HIV on the Homefront

Inside the living rooms and hospital rooms of Knoxvillians still dying of AIDS—and the many more who live with HIV and hope

Ed White, now 47, remembers coming out in 1990. "I hadn't known anyone who died of AIDS before that," says White, a longtime independent activist who espouses causes like gay rights. "But then I started noticing in the gay community, you would hear, ‘So-and-so has AIDS.' Then you wouldn't see them ever again, and six months or a year later, you would find out they had died. As soon as you heard someone was diagnosed, they disappeared."

A few years later, around 1994-1995, medical psychologist Jeannie Gillian, a California transplant, conducted a doctoral study at the University of Tennessee on perceived hope among HIV-positive and AIDS patients, most of them area men. (HIV stands for human immunodeficiency virus, which causes AIDS by finding and attacking a type of white blood cell—T cells, or CD4 cells. The Centers for Disease Control considers a person to have AIDS when their T-cell count falls below 200). She's still holding on to the scrapbook pages with loving photos of her study subjects and her own son Bobby, who was diagnosed in 1992 and died in 1997. Most show an image of each person's final days—many skeletal figures, some with Kaposi sarcoma lesions, some wheelchair bound. Fifteen of the 28 who completed the study died within her 24 months of research. One of her subjects summed up his case this way: "AIDS is not a manageable disease. Everybody who gets sick dies. The people who survive are statistically insignificant."

That was then. This is now.

With the support of her husband Vernon and son Bobby, who lived long enough to see it open, Gillian founded the Hope Center (which she now directs) at Fort Sanders Regional Medical Center in 1996. It helps bridge the gap in mental health care and supportive services for individuals with HIV/AIDS in Knoxville and 18 surrounding counties. Many of her members are still living after a decade or more with HIV, and today's HIV-positive East Tennesseean is just as likely to be like David Wynn, who lives in Maryville and was diagnosed nine years ago. He's on his second regimen of anti-retroviral therapy—Norvir, Truvada, and Reyataz, three pills a day. He works an active job in building maintenance, keeps his stress to a minimum, and his weight "at a pretty good standing. I do a lot of hiking. I should be going to the gym more... I walk with my dog, often." He goes to the infectious disease doctor just once every six months, and his viral load has been undetectable for six years.

Like the majority of HIV-positive people, Wynn looks like a regular guy, not a sick person. And the ordinary appearance of someone who's HIV positive is just one thing that's altered radically in the past 12 years, dating precisely back to the introduction of protease inhibitors in 1996. They almost literally brought some AIDS patients back from the brink of death (nicknamed "The Lazarus Effect"), and medical advancements, including 29 different drugs now on the market, have been clipping along since. They allow many people with HIV to delay the onset of AIDS and live longer, much longer in some cases—10 years, 15, and no medical studies to the contrary, who's to say it won't be for decades more?

The number of people still alive in our state who have an HIV diagnosis increased dramatically from 2001 to 2005—9,166 to 11,867, as did the number living with AIDS, from 5,021 to 6,133. The population of males living with HIV/AIDS in Tennessee increased 21 percent over that time period, from 7,505 persons in 2000 to 9,046 in 2004, and the number of females with ongoing HIV/AIDS conditions has increased even more quickly—26 percent—in the same time period, from 2,399 persons in 2000 to 3,023 in 2004. More people with HIV infections in the state are living longer.

That's the good news. The not-so-good news is that the number of new HIV/AIDS cases in Knox County has stayed about the same in the last few years of data available from the Tennessee Department of Health, ranging from 55 to 63 each year from 2001-2005. In 1990, there were just 19 newly diagnosed cases in Knox County, and a peak of 109 in 1994. And heterosexual contact has emerged among black and Hispanic populations as the leading exposure category, accounting for 44 percent and 45 percent of all newly diagnosed cases for those two populations, respectively. Blacks accounted for a full 51 percent of new diagnoses in the state in 2005, though they make up about 16 percent of the population, making their case load eight times that of whites.

Minority death rates from AIDS are also much higher than the white average in our state. In 2004, an estimated 610 people infected with HIV/AIDS died in Tennessee, and blacks accounted for 71 percent of the number. The state department of health theorizes that the higher mortality rate might be associated with greater poverty levels among blacks in Tennessee, or even increased risk of hypertension. But it also notes that since the introduction of powerful anti-retroviral therapies dramatically altered the progression from the onset of HIV to the development of AIDS, "AIDS incidence and deaths, from 1996 on, provide a measure for identifying and describing the populations for whom treatment may have not been previously accessible or effective."

