholesome Midwestern values does share something with drug users, street workers and many poverty stricken people around the world.

Shaney McCoy is HIV positive.

And she's not ashamed of it. In fact, she wants you to know it can happen to you.

"This is a virus," says the psychology senior. "It doesn't choose who it infects."

It's also true that some groups are more at risk for HIV than others -- and one of those groups is made up of young people.

About 50 percent of new HIV infections every year occur in people under 25 years old, according to the Kaiser Family Foundation. Young people frequently engage in risky sexual behavior -- and they generally don't get tested for the virus until much later in life when symptoms start to occur.

A 2004 survey conducted by ASU as part of a national health assessment underscored the risks students take. According to the study, only 38 percent of ASU students reported having ever been tested for the virus.

Yet, in the same survey, more than half of the students reported that they did not use a condom during their last sexual encounter. More than 57 percent didn't use a condom for vaginal intercourse, 76.2 percent did not use a condom for anal intercourse, and a whopping 96.1 percent did not use one for oral sex.

Freddy Roman, director of the ASU Sexual Health and Wellness Center and adviser for the student organization AIDS H.O.P.E. (Helping Others Prevent and Educate), says students don't get themselves tested for two reasons: because of the stigma surrounding the disease and because they think it can't happen to them.

"That's the biggest misconception. 'It's not going to happen to me. Not me. Not college students,'" she says. "We know better."

McCoy is proof positive that HIV can, and does, happen to healthy young people, even if they think they're doing everything right.

Spreading the word

Standing in front of more than 100 people in Professor Bert Jacobs' HIV and Society class, her blue eyes calm and her voice clear, McCoy talks about her disease frankly, as if it's never scared her and it's always been a part of her life.

But she wasn't always so well put together. In fact, when she was diagnosed in 1997, McCoy says she was pretty much falling apart.

She had been sick for almost a year and a half, showing all the textbook symptoms of HIV/AIDS -- extreme exhaustion, severe and constant yeast infections and diarrhea that went on for months, leading to malnourishment and hair loss. She says she knew something was wrong, but no doctor was able to tell her what.

"I just kept getting sicker and sicker," she says. "No one thought of an HIV test because I didn't fit the picture of what someone with HIV is supposed to look like."

Even as she was told not to worry, McCoy developed a painful hacking cough. She could never catch her breath. She ran dangerously high fevers. To make matters worse, she was still working full time to support herself and her husband.

In May of 1997 the couple moved to the Valley to be closer to her husband's family. Two weeks later, McCoy's illness got so bad that she ended up in the emergency room. Her family flew out from Kansas. She was so sick they didn't know if she would live, and still no one knew what was wrong.

McCoy says the doctor told her she had pneumonia and ordered a lung biopsy to find out how bad it was. McCoy and her family waited anxiously for the results. When the doctor returned later that day, he had good news: "The biopsy didn't show anything. It looks like you just have regular pneumonia."

McCoy breathed -- or struggled to breath -- a sigh of relief. But the feeling didn't last long. Within 15 minutes the doctor returned and asked McCoy's family to leave the room. He was wrong, he told her. The biopsy actually did show something -- pneumocystis pneumonia, a type of pneumonia that only develops in people with severely repressed immune systems. McCoy, who had worked in the medical field for years as a transcriptionist, knew what that meant. She had AIDS.

When her husband, Dave, arrived a few minutes later, she told him the doctor's diagnosis.

"He thinks I have AIDS."

Her husband's response was swift and devastating: "I gave it to you," he said.

She thinks now that Dave knew he was HIV positive the whole time they were married. He had told her that he'd been tested for the virus and nothing came up. She didn't question him further.

McCoy can't remember clearly what happened next. She wanted to tell her family, but Dave convinced her not to. He didn't want them to know where she'd gotten it.

"Are you going to tell them?"

"I'm going to need their support."

"Just don't tell them yet. We need to deal with this ourselves first."

McCoy didn't tell her family she was HIV positive for seven years.

Advances in treatment

In 1997, the year McCoy was diagnosed, doctors didn't know nearly as much about the disease as they do today. She remembers the doctor the hospital referred her to gave her a prescription for AZT -- the only HIV/AIDS drug he knew anything about.

"I had done pretty well through being in the hospital," McCoy says. "But when he handed me the prescription for AZT, I passed out. It was like that was when it was real -- to see this prescription for AZT with my name on it."

A few weeks later, she visited an infectious disease specialist who put her on 10 Viracept and two Comivir a day, telling her the cocktail should keep her healthy for a long time.

"That was the first time anyone had given me a glimmer of hope that I had any future at all," she says. "Just to hear 'a long time' was a step in the right direction."

