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Hi John,
I am a young, Black, trans woman living with HIV. When I was diagnosed as a teenager, I realized how few resources existed for young people like me to help us make informed decisions about our health care and our futures. That’s why I joined youth organizing programs with Advocates for Youth, and worked as a counselor to those newly diagnosed with HIV.
Today, for National Black HIV and AIDS Awareness Day (NBHAAD), I’m reflecting on my own experience living with HIV – and what I can do to support other young people like me trying to make sense of their diagnosis. I hope you’ll take this note to heart and see what you can do for young people in your life who may be living with HIV or are at increased risk.
First things first, living with HIV is not shameful. But it is real, and something we need to deal with both as a society and on a personal level. We can’t ignore the experiences of so many young Black people like me – and of the countless folks I’ve seen go through so much, from deeply held stigma, to difficulty finding resources, to severe illness.
I’ve also seen defiance, commitment, and joy from folks like me who are determined to survive and thrive.
Five years after my own diagnosis, I share my own HIV status with almost everyone in my life. That’s because stigma can have real, dangerous and far-reaching consequences:
- It can cause school districts to cut back on HIV education
- It can cause young people to avoid HIV testing, to be unable to keep up with medical treatment, and to experience great personal suffering.
- Stigma even contributes to a lack of doctors who are knowledgeable about and have experience working with patients with HIV in some communities – as I experienced firsthand when I moved to my current hometown.
Look, 54% percent of HIV cases among young people occur among Black youth even though we make up less than 15% of the youth population. We all need information, not stigma. We need to learn how to reduce our risk, what to do if we’re positive, and the power of both preventative measures like PrEP, as well as medications that make the level of HIV in the blood undetectable (and therefore, untransmittable).
But around the country, districts and states are limiting rather than expanding HIV education. As a young person who has worked with many of my peers around HIV prevention, treatment, and care, I can tell you that classes that tell us to “just say no” won’t work -- we need real skills and tools. We need consistent HIV education that becomes more in-depth each school year – and that doesn’t end in 6th grade, as mine did.
Today I'm also thinking about the mothers. Black women are more likely than women of any other race to experience HIV, but not many education or awareness campaigns are aimed at them. Thankfully, Advocates for Youth is changing that with a new program launching in March.
I’m working towards a world where everyone can get the education, the health care, and the support they need to live a healthy, stigma-free life. I can’t make that vision a reality alone – we all need to play a role in this work.
The CDC’s Let’s Stop HIV Together campaign is a great starting point for folks who want to contribute to HIV prevention, treatment, and destigmatizing efforts. By getting tested, learning about PrEP, and getting treatment (and sticking with it if we test positive), we can all help end HIV…together.
In solidarity,
Karmella Pettigrew
Youth Activist, ECHO (Engaging Communities around HIV Organizing)
Advocates for Youth
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