Contrary to what some might think, HIV is no longer just a gay man’s disease.
The Centers for Disease Control and Prevention (CDC) estimates that 25 percent of new cases of HIV in the United States are women and that the majority of these women contracted the disease from heterosexual sex.
Although HIV was given the name GRID (Gay Related Immune Deficiency) by scientists in 1982 when the diagnoses began, in 2016 HIV in women is a real but underreported, and in many ways, underserved epidemic.
The federal Department of Health and Human Services’ Office on Women’s Health reports that approximately 217,000 women in the U.S. are living with the virus.
While no sector of society is immune, the numbers are especially high in lower-income African-American and Latina populations.
Feeling Alone and Helpless
When Martha Zarate, a single mother from San Diego who’s originally from Mexico, was diagnosed with HIV in 2000, she felt alone and helpless.
A victim of intimate partner violence (IPV) for many years, she turned to illegal drugs.
“When I went to a clinic to do a pregnancy test in 2000, they told me I was five months pregnant. Then two days later, they told me I had HIV,” Zarate told Healthline. “I thought I was going to die. I wanted to give up.”
But instead, she summoned the strength to leave her husband, have her baby, who was born HIV negative, and to educate herself about the disease that can lead to AIDS.
Zarate has been drug-free for a decade and now works as a peer navigator for other HIV positive women at Christie’s Place, a nonprofit social service organization in San Diego. The program provides education, support, and advocacy for women living with HIV.
Zarate speaks at conferences throughout the Southwest and across the border to educate and empower women to keep fighting and not give up hope.
She said women with HIV typically suffer in silence.
“They’re often disconnected from the people and programs that can help them,” Zarate, whose HIV is now virtually undetectable, said. “Many women in this country who are HIV positive are minority, poor, and uneducated. Some of them are drug users, and they’re often in abusive relationships and don’t know how to get out.”
The Barriers Facing HIV Women
Roughly 45 percent of women living with HIV are engaged in any type of care, according to the CDC.
Jamila Stockman, PhD, MPH, is an infectious disease epidemiologist at the University of California, San Diego. Her research focuses on HIV prevention with an emphasis on the role of intimate partner violence and substance abuse among low-income, underserved, and vulnerable women.
Stockman told Healthline that despite efforts by public health experts, many social barriers remain for women with HIV who need treatment and counseling.
“The barriers include violent intimate partner relationships, mental illness, and substance abuse,” Stockman said. “There are also structural barriers such as no transportation and no resources to support their ability to have someone care for their kids while they seek treatment and counseling.”
Stockman added that there’s still a powerfully negative stigma attached to an HIV diagnosis.
“There’s also the medical mistrust that occurs in ethnic minority women populations,” she said. “These are all reasons why many women with HIV don’t get the care they need.”
The group of American women living with HIV who clearly have the most challenges are Southern black women, who’ve been called “the forgotten demographic.”
Researchers in a 2012 University of Alabama at Birmingham study conducted in-depth interviews with 46 low-income women in the Deep South who were HIV positive. Almost 90 percent of the women were black.
Researchers concluded that poverty, poor employment opportunities, limited access to healthcare resources, stigma, transportation challenges, and access to illegal drugs all had an impact on their ability to engage in HIV care.
The study concluded that any intervention designed to improve this population’s ability and willingness to seek HIV care must address all of these issues to be effective.
Preaching the Gospel of Prevention
Zarate and other advocates for women living with HIV preach the gospel of prevention.
But are people listening?
Experts have concluded that women who are HIV positive are not much different in terms of behavior than women who are HIV negative.
In a seven-year study titled “HIV and Ethnic Minority Women, Families, and Communities,” researchers said there were no glaring differences in behavior between the two groups.
Gail Wyatt, a clinical psychologist and director of UCLA’s Center for Culture, Trauma, and Mental Health Disparities, who led the study, recently told U.S. News, “[i]t was the most depressing study because it was only by the grace of God that women were negative. They were doing the same risky things that the positive women were doing.”
Some public health advocates see the preventative value in the antiretroviral drug Truvada. It can be used for what is called “PrEP,” short for “pre-exposure prophylaxis,” the practice of using drugs to prevent HIV infection.
Last year the PBS NewsHour reported that the drug is rarely used and both the cost and availability are issues.
“When taking PreP, the risk for HIV is cut up to 90 percent,” Stockman explained. “We always recommend you still use condoms. We don’t want you to rely on PrEP, but it can be effective.”
The Global Picture for Women and HIV
Globally, it’s the same story. But conditions in many countries are even worse than in the U.S., as are some of the societal stigmas regarding HIV and AIDS.
Since the beginning of the global crisis, in many parts of the world women have faced a much higher risk of infection than men because of gender inequality and gender-based violence, according to a UNAIDS report.
Studies show that HIV remains the leading cause of death among women of reproductive age, yet access to HIV testing and treatment remains low, according to a number of global studies compiled by AVERT, a charitable organization that has been sharing information about HIV/AIDS since 1986:
In 2012, a UNAIDS study found that 37 percent of women living with HIV worldwide were thought to have been physically assaulted.
In addition, a study from South Africa posted in The Lancet found that young women who experienced domestic violence were 50 percent more likely to acquire HIV than those who did not.
According to the International Planned Parenthood Federation, in Kenya, Rwanda, and Senegal, more than 70 percent of unmarried sexually active girls aged 15 to 19 do not get their contraception needs met due to age restrictions.
Positive Trends in the United States
Meanwhile, in the U.S., Stockman noted one positive trend that has developed for women in the HIV community in the past few years; the emergence of peer navigators like Zarate.
“Women who are HIV positive and have experienced the same barriers —drugs, violence, sex work, mental illness, social isolation — and have overcome their barriers can really help others,” Stockman said. “This is especially valuable for those who have fallen out of care.”
Peer navigators re-engage these women who are disconnected, Stockman added.
“It’s a new buddy system. We’re working on new projects that actually test the efficacy of this intervention,” she said “There are not a lot of them, these people of course have to be trained, but we are working with Christie’s Place [in San Diego].
More of this kind of integration needs to take place across the country.”
The most positive news might be that treatments for HIV have dramatically improved survival rates for women and men since they were introduced in the 1990s.
Many people are now living with the virus just as others live with diabetes and other diseases. But as Zarate, Stockman and others interviewed for this story point out, the treatment can only work if the patient makes the decision to visit a doctor or clinic and seek care.