July 29, 2012— -- Linda Scruggs is a middle-aged African American woman from the Baltimore area who has been HIV-positive for 22 years.
This week, she stood where Hillary Clinton, Elton John, and Dr. Anthony Fauci of the National Institutes of Health stood – before the scientists and delegates to the International AIDS meeting in the nation's capital.
Washington, D.C., is a city with an HIV prevalence comparable to that of some third world countries, and the rates are even higher among African Americans.
Scruggs did not have the weight of government money, the latest science or star power. But her message brought thousands at the AIDS conference to their feet for a rare standing ovation.
Her message is a simple idea -- to change the focus on an HIV research and advocacy community that critics say is too focused on men.
"Treatment and systems were not designed for us; [they were] designed for a gay male society," she said. "No one was thinking about us."
The message comes at a time when most newly infected individuals are heterosexual women and when black women comprise one of the fastest growing demographics affected by HIV in the United States. However, Scruggs said, she sees a lack of female leadership in her community and at the national level. She believes that if the majority of persons living with AIDS are women, then the international organizations tasked with ending AIDS should have a greater percentage of women.
"We need to change the game, because the game is broke," she said, adding that the international response "must meaningfully involve women at all levels of authority" including government, corporate, and local levels. An important part of creating an AIDS free generation will be educating young women, she said, and that this should begin "when we birth our daughters into the world."
The concern over the plight of U.S. women with AIDS was echoed by many who spoke to the same problem on the global stage.
Rao Gupta of UNICEF said 3 million of the 4.8 million young people worldwide living with HIV are girls.
"These adolescent girls… represent an unfinished agenda in the AIDS response and our greatest hope for turning the tide of the epidemic," Gupta said, adding that educating girls aged 10-14 before they become sexually active is a top priority.
But perhaps the group of women living with AIDS whose voices are least noticed are prostitutes and other female sex workers. Since these women, along with IV drug users, are banned from getting a visa to enter the United States, an alternative AIDS conference was organized in Kolkata, India. There, sex workers from 40 countries gathered to protest their inability to enter the U.S. to demand greater rights for sex workers.
The task of making their voices heard in Washington, D.C., rested on the shoulders of Cheryl Overs, an activist for sex workers' rights who spoke at the conference. She criticized radical religious groups, the police, academia and governments -- institutions that she said purport to "help" sex workers but which often do more harm to these women than good. She said that when police arrest or detain sex workers, little is done for these women afterward, which inevitably leads them back to sex work.
"We need a law that gets commercial sex work out of dangerous places and into safe ones," Overs said.
Recent outreach programs however have begun to show promise. Avahan, a project funded by the Bill and Melinda Gates Foundation, offered more than $200 million over five years to build infrastructure for sex workers and provide them with preventative health education. The program helped stem the tide of HIV transmission in India and helped sex workers better integrate into society. In a surprising twist, sex workers from one area even banded together and now have a representative in the local government.
Also speaking at the conference was Debbie McMillan. A transgendered woman, McMillan was homeless at 14, became a sex worker, got addicted to drugs, and was incarcerated and sent to a male prison.
The specter of HIV first struck McMillan's mother, also a sex worker.
"While she was infected and living with my grandmother, she had one cup, one fork, one spoon, one plate," McMillan recalled. "After she used the bathroom, my grandmother followed behind her, bleaching everything."
Two months after her mother succumbed to disease related to HIV, McMillan herself received an HIV diagnosis.
"I was 20 years old and convinced I was going to die," she said.
For McMillan, support came in the form of a program called "Bridge Back," a program that has since shut down due to lack of funding. But McMillan is keeping up the fight, and she now works to help other transgender people at times of need.
"[T]ransgender persons, sex workers, and IV drug users, people like me, should be included and part of the solution," she said.
While the women who shared their stories emerged from very different backgrounds and circumstances, HIV is the common thread that connected all of their stories. But their talks also showed another commonality beginning to emerge -- that of hope.
Scruggs, who shared that she received her diagnosis while pregnant, said doctors at the time had advised her to terminate her pregnancy -- for both her and her unborn child's sake. They said her baby wouldn't survive three years, and that if she had an abortion, her life expectancy was five years.
It was a tough decision, she said. In the end, she "gave birth to the most handsomest young man in the world."
Scruggs' son recently turned 21 -- and he is HIV negative.