Keeping up with a killer

AIDS-related deaths may be down, but local educators are doing their part to make sure the disease is not forgotten

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Molly Murphy / lawrence.com illustration

When Chris had his first one night stand with a guy, he was plenty aware of the risk of AIDS.

He knew he could get it by engaging in unprotected anal sex. He knew he could get it by sharing needles or getting a blood transfusion.

He didn't know he could get it by giving a blow job.

"For those of you who are wondering, no, he didn't reach a climax inside my mouth," wrote the now 40-year-old HIV/AIDS educator, who has been living locally with AIDS for eight years after contracting HIV at 22.

Chris, who answered questions via e-mail and chose to keep his last name private, is still alive thanks to the drug cocktails that surfaced in the mid '90s, just in time for his first full-blown AIDS outbreak. But finding the right medicine was only half the battle. Expecting to die soon, Chris had developed a cocaine addiction that only intensive drug rehab and a whole new outlook would cure.

Today, Chris' prospects are better than he ever expected. After an initial bout of suffering and some egregious side effects from the medications, he got healthy enough to earn his master's degree and become an AIDS educator who lectures on behalf of the Douglas County AIDS Project (he currently resides in Kansas City after a stint in Lawrence).

Still, it's hard not to look back to that one fateful night and wonder what might have been.

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Richard Gintowt / lawrence.com photo

DCAP counselor and case manager Shannon Ikerd distributes free condoms at DCAP.

"I wish I had known - and it is so important now for everyone to know - that HIV is spread through four bodily fluids: blood, semen, vaginal fluid and breast milk," he wrote. "ANY contact with these fluids of an HIV+ individual is risky. PERIOD."

At-large disease

In case you had forgotten, AIDS is still killing people. The Douglas County AIDS Project's annual reminder is October, AIDS Awareness month, which seems to be a little less salient with each passing year.

Yes, it's true that the death rates have been significantly cut by the availability of new drugs (by about fourfold, according to most estimates), and it's also true that Kansas is one of the lower-prevalence states.

But in the first half of 2004, (according to the Kansas Department of Health) 51 new HIV cases were reported in Kansas, bringing the number of people known to be living in the state with HIV to 497 - including at least 50 in Douglas County. The KDH estimates that more than a thousand people are currently living in Kansas with AIDS.

For Karl Milhon, the director of HIV/STD policy and planning for the Kansas Department of Health and Environment, the numbers are encouraging but by no means satisfactory.


Douglas County AIDS Project

2518 Ridge Court, Ste. 101 Lawrence, KS 66046

DCAP Web site

Volunteer

Monthly volunteer meetings are the second Monday night of each month, 6:30-7:30.

"Denial is still the common theme of this disease, both at an individual and a societal level," Milhon said. "This disease is not going away : It's here, it's still a risk, and it still is a fatal disease."

Under-the-radar risk

In the trenches of AIDS education, denial is the number one enemy, with ignorance trailing close behind. The scarcity of AIDS-related deaths covered in the media these days, coupled with a popular perception that drugs have made the disease non-fatal, have put AIDS awareness on the backburner.

In the opinion of Justin LaBerge, a Douglas County AIDS Project (DCAP) volunteer who lost his mother to AIDS at age 13, the success of AIDS-related treatments has come with a cruel ironic twist - making people less worried about catching the disease.

"I maintain that Magic Johnson is probably one of the worst things that could have happened to the AIDS movement, because he is so healthy and he looks so good," said LaBerge, a master's student and graduate teaching assistant in communication studies at KU. "I think people see that and say, 'See? You can live with this disease' : but they don't see the other side of it."

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Richard Gintowt / lawrence.com photo

Justin Laberg, DCAP volunteer who lost his mother to AIDS when he was 13

That "other side" can include side effects like anemia, muscle weakness, pneumonia and bronchitis and drug expenses averaging $1,200-$1,500 a month (depending on the political climate, varying numbers of people receive financial support under the Ryan White CARE Act of 1990).

Thanks to an abundance of free and anonymous testing centers, however, it's easier than ever to get tested and start treatment early.

According to HIV tester Elaine Houston, the biggest problem with AIDS education today is not a lack of knowledge but rather ignorance of the disease.

