For many women living with HIV, daily life is full of obstacles that make their access to treatment more difficult.
Shyronn Jones, 41, says that she lives with an overwhelming cloud of stress every day. She says a lot of it stems from insecurity over maintaining stable and affordable housing, being able to find affirming work that can help her pay her bills, and having the means to provide for her children.
“There’s just these daily stresses based on my income. And when I think about the physical stresses, it’s just so evident: My memory, my speech, even me relaying words, is just deteriorating,” Jones, who lives in Atlanta, told Healthline.
“My memory, it’s just so cloudy. My mind is so full of worry and stress and anxiety. I can’t even remember if I took my medicine or not,” Jones said.
For Jones, this persistent sense of anxiety can make her own health take a back seat. She received an HIV diagnosis when she was 22. Since then, her life has become a juggling act between managing her health, being a mother to three (she’s raising a 7-year-old daughter and 16-year-old son at home and also has an adult 21-year-old son), and serving as an advocate for women who are living with HIV through Positive Women’s Network – USA, a national group of women living with HIV and their allies.
Over the years, Jones has become a vocal presence in the Atlanta area, speaking out about many topics close to her heart and experiences related to HIV, from racial disparities in housing and healthcare to sex education.
While this has been an enriching experience for her, there hasn’t been much time for herself.
“It’s been on my mind to get a full-body massage. My whole body is in pain all the time, it’s really extreme. I found a place that is $40, and it’s so hard for me to spend $40. I would like to go on a vacation; [I] would like to go on a cruise. I think about trying out, like, yoga and taking a swimming class, because I would like me and my children to learn how to swim,” she said.
“Those are just some things I have on my mind that I want to do. I would like to ride a horse with [my kids]. There are a lot of things I want to do.”
This struggle with finding the time to take care of herself and her health is one that Jones shares with other women who are living with HIV.
Last month, a study in JAMA Network Open revealed that, in general, women with an HIV diagnosis find the practical realities of day-to-day survival take precedence over maintaining and managing viral suppression of their HIV.
The researchers looked at data of 1,989 women enrolled in the Women’s Interagency HIV Study (WIHS). They were observed from 1994 to 2017 at sites in Washington, D.C., Chicago, Brooklyn, the Bronx in New York City, and San Francisco.
The study identified three trajectories of viremia, or the presence of HIV in the blood, in these women. About 28.6 percent had the probability of maintaining low levels of viremia, 39.4 percent for intermediate levels, and 32 percent for high levels.
Rather than pinpointing biological reasons for difficulty in maintaining viral suppression, the research highlighted socioeconomic and psychological factors that offer a barrier for some women who have HIV to staying healthy.
They found that women at younger ages, those who are African-American or of Hispanic ethnicity, those who experience symptoms of depression, those who use drugs, and those who experience unstable housing conditions had a higher probability of viremia.
“In the recent years since the expansion of treatment guidelines advocating for all individuals with HIV to receive treatment, our data suggests that a significant proportion of women with HIV are doing very well with maintaining viral suppression, often in the face of other challenges,” lead study author Dr. Seble G. Kassaye, associate professor of medicine at Georgetown University Medical Center, told Healthline.
“Our approach allowed us to distinguish those who are doing well from a smaller but important subset of women who are not benefiting from the gains in scientific knowledge that we have amassed over the years since the start of the epidemic,” she said.
“It is important to recognize this subset of women, and to identify methods to support these women to improve their health outcomes,” Kassaye added.
Kassaye says many of these “structural elements” that increase a probability of high viral levels in a woman’s blood require intervention beyond medicine.
It’s all about access.
From mental health and housing services to drug treatment programs, she explains that there are many things that can be done to complement medical care to ensure particularly vulnerable women living with HIV can maintain viral suppression.
Kassaye says the homeless population is particularly in a precarious place.
“Homeless women do not have the resources and a safe environment to successfully manage their HIV infection and maintain viral suppression,” she added.
Many women experiencing homelessness face violence that can also stem from their HIV status.
“Women need safe environments that allow them to focus on their health. There has been a decline in new HIV infections related to injection drug use, but breaking the cycles of drug dependency requires grassroots efforts to change the environment of entire neighborhoods,” Kassaye said.
“This is not easy to achieve,” she added, “but will require concerted effort and engagement of communities and stakeholders to improve outcomes.”
It’s a dynamic that Dr. Alan Taege, infectious disease specialist at the Cleveland Clinic, recognizes from his own practice.
He told Healthline that life can be “chaotic” for a lot of women who receive an HIV diagnosis. For many, the cost of child care alone is prohibitive, for instance.
He’s seen some women have to come to their medical appointments with their children. Sometimes they’ll have to skip or cancel appointments to manage problems that come up at home or work.
Is enough being done to address some of these barriers to proper care that these women face? Taege says the answer is a definite no.
“It’s always been an epidemic in the MSM (men who have sex with men) population, but you still don’t see a lot of specific prevention efforts directed toward women,” Taege said.
