Why we can’t stop fighting for women living with HIV
As a woman living with HIV, Cathy Elliott says we need to speak openly about sexual health
May 6, 2021
In 2018, about one in five people living with HIV in the U.S. was a woman.* For Cathy Elliott, a woman living with HIV who has worked in HIV advocacy and care for 26 years, it’s crucial that people understand the unique challenges women living with HIV face.
Reflecting on progress
When Cathy was first diagnosed with HIV in 1995, she quickly noticed that women were frequently left out of the HIV conversation.
“I remember hearing about the early studies for HIV medications, but they were mostly done for men,” says Cathy.
In addition to initial misconceptions that HIV could only impact men who were having sex with men, regulatory guidance excluded women with childbearing potential from the early phases of clinical trials from 1977-1993.
While HIV research has become more inclusive, there’s still room for progress. A 2020 study published by the Journal of Virus Eradication found that only 25% of participants in phase 3 trials of new antiretroviral medications were women.
“It took years of people speaking up and advocating to improve representation, but we still need to continue to push for more inclusion of women and minorities in HIV research.”
Cathy knows the importance of advocating for the needs of everyone impacted by HIV, including women. As a former Merck HIV community liaison, she was trained and certified to discuss Merck’s promoted virology products and worked with case managers and other allied health professionals to improve health care outcomes for the HIV community.
Living with HIV today
Since the early days of the epidemic in the 1980s and ’90s, significant progress has been made in reducing stigma associated with HIV. Nonetheless, Cathy, like many women, still faces misconceptions due to her HIV status.
“There’s a perception that in order for a woman to have HIV, she must have done something wrong,” says Cathy.
She’s found people often try to place blame, which can create feelings of shame. For Cathy, open conversations about sexual health are important to fighting this stigma.
“If we can’t talk openly about sex, we’re going to continue to see new transmissions of HIV,” says Cathy. “We need to talk to young women about healthy sexual practices to increase awareness and understanding of HIV as well as options for prevention.”
And it isn’t just younger women who are affected by HIV transmissions. There was a 5% increase in new diagnoses among women aged 55 or older between 2014 and 2018 in the U.S.
For women who are newly diagnosed, Cathy recommends joining a support group to learn from others who are facing similar experiences, because that’s where she found and continues to derive her strength.
“Women take on so many roles, and being diagnosed with HIV does not eliminate those responsibilities,” says Cathy. “We need more groups that advocate for HIV support that is inclusive of women’s needs.” One example is the Positive Women’s Network – USA, an organization that helps support women living with HIV and shape policy; Cathy is a legacy member.
Newly retired, Cathy is excited to start a new chapter in her life. She plans to open a small business — something she never thought possible when she was diagnosed.
“After my diagnosis, I thought I was going to die within five years,” says Cathy. “That was more than 25 years ago, and I’m proud to say I’m not slowing down.”
Cathy wants other women living with HIV to know that they can live full lives and pursue their passions. It is important to know that people living with HIV on treatment who reach and maintain an undetectable viral load have effectively no risk of transmitting the virus sexually (Undetectable=Untransmittable or U=U).
“We’ve come a long way. Working together, we can continue to advocate and work with others to change the way women learn about and live with HIV,” says Cathy.
*Based on sex assigned at birth.