"In 2004 people tend to know how they get it and how they don't get it," said Houston, who also serves as the AIDS education coordinator for the Lawrence-Douglas County Health Department. "What they don't do is think of it as a behavioral illness : They're not willing to face the fact that them having unprotected sex is the way they're going to get it."

Guerilla tactics

Perhaps more than anyone else in Lawrence, Buck Rowland is dedicated to changing people's risky behavior.

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Scott McClurg / lawrence.com photo

Buck Rowland discusses HIV/AIDS prevention during a concert at The Bottleneck.

Rowland, an education outreach coordinator for DCAP, makes it his business to go to the places people are most at risk and infiltrate their ignorance with brigades of condoms, penis models and literature. Usually that means bars, but Rowland has also been known to frequent public places where men cruise for sex with other men and even swingers parties.

"There are a lot of secrets men have," said Rowland, who sometimes takes portable tests to the spots he visits. "It's not our place to judge them and say, 'You shouldn't come here.' If I do that they're just going to go somewhere else. My whole goal is to stop the spread of HIV."

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Richard Gintowt / lawrence.com photo

Samantha Nowatzke demonstrates using an Orasure AIDS test, which are available for free at DCAP.

Rowland often serves as confidant to young gay men with questions about HIV and other STDs. Though he emphasizes that HIV is not a gay disease, he also recognizes that a majority of new infections still occur among men who have sex with men.

"Some gay men take offense : they feel like by us passing out condoms we're perpetuating a stereotype," Rowland says. "The guys who don't want to use condoms feel that I'm a challenge to them scoring skin-to-skin sex : As though putting a condom on diminishes the love and affection that two people can share."

Rowland also is acutely aware that women make up one-third of new infections, and the age group of 13-25 is particularly at risk.

"People have this idea that you have to be some toothless ho on some street corner to be at risk for HIV, and we see everyday that is not true - beautiful young white girls getting infected by some cute guy in a sports car," he said.

With Rowland's help, DCAP distributed more than 35,000 condoms in 2003 (the organization also has numerous drop spots across town). Typically the group is warmly received when they hit the nightlife crowd, but there are still some who take offense to being handed condoms by strangers.

"There are people who have tried to intimidate me - they've picked the wrong person," Rowland said.

Editor's note: The following is a letter from 'Chris', an anonymous person who contracted AIDS while attending KU.

I am a 40 year-old, gay, white, male who contracted HIV (in Kansas City) back in the mid '80s, during the early years of the epidemic in the United States. As for your questions about how I contracted HIV, how I found out and what impact that had upon me, as well as what high-risk behaviors was I engaging in that led to my contracting the virus, the easiest way for me to answer all of those questions is to briefly relate my story to you.

I was only 22-years-old at the time, and just beginning to come out to myself as being gay. I was nowhere near coming out to anyone else yet, though, but since I was out of high school and on my own, I began leading a double life. By this I simply mean that, outwardly to all who knew me, I continued to foster the assumption that I was straight, just like everyone else. However, on my own I began to venture out into the gay scene. Since the internet had yet to be invented, this basically meant sneaking off to a gay bar every now and then. I had only done this a few times when finally, for the first time ever in my life up to that point, I picked someone up whom I had met that evening, and basically had a one-night stand.

You may know that in those days there was an AIDS hysteria in this country, so I was well aware of the disease, and of the hysteria that surrounded the epidemic. Nonetheless, public awareness and scientific understanding of the disease were in their infancy in those days. All I ever remember hearing back then was that it was a blood borne pathogen, that was passed by gay men because they routinely practiced unprotected anal intercourse. Additionally we knew that a few folks were getting it from tainted blood transfusions, or from sharing IV drug works and needles. I remember dismissing the threat because I had no particular desire to engage in any of those activities.

When I finally did go home with the young man I'd met in the bar that evening, our sexual activity was entirely oral in nature, and in those days the subject of oral sex wasn't even coming up yet in the national discourse surrounding HIV transmission. I ended up contracting HIV that evening by performing unprotected oral sex on that young man, and for those of you who are wondering, no he didn't reach a climax inside my mouth. Now we know that HIV is just as easily transmitted by pre-seminal fluid, in the same way that a man can impregnate a woman with pre-seminal fluid, even if he terminates intercourse and 'pulls out' before climaxing.

