Frika Chia Iskandar’s stature and personality suggest she’s more likely to be a bubbly seventeen year old than a twenty-six year old HIV-positive activist. The Indonesian woman was barely able to see over the podium at a recent conference while retelling stories about her family’s reaction to her positive status, including a story about them buying her a separate set of utensils because they feared she could infect her siblings.
“I’m the new face of AIDS. I’m young and Asian,” said Iskandar, who was born in 1981, the year the disease was first recognized in the U.S. “This isn’t something that’s only happening in Africa.”
Iskandar, who works as an advisor to the Asia Pacific Network of People Living with HIV, got me thinking seriously about Americans’ perceptions of what many consider a disease that primarily affects other continents and has little impact on our daily lives. After hearing her recent speech at the thinkBIG Conference on International Women’s Health and Human Rights at Stanford University, I started thinking about how there seems to be a sense among young women I know that HIV is a problem in India and Africa, but one that doesn’t necessarily affect our lives here in America. Are we as young women thinking about the HIV/AIDS and protecting ourselves enough?
The largest number of new HIV/AIDS cases in American women is now among those between the ages of fifteen and thirty-nine, and that group seems to approach the issue with attitudes of “it won’t happen to me” or “I already know about it, so leave me alone.” These indifferent approaches are frustrating given how easy it is to take a more active role in protecting ourselves and getting tested when finding free confidential testing locations is but a few clicks away. And one of the most influential things we can do doesn’t require money or even much activism; it’s simply starting more conversations with friends.
The lack of dialogue about infection and treatment for HIV/AIDS is sadly confirmed in talking with women my age. Not only are they having few conversations about the global pandemic, but most of the women I asked said they haven’t talked about the disease or how to prevent it in more than a year.
Pooja Bhatia, a twenty-four-year-old strategic planner, explained, “I think people our age talk about HIV/AIDS in the context of developing nations. I rarely hear someone talk about how HIV/AIDS affects them personally.”
Social justice documentary filmmaker Alley Pezanoski-Browne, twenty-four, added: “I don’t think there is a ton of dialogue about HIV and AIDS among people our age. We know it exists and we need to take precautions, and then we don’t worry about it because I think very few of us actually know anyone our age who has HIV or AIDS.”
But we do know people who we may not realize have HIV/AIDS, and certainly not everyone who’s infected knows their status. While life-saving anti-retroviral drugs mean that HIV-positive people are living longer, more than 126,000 American women are currently infected.
I’m not suggesting women scare their friends into thinking their chances of infection are much higher than they actually are, or that they spend their next paycheck on (Product) RED wares sold by Apple, Gap, or other retailers. But we owe it to ourselves to pay more attention to the havoc the disease is wreaking on women worldwide and practice methods that will decrease our own risks. When we so carefully select our sunscreen and birth control medications to protect our bodies, why are we being so passive in finding out how we can keep from becoming infected?
While 12,000 new infections annually among American women doesn’t sound very high, Iskandar left me with an unnerving consideration. “We don’t have to wait until other regions more similarly resemble those that are most devastated. Even though prevalence rates are still low here, they are still numbers. They’re still lives.”
Hearing about AIDS in America as major milestones are reached, such as the twenty-fifth anniversary of the epidemic, but not frequently in day-to-day news coverage, tricks us into thinking that the disease isn’t very worrisome. I thought Hung Nguyen, a twenty-six-year-old MBA student, did a good job identifying the reasons why our peers are more likely to talk about STDs (and many times more likely to find themselves discussing Oscar fashions) than about HIV/AIDS. “There’s not a lot of perceived relevance for us,” said Nguyen, who came to the Stanford conference in preparation for a consulting trip on human trafficking in Cambodia and Thailand. She said that while she’s always been interested in women’s issues, her knowledge about HIV/AIDS has primarily been academic. “My friends and I read about the disease when there’s a major piece in the New York Times or when events related to it come up, but we don’t talk about it very often.”
In the U.S., we are fortunate to have access to testing and drugs that aren’t available in many parts of Eastern Europe, sub-Saharan Africa, and Central and East Asia—places the World Health Organization reported have had the steepest infection increases this decade. Protecting our sexual health is only part of what we can do when it comes to preventing the devastating effects that AIDS has on women globally. The national women’s partnership, Women Engaging Globally, summed it up best: “American women must continue to demand comprehensive and medically accurate sexuality education programs, access to the full range of contraceptives, and full funding for global HIV/AIDS programs for the well being of all women at home and abroad.”
People seem quick to react with pity for those suffering and dying thousands of miles away—something they can feel momentarily sad about and then tune out. But there is a corresponding—and baffling—sense of disaffectedness about the effect HIV and AIDS continues to have domestically, where AIDS is the number one cause of death among black women age twenty-five to fifty-four
When asked about other factors that affect the amount of risk women our age face, Pezanoski-Browne said: “I think the fear of HIV and AIDS has subsided because we are pretty informed about how to protect ourselves, but that might cause us to be not as vigilant about protecting ourselves as we should be.”
I was surprised to find that unprotected heterosexual sex is the cause of 80 percent of infections, with intravenous drug use a distant second. This provides plenty of incentive for limiting the number of sexual partners we have. Since the risk of infection increases exponentially with each, communication about status and condoms is imperative with every partner.
But some other prevention tips don’t seem to be such common knowledge. The U.S. Department of Health and Human Services has a helpful list, including some common sense reminders worth hearing again, such as using a male or female latex condom correctly and consistently.
There’s a wide range of actions we can start taking immediately that vary from simple (talking to our partners and friends) to more involved, but just as important (advocating for more news coverage and attention for women living with HIV/AIDS). “There is too much at stake to be indifferent,” Dr. Stephen Lewis, former United Nations Special Envoy for HIV/AIDS in Africa, said as he closed the Stanford panel. In talking about young Americans’ consciousness of the disease, I couldn’t have said it better: “It’s so important to make these issues a part of your life because God knows they will make a permanent impact on it.”