As an AIDS service provider, I was always told that the need for written informed consent for HIV testing couldn't be stressed enough. But I also experienced first-hand the difficulty of getting clients to discuss their very personal risky behaviors. And once that challenge was overcome -- once they felt comfortable enough to discuss risk reduction and the need for HIV testing -- I then had to re-establish enough rapport to get written consent before we could actually move forward with an HIV test. Sound complex? It was.
But due to the recently amended HIV Testing Public Health Law in New York State, more people will have access to HIV testing without having to give written consent. The new law states that consent can be given orally, as long as the person understands the test is for HIV, the routes of transmission, and the meaning of the test results.
The amendment also makes it mandatory for health providers to offer HIV testing to all of their patients between the ages of 13 and 64, and to younger people if risks are present. This can only help us fight AIDS, as it is a huge "small step" that will help to normalize and destigmatize HIV. Too many medical providers have been hesitant to provide adequate information and HIV testing in our communities. The HIV stigma that we battle every day (ingrained even in medical providers) not only prevents information from authoritative figures like doctors from reaching those who need it, but also hinders early detection -- one of the most important components of defeating HIV.
I remember meeting one young man who at the age of twelve had engaged in more HIV risk behaviors than most adults I've met. He shared that he had tried to get an HIV test after attending an "HIV 101" workshop that I presented at his school. He went to see his pediatrician, who checked him for "everything." When he returned to get his results, he discovered that "everything" did not include an HIV test. He received a physical examination with bloodwork, but to this day is unsure exactly what that included. He lost faith in his doctor and decided to research some nearby community-based organizations, who also refused to test him for HIV because of his age. He then realized that he had my contact information and reached out to me for support. Since I was an Adolescent Health Education Specialist with the youth department of my organization, I worked to make sure he was educated, counseled, tested, given his results, and linked to necessary care. I hope that with the newly amended law, HIV testing will be a lot more accessible to young people like him, who need it the most.
I also recall counseling a young woman who never believed she was at risk for HIV until she was diagnosed. She shared her thoughts about her relationship with her doctor, saying that if he had discussed HIV testing during any of her many visits, perhaps she would have realized its gravity and taken greater steps to protect herself. At the very least, she could have found out her HIV status at a much earlier stage of the disease. Again, this demonstrates the need for greater integration of HIV awareness and testing into our everyday lives. The message should start at home and flow all through the media, which has such great influence in our society. And we need accurate information, of course!
I've met many people who feel like the amended testing law will have little to no effect on their lives, or the process they follow to test for HIV and other STIs. They talk to me about their lack of access to medical providers due to poverty, lack of insurance, and immigration status. They tell me that all they have left are the community-based organizations, which can provide them with free and confidential services.
Other clients have told me during counseling sessions that they have health insurance and medical providers, but still choose to go to community-based organization for services, including regular HIV and STI testing, education, safer sex and harm-reduction materials, and supportive services. Their reasons range from the bias-free and nonjudgmental environment that these organizations offer to the availability of multiple services available at one place -- something we call "one-stop shopping." It's about establishing a comprehensive and well-rounded model of care that engages community members about overall health and wellness.
I guess there are no shortcuts to education and awareness yet, but that's for another article and another day. Perhaps it'll be when we as society are ready to truly integrate HIV education in all aspect of our lives: real information accessed through school education, faith-based settings and even our day-to-day peer conversations.
As a society, we need to truly integrate HIV education into all aspects of our lives, including comprehensive information in school programs, faith-based settings, and even in our day-to-day peer conversations. I'm not saying that our leaders don't care about HIV, because throughout my years as an HIV educator I've met many teachers, organizers, and faith leaders who take a direct role in spreading HIV awareness. But at the end of the day, we can always learn and improve our efforts to defeat HIV. We can always do more.
Nelson Villegas is the program coordinator of counseling, testing, and referral services at Harlem United.