“A lot of awareness campaigns and assistance programs go for the MSM population first, which leaves out a number of other people who need help. There is also still shame and the desire to hide HIV in their community that women face. This has significantly improved over the years, but still is quite bad. It isn’t as accepted as it should be among women,” Taege said.
Many of the low-income women who need help the most in treating HIV don’t have access to health insurance. This makes the sky-high prices pegged to HIV medications virtually unreachable.
Taege explains that some states have seen Medicaid expansion efforts to rectify this problem.
The national Ryan White HIV/AIDS Program does offer assistance, but even these things are difficult to access. For one, if a woman doesn’t have access to transportation to and from a clinic or hospital, it can be challenging to receive life-saving care.
At the end of the day, a big barrier can be women coming to terms with the reality of their diagnosis due to its stigmatization by society at large.
“Sometimes, when they do get HIV-positive test results, it still is a difficult thing for women to come to terms with. They still feel the shame of a diagnosis. Many don’t know how they got it. Many find difficulty asking for support,” Taege added.
Maria Mejia, 46, learned of her HIV diagnosis when she had routine testing done for Job Corps in Kentucky.
It was just one week after she turned 18. She was shocked. She had been intimate with only one person — her high school boyfriend — and the idea of HIV seemed remote to her.
She had heard public stories, like those of Ryan White, Kimberly Bergalis, and reports of the millions of members of the LGBTQ community who died over the course of the HIV and AIDS epidemic, but she knew very little about the condition and didn’t associate it as a possibility for her.
“I saw images of gay men dying in San Francisco, but that was pretty much all I knew about it. I knew it existed, but I didn’t think it would affect me. Back then we had no social media, no information. It was a death sentence, and as a young woman without any information, I took it very, very hard,” Mejia told Healthline.
She confided in her mother, who supported her but cautioned she not reveal her status to family. Mejia says she then carried the “heavy burden” of telling family members that she had a rare form of leukemia.
She kept her health status a secret for a decade.
When she first sought treatment, her doctor prescribed antiretroviral azidothymidine (AZT), but when she had to sign a waiver that stated she understood the drug could damage her organs, she turned it down.
Mejia moved back with her family in Colombia. By the year 2000, things changed.
She says her doctor gave her a stark choice: “‘Do you want to live or die?’ I said, ‘I want to live. I want to live. Of course I want to live.’ That was traumatic to me.”
Since that year, she’s been a public advocate. Her activism started when she volunteered in a hospital, helping test others for HIV. Today she’s built an internationally recognized activist platform.
Her online Facebook support group, available in Spanish and English, has a broad reach, with tens of thousands of members.
Mejia, who now lives in Miami with her wife, Lisa, says her online forum attracts everyone, from doctors sharing useful health information to people just looking for a space where they can check in with others. She adds that real-world friendships and relationships have blossomed from her group.
Mejia says a big part of her public advocacy — from television appearances to speaking engagements — comes from a desire to help others and enable people, especially women living with HIV, feel seen.
“This is my advice to people, especially women who might find they are living with HIV — I have so many friends who feel very isolated at times. My recommendation is to find a support system. It’s the most important thing,” Mejia said, citing The Well Project as a particularly useful resource for women looking for information on living with HIV.
“It’s not going to take HIV away, but it empowers you. If we empower ourselves and we empower others, then they empower others. It starts a little chain,” she said.
Kassaye says that she and her team will look into the effects that “comorbidities and accelerated aging” have on people living with HIV. She says that HIV-related health challenges for women vary depending on their age, and more needs to be done to improve care.
“Women are often an afterthought when one considers the problem of HIV in the U.S. There are clearly social, cultural, and biologic elements that influence a woman’s experience with HIV,” she added.
Jones says that she’s often had the jarring experience of hearing people’s unfounded fears about HIV head-on. One time in her apartment complex she overheard a conversation about a man who allegedly had HIV.
“They said he was living with HIV and said he would come visit some girls and make the girls have sex. I didn’t tell them I was living with HIV. I said, ‘I’m an HIV educator,’” she recalled. “I suggested that we host an educational event in the community complex.”
That kind of purposeful, community-driven activism is something that Jones says drives her. Like Mejia, she made the sometimes difficult decision to be very public about her life to educate others.
She published a book about her life, “A Piece of Me with HIV,” that’s currently available through Amazon. She’s also been trying to find organizations to partner with.
This isn’t always easy. Many of the people who respond to her ask for free copies of her book or offer purely volunteer education opportunities — things that aren’t easily economically feasible for her, she says.
If a newly diagnosed woman asked her for advice, what would she say?
“I would also advise her to research education about the virus itself, because for me, I had to separate the two. I had to separate ‘me’ from the virus,” Jones said.
“I didn’t look at myself as the virus. I got to know the virus in its own self. I was able to identify myself as a woman first, and I think that’s important for women living with HIV to do — continue to identify yourself as a woman living with HIV, not ‘infected with HIV.’ Just don’t let the virus over-identify you,” Jones said.