The Enduring Epidemic
AIDS is still here--and the job of providing proper care for people with AIDS remains just as difficult.
By Betty Bean
JUNE 22, 1998: When Wade Burns went to the nursing home, his doctor told him he would die in one of two ways: He'd go in his sleep and never know when his heart gave out, or he'd start to gasp for breath until he couldn't breathe anymore, at which time he'd get shot full of morphine and be out of it. He preferred the first option.
Three weeks after he left his home at the Graham, an East Knoxville apartment house dedicated to housing PWAs (people with AIDS), Wade got his wish and died in his sleep with long-time AIDS caregiver Julia Tucker holding his hand"talking him out"as she has done with many others, including her own son, Bill Powell.
Jeff Simmons and Larry Helton, Wade's upstairs neighbors, observed a traditional Graham ritual and hung the funeral wreath off the front balcony, its long black streamers trailing down to the top of the entrance; a mute reminder that despite advances in treatment and prevention, despite wonder drugs and red ribbons, AIDS isn't over. And like the HIV virus, which constantly mutates and adapts and survives, the medical, political, social, and personal dilemmas facing people with AIDS continue to evolve as well.
In Knoxville, AIDS care has vastly changed since the dark days of puzzled doctors and a largely indifferent publicwhen the gay community was forced to take care of its own by itself. Today, there are places like the Graham and The Hope Center, organizations like Positively Living and AIDS Response Knoxville. But some things haven't changed that muchthere's limited funding for these groups; the general public seems to be losing interest in the war against AIDS; and those dying from the disease still face difficulties finding understanding, help, and a place to live out their days.
Here are just a few of the stories of those battling AIDS in Knoxville.
Dr. Richard Rose has been on the front lines of this city's AIDS wars since the beginning. He saw his first AIDS patient in Atlanta in 1980 when he was completing his residency. That was before the strange collection of illnesses had a name, and he had no way of knowing that he would devote most of the next two decades of his professional life to fighting it. By the time he saw his first Knoxville AIDS patient three years later, he was starting to understand the magnitude of what he was up against. He has ridden the emotional roller coaster with his patients as they hear about new miracle drugs that are tested, made available, and sometimes debunked or found to be mixed blessings. He says the AIDS/HIV community has "...gone from despair to elation to a cold-water reality check."
"It's certainly not over," says Rose, who now is Covenant Care's medical director of quality improvement and used to be president and managing partner of Knoxville Infectious Disease Consultantsthe AIDS docs. Through February of this year, Tennessee has had a total of 3,825 AIDS deaths; cumulative reported AIDS cases for Knox County since 1982 are 490, with 493 HIV cases reported since 1992. Last year, Tennessee's total reported AIDS cases declined from 965 in 1996 to 846; however, HIV cases only slightly dipped, going from 1,382 to 1,358.
"There are still a lot of folks getting sick, and they're still going to die of it, in the main...Although the number of reported cases have begun to plateau somewhat, it's important not to be lulled into complacency...People who were not infected with HIV are becoming infected with a potentially and probably fatal disease. Just because the death rate on the highways is continuing to decline, that doesn't mean we shouldn't try to prevent highway deaths..."
Although he has seen good results from AIDS drugs like the protease inhibitors, he cautions against excess optimism. These drugs "...are toxic and potentially very dangerous. They are more like cancer chemotherapy than the drugs we use to treat bronchitis...
"Protease inhibitors unmask diabetes in some patients. Also, they are not particularly good drugs because virus can rapidly develop resistance. In some patients, the virus breaks through anyway, and again the analogy with chemotherapy applies. You take deadly drugs, get a remission and enjoy it, because the disease will be back. That's proven to be hard to take.
"Part of the problem with HIV drugs is they are rushed to market based on in vitro datathey work in test tubes on a small sample of patients...That doesn't tell us what happens if you give them for five or 10 years, or if there's a side effect rate of one in 10,000; but it's a horrible side effect, and you won't detect it...The real fear is that we will see complications following fast-track approval. But when there are very few drugs available and you have a terrible disease, you are in a hurry..."
