Arkansas is the perfect place to try out this new health trend. Read all about the what, why, where and how here.
The year was 1990 and Eric Camp was 26 years old when one evening he ran into an old lover — a one-night stand, really — at Discovery, the Little Rock nightclub. "It was a fundraiser — an AIDS benefit," Camp recalled recently. "And this guy, this one-night stand, as I call him, he came and hugged me and said, 'I have AIDS, and I didn't know.' "
Camp got tested for HIV; it came up positive. These were the years in which there was no medically sanctioned treatment for the disease and essentially no hope of long-term survival. An HIV diagnosis could take years to develop into full-blown AIDS, but once that occurred, the average life expectancy was around 11 months. By 1992, AIDS would become the No. 1 cause of death for U.S. men ages 25 to 44, according to the U.S. Centers for Disease Control and Prevention.
Only a couple of weeks after his diagnosis, a clock ticking in his head, Camp determined to sound the alarm to as many young people as possible while he still had the strength to do so. He approached a local group called the Regional AIDS Interfaith Network, or RAIN, which had organized a small cadre of fiercely committed HIV-positive Arkansans to speak to teenagers about the epidemic's toll. Although the state legislature had recently mandated sex education in Arkansas — the result of Dr. Joycelyn Elders' pioneering work as director of the state Health Department under then-Gov. Bill Clinton — most schools were woefully unequipped to educate kids about the disease. At the time, public misconceptions ran rampant, from the belief that HIV could be spread through water fountains and handshakes to the myth that heterosexual transmission was impossible. As the death count rose nationwide (and in Arkansas), so did the urgency of the RAIN volunteers' mission.
Camp and others visited over a hundred school districts around the state in the early '90s, reaching tens of thousands of junior high and high school students in mass assemblies. "We were going into schools at a time when they didn't have the curriculum and were kind of hitting the panic button," Camp said. "Early on, you could hear a pin drop. Kids faced their fears. They could look somebody in the eye and see what they were afraid of. Because you had people with life-threatening illnesses talking to them in a school assembly, they knew that something was up, that you needed to pay attention. So the reception was pretty good."
Camp was a natural fit. Young, articulate and charismatic, he could captivate a high school audience. He had a background in journalism (before he became too sick to hold a full-time job, he worked at KARN-FM and the Arkansas Radio Network), which gave him an edge in public speaking. But just as crucial was the fact that Camp, with his South Arkansas accent and strapping good looks, didn't fit anyone's stereotype of an AIDS victim. At a time when homophobia was the unquestioned norm almost everywhere, RAIN activists knew that anything hinting of sexual difference would be a nonstarter in rural Arkansas schools.
"I was drawn into that [work] because, strangely enough, they were looking for people who didn't fit the gay role," Camp said. "Back then, other [HIV-positive] people wanted to do it, but you ran into trouble if you seemed remotely effeminate. Parents would be up in arms. I would tell people my story without using pronouns that would cue them into the fact that I was gay — 'I had a one-night stand with a sweet lookin' young thing' — and they could relate to that. It was about trying to present a story that kids could relate to."
It's worth pausing to consider just what it meant for a young HIV-positive gay man, recently sentenced to a terrifying death, to devote his remaining years to saving the lives of kids in Bible belt towns across 1990s Arkansas. Camp was not closeted — he was involved in gay activism in Little Rock before his diagnosis and later helped to cofound the "Queer Frontier," a radio program on KABF-FM, 88.3. He'd suffered the psychological crucible of growing up gay in a small Southern town: Raised in a thoroughly Southern Baptist home in Magnolia, he had twice attempted suicide as a teenager while grappling with his attraction to men. But faced with the rising tide of AIDS and grasping the urgency of the threat it posed, Camp returned to small town high schools like the one he'd graduated from — and, by necessity, elided his sexuality to do so.
"It's just what we had to do," he said. "It's the only way we could get in the schools."
Other compromises were necessary as well. To gain approval from administrators, RAIN had to stress abstinence education. Nonetheless, Camp was able to smuggle in some basic information about safe sex, too.
