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The Importance of Their Stories: Women and HIV

James Legerme

January 25, 2018 | 4 Minute Read

Health | HIV and AIDS | Women’s Empowerment

Women worldwide are disproportionately affected by HIV/AIDS, yet stigma and fear often prevent their stories from being told. James Legerme shares the stories of two women who bravely and courageously shared their experiences living with HIV.

Since the start of the global AIDS epidemic, women have been disproportionately affected by HIV. Today, women constitute for more than half of all people living with HIV. For women aged 15 to 44, HIV is the leading cause of death worldwide, with unsafe sex being the main risk factor in developing countries. Additionally, a lack of access to information and health services, economic vulnerability, and unequal power in sexual relations expose women — particularly young women — to HIV infection. These were just some of the key takeaways that I took from attending the International Conference on AIDS and STIs in Africa (ICASA). I also had the pleasure of meeting two women at ICASA, who were both infected with HIV by their husbands: Pauline Mounton from Cameroon and Jeanne Gapiya from Burundi. Their stories of resilience, hope, and grit will hopefully bring more attention to the effects of HIV on women across the world.

On the continent of Africa, many thought that AIDS was only something that plagued western nations. Like many, Jeanne’s reality was shattered when she brought her sick infant son to the hospital and learned about his and her own diagnosis. Unfortunately, Jeanne lost both her husband and son in the years to come. These tragic and sudden life-changing events could have caused Jeanne to shut down and consider her diagnosis as a death sentence. “People did not expect me, a former woman’s basketball player for the national Burundian team, to be HIV positive. But once I opened up about my HIV status to friends and family, I gained the courage and strength to help those who have been affected by this disease.” In 1993, Jeanne founded The Burundian National Association of Support for People Living with HIV and AIDS (ANSS). ANSS’ mission is to promote the prevention of HIV transmission and to improve the well-being of people living with and affected by HIV. The ANSS was the first civil society organization in the country to provide HIV services to people living with HIV, including the distribution of antiretroviral therapy. From 2007 to 2013, the association provided HIV counselling and testing to more than 56,000 people as part of its HIV prevention efforts.

People did not expect me, a former woman’s basketball player for the national Burundian team, to be HIV positive. But once I opened up about my HIV status to friends and family, I gained the courage and strength to help those who have been affected by this disease.

Jeanne Gapiya, founder of the Burundian National Association of Support for People Living with HIV and AIDS (ANSS)

In the Republic of Cameroon, Pauline Mouton is the first person to ever disclose their HIV status on national TV. Like Jeanne, Pauline contracted HIV from her husband in 1993, and he died a year later. “No one ever knew that my husband died of AIDS, I even kept it a secret [from] the children for many years.” The shame that comes with having HIV causes many to never tell loved ones, or even worse, to not seek treatment. For years Pauline refrained from telling anyone about her diagnosis, but still she became heavily involved in HIV/AIDS prevention, education, and advocacy. In 1999, Pauline attended a conference in Uganda that focused on HIV/AIDS and women’s health. It was after this conference that she founded her own organization to offer health services to people living with HIV, The Women’s Association for Solidarity and Action (AFAFSO).

The year was 2001. First Lady of Cameroon Chantal Biya was preparing for the annual African First Ladies Summit. Madame Biya reached out to Pauline and wanted her to help find someone who was living with HIV that would be comfortable enough to give the keynote speech at the summit and talk about their experience living with this disease. Without thinking twice, Pauline told the first lady that she will give the keynote. The night before the nationally televised event, Pauline called her family members and close friends to tell them to watch the program without any explanation. Not only did Pauline inform her friends and family of her HIV status through her speech at this summit, but she also shared her story with all of Cameroon. “When I uttered the words, ‘I am a person living with HIV’, you [could] hear everyone gasp in the room. No one at that time would have expected someone like myself to be living with HIV. People were absolutely taken by surprise. I looked healthy and this shattered their perceptions of [what] a person living with HIV looks like, and this was the point that we were trying to get across.”

More than 56,000

people received HIV counseling and testing from ANSS from 2007-2013

About 7,500

young women across the world acquire HIV every week

20%

of new HIV infections among adults in 2015 were among women aged 15 to 24

Both Pauline and Jeanne’s stories shed light on a very troubling reality. Young women (10 to 24 years old), and adolescent girls (10 to 19 years old), account for an alarming and disproportionate number of new HIV infections. In fact, young women are twice as likely to acquire HIV as their male counterparts. In 2015, 20 percent of new HIV infections among adults were among women aged 15 to 24 despite this group only accounting for 11 percent of the global adult population. This equates to some 7,500 young women across the world acquiring HIV every week. As in many parts of Africa, women and girls in both Burundi and Cameroon face discrimination in terms of access to education, employment, and healthcare. As a result, men often dominate sexual relationships, and women are not always able to practice safer sex, even when they know the risks.

As international development professionals, we need to identify how we can better address the impact of HIV on women, particularly among young women and adolescent girls. Of course, there is not a one-size-fits-all method, but we can at least start by advocating for more integrated sexual reproductive health and HIV services with a woman-centered approach, reinforced by two guiding principles: human rights and gender equality. Integrated services must be provided in ways that respect women’s autonomy in decision-making about their health and provides information and options to enable women to make informed choices about aspects such as family planning, sexual rights, and HIV. We must acknowledge that women should be active participants in, as well as beneficiaries of, health systems served by programs that respond to women’s specific needs, rights, and preferences if we truly hope to become an AIDS free generation.