Joining Health GAP June 8 in protesting the exclusion of key populations from the United Nation’s High Level Meeting (HLM) on HIV, I was reminded of AIDS activist Keri Duran and others who were part of a four-year campaign that worked to get the U.S. Centers for Disease Control and Prevention (CDC) to change the definition of “AIDS” to include women.
On December 3, 1990, in an intense downpour, activists from around the country gathered outside the CDC headquarters in Atlanta. Disrupting business as usual, with fake blood across her face and down her neck (an aesthetic similar to one that many of us sported outside the U.N.), Duran got on the megaphone and yelled, “I’m 28 years old, and I’m dying, and no one gives a shit. Get off your asses and do some work.”
Then, as now, exclusion kills. Before the CDC changed the definition, women living with HIV, like Duran, were denied lifesaving medication, housing and government support. They lost jobs, their children and the right to live.
Twenty-six years later, exclusion still kills. As The Global Forum on Men Who Have Sex With Men & HIV (MSMGF) has reported, “Prior to HLM, conservative Member States rejected accreditation of several civil society groups to attend the meeting for several groups led by key populations, including gay men and other men who have sex with men, transgender people and people who use drugs.”
By failing to include groups of drug users, sex workers, gay men and trans and gender-nonconforming folks, this HLM is missing an opportunity to hear strategies used on the front lines; key information about how deeply impacted populations achieve and maintain health; and insight to the resources needed to reduce the harm of HIV.
At a June 7 forum titled “The Impact of Civil Society Exclusion on Ending the AIDS Epidemic by 2030,” held before the Housing Works march to the U.N. demanding inclusion, we heard how exclusion leads to both systemic and personal harms. Daria Mogucheva from the Eurasian Network of People Who Use Drugs spoke about how people with HIV—and those at risk around the world—self-discriminate, selecting not to seek out possibly lifesaving services.
We see the results of the exclusion with the June 8 release of the Political Declaration coming from the HLM. It does not address the life chances of key populations; fails to include specifics around political commitment and financial resources; and “woefully misses the mark in highlighting legal and policy frameworks that stigmatize and criminalize our communities worldwide,” states The Global Network of Sex Work Projects, The Global Network of Trans Women and HIV, Global Action for Trans* Equality, MSMGF, and the Global Platform to Fast-Track the HIV and Human Rights Responses Among Gay and Bisexual Men and Other Men Who Have Sex With Men.
Keri Duran died in 1995. She worked especially hard to tell the world about the impact of AIDS on lesbians and drug users. The campaign to include women in the definition of HIV/AIDS was a collaboration between women in prison and men and women on the outside from a variety of populations. The definition would not have changed if different members of civil society, activists, policy makers and others did not sit, fight and live together.
We must ask: What good are medical, political and cultural breakthroughs if progress can be so easily rolled back and if the people most in need of services can be made to feel like their lives are not worth living? It is sad to think that if Duran were alive she would have been excluded from the HLM, just as it is sad to think about all the amazing people who are alive and are being left out.