"I had a partner at home, and the only reason he never got infected was condom use, which he insisted on. So, it was my responsibility to talk about condoms. Of course you couldn't put them on a banana or anything, but you could tell [students], 'It has to be latex, you have to only use water-based lubricants, you can't store them in a wallet or a glove box.' Things like that. I talked about condoms in some remarkable places — Searcy High School."
Even minimal talk of protection led to controversy. "We had a time with the Catholic Church; they weren't happy with my condom stuff. And the Family Council. They came to one of our school meetings and did an expose — warning people that 'They come in saying "abstinence" but then they talk condoms, too.' "
Nonetheless, churches were an integral part of RAIN's mission. The organization was founded in the late '80s by Trudy James, a hospital chaplain who had just finished an internship at the University of Arkansas for Medical Sciences. Its mission, James told the Times, was "to see if there was any way for churches to become part of the solution [to the AIDS crisis], because churches in Arkansas — and in general across the South — were a part of the problem." Over the next decade, RAIN grew into one of the state's most prominent AIDS outreach groups, and Eric Camp remained at the forefront of its work.
"He's a hero," James said of Camp. "Some parents would refuse to let their children come to our presentation, but I feel like we saved a lot of kids in Arkansas by convincing them that unsafe sex could result in AIDS." (It didn't hurt, she added, that "Eric was so incredibly handsome ... and so all the little high school girls would just fall in love with him" when he spoke.)
Camp was one of many activists working with RAIN's school program. Today, however, he's one of the very few left alive.
"The original RAIN school speakers were Ron Amberson of Hot Springs, Debbie Bell of Newport and Mitch Cory and Joe Terry of Little Rock," Camp said. "They were great speakers, and crossed racial and gender divides — but they were all very sick, which led to the need for new speakers, especially as demand grew.
"There was Overtis Harris — he did a lot of work in the African-American community. A great guy; he had a booming bass voice that would've been great for the radio. Ricky Moix was disowned by his parents, and he let kids know even Momma may not be there for you if you get this virus. Blaine Hollensworth was still a teenager when he was diagnosed. ... He wouldn't have looked out of place sitting in the bleachers with the audience."
Then there was Brenda Snell and her infant, Stephen, both of whom had AIDS. "They really hit home with junior high and high school girls. ... That little baby would grab the microphone and coo ...," he said, his words trailing off.
From a video clip dated Jan. 23, 1993, filmed on a handheld camcorder: Camp, Snell and a third speaker sit behind a folding table in the middle of a gym at Heber Springs Middle School. After a RAIN worker delivers an informational talk, Camp hands Snell the microphone and she rises to address the students, her baby cradled in one arm.
"I have HIV, and when I found out, I felt like I was already in my grave," she says steadily. "I found out after Stephen was born. ... We didn't know at first what he had. They had other viruses they were diagnosing him with, but after about six weeks they finally decided he had full-blown AIDS." Snell had contracted the virus from Stephen's father, who hadn't known he was infected.
"When I told my family about it, I was all but abandoned. The only person who would come around me was my sister. ... If not for [RAIN] I might just commit suicide. It would be the easy way out. You don't know who you can trust to tell. You don't know how they'll react. Some people are so crazy, they may try to burn your house down."
Snell died in 1997, Stephen earlier the same year. Most of Camp's other fellow travelers with the RAIN school program didn't live to see the end of the decade. Those days are marked only by Camp's small collection of videos, a handful of Polaroids and far too many yellowing obituaries clipped from the newspaper.
The organization's work extended beyond the schools, as did Camp's. "We would take people with us to churches to disabuse them of the notion that there weren't people with AIDS in Arkansas," Trudy James said. "He was willing to put himself out there." Camp helped recruit "care teams" for RAIN — groups of volunteers drawn from sympathetic congregations to essentially perform hospice care for the very sick, an especially crucial service at a time when AIDS patients such as Brenda Snell were sometimes shunned by family and friends. He helped organize retreats for the sick and dying; the annual gatherings would attract AIDS patients from small towns around Arkansas who often hid their illness for fear of being ostracized.
