World AIDS Day: Diagnosing and living with HIV/AIDS today
Human immunodeficiency virus (HIV) is a virus spread by contact with infected bodily fluids. HIV primarily infiltrates a person’s CD4 cells, the white blood cells that help the immune system fight disease. Once infected, the cells produce millions of duplicates of the virus, which will eventually destroy the host cell and disperse the copies into the bloodstream to infect other cells. AIDS follows as the immune system falls to shambles, leaving sufferers vulnerable to opportunistic infections (OIs) that can prove fatal. The epidemic afflicts 34 million people worldwide, according to an estimate by the United Nations Programme on HIV/AIDS. “Until the late 1970s and early ’80s, (AIDS) was this new deadly disease,” Jessica Grubb, M.D., site leader of the Washington University AIDS Clinical Trial Unit (ACTU), said. “It was mostly affecting white men who sleep with men on the coasts and occasionally some Haitians, and really nobody had any idea what to do with it. It was just scaring people.
“People didn’t want to touch people with HIV; they didn’t even know it was HIV, and there were all these misconceptions and rumors flying around. Throughout the 1980s, [the misconceptions] kind of persisted, although the science improved in terms of knowledge of what HIV is.”
Washington University’s St. Louis-based ACTU was established in 1987 as a branch of the AIDS Clinical Trials Group (ACTG), the world’s largest HIV clinical trials group. “St. Louis leads the country in sexually transmitted diseases on a regular basis,” Study Coordinator Michael Klebert, Ph.D., R.N., ANP-BC, said. “The value of having a unit like this in this area [is that] it has provided ready access to state of the art drugs…This entire time, we’ve done AIDS clinical trials studies that have developed all the major antiretroviral treatments that are used today: AZT, DDI, DDC…protease inhibitors.” The ACTU is currently enrolling for more than 20 clinical trials, including studies designed to reduce the inflammation and bone metabolism dysfunction in HIV-positive individuals.
“What we’re doing here in St. Louis is important globally for the treatment of HIV,” Grubb said. “We’re looking for a cure; it’s what we’re charged with.”“Considering the fact that there’s still approximately 50,000 new cases of HIV a year in the United States, we’re really not putting a dent in it. We really need to do more prevention,” Karen, who spoke on the condition of anonymity, said. Karen has lived with AIDS for 17 years.
“The biggest misconception is that ‘it can’t happen to me.’ I am living proof of that. Just one night of unprotected sex, and here I am,” Karen said. “I was diagnosed with AIDS in 1994. At that time, I was working as a graphic designer, raising a husband, two kids, cats, dogs and fish.”
Karen now serves on the Community Advisory Board for the ACTU. Board members help the ACTU decide which ACTG trials to test locally. “[The members are] physicians assistants, nurses, lawyers, graphic designers, chefs—these are not people who you’d think, like, ‘They’re just scumbags off the street or drug users.’ These are professional people who have all probably contracted HIV through unprotected sex,” Karen said.
Karen knows the benefits of ACTU research first hand: “In the past, it was normal for you to go to a funeral every week…back in the early days—not in the ’80s. I was diagnosed in the ’90s…At that time you really just kind of went home, made out your will, and prepared to die.”
During this period, Karen took between 30 and 40 pills at least three times a day, incurring severe side effects. “You always had to be within five minutes of some kind of bathroom facility because you never knew if those meds were going to make it or if your stomach would upturn,” Karen said. “Some people spent two to three hours in the bathroom; people couldn’t leave their house because some meds had to be refrigerated.” Work and sleep became nearly impractical when one had to take pills every few hours. “At two in the morning you might be up. At six in the morning you might be up.” After trials and research such as those performed at the ACTU, HIV/AIDS management medication became easier. “Today the meds are down to two or three pills that are combined into one pill, and you might take it one time a day,” Karen said. “The side effects now are minimal compared to what they were 10-15 years ago. People can pretty much go on with their lives just like they have a cold.”
“HIV is a difficult disease to live with at any age,” Karen warned. “If you’re diagnosed in your teens or twenties, you face dealing with this disease for much longer than someone diagnosed in their fifties. When you discover that you’re [HIV] positive, your life will change…Use condoms. I know that may sound old-fashioned to a lot of young people, but it’s the only way to protect your life.”
Members of the Washington University community echoed Karen’s sentiment.
“Every time you make a sexual decision, use protection,” Melissa Ruwitch, assistant director of Student Health Services (SHS) and chief of Health Promotion Services, said. “We [at SHS] are sex-positive. We know people are exploring…but we try to make sure people stay safe…A lot of our effort is focused on giving away condoms…We give away free condoms at Student Health in our health promotion hallway.”
SHS also provides personal lubricants and dams at no cost to students and has teamed up with student organizations through the “We’ve Got You Covered” program to distribute condoms in residence halls.
SHS recommends sexually active students get tested for HIV at least annually. “If you have another sexually transmitted infection, you’re twice as likely to get HIV,” Ruwitch said. “HIV is on this campus…We definitely have seen HIV…on campus in the last few years. Wash. U. students are not immune from this virus.”
“They don’t think they’re at risk…The myth is you have to be gay, a drug user or promiscuous…That’s not necessarily the case,” Chardial Samuel, LCSW, director of prevention services for Project ARK, said.
Project ARK’s prevention services act to educate and protect the public. The Women of Color Program visits schools, shelters and rehab centers to disperse evidence-based HIV-prevention programs. The Men Who Have Sex with Men program focuses on club and bar outreach, providing STI testing and condoms outside clubs. Through spin-off organizations like the SPOT, Project ARK provides counseling for those living with HIV and offers free STI testing services, open to all between the ages of 13 to 24. The SPOT and Project ARK see young people of all types walk in for HIV/STI testing. HIV doesn’t discriminate—you can be black, white, yellow or purple—it doesn’t matter. What does, though, is the person behind the virus. “The biggest contribution to the [HIV/AIDS] epidemic is stigma,” Samuel said. “People—they think HIV, and the first thing they start to do is judge.”