The role of women as researchers, clinicians, caregivers and advocates is a little-told story of the HIV/AIDS pandemic. So organizers of a panel for today’s 10th annual National Women and Girls HIV/AIDS Awareness Day decided to focus on the contribution that women have made to understanding, preventing, treating and — one day — ending HIV ever since the first reports in 1981 of an unusual illness among young gay men that was later determined to be AIDS.
The free, public panel will be held from 2:30 p.m. to 4:30 p.m. at Fred Hutchinson Cancer Research Center’s Pelton Auditorium. Speakers include:
The idea for the panel has been percolating since August, when French virologist Dr. Françoise Barré-Sinoussi visited Fred Hutch to deliver the keynote address for the Conference on Cell and Gene Therapy for HIV Cure. Barré-Sinoussi shared the 2008 Nobel prize in medicine for her 1983 co-discovery of the virus that causes AIDS and in recent years has become a prominent supporter of cure research.
“Women as providers, as scientists, have been involved since the very beginning in the United States and abroad, advancing knowledge of HIV, advancing treatment,” said Dr. Michele Andrasik, a social scientist in Fred Hutch’s Vaccine and Infectious Disease Division (VIDD). “I think that sometimes gets lost.”
Andrasik herself is one of those women. She works to increase knowledge about HIV/AIDS in marginalized communities and to involve communities in clinical research.
Prominent HIV researchers at Fred Hutch include Dr. Julie McElrath, senior vice president, VIDD director and principal investigator and director of the HIV Vaccine Trials Network’s laboratory program, and Dr. Glenda Gray, co-leader of the HVTN and director of its African programs. Both have been involved in HIV care and research since the beginning of the epidemic.
So has Dr. Connie Celum. Today a professor of global health and director of the International Clinical Research Center at the University of Washington and an affiliate investigator at Fred Hutch, she trained as a doctor in San Francisco in the 1980s, just as AIDS appeared. At a recent talk at the Conference on Retroviral and Opportunistic Infections, held in Seattle in late February, she recalled those dark days.
“I still vividly remember the primarily men but a few women who came in in the 1980s and who often would die within a few days and had to deal with coming out [as gay] to their families, and we had virtually no knowledge, no treatment,” she said. “It’s quite remarkable to think as a physician now, almost 30 years later, we have approximately 30 drugs and once-daily treatments — so different from even 15 years ago.”
Cellum played a key role in that progress. She spent a decade trying to determine whether treating or suppressing genital herpes would prevent HIV. It didn’t. But from the observational data she accumulated, she saw that suppressing HIV with antiretroviral drugs did reduce transmission. Later, in a landmark study in Kenya and Uganda known as the Partners PrEP Study (for pre-exposure prophylaxis), she showed that in heterosexual couples in which one partner has HIV and the other does not, use of anti-HIV drugs by the uninfected partner significantly reduced their risk of becoming infected. The study paved the way for the approval of the first-ever HIV prevention pill.
Cellum will talk at today’s panel about her career in HIV prevention, with an emphasis on Africa in the past decade. She will discuss what research is needed to determine whether PrEP can be used effectively by young women in southern Africa, who have high rates of HIV infection in their teens and early 20s. And she will talk about the need for greater advocacy for and participation by women in research, including PrEP and HIV vaccine research.
In addition to leading as clinicians and researchers, women have played a key role in the HIV epidemic as volunteers, activists and advocates. Some were drawn to help because of deep sense of compassion or religious faith, others through friendships or family.
For the Rev. Mary Diggs-Hobson, it was both faith and family.
Now an associate pastor at Seattle’s Damascus Missionary Baptist Church, Diggs-Hobson was in chaplaincy training at Virginia Mason Hospital when she was assigned to the Bailey-Boushay House, the first skilled nursing center in the country built specifically for people with AIDS. It was the early 1990s, before antiretroviral drugs, when an HIV diagnosis was an almost certain death sentence.
“It was a devastating time,” she said. “It gave me the opportunity to experience HIV and AIDS up front and personal and close, and to understand some of the issues that were there.”
As an African American chaplain, one of the issues that stood out to Diggs-Hobson was the lack of engagement by the black faith community despite the epidemic’s disproportionate impact on black men and women.
“I really began to understand the need for education and awareness within the black community to address the stigma and the fear,” she said.
But her involvement took a more personal turn in the mid-1990s, when her oldest son, Reginald Diggs, was diagnosed as HIV positive.
“As a mother, to see the devastation and the tragedy, how it impacted not only the individual person living with HIV but the family and community — that just fueled me and my family to do more,” she said.