James also recalled Camp leveraging his professional expertise into advocacy. "There was, early on in the '90s, a statewide conference for journalists and they had not addressed AIDS by and large. They invited Eric and me to come and do a presentation, and we did. Many of them came up afterwards and were just astounded — that we would talk so openly about it, and that there was so much AIDS in Arkansas. He was just so credible to people." Camp also produced multiple AIDS-related programs on AETN.
Though Camp developed AIDS not long after testing HIV-positive, he remained healthy enough to stay active throughout the decade in both AIDS advocacy and gay and lesbian activism. But, as he buried friend after friend who succumbed to the disease, he focused mostly on the former. "I kind of had to make a choice, and I felt the need was greater for AIDS work," he said.
"I struggled with depression a lot, so it was a way of fighting through some of that," he said. "There were only a handful of people with HIV who were really willing to be public at the time, so there was plenty of demand for that kind of work. Whenever I had the energy and the strength to go do something, I'd do it."
Then things began to change. By 1997, the CDC found AIDS-related deaths had declined by over 40 percent from the previous year as a new generation of antiretroviral drugs became available.
"It was too good to be true," Camp recalled. "You lived in a state of pretty much hopelessness. ... And then there was hope. You could see what was happening with friends who were on their deathbeds, and all of a sudden they could get up and start living normal lives. It was a Lazarus effect."
Yet the emergence of effective treatments also created an urgent new front in the fight. Many dying patients couldn't afford the drugs, considering their annual cost could reach $50,000. Although Congress authorized federal AIDS funding in the form of the Ryan White CARE Act, it wasn't sufficient to cover every patient, and many states like Arkansas weren't contributing matching money. Camp himself was one of those with access to medication paid for with Ryan White funds, but other Arkansans were not so lucky.
"We had a waiting list for HIV medication when the drugs became more effective. People had no access to them, and so people were dying because they didn't get their drugs," Camp said. "You were left at the mercy of trying to get free ones from drug companies, which were reluctant to do so." In response, Camp founded the Arkansas AIDS Drug Assistance Program (ADAP) Working Group, an effort to prod the state into providing the money necessary to clear the waiting list.
"I just worked within the system that was there. RAIN's care teams ... were looking for ways of helping, [so I] taught them how to write letters," he said. Though state government wasn't terribly receptive to the suffering of AIDS patients — Mike Huckabee had said on the 1992 U.S. Senate campaign trail that officials should "isolate the carriers of this plague" — Camp ceaselessly lobbied Arkansas to help pay for lifesaving medication for its citizens. In 2001, the legislature and then-Gov. Huckabee finally agreed to provide $660,000 from the governor's discretionary fund to help fill the coverage gap. Camp believes the decision was prompted by research showing that wider drug availability would slow the virus' spread.
"Once they realized that having people in treatment rendered them far less infectious, they began to realize that it was a matter the state needed to invest in. That's what it took. We could ask for all the compassion that we wanted, but they were looking for ... a public health reason why the state should contribute money. And that turned out to be it."
Nonetheless, the one-time infusion of state money was not sufficient to provide drug coverage to all low-income Arkansans, and so a couple of years later Camp made the decision to stop taking drugs himself for about two years as an act of protest. It was a controversial step among the community of AIDS advocates. "People thought I was crazy — that I was trying to be a martyr or something. But being off meds didn't necessarily mean death," he said. "Part of it, honestly, was I felt like you need a break from these medications from time to time, because they do damage to your liver." (Today's HIV drugs are much less toxic than they once were, and health care professionals generally urge HIV positive people to stay on their prescriptions unless a doctor says otherwise.)
Camp said he went off his medication partly to draw public attention to the waiting list issue but primarily because doing so would allow another person on the list to get treatment. Camp was especially disturbed that the waiting list was being addressed on a first-come, first-served basis. "They weren't evaluating people as to need," he said. "A pregnant mother delivering a newborn baby with HIV — who's to say I needed it worse than they do? That's the way I looked at it. I got sicker, but I just felt like it was the moral and right thing to do. ... It freed up a slot for somebody else."
