When I first heard the letters A-I-D-S strung together, I was watching the film version of Rent, the acronym registering as an ominous unknown in my mind. I was eleven at the time, sitting on a hopscotch rug in a dusty attic, wedged between a bouncy ball and my best friend. I didn’t want to admit my ignorance, so I waited to ask my parents the meaning of this elusive term.
“It’s a disease,” they explained, trying to simplify, since I was still young. “It was a huge problem in the ‘90s and was viewed as a death sentence. Now, there is medicine so that infected people can live relatively normal lives. They still haven’t found a cure, but it’s not such a big problem anymore.”
My first understanding of AIDS was that it was obsolete. As I grew more aware of the world around me, all of the information I received concerning AIDS generally implied that this conclusion was correct. Many people praised the development of Highly Active Antiretroviral Therapy (HAART) as the light at the end of the tunnel for infected individuals. There were success stories on all fronts, with The New York Times reporting that “nearly half of New Yorkers with H.I.V. are now 50 or older, ages many never dreamed of reaching.” This optimistic view of the decline of the virus was echoed by most of the public. In a 2009 report, the Public Agenda, a nonpartisan research network, stated, “In 1995, just under half of the public (44 percent) named HIV/AIDS as the most urgent health problem facing the nation—since then, that figure has dropped to six percent.”
It took me seven years and a trip halfway around the world to recognize the extent to which HIV/AIDS is not “over.” Last year, I spent two months living and working in South Africa, the nation with the fourth highest prevalence of HIV. South Africa has a national prevalence rate of 17.8 percent—astonishing when compared with the 0.6 percent prevalence in the United States. I worked in the Kwanokuthula Township of the Bitou region, an area with a reported HIV prevalence of 30 percent (the real number is most likely higher, due to underreporting). I spent my days shadowing a home-based health worker named Apesh, walking around Kwanokuthula and visiting patients. Our patients were quite spread out, so we spent a lot of time talking and traveling. We talked about everything from our favorite meals to race relations in South Africa and grew very close. One day, while stumbling along between the wooden shacks and discussing patients, Apesh stopped suddenly, looking at the ground.
“The patients are very open with me,” she said. “Because I, too, am positive.”
I cracked. I had already met many people suffering from HIV, but this was different. Apesh was not a patient wasting away; she was my everyday companion, a mother, a wife, a gospel singer, and a barbeque lover. Suddenly, AIDS seemed sharply, painfully real.
That day, every time we met someone, Apesh told me if they were HIV-positive. The guy we passed on the way to the bathroom. The woman who owned the fruit stand. The patient whom I thought we were treating for a hip problem. It affected everyone, yet no one was talking about it.
AIDS is not a relic of the past, abroad or in the United States. According to the World Health Organization, 34 million people are currently living with HIV. The virus still has a large impact in the US, but it is overwhelmingly affecting racial and ethnic minorities—the people with the least control over the national conversation. In a poll by the Kaiser Family Foundation, 38 percent of African-Americans aged 15-17 said they were “very concerned” about HIV infection, while only 17 percent of white teenagers interviewed expressed the same fear. This disparity could explain why 64 percent of young people polled by the Kaiser Family Foundation in 2012 said they “rarely” or “never” saw any news coverage about HIV/AIDS in the last year. HIV/AIDS is largely a problem of the underrepresented and underprivileged, but this does not mean that it has disappeared.