White, who also serves on the University of Tennessee's LGBT Commission, sees this as just a variation on the '80s theme of AIDS as a "gay man's cancer." "The more things change, the more they stay the same," he says. "It's still a disease that primarily hits underserved populations—gays, street people, women who are vulnerable in their relationships. In a lot of ways it's a social barometer of tolerance and inclusion in our society."

In Knoxville, HIV-positive individuals say they are thankful for the medical advancements, but are still wary of people who judge. They'll tell you about poor treatment of their sickest—and how they grieve over the East Tennessee silence that still enables this virulent virus.

How Did You Get HIV?

Sandi Perry knows just when it happened. She was a licensed practical nurse looking after an AIDS patient in the hospital. She was trying to empty a catheter; the patient was having a bad reaction to Demerol and was clawing at an arterial draining tube. Somehow he managed to pluck it out. His blood was squirting everywhere; Perry knew if she didn't stem the tide he would bleed to death. While she was trying, somehow his blood splashed in her eyes.

She rebelliously refuses to tell most people that, though. "It's a pet peeve of mine," she says. "I don't tell how I got HIV because somehow people think it's not as bad because I didn't get it having sex or from a drug needle. They feel sorrier for me. But just because somebody was in a relationship with someone they shouldn't trust, or got it from sex, doesn't make them a wrong person and me a right person. It just is what it is."

At 53, Perry is in a fast-growing group of people nationally living with HIV diagnoses—people over 50—but most of the other 50+ females contracted the virus through heterosexual sex, followed distantly by injection drug use.

Another LPN in Knoxville, Angela (who prefers not to reveal her last name for publication, fearing the reaction of her neighbors), is a little young for the category at 46, but she understands fully how a woman, even an informed one, might end up with HIV. "First of all, a woman's anatomy makes her more receptive; her genitalia are internal, and she's got more mucosal lining—that's a lot more immune cell surface for the virus to attach to," she says.

She also scorns her medical training. "Back in nursing school in the late '80s, we spent a grand total of four hours on the entire subject of HIV/AIDs," she says. "There was a pronounced lack of education in this area."

Angela contracted HIV in 1992, when she was 29, and says that even a strict knowledge of how the virus is transmitted may not have helped her then—the same way it might not affect the actions of women in the area today. "It has to do with emotional issues, self-esteem, and denial plays into it," she says. "A lot of time women, they want to please their partner, and so if their husband or boyfriend doesn't want to use a condom, they won't insist. Maybe they're trying to hang on, or they know that insisting will put them at risk emotionally or physically. They're just trying to please that man, hang on to him. It's that attitude that a sorry man is better than no man at all."

She participates as a speaker at educational seminars for health professionals and others, a member of several local HIV/AIDS support groups, and a nurse at an annual camp for others who are HIV-positive or have AIDS that's offered through a group called Strength for the Journey. "From what I see, this reluctance to insist, this fear, is not restricted to black, or white, or Latina women," she says, "but it's a real culture thing in the South. There are too many things that people are hesitant to talk about: condoms, safe sex, whether a partner is being faithful. There's a lot of fear, and that leads to more infections."

Another surprising group that's at risk is the 60 and up crowd. "Yes, people who are in their 70s are still having sex!" says Gillian. "I've seen many Hope Center members in their 70s in recent years. They think since they can't get pregnant there's no risk."

But there is a risk of contracting HIV from heterosexual sex with men who have waited all their lives to feel free to pursue a bisexual tendency, and from having sex with people who have no idea they're infected. "The virus has mutated to the point now where some of the symptoms are not as dramatic, maybe sinus infections, swollen lymph glands," says Gillian. "If you didn't know you'd been exposed, you might miss them, at least at first."

Nationally, between 1990 and 2005, the number of AIDS patients who were 50 or older increased more than 700 percent. Older people by definition don't do as well with the virus, either, says Gillian. "HIV is going to be harder on you if you're older, and the older patients tend not to live as long. The people I see who die the quickest, though, are the ones who just haven't been able to find a way to live in a healthy style away from drugs and alcohol. The drugs and alcohol, we find that's the biggest challenge. If you have drug and alcohol problems with HIV, chances are the medications aren't going to be working as well and chances are they aren't going to be taking them as regularly."