And the drugs have kept her healthy. She is still on the same regimen, and eight years later her viral load -- which measures how much the HIV is replicating inside her cells -- is undetectable. When she was first diagnosed, it was off the charts. The medicine has also raised her CD-4 cell count from 68 to close to 700. CD-4 cells are the immune system cells attacked by the virus. The average person has about 1,000. Having fewer than 500 constitutes immunal compromise, and fewer than 200 CD-4 cells is considered full-blown AIDS. In other words, the medicine reversed her condition from AIDS to HIV.

But in 1997 when she was given that first prescription, all of that was in the future. She had only a scrap of paper, a few encouraging words and a husband she knew she had to divorce.

It took her a year to work up the nerve to leave the man who infected her, but that wasn't the end of her romantic life. McCoy says one of the biggest misconceptions about people who are HIV positive is that they can't have romantic relationships. In fact, she's had four.

Greg Shrader, director of ASU's Counseling and Consultation and co-professor for the HIV and Society class, says people who are HIV positive can have fulfilling relationships.

"We all take calculated risks every day. It's a very complex issue -- the issue of trust is always a big issue in any relationship, so that could be compounded when people are of different [HIV] statuses," he says. "The ability to share feelings is important because of all types of irrational fears that can get between them. The person with the disease can be very afraid of passing it on, and the person who doesn't have the disease can be afraid of contracting it. But people can have very fulfilling relationships in a variety of ways."

McCoy is currently in a happy, supportive relationship, but it took her a few tries to get to that point. After she left her first husband, she wound up married -- and divorced -- again.

"He was the first person I'd dated or had anything to do with after I found out I was HIV positive, and he was so supportive. That was so huge to me that I didn't even look at if we were a good match," she says.

The break-up of her second marriage helped her decide to return to school at ASU, where she became a psychology major and fell in love again. She was open about her disease, but her boyfriend's family and friends were wary. His friends would make jokes about not eating off the same plate, and one wouldn't allow McCoy into her house. His sister didn't want McCoy around her daughter.

She grew even more ashamed of her disease.

"It's horrible because you're ashamed of something you don't have any control over," she says. "It's not like you're doing something you're ashamed of. It's that you are something you're ashamed of."

Soon her shame turned to anger. "I realized I'm sick of always feeling bad," she says. "It took a year and a half of being really pissed off to decide that I was ready to start talking about it."

But before she could start talking about her disease in public, she needed to tell her family.

The hardest part

McCoy says lying to her family for years about her disease had started to take its toll.

"That was one of the hardest parts of the disease," she says. "I knew they'd be hurt I didn't let them help me through that time. There was never any doubt in my mind they'd be supportive. But to have to lie like that ..."

McCoy says she always thought when she finally did tell her family she was HIV positive it would be under perfect conditions. Instead, it was over the phone on Thanksgiving 2004. Her plans with her boyfriend had fallen through and she needed her parents.

Crying, she called her mother and the words just came out:

"Remember when I had pneumonia before? I lied to you and told you it wasn't anything serious, but it was. I'm HIV positive. I got it from Dave."

She says her immediate concern was letting her parents know that even though she was HIV positive, she was fine, her viral load was undetectable, and she still had a good life.

"My mom was so cool. Here I was trying to tell her, 'I'm fine, I'm fine,' and she told me, 'I'm so glad you're healthy, but even if that changes, we're here for you.' I just thought that was so strong of her. As a mom that must be so hard, to step away and say that we'll deal with it when the time comes. That was an amazing thing for her to say."

After that, McCoy was really ready to start talking. She started speaking to groups - any group that would listen -- about her disease. She often does public speaking with Max Siegel, a 21 year-old ASU psychology senior who is also infected HIV.

Siegel says he contracted the virus when he was 17. He had unprotected sex with one partner, and that's who gave him HIV.

"The first time we had sex, I did take out a condom, but he ignored it," says Siegel. "And I didn't assert myself further."

Greg Shrader of ASU Counseling and Consultation says unwillingness to use a condom is unfortunately common among young people who are sexually active.

"People can be very selfish that way, but it's a very caring act to make sure your partner's constantly wearing a condom," he says.

Siegel didn't find out he was HIV positive until a few months after his 18th birthday. He was starting his freshman year at the University of Arizona when he got a phone call from a blood bank he had just donated to.

"I kind of predicted I had HIV, just because I knew I had had unprotected sex," he says.

Worried that the person who had given him the virus might infect others, Siegel tried to get in touch with him right away.

"I called Friday when I found out and he didn't answer. Saturday I called and he didn't answer," he says. "By Sunday, I knew he could be infecting somebody else so I called and left him a voice message saying, 'I was just diagnosed with HIV. I'm absolutely certain you gave it to me. You need to go and get tested.'"

Siegel says he doesn't remember feeling angry, just "really stupid."

