I was sitting in a café writing an editorial about HIV testing as I waited for my breakfast. I noticed a young man sitting behind me but didn't give him a thought. My number was called so I got up to retrieve my food. When I returned to the table the young man asked if I was a doctor. I asked how he knew and he realized he had been caught reading the document on my computer. I was glad he did. His curiosity led to an epiphany that exacerbated my professional restlessness about addressing the HIV epidemic. We are still failing to educate the community about HIV. This 29 year old with two years of college from an esteemed university engaged me in a conversation that helped me realize despite our marketing and educational efforts thus far, our messages are not getting through to the people who need them most. Right there in the café, he spoke so openly about his HIV knowledge I could not let the opportunity pass to probe his notions about the disease. I sat and listened for nearly 30 minutes in complete awe... and sadness. He talked without almost no prompting as if he had been waiting for someone to come along and listen to everything he knew about HIV. Occasionally I would jot a few words on my computer to capture his thoughts and remind me of the lessons he was bestowing upon me. He told me:
He used to visit friends in a group house and would sometimes be invited to sleep over on the sofa. He later learned that one of the residents was HIV-positive. From that day forward, he would stay in the house but was "nervous" about sleeping on the couch when she was in the house and couldn't sleep through the night. He knew he couldn't get HIV from the couch but the presence of an HIV-positive person in the home made him uncomfortable. One of his friends told him if you use same shower as someone who is HIV-positive you should wash the tub with bleach before taking a shower. He has concerns about contracting HIV from a toilet seat because if an HIV-positive person has used it before him, the germs might still be in the toilet and if the water splashes up and contacts his skin and he could get infected. He has a friend who thought he may have been exposed to HIV so he drank a cup of bleach.
He believes people with HIV should be segregated from the rest of society and "should have their own groups" but mostly for their own good because it would make them feel more comfortable. He added this is also a good thing for them since they probably don't have anything else to live for. He made a distinction between HIV and AIDS and said there was no treatment for "people with full blown AIDS. That would be a miracle". He added if treatment was available for AIDS then people would take it and just keep on doing what they are doing. (It was the first truth in all of his ranting). He continued, in a hospital setting, "HIV-positive people should all be segregated on their own hospital ward." He talked about how you can always tell who has AIDS because they have lost a lot of weight and their "brain is not functioning right". He wanted to know if you could catch it from sharing a "smoke." I asked if he would eat off my fork if I was positive. He said no and launched into a diatribe about how certain African communities eat from a communal dish with their hands and how this is probably contributing to the spread of HIV. I asked if he would allow an HIV-positive relative to live in his house. He said no.
He told me about stories he had read on the internet. There is a man in Kenya who has the cure for HIV but no one knows about him except rich people. Magic Johnson learned about this man and flew to Kenya, paid the man $1 million and now has been cured of HIV. He also thinks the government is about to eradicate antibiotic availability the impact of which he said is people with gonorrhea will no longer be able to be treated.
I asked if he felt his friends and family shared these beliefs. He answered emphatically, "Absolutely." My heart sank repeatedly throughout the conversation but it was a teachable moment and I realized the challenge was also a tremendous opportunity. The epidemic is over 30 years old. The science has progressed but for some our thinking, perceptions and awareness have not. We must be more aggressive about ensuring community awareness about basic HIV information. I seized the moment to continue my discussion with the young man in the café that day and highlighted important information everyone must know about HIV in 2012:
AIDS is no longer a death sentence. No one has to die of AIDS anymore. The treatment for HIV infection prevents AIDS and leads most people with AIDS to a full recovery. Sometimes it takes a bit longer for the immune system to recover in people with AIDS but the treatment works well, even in people with "full blown" AIDS. Many patients who learned they were positive many years ago but never sought treatment have come into my office on death's door because they were afraid to hear they had AIDS or because they didn't realize that AIDS can now be treated. Last month one of my patients who was diagnosed with AIDS in 2009 came for a follow up visit. Her HIV is so well controlled on medication we talked about her HIV for less than five minutes. We spent the remainder of the visit trying to devise a practical strategy for her to lose the 76 pounds she regained when she started to feel better. Because the treatment is excellent with few side effects for most people, it no longer matters if someone with HIV infection has AIDS. And certainly no one has to die from it.