While many gains have been made in the advancement of drugs and the accessibility of treatment, there has been little success in decreasing the number of new HIV infections. The number of new US cases per year has remained relatively constant throughout the past decade. Despite this failure to inhibit infection, health teachers and policymakers continue to insist that AIDS is a “preventable disease.” This may be somewhat applicable to the Western world, but it is much more complicated in the so-called “developing” world. Yes, infections are greatly reduced by the use of condoms, but in South African society, which deeply stigmatizes contraception, encouraging their use can be an uphill battle. One of my patients, Phumla, was infected by her husband—an all too common story. Many men hold jobs in the trucking industry, causing them to spend long periods of time away from their families, and many seek companionship elsewhere. This has led to a widespread culture of extramarital sex. While infidelity has become somewhat expected, it is still considered an uncomfortable topic and is rarely discussed. As a result of this silence, condom usage within a marriage is especially unacceptable because it implies a lack of trust. In any sexual situation, proposing the use of contraception implies that the asker is HIV-positive, and so “preventable” becomes much more complex than it initially appears.
While the HIV pandemic in the “developing” world is often recognized, it is usually viewed as a crisis of resources, and one that will abide once treatment becomes available. Again, this is a very limited view of the issue. Access to treatment is essential, but overcoming HIV/AIDS is impossible without addressing poverty and stigma. South Africa recently began providing Antiretroviral Treatment (ARVs) to its citizens, yet the situation there is still dire. Treatment alone is not enough; successful intervention must also consider cultural context.
Phumla, the patient mentioned earlier, is on ARVs, but she is often unable to take them because she doesn’t have food. ARVs cannot be taken on an empty stomach, and missed pills will eventually result in resistance to treatment. Phumla has been advised to give her son formula instead of breastfeeding him so as not to pass on the virus in this way. She laments that she does not always have access to clean drinking water, and so giving her son formula is not always the safer option.
HIV is further complicated by its status as a “physical, social, and emotional disease,” as described by a local nurse. Strongly tied to the twin taboos of sex and drugs, HIV is seen not as a mere virus, but as more of a moral issue. Even though a high percentage of the population is infected in Bitou, almost everyone keeps their positive status a secret. This can seriously interfere with treatment. Apesh explains, “If Home Based Care comes to your house and you are young, they will start gossiping, saying you have HIV.” Many people reject treatment for this reason, preferring to die in dignity.
Conquering AIDS will take more than straightforward medicine: treating AIDS means talking about AIDS. Uganda is widely known as an AIDS success story, most likely because of the introduction of open and honest communication. Theorized to be the virus’ place of origin, Uganda experienced an initial surge in infections during the late 1980s. Unlike most other leaders at the time, Ugandan President Museveni was outspoken about the crisis, advocating sex education and an “ABC” approach (Abstinence, Be Faithful, Contraception). This approach resulted in a sharp decrease from a prevalence of 18 percent in 1992 to only 6 percent in 2004, according to The World Bank. Increased conversation about HIV/AIDS has also provoked productive results in the United States. For example, basketball player Magic Johnson escalated openness about HIV when he bravely announced his positive status in 1991. AVERT, an HIV/AIDS information and resource center, describes how “in the month after he revealed his status, the number of people being tested in New York City increased by almost 60 percent.”
Sometimes it seems that people only discuss the virus when it is in fashion, as some type of activist fad. It is easy to join in AIDS activism on World AIDS Day, when Lady Gaga shows up in a condom suit or Bono makes a speech. We must remember that people die of AIDS-related causes every day, not only on December 1st. Advocacy is not simply a trendy topic of discussion, but rather should be a sustained effort. Posting a Facebook status and wearing a red ribbon are nice gestures, but they do more to serve that person’s image than to contribute to the cause.
It is likely that HIV will be the challenge of our time, as the disease implicates issues of sexism, homophobia, and poverty. Stephanie Nolen, author of 28 Stories of AIDS, elaborates, “AIDS is not an event, or a series of them; it’s a mirror held up to the cultures and societies we build.” We commit ourselves to “never again” stand by as atrocities occur, but is AIDS not also a genocide, albeit a biological one? As Bono declared in a 2010 speech, “History will judge us on how we respond to the AIDS emergency…whether we stood around with watering cans and watched while a whole continent burst into flames…or not.” HIV/AIDS is not a problem of the past; it is the crisis and the opportunity of the present.