In his quest to make sure others aren't equally stupid, Siegel has become extremely active in prevention. He's a peer educator for Maricopa Integrated Health System, an HIV counselor of the Maricopa Department of Public Health, a board member of AIDS Alliance for Children, Youth and Families, and on campus he serves as a health advocate for ASU's wellness and heath promotions department and as president of AIDS H.O.P.E.

Siegel says the first step is to get people talking.

"People aren't open about it when they're diagnosed. And a lot of times they don't have symptoms, especially with HIV," he says. "Or stuff is happening, but they don't talk about it or can ignore it easily."

He does his best to convince people they must get tested. He says he's afraid the stigma surrounding HIV testing is preventing people from making safe sexual choices.

Shrader agrees.

"I think the stigma still lingers that if you're getting tested for HIV, you've been doing something you shouldn't have been, or that you're potentially gay," he says.

But according to Lorraine Brown, a consumer advocate for Maricopa Integrated Health System, young people can't afford not to get tested. She says the rate of infection in Arizona is rising faster than the state's population and she worries that people aren't bothering to get educated about the disease until they are directly affected by it. She says she tries to stress to people that it's important to know your status because no matter what the results, an HIV test can improve the quality of life.

"The question is: Are you taking an HIV test because you're preparing to die or because you're preparing to live?," she says.

Both Siegel and McCoy are dedicated to living. McCoy, in particular, has discovered a new sense of purpose through her disease. Around her neck hangs a delicate silver necklace. The word on the charm defines what keeps McCoy, Siegel, Shrader, Roman and Brown going: hope.

From her ears dangle earrings engraved with another message -- "well behaved women rarely make history." It's a saying that, eight years after her diagnoses, through the failed relationships and shame, finally defines this woman who is able to stand and talk about her disease without fear, without guilt.

"All my life, I was trying to be well behaved. I thought if I was ladylike and did all the right stuff that people would treat me right. Well, I found out that doesn't always work," she says. "Now I just feel I want to make a difference -- in HIV awareness and life in general -- however I can. I just want to say what needs to be said, regardless of how people take it."

Megan Irwin is the editor in chief of SPM. Reach the reporter at megan.irwin@asu.edu.


INSERT

Spotlight on Science:
New research gives reason for cautious optimism

In the 25 years since it was first discovered HIV has proved a tough adversary for medical researchers.

But a team of researchers, lead by ASU biologist Tsafrir Mor, has given the scientific community something to hope for. Although it is still in the preliminary developmental stage, a vaccine Mor's laboratory has in the works shows promise and just might be what the HIV research community has searched for all these years.

"Maybe I'm young and foolish, but I don't succumb to pessimism very easily and I think it's too important of a war to say that [a vaccine] will never happen," says Mor. "You cannot think simplistically. It'll be a combination of approaches and therapies that will work for this disease rather than a single silver bullet."

HIV lives in and is transmitted by mucosal fluids -- semen and vaginal/anal fluids, for example. It enters the body through these cells, and in order to infect a new person must pass through a very strong mucosal barrier constructed very much like a brick wall. Mor says the virus must actually pass through these "bricks," or cells. It cannot go in between them.

Once the virus has penetrated this wall it attacks the immune system specifically, the systems CD-4 cells. CD-4 cells characterize an important cell called the T-cell. Think of the immune system as an army constructed to protect your body from invaders -- T-cells are the soldiers who sound the alarm when an enemy is approaching. By destroying the CD-4 and T-cells, HIV opens the immune system up to virtually any foreign attack.

HIV soon begins reproducing itself in the blood stream and also inserts itself into the genome of the carrier's cells. It's this final action that makes the disease truly deadly -- the anti-viral medications given to HIV positive patients have successfully managed to fight the free-agent HIV cells in the blood stream, but are unable to destroy the HIV embedded in the gnome of a cell.

"Even if you eradicate everything that resembles the virus, the virus is still there," Mor says. "And it will stay there forever and ever."

So he doesn't even want to give it the chance to get to that point.

Instead of attempting to fight the virus once it's inside the bloodstream, Mor says his vaccine will stop it from penetrating the mucosal wall. He says the virus finds a way through the membrane by latching onto receptor cells that pass through using a mechanism similar to a revolving door.

"The receptor takes the virus in and it's taken through the length of the cell and released on the other side," he says. "These cells are not infected by the virus. They're just a conveyor belt."

Mor says the vaccine will stop the HIV virus from ever getting on the conveyor belt, so it cannot pass the mucosal membrane and infect a new person.

Mor says he's cautiously optimistic that his research will lead to a vaccine.

"I'm not often that optimistic about the research I'm conducting. I'm always thinking that things could fail," he says. "But I have a good feeling. Too many things fall into order."

-- M.I.


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