HIV is not spread by casual contact. HIV is completely preventable. A person can not become infected with HIV by hugging, touching, kissing, sharing a cigarette, sitting on the same furniture, using the same bathroom or eating and drinking from the same utensils. A person gets infected with HIV by sharing blood, semen, vaginal and anal fluid. Anal and vaginal sex are the most common ways to contract or transmit HIV. In fact, having anal sex without a condom is the highest risk sex act for contracting HIV. This is important because many heterosexual people engage in anal sex but may not realize the risk associated with HIV transmission. I recently delivered a seminar for a group of teenagers who were shocked to learn anal sex is a risk factor. The information was a wakeup call for them since some routinely engaged in anal sex to prevent pregnancy or to preserve virginity. The risk of contracting HIV through oral sex is very small and unlikely unless the giver or receiver suffers from bloody gum disease. The risk of HIV transmission also increases in people with sexually transmitted infections like herpes, syphilis, untreated gonorrhea and Chlamydia.
HIV does not have "a look." In 2009 at a World AIDS day program, I invited several HIV-positive persons to serve as panelists for a community audience. The audience was unaware of each panel member's HIV status but I asked them to guess which person was HIV-positive. A few people made selections based on appearances but overall the audience was surprised to learn the truth. The panelists included heterosexual men and women with ages ranging from 20-60. You cannot look at a person and suspect his or her HIV status, especially people who take their HIV medication faithfully. Magic Johnson, despite his wealth, is a wonderful example of what how medication for HIV is effective and allows people to live a long healthy life. His recent appearance in a PBS documentary illustrates his healthy appearance and his continued need for medication. Many of my patients are low to middle income but those who faithfully take their HIV medication look just as healthy as Magic Johnson.
HIV transmission is preventable. Many people know HIV infection can be prevented by using condoms consistently, abstaining from sexual activity or maintaining one HIV-negative sexual partner. Each of these is critical to eliminating the spread of HIV. However, preventing HIV begins with knowing whether or not you have HIV. The Centers for Disease Control and Prevention estimates that 1 in 5 people do not know his or her HIV status. Because HIV is now a treatable condition like diabetes or high cholesterol, getting tested for HIV is life-saving. Furthermore, many people are not aware that treatment for HIV prevents the spread of HIV. This is because HIV transmission will be drastically reduced if an HIV-positive person takes medication everyday. Because the medication stops HIV from reproducing in the body, if the amount of HIV in the bloodstream and tissues is low or "undetectable," an HIV-positive person is much less likely to spread the virus to another person. For many years we have known HIV medications can reduce transmission because medication given to an HIV-positive mother was shown to prevent transmission to her baby. Similarly, a more recent research study among heterosexual people revealed HIV-infected people whose virus was controlled by medication were 96% less likely to transmit HIV to their HIV-negative partners. These are tremendous advancements in the treatment and prevention of HIV. But we will only see the benefit of these advancements if everyone gets tested, infection is identified and treated by a medical provider.
My epiphany in the café was that despite our marketing and often cursory and isolated educational efforts to publicize HIV-related information, we are ineffective. As I wrapped up my conversation with the young man, he was appreciative and eager to know more. We discussed the need for continued and specific HIV education throughout the community. We also talked briefly about solutions which we agreed largely will require combined efforts across the country such as community members and people with high visibility- he suggested influential hip-hop artists- engaging in sustained conversations about HIV or healthcare providers beginning to offer HIV testing just as routinely as they offer a blood sugar test to look for diabetes. These efforts will help reduce the shame and embarrassment associated with being HIV-positive, a byproduct of which is open and free discussion which invites solutions rather than misinformation and judgment. If we really want to address the epidemic, we need to analyze reasons our messages are not getting through to the people who need them most. Then we must make the commitment to boldly move forward to broach uncomfortable discussions -- no matter how difficult, sensitive and offensive our messages may be because these conversations will ultimately save lives.