Today, women and girls represent more than half of all those living with HIV across the globe -- that's almost 18 million women and girls living with HIV. HIV is the number one global killer among women of reproductive age (15-44 years), and girls (15-19 years) account for over six in ten new HIV infections among adolescents. Among transgender women, the HIV epidemic is particularly severe. It is estimated that the global proportion of transgender women living with HIV is 49 times higher than in the general adult population, regardless of whether they live in low-, middle-, or high-resource countries.
In the US, women account for approximately one in four people living with HIV and one in five new HIV infections. Black and Hispanic women, though they represent less than 30 percent of the general population, bear an extraordinary proportion of the burden of HIV – more than eight out of 10 women living with HIV in the US are women of color. Although surveillance data suggest some good news – from 2005 to 2014, the number of new HIV diagnoses among women dropped 40 percent – these figures are have been debated in light of evidence of a "hidden epidemic" among women. Moreover, it is clear that most American women living with HIV are not engaged in regular care and less than a third are virally suppressed.
Gender-based social and structural obstacles
Women living with HIV face numerous structural and societal barriers to accessing healthcare. For many women, an HIV diagnosis is a life-threatening challenge on a list of competing challenges — poor health literacy, physiologic vulnerability, gender-based violence and trauma, stigma and discrimination, lack of female-controlled prevention methods, limited participation in clinical trials, and other gender-based inequalities (including poverty, housing, serving as primary caregivers, laws that disproportionately affect women).
These inequalities not only increase women’s vulnerability to HIV, but also negatively impact the health of women living with HIV. Women tend to be diagnosed with HIV later in their disease than men and fewer women than men are getting HIV treatment.
Each of these barriers also plays a role in how alone or isolated women feel as well as how women experience stigma and discrimination. Social isolation is a huge contributor to depression among women living with HIV, and both are independent predictors of poorer health. Anticipated or experienced stigma can prevent a woman from disclosing her HIV status and accessing much-needed care and support services.
Information and health literacy
Researchers have shown that access to quality information about the management of HIV and AIDS in one's own social context is as important as access to medical treatment. Without accurate and relevant information about managing the complexities of HIV, every question leads to a dead end, every side effect diminishes adherence, every new twist in treatment builds a new layer of distrust and confusion.
For many women, health literacy level is a serious barrier to understanding medical information. In 2016 alone, The Well Project’s fact sheet "What are HIV and AIDS?" had more than 100,000 unique views, with an average viewing time of over five minutes.
Community and social support
Since the beginning, stigma has been one of the biggest barriers to ending the HIV epidemic, and millions of women living with HIV around the globe feel isolated and alone. Information and community support provide a foundation for surviving and thriving with HIV. And there is good news on that front. Over the last ten years, social media usage has skyrocketed from ten to 76 percent of all Internet users. Almost a quarter of all Internet users in the US report they looked online for health information in the past year. These facts and figures demonstrate that The Well Project, which has used technology as a platform to disseminate information and build community and advocacy since 2002, is more relevant and necessary than ever.
In order to ensure successful HIV interventions, programming, and research for women, we believe that women living with HIV must be represented and have a “seat at the table.” Advocacy training and capacity building are key elements that empower women living with HIV to contribute meaningfully to the decision-making processes of research and regulatory development.
The Well Project offers advocacy training and capacity building in an effort to develop a coalition of women living with HIV who will become involved to increase women’s access to better prevention options, care, and engagement in HIV treatment. Additionally, the Women's Research Initiative on HIV/AIDS (WRI) focuses specifically on elevating, enhancing, and expediting HIV treatment and prevention research on women and girls and identifying gaps in clinical care and research.
For all of these reasons and more, The Well Project is dedicated to the commitment we made more than 15 years ago to inform, support, and advocate for women and girls affected by HIV. We continue to change the course of the HIV/AIDS pandemic one women at a time. Join us!