Camp retired from activism in 2006, utterly exhausted after 15 years of illness and nonstop advocacy. "I'm an introvert, and needed my life back. Plus, because of better medications, the sense of emergency and crisis had subsided," he said. "I felt like I'd served my purpose."
In the decade since, the nature of the AIDS epidemic in the U.S. has changed dramatically. Drugs have improved to the point where HIV has become a manageable chronic illness for most Americans, said Dr. Naveen Patil, the medical director for the Infectious Disease Branch at the Arkansas Department of Health.
The older generation of antiretrovirals "had to be taken around the clock — 20 or 25 pills in a day. Some were very toxic," Patil said. "Now, drug companies have combined three or four different medications into a single pill, which people can take and have their virus suppressed. Patients are much more compliant, because we see fewer side effects."
CDC guidelines now recommend treatment as soon as a person is diagnosed with HIV, meaning patients can receive care long before they develop AIDS. And between Ryan White funding and expanded insurance coverage under the Affordable Care Act, the drugs generally are available to those who need them, at least in Arkansas. The state's waiting list has been clear for several years.
"If a 20- or 25-year-old person is diagnosed today, we'd expect them to live the same 75 years" as an uninfected person, Patil said, unless they stop treatment. "People no longer die of HIV [in the U.S.] unless they choose to die." (Globally, it's a different story: "35 or 40 million have the disease and don't have access to good medication," Patil said.)
Still, HIV isn't going away in the U.S. An estimated 1.2 million Americans are infected with the virus, according to the CDC. There are 5,456 HIV-positive Arkansans known to the state Health Department, but many more are undoubtedly undiagnosed. "Nationally, a quarter of [HIV positive people] don't know they have HIV," Patil said.
There are also worrying national trends reflected in the state. "Recently, we've seen an uptick in [infection] among youth — the group ages 15 to 24," said Arrie Morris, surveillance program manager for the Infectious Disease Branch. "Roughly some 26 percent of new reports [in Arkansas] were in that age group." Although men who have sex with men are still at highest risk, heterosexual women have seen an increase in infections. And in contrast to the early years of the epidemic, HIV now disproportionately affects minority communities, particularly African Americans. "Among blacks, the infection rate is six to seven times that of whites," Morris said; Patil attributed the gap to poverty, lack of access to health care and social stigma. In 2014, the state's overall HIV/AIDS incidence (the number of new HIV infections reported, plus HIV diagnoses newly progressed to AIDS) was 429, the highest in a decade.
If anything, those trends point to the wisdom of what Camp has been preaching since the 1990s. "I'm still a proponent of comprehensive sex education in schools, because [kids] aren't getting it at home, and they're not getting it at their churches. AIDS may not be the last fatal sexually transmitted disease; it just happened along [when it did]," he said. He's not a believer in abstinence-only education, but he does think teenagers should be taught to limit their number of sexual partners and to wait longer before having sex. "Those are still good ideas — for mental and emotional health if nothing else," he said.
In 2014, Camp married his partner, Michael Hastings, and they continue living in Little Rock today. The public's evolution on same-sex marriage is a development that Camp never expected to see in his lifetime, he said. But if the face of AIDS has changed drastically since the 1990s, so has the cultural climate toward LGBT Americans, even in Arkansas.
Back when he was first diagnosed, Camp made the choice to prioritize AIDS work above gay activism "because people were dying. It seemed more pressing." It turns out, however, that over the course of a decade and a half of community outreach through RAIN and other AIDS organizations, "the education [on LGBT issues] was done along the way. I think that's part of what helped change things. ... I think the people who came out along the way slowly educated the public." It was an unimaginably steep price to pay.
"I miss all the old people who are gone. You lost a whole generation of folks in their 20s," he said quietly, "folks who didn't have a chance to live their lives." For Camp, those years were marked by a constant refrain of grief that's inconceivable for most of us raised in this country. Imagine, over the course of one's 20s and 30s, losing not two or three friends to random tragedy, but an entire community, person by person. Camp keeps their memories and stays grateful: After all, he was supposed to be dead 20 years ago.
"I never thought I'd live to see the 2000s," he said. "So it's all gravy now."
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