When I tell people that I work with HIV positive teenagers, their first response so often is, "Oh that must be so sad." Desperate to set things straight, I immediately tell them that the vast majority of youth with HIV in the U.S. are physically healthy, with long lives ahead of them. For the most part, they look and act the same as their uninfected peers and they struggle with the same adolescent-related challenges.
When I found out that William,* one of the young people I work with, had been hospitalized for a week, it was the first time in a long while that I had to face a reality of life with HIV. Despite enormous therapeutic advances during the past 15 years, disease management can be elusive. Adherence to a strict medical regimen is a substantial challenge to young people. Missing doses can lead to the development of drug resistance, increasing the likelihood of developing life-threatening opportunistic infections.
It never crossed my mind that William could get sick. Nearly overnight, his T-cell count (a form of white blood cell) had dropped to 130 (less than 200 being high-risk for developing AIDS-related illnesses); he was unable to walk into the ER. I forget how powerful this disease is and how fragile those who house it can become. And forgetting can be just as bad as not knowing.
In a landmark effort to include the voices of people living with HIV, the White House Office of National AIDS Policy (ONAP) spent the fall of 2009 conducting focus groups nationwide about how to shape the country's national AIDS strategy. Of the many issues discussed in the ONAP report, one cross-cutting theme was strikingly apparent. People living with HIV believe their disease has been forgotten. Complacency is like crack to a disease that thrives on ignorance and mis-education.
There are currently 1.1 million people living with HIV in the United States, and an estimated 250,000 (one in five) do not know their status. Of the roughly 56,000 people who become infected every year, 40% will not learn of their status until they have developed AIDS. This means people can be living with the virus, untreated, and therefore highly transmissible, for more than 10 years without knowing it.
This week, HIV/AIDS advocacy organizations around the country are encouraging the public to "Get Yourself Tested," a campaign that culminates on Sunday, June 27, National HIV Testing Day. Led by innovators from movements such as Greater Than AIDS, the campaign urges Americans to get an HIV test, know their status, and protect themselves and their partners from contracting HIV and other sexually transmitted diseases.
The reasons that people, young and old, are not getting tested for HIV are many. For some, it's purely about not knowing where to go. With clever widgets that allow you to type in your zip code and find the nearest testing sites, like that on our website, it's easy now.
Stigma plays a large and much more complex role. The pervasive stigma associated with living with HIV, especially in some of the most high-risk communities, keeps people from testing for HIV or worse yet, even acknowledging that they are at-risk.
Despite widespread media campaigns and celebrity endorsement, making the HIV/AIDS epidemic one of the more glamorous to support, many Americans still do not know how HIV is spread. In 2006, a Kaiser Family Foundation survey found that 37% of 18-25 year olds were unsure if HIV can be passed through sharing a glass, kissing, or sharing a toilet seat. One cannot get HIV in any of these ways. This challenge will take many more years of activism and education to overcome. One simple solution is to routinely offer HIV testing at medical encounters.
A third and oft-cited reason for not testing is that people do not believe they are at risk, or that as the threat of AIDS-related death diminishes with advances in treatment, unprotected sex is worth the risk. Among the youth I work with, this is terrifying. Twenty-nine percent of HIV diagnoses occur among young people 13-29, yet only 19% of teenagers report ever having been tested for HIV. Youth are typically medically underserved; if they do become infected, they risk living with the virus for their sexually active years before learning that they are sick. The lack of streamlined sexual health education in schools and the disappearance of large-scale HIV awareness campaigns, coupled with a notion of invincibility and exposure to over-sexualized media, means that young people continue to exhibit high-risk behavior while unaware of or ignoring prevention messages.
I asked William what his message is for young people about getting tested for HIV. "Nike style," he said. "Just do it." It's time to put the excuses away and join the movement of people around the country who are getting an HIV test this Sunday. We know so much about this disease. We know that it is entirely preventable and yet it wreaks havoc on people. We know that a positive test result is no longer a death sentence if medical care is accessed appropriately. We know that up to 70% of new transmissions are due to people who do not know their status, debunking the urban legend that people with HIV knowingly spread it to others. Ignorance and complacency are the root causes of the spread of this disease. We know all of this. It's time you know your status. Get tested for HIV this week.
*Name has been changed.