She is not alone. Jeanne White Ginder lobbied the federal government to create the Ryan White HIV/AIDS Program after her young son Ryan was expelled from school and essentially chased out of town after contracting HIV through a blood transfusion; the program continues to provide care for people with HIV today. Elizabeth Taylor became one of the first public figures to address HIV after her close friend and sometimes leading man, Rock Hudson, died of AIDS and her daughter-in-law, Aileen Getty, revealed she was HIV positive. In 1985, Taylor co-founded the Foundation for AIDS Research.
Diggs-Hobson co-founded and remains the executive director of African Americans Reach and Teach Health (AARTH) Ministry, a faith-based organization established to respond to HIV/AIDS and other health issues affecting people of African descent. The need remains great: According to the most recent figures from the U.S. Centers for Disease Control and Prevention, African Americans accounted for an estimated 44 percent of all new HIV infections among adults and adolescents in 2010, despite representing only 12 percent of the US population.
Reginald Diggs died in 2007 of congestive heart failure from a genetic kidney disease, but his mother remains committed to the cause of bringing together the faith and health communities. For the past seven years, AARTH has hosted a conference that does just that. This year it will be held April 24 and 25 at Seattle University.
“This is work that is born out of experience, out of a call to ministry,” Diggs-Hobson said. “And it’s born out of the heart of a mother.”
Of the panel members, Nicole Price jokes that she is the only speaker without the title “Doctor” or “Reverend” before her name.
“I have a unique perspective,” she said. “I’ve been living with HIV for 14 years.”
As valuable as that perspective is, it is not the only one that Price brings to the table. As program manager for BABES, she is also an advocate and an educator. She follows in the footsteps of HIV-positive women activists such as Elizabeth Glaser, who founded the Pediatric AIDS Foundation after she learned she’d been infected with HIV from a blood transfusion and unknowingly passed on the virus to her two children, and Mary Fisher, who was one of the first women to speak out publicly about acquiring HIV sexually when she addressed both the Democratic and Republican conventions in 1992.
Price learned she had HIV at age 25 after an ex-boyfriend was hospitalized with AIDS. Her experience, she said, is all too typical.
“Women don’t think they’re at risk for HIV,” she said. “They think it happens to gay men. They find out they’re positive when they’re pregnant or when they get sick or when their partner gets sick.”
At the time of her infection, she had been using drugs. The shock of the diagnosis led her to seek treatment for a meth addiction and move from California back to Bothell, Washington, where her mother lives. She’s been clean ever since.
But she still had not yet come to terms with her HIV diagnosis or even talked very much about it. Besides the ex-boyfriend, she didn’t even know anyone else who was positive.
Her mother had heard about BABES, a Seattle-based network of HIV-positive women who provide education and support to other HIV-positive women. Price sought counseling there in 2004 and within months was working as a peer counselor herself. She became program manager in 2011.
In the United States, women make up about one in four people living with HIV. Only about half of women with HIV are getting care, and only about four in 10 have the virus under control.
Globally, the numbers are even higher: About 52 percent of people living with HIV and AIDS in low- and middle-income countries are women, according to the UNAIDS 2013 Report on the Global AIDS Epidemic.
Some of the barriers to treatment are the same as for men: poverty, lack of access to health care and the lingering stigma that causes people to hide their status or not seek testing. For women, the threat of partner violence and the simple fact that they tend to play the role of caregivers to others, not themselves, also delay care.
“Women in general put themselves last,” Price said. “They put their families, children, home, bills, grocery shopping first.”
Knowing if you are infected and getting and staying on treatment are especially important now that it’s been shown that antiretroviral treatment improves health, extends life and significantly reduces the risk of transmitting HIV to others.
In fact, one of the pleasures of Price’s work is assuring women who have just been diagnosed that, no, they are not facing a death sentence.
Price just turned 40. She greeted the milestone birthday with a far different attitude than many of her friends.
“I’m excited I’m 40,” she said. “At 25, when I was diagnosed, I was awfully scared I wouldn’t see 40.”
Tuesday’s panel, “Honoring Women’s Contributions to the Fight Against HIV,” will be held from 2:30 p.m. to 4:30 p.m. at the Pelton Auditorium of the Weintraub Building on the Fred Hutch campus, 1100 Fairview Ave. N. The panel is sponsored by the U. S. Department of Health and Human Services Region X and Fred Hutch.
Mary Engel is a former staff writer at Fred Hutchinson Cancer Research Center. Previously, she covered medicine and health policy for the Los Angeles Times, where she was part of a team that won a Pulitzer Prize for Public Service. She was also a fellow at the Knight Science Journalism Program at MIT. Follow her on Twitter @Engel140.