The incredible success of HIV therapies has relegated a disease that was once a death sentence to a chronic condition for many people. With that has come a frustrating complacency about basic prevention and testing among some groups.
Consider that when men who have sex with men (MSM) became the first U.S. AIDS victims in the early 1980s the gay community rallied heroically and demanded action from a government and society that marginalized them and remained in denial about an epidemic that would eventually kill some 40 million people worldwide.
Now MSM are a growing demographic of HIV infection, increasing 12% from 26,700 in 2008 to 29,800 in 2010, according to the Centers for Disease Control and Prevention (CDC).1 Though people who contract HIV, get tested and go into treatment have every chance to lead a long life, 13,712 people diagnosed with AIDS died in 2012 in the U.S. In 2010, there were around 47,500 new HIV infections in the United States. About 1.2 million people in the United States were living with HIV at the end of 2011, the most recent year this information was available. Of those people, about 14% - 168,000 people - do not know they are infected. And the band played on.
It was in this frame of mind that we sought professional help, reaching out to Carol A. Kemper, MD, FACP, a clinical associate professor at Stanford University in Palo Alto, CA. An HIV disease specialist who has been treating AIDS patients for more than two decades, Kemper is also the longtime author of a lively column in our sister publication, Infectious Disease Alert.
HIC: Could recent reports of an HIV variant in Cuba that can progress rapidly to AIDS (less than three years) have a thin edge of a silver lining? Could such variant strains of HIV be a wake-up call for risk groups that seem to have grown complacent about AIDS prevention?
Kemper: “I don’t think the news from Cuba will have much of any effect. Complacency is a real problem - HIV just doesn’t sound that scary anymore. People used to die before, all the time, it was all over the news, your friends died. But now you just take some pills. Younger people don’t understand it means years of doctor appointments and blood draws, multiple medications every day, as well as potential short and long term side effects. To some degree, this may be partly our fault. We’re so thrilled with our success at treatment, the message that this is still a serious, life altering and potentially life threatening disease gets lost. Drug companies have also been faulted for portraying beaming healthy looking people, climbing mountains, etc. and taking HIV meds.”
HIC: There seems to be a recurrent theme in the news of people not disclosing their HIV-positive status to sexual partners.
Kemper: “Disclosure is a problem. Data suggests that at least 25% of HIV-positive persons fail to disclose their status for a sexual encounter. This occurs for a variety of reasons, but the obvious ones are either they don’t care - I believe this is usually not the case - or they fear rejection or get lost “in the moment.” Drugs may play a part in this.”
HIC: Why haven’t all of the HIV AIDS educational efforts had more of an impact?
Kemper: “I think the real problem is perception of risk, especially among young people. It’s not really knowledge. Behavioral health and prevention folks always go on about ‘education.’ I had a friend who once said, ‘Everything you need to know about safe sex you could write on the back of a 3 x 5 recipe card in crayon.’ You just don’t believe it will ever happen to you. Younger people just do stupid things at times. Maybe that is how we learn, and figure out what our boundaries are. In addition, people’s perception of risk varies considerably. What are the chances of getting HIV? I bet most young people couldn’t tell you. And if I told you, if you have sex with that person, the risk of acquiring HIV is 1 in 1000 - that may sound risky to one person - and to another, not risky at all. I mean 1 in 1000 - why should that tiny figure influence anyone’s behavior? But if you have unprotected risky sex 350 times in the next year - your risk increases to 1/3. No one really thinks that way. It’s really about cumulative risk. That is why getting out of the shower every morning is actually more dangerous than sky diving.”
HIC: That’s a fascinating point, but as you say cumulative risk may be too abstract a concept to give people at risk much pause.
Kemper: And people’s perception of risk may be altered by their current perceptions. It is similar to any economic equation - some people, especially younger people without jobs or hope for the future, effectively discount their future. If you value the moment more than you care about the future, why would you sacrifice anything now?
It’s an interesting question why some people are more disciplined than others, why do some people work hard and save for the future and others don’t, why does anyone delay gratification? One could argue that people generally are less disciplined than they were in my parents’ generation, and I certainly see a lack of discipline in many young people. How do you instill a sense of hope for the future? How do you teach someone discipline? As my Scotch great-grandmother used to say, having a child make their bed every day prepares them for life and teaches them discipline. Who makes their bed anymore?”
Reference
1. CDC. HIV AIDs Statistics Center: http://www.cdc.gov/hiv/statistics/basics.html
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