Alcohol and drug abuse put people at higher risk of HIV infection, too, says Gillian. "I have people tell me, a man or a woman, ‘I went to the party and I drank and I don't remember much, but now I have HIV.'" And there's also the HIV transmission that's the result of injection drug use exposure, which infected around 90 of the people living with HIV/AIDS in Knox County each year between 2001 and 2005.

Even a nursing home can be a hotbed of infection. "Men and women there are going room to room having sex," says Wynn, who travels with Dr. Gillian to alert nursing home facilitators to the risks and to educate staff members about treatment for AIDS patients. "Nobody knows what anybody has, but they're thinking, ‘We're safe, we can't get pregnant.'"

And any of these risk factors can be compounded by people's reluctance to get tested for HIV.

"Women don't get tested because they know they're going to be labeled as promiscuous or as a drug user somehow," says Angela. "Or they're worried they'll make their husbands mad, or that somehow someone will find out and treat her children badly, even if they're not also infected."

Some reluctant test-takers don't want to reveal their homosexuality, or have people think they're gay when they're not. In other cases, not getting tested is just a manifestation of human nature, the capacity for denial that is so strong we dissociate from our own actions in order to survive in our culture. "One African-American gentleman told me during my research that he'd been tested as part of a military application and got the results in the mail," says Gillian. "He said, ‘I don't know how I did this. I dropped the letter in the trash can and went on with my life.' He repressed it, and when he later had other symptoms and remembered back, he had this horrible guilt to deal with, wondering, ‘How much of this did I pass on?'"

Any reluctance to test after high-risk behaviors doesn't just increase transmission of HIV, it makes those who are HIV positive progress to AIDS much more rapidly. "If you know what you have quickly, there are many more options for you," says Perry. "The longer it goes untreated, the more damage to your immune system, lymphatic system, and organs. Some of the treatments are very harsh; if you're in a weak state, you can't handle them." In Tennessee in 2004, a whopping 72 percent of the people who tested positive for HIV and progressed to AIDS had been diagnosed with AIDS within three months of first learning of their HIV infection.

Some of those who end up at Fort Sanders Hospital live on the streets, says Gillian. "I don't know about other cities, but we have our fair share of homeless come to the hospital. And it requires the entire hospital team, all of us, working together, to come up with what they need—particularly because we don't discharge people to the street. We come up with some kind of a solution. It includes getting clothes, maybe medicines they need—some people come in with absolutely nothing."

Life Is Never the Same

Other people, especially young people, are contracting HIV because they just don't think it will be that big of a deal. "I've actually had some people I'm acquainted with who just totally dismissed it," says Perry. "They're like, ‘Why wear condoms? They can treat it. It's just a couple of pills.'"

But a couple magic bullets is so far from reality it's laughable, says Perry. "It's not easy. I feel bad every single day. I take 10 pills every day. Not all are for the HIV, a lot are for things I have that are related—peripheral neuropathy, with my feet and legs, histoplasmosis, which I had and it damaged my retinas. I have to see a GI, because I've got really bad reflux, and a colon issue.

"I feel bad a lot of the time. I have a lot of nerve pain. It's terrible. You get like a hot poking pain, a stabbing pain, and it's just random. I've been really lucky—I got Social Security disability after I had pneumonia in 1998, and I'm on Medicare, before that, Medicaid, but I'm one of the lucky few who has not had to scramble for meds."

Depression is another huge issue for those who are HIV positive; according to the AIDS Community Research Initiative of America (ACRIA), it occurs in HIV participants more than 13 times more often than it does in the general population.

And while the situation has improved somewhat in the previous decade, one source of that depression is discrimination, alienation, and just pure rudeness, coming from portions of society as varied as neighbors, landlords, medical workers, and employers. "When we do educational workshops and people who are HIV positive share their experiences, it always surprises the audience members to hear stories that sound like they came from the 1980s—abandonment, discrimination, ignorance in general," says White, who performs a one-man play, The Caregiver, at a Hope Center workshop titled, "The Human Perspective." "The treatment ranges from cold shoulders to outright disownment—that's more when the person is homosexual, but it can happen across the board.

"One of the things that always gets brought up, people with AIDS will tell you they are frequently asked how they got it. People want to know where to put you, ‘deserving' or ‘not deserving.' In this area, it still has a lot to do with religion. People are still judging based on religious dogma—caregivers sometimes, even nurses and doctors."