Although gay men still represent the largest reported percentage of AIDS cases in Tennessee (60 percent), Rose and other experts say more women are becoming infected through intercourse with infected men.
"Nationally, women of color contracting it through heterosexual intercourse is the highest rising group in the country; in many respects, it's a replay of what happened when HIV entered gay male society... Although these are, to a large degree, voluntary behaviors, I am not aware that since Adam and Eve have people been able to stop having sex."
Dawn Nickoloff, executive director of AIDS Response Knoxville, the city's largest AIDS care organization, says that nine of ARK's 17 referrals during the month of May were women, most with children.
Mary Tate, the Knox County Health Department's HIV/medical care coordinator, is often the one who delivers the bad news when a patient tests positive for the HIV virus.
"There's such a different face of AIDS now," Tate says. "There is a rising group of heterosexuals, especially black women. We are beginning to see younger generations of IV drug users; women caring for children, younger gay men. We are seeing 17- and 18-year-old pregnant girls..."
Tate says it is important to seek medical care early to cut down on the number of opportunistic infections associated with HIV.
In many ways, Wade was typical of the first wave of PWAs. White, male, gay, middle-class, middle-aged (he was 48)he'd once upon a time been married ("nine years of hell" by his own description), and had a daughter. He'd become estranged from his family when he divorced and "came out" as a gay man at age 30. Later, he disappeared for 10 years and, even at the end of his life, loved to shock his friends with stories of his wild times in bars and bath houses.
" 'If I'd come out earlier, I'd have been dead earlier,' " Ed White, a volunteer caregiver, remembers Wade telling him. "I was appalled at some of the stories he'd tell me."
Wade was already deathly sick when he made something of a prodigal return and came to Knoxville in 1994 after his aunt, who lives here, saw an Oprah Winfrey show about finding lost loved ones and hired an investigator who located him in Texas. Most of his blood kin live out of state, and nobody proposed killing the fatted calf when he turned up.
"Most of them don't want nothing to do with me," he said of his family. He counted his aunt and a sister as exceptions. The people who cared for himamong them his neighbors Simmons and Helton, his friends Wanda Moore, Beverly Peterson, and Whitelive here.
Peterson: "I think most of his family felt if they could hide from it and ignore it, it wouldn't be so. It was their loss. I really got attached to Wade. He was a sweetie. He tried so hard to be self-sufficient, and he was a true gentleman."
During one of Wade's bad spells, the Rev. Dee Crumm, who heads up Positively Living, an adult day care center for people with catastrophic illnesses, asked Jeff to get up a "care team" of volunteers to stay with Wade around the clock. He did, but with little or no help from any organization but Positively Living.
"In the end, it was just the true peopleLarry and me; Wanda, Bev, Ed, Terry Davis. We stuck with it until Wade didn't want anybody around..." Simmons says.
Wade checked into the nursing home after an episode May 6 when he almost didn't wake up. A nurse had come by to bathe him first thing in the morning and couldn't rouse him. She told Simmons, who had installed a baby monitor between his apartment and Wade's, to call hospice if Wade didn't awaken in an hour.
Simmons isn't happy with the response he got when he made the call.
"She said, 'What do you want us to do?'"
"I informed her that she needed to come and evaluate. 'Excuse me, get off your ass...'"
The incident scared Wade into deciding he could no longer care for himself, a decision most of his friends believe he made for himself, although a few fear he was, to some degree, coerced by hospice workers who were tired of dealing with him. To be "appropriate" for hospice care, patients generally are terminally ill with six months or less to live. The hospice nurses had Wade to contend with for four years.
Simmons says Wade "...told me he didn't want to go but was afraid he couldn't take care of himself anymore."
Shane Bailey, house manager at the Graham, was concerned about Wade's decision.
