amfAR, The Foundation for AIDS Research

Let’s Talk About Sexual Health

A Conversation with AIDS Activist Vanessa Johnson

Published Friday, March 3, 2016

Vanessa Johnson Photo by Trescha HaleyVanessa Johnson. (Photo by Trescha Haley)Four months after finishing law school in 1990, Vanessa Johnson was diagnosed with HIV and given seven to 10 years to live. She watched her partner die of an AIDS-related illness and began preparing to die herself. Since then, Johnson, who turns 58 this month, has been an advocate for women living with HIV/AIDS through organizations such as Common Threads, the National Women and AIDS Collective, Positive Women's Network-USA, and the National Black Women’s HIV/AIDS Network.

While there has been an overall reduction in new HIV infections among women in the U.S. in recent years, according to the Centers for Disease Control and Prevention, women and girls comprised 23 percent of people living with HIV in the United States in 2011; African-American women continue to be disproportionately affected, with an HIV infection rate 20 times that of white women.

In advance of National Women and Girls HIV/AIDS Awareness Day on March 10, Johnson shared her thoughts on progress that’s been made and the challenges that stand in the way of an AIDS-free generation among women and girls.

 You were diagnosed with HIV in 1990. Decades later, have you seen any reduction in the stigma associated with HIV among women?

Somewhat, because of the reduction in new HIV infections. So while we may not be talking about it openly, folks obviously are getting tested. If we’re talking about how HIV-positive people are impacted, there has been no change. My family was supportive, but it didn’t help me overcome my own internalized stigma, which was more about mortality—like, ‘I’m going to die. I have a 6-year-old son who is going to be abandoned.’ But also, I think the reason we are not seeing so much of a reduction in stigma is because the unknown is very frightening.

How much more of a challenge is it to convey the message of HIV prevention when there are relatively few high-profile HIV-positive spokeswomen?

I don’t know of a high-profile woman other than Mary Fisher (AIDS activist), but that was more than 20 years ago when she spoke at the Republican convention. It definitely makes it more challenging. There probably are high-profile women living with HIV, but they are not going to say. They have to think about their careers. We need a champion that will take on this cause. It doesn’t matter what color she is. HIV impacts all women.

What impact do you think new technologies that put prevention in women’s hands, such as the vaginal ring that’s in development, will have on infection rates among women?”

I feel like PrEP, the vaginal ring, and even the female condom give women options.  They also allow them privacy and give them control, as these are methods women don’t need the permission of their partners to use. That being said, there also needs to be a lot more education. For example, you can still be on PrEP and contract chlamydia. PrEP doesn’t start working immediately. Doctors and institutions that are involved in routine testing need to include information about PrEP, especially those working with vulnerable populations, such as sex workers.

In your work with Common Threads, what are you hearing from women who are living with HIV in terms of their greatest concerns?

Access to mental health services and psychosocial support. For a lot of women, an HIV diagnosis intensifies any kind of underlying trauma or mental illness. Being able to connect with other women living with HIV is also important. We need to develop means to improve the economic conditions of women. We also need stronger policies to combat HIV/AIDS stigma and discrimination.

You were on the POZ 100 list of HIV-positive “unsung heroes” in 2013. Why have you become such an activist?

I worked for the New York State Department of Health at the time HIV became widely known. There was a colleague of mine—a young, white gay man—who was diagnosed with HIV. Just the fact that death was so close was frightening. My attitude was that it’s affecting white gay men—who knew that 10 years later I would be impacted by the same disease?! I am from Albany, NY, and I went to white gay male support groups, and they were talking about living, getting medication. I learned my advocacy from them. I strongly believe that we need to educate people about HIV and other sexually transmitted infections. The conversation is not happening. We have to somehow get beyond our fears and righteousness about what we do in our sexual lives. That’s my goal.

Click here for more information about National Women and Girls HIV/AIDS Awareness Day.