Gillian, though, would really prefer to think that there's not a deep-seated religious bias against HIV and AIDS, and the Hope Center does partner with various churches and the Samaritan Ministries, a faith-based AIDS Service Organization founded in 1996 that operates under the auspices of Central Baptist Church of Bearden in Knoxville. "I don't want to blame it on the Bible Belt, because in that case we wouldn't be able to change," she says, "and that would mean we have no hope."

Most of her experience with people judging or shunning happened in the late '90s, says Perry. "But recently I had a run-in with a GI doctor, who'd been my doctor forever. He knew I was HIV positive, but this time he decided to grill me about my HIV status. How did I get that way? What did I do? I was crying, I didn't understand. He really hurt my feelings."

Almost a decade earlier, Perry had an experience where a tech at her eye doctor read her sign-in form and saw she was HIV positive. "She was like, ‘I didn't know what I was going to come in here and find—I was thinking a big lesbian drug addict!"

Angela, too, has had a dental hygienist wear protection to do a bite-wing X-ray on her teeth. "She was decked out in an outfit just short of a hazmat suit, and even had paper booties on. I thought, ‘That's a little over the top. Bless her heart.' I almost felt sorry for her—she must have been petrified. Later, I told some friends at one of my support groups how bad that made me feel, and they were all joking, ‘Why didn't you just cough on her?'"

Some of the poor treatment can't be laughed off as readily, even by those determined to stay upbeat. "I haven't had any bad medical experiences myself, but I have been a caregiver for those suffering from AIDS and they are treated differently—the nurse will stand four feet away and practically throw them their meds," says Wynn. "And the last nursing home Jeannie (Gillian) and I went to, a guy with AIDS had actually been there for three or four weeks and the room had not been cleaned the entire time. There were five bags of trash, food trays stacked up because the cleaning people didn't want to come in. The nurses wouldn't come in, they just left his meds at the door. His family didn't live near here, and they finally moved him to Nashville, and he died very soon after." Since that time, Gillian notes positively, the facility's director of nursing has made every attempt to educate her entire staff and assure that they started offering proper care.

Dying With Some Life Left

Part of the Hope Center's credo goes like this: "It is the belief in the possibility of acceptance, living with HIV or AIDS, dying with some life left, and being at peace."

For his part, Wynn volunteers as a caregiver/support person for hospital patients with full-blown AIDS, plays Santa at the Hope Center's holiday party, and stays close to family and friends. He spends little time being bitter about his positive status. "I'm more angry at myself for trusting that other person, but I don't dwell on it," he says.

Nor is his HIV status an issue with potential dates. "I am very honest, but I'm not really looking right now. If the right one comes along, great, but just now I don't have enough time to worry about it!"

Angela has also dated some, in what she says are healthier relationships than she had with the man she's pretty sure infected her. She's satisfied that although they eventually broke up, she and her boyfriend parted over "normal issues, religion and politics, nothing to do with HIV or mistreatment." She enjoys time with her adult daughter, and volunteering with HIV/AIDS education groups, taking walks.

When you're living with HIV, it's absolutely essential to laugh at the absurdity, says Perry. "If you can have a sense of humor about sitting on the toilet and throwing up in the trash can, it helps you get through it easier."

She also appreciates a good joke every now and then. "A lesbian friend of mine and I were talking about how some fundamentalists believe HIV/AIDs are a judgement from God, warning you that you're doing wrong," she says, "You know, homosexual women have probably the least risk of transmitting HIV sexually. My friend was like, ‘I guess that makes lesbians God's chosen people.'"

Perry, who's been through scads of treatments in one decade of being HIV positive, and now takes Intelence, which has been on the market just six months, says she'll keep wrangling with her health if for no other reason than she's been put in a unique and believable position to preach safe sex. "Always use condoms for intercourse, always," she says. "My fiance is HIV negative, and we use condoms, practice safe sex. He knows if I'm bleeding, do something else, don't grab me."

Perry says it's part her nursing background, part being able to speak from experience that makes her so blunt. "I'll start talking penises and vaginas and my 14-year-old granddaughter just rolls her eyes. But I think whether you're talking about HIV or not, education is key to a lot of our issues today."

As for her long-term prospects, "I am at higher risk for AIDS and other serious complications," says Perry. "But I've made it my mission to learn all I can about how to take care of myself. I don't see myself dying. I have way too much to talk about for that."

Wynn seconds that motion. "I see myself living to about 90," he says, "and the HIV probably still won't be what kills me."