"Jeff and I were talking to Wade, and he finally started coming around and said he wanted Beanie Weenies. He fed himself but kept missing his mouth. He was having delusions, and the nurse was talking to him about going to the nursing home. He agreed. That concerned me because it wasn't like him. I waited until everyone had left, and I asked him if that was what he really wanted. He said it wasn't what he wanted, but it was what he needed."
Bailey remembers taking Wade for a last ride around town. They talked about it as they drove to Sharp's Ridge and then to get a hot dog. Wade seemed resigned.
The procedure for going to a nursing home required first checking into the hospital for at least three days to be "processed." Although the hospital stay seemed little more than an expensive bureaucratic ritual, while he was there, Jeannie Gillian, a medical psychologist and founder of the Hope Center, did what she could to ease his transition. (At the same time, she was working a half-dozen other patients, including the family of a young girl who would outlive Wade by a day, a homeless married couple, and a young man suffering from toxoplasmosis-induced delusions.)
By mid-May, Wade looked like this: He was skinny (77 pounds) and his face was covered with purplish, cancerous Kaposi's Sarcoma (KS) lesions that sometimes mark gay men with AIDS (women, for reasons yet to be understood, almost never get KS). His eyes, dark and huge, were mostly fogged over by medication and disease, but still occasionally lit up with sardonic humor. He had a serious bed sore on his butt and could barely walk. He loved to break hospital rules by lighting up a smoke whenever he took a notion.
The day after he left his apartment, Simmons and Helton were horrified to see Wade's parents come over and sort through his belongings wearing rubber gloves. His friends were furious.
Peterson: "I was livid, livid. Anybody who's been educated knows how you can and cannot catch it..."
While Wade was lingering in the nursing home, a young man and woman were awaiting news in a Knoxville hospital room. If Wade represents the "old wave" of PWAs, this couple symbolizes the changing face of the epidemic.
Kelly, who gave permission to use her story, has AIDS, and Charles is HIV-positive; they are homeless and relying on the kindness of strangers for temporary housing. Kelly and Charles are not their real names.
They drifted into Knoxville a short time before she became dangerously ill and was admitted to Ft. Sanders Medical Center with pneumonia. Her bill will be paid from Knox County's indigent care program. Other expenses will likely be picked up by Ryan White, Title II, locally-administered federal funds dedicated to AIDS/HIV care.
A red, heart-shaped helium balloon that says I Love You bumped against the ceiling beside Kelly's bed. Charles lay sleeping on a chair just beyond. Kelly hugs Oliver, the Hope Center teddy bear that Gillian gives to patients. Their belongings were piled in another corner of the room. Prior to her pneumonia, they had been living in temporary housing provided by a West Knoxville church; they had also been put up in temporary housing by AIDS Response Knoxville (ARK), the city's largest AIDS/HIV support organization. They were fast running out of temporary options.
In the hospital, they met Gillian and the Hope Center, a much smaller and more personal AIDS care organization that has expanded far beyond the walls of Ft. Sanders Medical Center. Gillian, like Tucker, lost a son to AIDS and is a tireless advocate for PWAs. Hope Center grew out of research for her doctoral dissertation, and she almost never takes a day off. She took Kelly under her wing immediately.
Knowing that Wade was preparing to enter the nursing home, she hoped Kelly and Charles could move into his old apartment in the Graham. Gillian contacted house manager Bailey, who watches over the Graham for Child and Family Services, which has run the place for the last 3 years.
This plan, which seemed a good fit to Gillian, didn't immediately catch on at the Graham, where Wade's friends were determined to keep his apartment open for him as long as there was the remotest possibility that he might rally and come back home. That notion wasn't as farfetched as it might seem, since Wade was a "Lazarus" man who had come back from the lip of the grave countless times before. It was important for other reasons, as well.
"People with AIDS watch how others are treated when they are critically illyou just can't detach yourself when you know the road you're traveling; they build up a network of people they know they can count onagencies, friends, people like me. Subtly, they know who they can count on and who they can't. They're watching," says Tucker. "Jeff [Simmons] is to be listened to..."
