#AIDS2018 — A Reflective Opinion Piece

Over the last week I received lots of texts from friends wishing that I was in Amsterdam with them, but in 2014 I decided it was time to pass on the baton, and I am very happy that our immediate past chair, Sarah, and the current acting CEO, Heather, young women whom I encouraged to attend the conference, were there.

The Conference gave me many moments to reflect on several other women I knew in the mid-nineties – pioneers, who are no longer here: Lynde Frances in Zimbabwe, who setup The Centre, a safe healing space for so many people living with HIV; Susana Murni, elegant, gracious, well-educated, who established Spiritia, which is done amazing work throughout Indonesia; Oom Junsuda from Thailand, who established the Whistle Stop Babies Home; Winnie Chikafumbwa whom I managed to get to address the World AIDS Day event I coordinated in Melbourne City Square in 1996, and who established the Malawi Network of People living with HIV; Sarah Jane Lazaro, who experienced judgment, social ostracism, and hideous backlash from the media in the Philippines. And Colleen Perez, the only person who was public about living with HIV in the tiny Pacific Island of Guam. Colleen and I attended the Geneva AIDS conference in 1998. It was exhausting as each of us was starting to have compromised health. I was the lucky one who survived. All these women have gone before me and I speak their names because they were the building blocks of what’s happened in each of their respective countries since.

I listened on YouTube to the Dutch Princess addressing AIDS2018, talking about the drivers of the epidemic: gender inequity, lack of education for women, lack of information on sexual and reproductive health, inability of women to assert their rights within a sexual relationship. This was the subject of my first poster presentation at the 1994 AIDS conference in Japan, where I posited that young women will continue to be disproportionately affected by HIV until gender equity is realised. The message has not changed.

Of course, the epidemic changes among different people at different times in different regions.Globally, gay men have HIV rates 19 times greater than the general population. Currently the big story is the very rapid spread of HIV in Eastern Europe. These issues highlight the legal and policy environments that do not respect the rights of people who choose to live their lives outside the cultural and sexual norms. Many ex-British colonies left a legacy of anti-sodomy laws. Very few countries consider sex work a legal form of income generation. Men who have sex with men, sex workers, and people inject drugs have no legal redress or voice in so many countries, which results in a lack of education around HIV vulnerability.Because of the stigma associated with being a sex worker, a drug user, or gay, and the illegality of those choices, the most vulnerable people often hide from authorities and health care services, including prevention and testing, resulting in many late HIV diagnoses.

Nevertheless, HIV predominantly affects more women than men in the world. Recently I attended an HIV function in Melbourne and was asked by a man who realised I was a HIV-positive, “How did you get it? Did you sleep with a gay man?” I was flabbergasted by his naivete. I replied, “How do you think most people get HIV? By having unprotected sex with someone who does not know they have HIV.”

The greatest risk for HIV transmission in Africa is being young, female and married.Young, uneducated women have very little choice in their sexual relationships.Globally, one in three people living with HIV is under 25. Of the 36 million people living with HIV, 15 million have no access to the antiretroviral meds that have kept me alive for the last two decades. Nearly one million people died of AIDS-related illness last year. The journey is far from over.