Opinion: Stop the exclusion — the double stigma facing HIV-affected women and girls

A girl speaks about HIV/AIDS at a health clinic in Nairobi, Kenya. Photo by: REUTERS / Katy Migiro

In sub-Saharan Africa, 42% of adolescent girls and young women living in urban areas and more than 50% of those living in rural areas had a pregnancy before the age of 18. Adolescent girls also comprise the majority of new HIV infections in this region. Four of every 5 new HIV infections among people ages 15-19 occur among girls.

Miriam, whose last name is being omitted to protect her privacy, was born HIV-positive in Uganda and is an example of those at the center of these overlapping experiences. When, at 15 years old, she became involved with an older man, she had no knowledge of sexual and reproductive health, let alone access to contraception. And when she found out she was pregnant, Miriam was rejected by her family and her community and forced to leave home.

Young women like Miriam and their children are among the most vulnerable — yet too often the most excluded — population affected by HIV, facing double stigma.

When Miriam went to the local clinic for antenatal visits, the staff criticized her. If she arrived at the clinic alone, she would sometimes be refused care and told that she needed to be accompanied by a parent or partner. Thankfully, Miriam's grandmother took her to a home for young mothers where she found a community of girls in similar circumstances.

Miriam is now 18. She campaigns in local schools for more acceptance of adolescent mothers and greater awareness of, and access to, contraception for her peers. With help from a local NGO, the Uganda Network of Young People Living With HIV & AIDS, founded in 2003 by young people, Miriam is receiving peer support to build her resilience and navigate the challenges she faces.

However, like many new mothers, she struggles with parenting her young child. And there are other burdens she must bear. For example, she no longer attends the same school because she is afraid of disclosing that she has a child. Often, despite laws guaranteeing access to education for all children, schools prevent young mothers from attending or ban them from taking exams. Even in her new school environment, Miriam must keep her HIV status a secret for fear of discrimination.

In addition to being at the epicenter of the HIV and AIDS epidemic in sub-Saharan Africa, young women like Miriam are subject to a multitude of broader disadvantages: gender inequality, poverty, violence, exclusion, and poor education. Their children are at greater risk of early childhood developmental delays. Yet their health and well-being, as well as those of their children, have been largely overlooked. This perpetuates a cycle of poverty and vulnerability, which is passed down across generations.

Understanding the unique challenges in reaching this particularly vulnerable population — as well as the urgency required to do so — is essential. And there are several ways to help do this.

Listen and learn

In order to amplify the voices of community champions in global HIV and AIDS advocacy, The Coalition for Children Affected by AIDS has undertaken its ambassador program since 2017 to promote sharing lived experience. The program continues to seek new voices, like Miriam’s, to join this powerful collective.

Gather necessary evidence

Despite the critical nature of tackling HIV and AIDS, the evidence base is sorely lacking. Earlier this year, the coalition embarked upon an effort to collect evidence regarding the scale of exclusion facing HIV-affected young mothers and their children; the impact this has on achieving HIV targets and others, such as the Sustainable Development Goals; and programs that have been proven effective. The initial findings of this effort outline what must be done to both identify and scale up solutions that work, including:

• Prioritizing adolescent mothers and their young children living in areas of high burden in development funding, policies, and guidelines. This means focusing not just on HIV-positive mothers and children, but reaching those who are HIV-negative before they become infected.

• Providing integrated support tailored to each adolescent mother and child. Such support must combine HIV interventions with broader social and economic support, particularly around poverty, mental health, early childhood development, sexual and reproductive health, and maternal and child health.

• Continuing to address gaps in the evidence base. HIV- affected adolescent mothers are invisible in the large-scale quantitative data that would be necessary to highlight the scope of the issue. They are unable to be identified as a specific group, with specific needs, in the majority of international agency reports. We are, therefore, missing critical data that would allow us to better understand their experience.

• Supporting adolescent mothers to participate in decisions that affect them — they are experts in their own inclusion.

On Dec. 13, the World Health Organization, in partnership with The Coalition for Children Affected by AIDS, is convening scientific, policy, and programmatic experts at a learning session. Participants will look at the outcomes among HIV-affected adolescent mothers and their children across a range of health, HIV, and broader development indicators. They will seek to better understand why this group is not benefiting from interventions serving general populations and what can be done to improve their outcomes. All of this is intended to drive an agreed-upon, evidence-informed advocacy agenda.

Take action

The coalition has outlined five calls to action necessary to reach adolescent HIV-positive mothers:

1. Decentralize resources and decision-making powers to communities, children, adolescents, and families.

2. Repeal laws and policies that exclude HIV-affected adolescent mothers and their children and make them more vulnerable.

3. Champion integrated, evidence-based national strategies for HIV-affected adolescent mothers and their children, as well as campaigns to build public support for their inclusion.

4. Support the participation of HIV-affected adolescent mothers in decision-making, accountability, and service delivery and support them as a movement.

5. Generate evidence on what integrated approaches work best for HIV-affected adolescent mothers and their children.

These are just the first steps in what must be a much broader response to a complex challenge.

We can and must take these steps. Anywhere silence and stigma are currently, we must go to replace them with action. It is time to stop the exclusion of a population being left behind in the global AIDS response.

About the author

  • Bohm

    Lisa Bohmer

    Lisa Bohmer is chair of The Coalition for Children Affected by AIDS and senior program officer for the Conrad N. Hilton Foundation. She is a public health professional with over 30 years of experience with programs, research, and grantmaking in the areas of pediatric HIV/AIDS, OVC, maternal and child health, reproductive rights, and the empowerment of women and girls.