Wade died May 31, the day his rent ran out, making the issue of his return moot, and Kelly and Charles were scheduled to interview later with Graham residents as part of their application process. They didn't qualify to live in the Goodman-Powell House, a South Knoxville residence for PWAs run by the Aids Housing Authority (a group which receives referrals from other AIDS organizations) or for KCDC housing.
A week after Wade's death, Kelly and Charles met with residents of the Graham. Wade's apartment was turning out to be much in demand, and it ultimately went to another applicant, a single man who had lived in the building before and had been approved by KCDC, which meant that the agency would pay his rent.
Bailey, who divides his work day between the Graham and Positively Living, had to deliver the verdict to Kelly and Charles, who had no place else to go.
While the meeting at the Graham was going on, Rev. Crumm was appearing before a County Commission budget hearing to plead her case for a $10,000 appropriation. It is a tight, no-new-taxes kind of election year, and Positively Living has been penciled out of this year's bare-bones budget.
Crumm says she's hoping but isn't counting on money from the county.
"They said they're not funding anybody new this year...We go month-to-month. It's pretty tight for us, budget-wise. That was one reason we did the half-and-half arrangement with Child and Family Services for Shane's position. That's worked out well...I've not counted on the money from the commission, but, at the same time, we need everything we can get from any direction."
Hope Center is staffed largely by Gillian and one employee, plus volunteers.
Positively Living employs Crumm and Bailey, also plus volunteers. Its annual budget is $77, 658.47, a fraction of the $600,000 bottom line at ARK, which has been in existence for 10 years.
ARK has 20 employees and a theater company and weathered a serious financial crisis last winter. It has recently had a good deal of turnover on its board and has strained relationships with many members of the AIDS/HIV community. There is a long list of those who are no longer affiliated with ARK and instead devote their volunteer efforts to Hope Center or Positively Living. Some of the difficulties have been around since the time when ARK ended its management agreement with Tucker to run the Graham in 1993 (see sidebar) and moved from a $600-per-month space on Magnolia (which Tucker owns) to a $3,368.46-per-month space on Northshore Drive.
Nickoloff says part of the problem comes from ARK's changing client base and a declining interest in the issue among the public at large.
"We are having to do more for more people with a static amount of funding. The community is getting tired of giving money to AIDS. Sympathy is declining...Members of the gay community have been very supportive of one another and tend to be proactive with their health issues; now we are facing people who represent a different segment of the populationoften not a very lovable population."
Nickoloff writes off the rift with Tucker, who has been one of the most influential Knoxvillians involved with AIDS issues, as old news, long resolved.
"There hasn't been a problem between us in years..."
She is aware of criticism of ARK's theater program, but says she considers it "very swell...Things that are outside the box are controversial, but I think it's jazzy, and gives us one more opportunity to invest in the community."
Many AIDS activists say ARK has moved away from volunteerism and toward increasing bureaucratization. They point, for example, to the demise of the Buddy program, which paired volunteers with PWAs and provided hands-on services. People with AIDS are dying alone, they say, while ARK is staging plays. Few will criticize ARK on the record, however.
"I've got enough sense to know that if ARK goes down, it hurts all of us," says one care provider, a sentiment echoed by those who believe the big agency is vital to the well-being of Knoxville's PWAs.
Wade's funeral was June 1, just 25 hours after he died. It was held at a West Knoxville church where the minister thanked Wade's caregivers, "...who showed him unconditional love..."
The rest of the message, which leaned heavily on sin and ungodliness, wasn't all that comforting for many of Wade's friends, although it seemed to be well-received by his family.
Moore sang "Going Home," which everyone liked.
Afterward, Crumm was visibly shaken.
"If they wanted to save his soul, they don't need to show up with rubber gloves to clean his stuff out," she said.
Tucker was quiet: "What I have to work on day by day by day is to put my judgment aside," she said, walking toward her car.
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