The way that I found out was that I began to experience very odd physical symptoms in the weeks and months that followed. The symptoms were basically sore and swollen lymph nodes, not just in the neck, but in the arm pits and groin as well. Additionally there was a bout of low-grade fevers that were coming and going during that period. I also began to notice oral thrush, a white, cottony looking, yeast on the tongue. Finally, my appetite shrank considerably while all of this was happening, and I just felt queezy. I noticed all of this and, coming so quickly as it did upon the heels of my first ever one-night stand from a gay bar, I began to worry. I tested anonymously and found out that my fears were correct.

By the time I got the results I had pretty much already decided in my mind that I would be positive, because I had done some research and found out that I had the typical symptoms of post-HIV infection. After a few months my symptoms were all gone, and that fit the profile of post-HIV infection as well. The first few weeks and months, when I was actually experiencing the symptoms, was the scariest for me. Once I'd looked further into it, and confirmed my suspicions, I was pretty much over the drama and ready to accept it, so I adjusted fairly well.

The fact that I was HIV+ didn't really start to change my life until 10 years later, when the infection began to progress into full-blown AIDS. Up until that time I had just pretty much worked and lived the single life. Since there were no treatments available until the mid '90s, there was little else that I could do about my HIV. Luckily, at the same time that I was going into the hospital in early '96 with my first opportunistic infection and a T-cell count of 12, the doctors had effective new treatments to offer for the first time ever, that would bring a person with AIDS back from the brink of death.

My life changed dramatically at that point. I could no longer work, and the side effects of the antiviral medications were terrible. I had also developed a nasty cocaine addiction in the years that I had lived with the virus, expecting to die soon. Consequently, I had to enter drug rehabilitation and learn to embrace my total recovery, as a whole person, not just from HIV, but from drug addiction as well. Eventually I got better, went back to college and got my master's degree, and have been working in the field of HIV education and prevention ever since!

I wish I had known, and it is so important now for everyone to know, that HIV is spread through four bodily fluids: blood, semen, vaginal fluid, and breast milk. ANY contact with these fluids of an HIV+ individual is risky. PERIOD. No matter whether that contact is oral, anal, vaginal, or whatever other behavior is putting you into contact with ANY of these four bodily fluids from an HIV+ individual. If you don't know with absolute, 100 percent certainty, about your sexual partner's HIV status, then you should be using a condom for intercourse and a dental dam or saran wrap for oral sex.

The only way to know for sure is to get tested, and take your partner to get tested, and know that HIV takes three months from infection to show up on the test, but it can be spread within the first week that you get it!

Right now my current state of health is excellent, and so are my prospects for the future, thanks to new and more effective treatments for HIV which have come out in recent years. However, these treatments are expensive, and without government programs to provide them, antiviral medications that treat HIV are out of the reach of most people.

Health care issues like these are at crisis level proportions in the United States, and they are only going to get worse. I encourage each individual to become involved in the political process, and to support the Democratic ticket across the board, as this party alone has consistently shown itself to be the little man's friend when it comes to social support. Like my friend Bill Clinton said, "If you wanna live like the Republicans, you'd better vote for the Democrats."

Throughout the '90s, the Ryan White Care Act, which provides needed treatments and services to HIV+ individuals, was more than adequately funded. Since the new millennium, however, the Ryan White Care Act has been flat-funded by the Republican-controlled Congress, under the leadership of the Republican controlled White House. Consequently, several states have had to start waiting lists for patients who need HIV antiviral treatments. For the first time ever in the United States, since drugs for the treatment of HIV have been available, several of your fellow Americans have actually died, while on waiting lists for drugs that were already available, but for which there was no funding.

Last month, in Kansas City, MO, as was reported on the front page of the Kansas City Star, the Midtown Infectious Disease Clinic, one of only four in the area specializing in the treatment of HIV as provided for by the Ryan White Care Act, had to shut its doors for good. The Midtown ID Clinic had survived as a center for treatment in the battle against this disease for eighteen years. Unfortunately, however, it couldn't survive four years of George W. Bush's 'compassionate conservatism'. Compassion isn't meant to be 'conserved' George. Like mercy, the quality of compassion is not strained. It droppeth freely, as the gentle rain from heaven.

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