HIV/AIDS stigma threatens goal of AIDS-free generation

HIV/AIDS stigma threatens goal of AIDS-free generation

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A longer version of this article was originally published by PEPFAR here.  

Nineteen-year-old “Faith” isn’t wearing this scarf to make a fashion statement. Although she’s a typical teen girl who loves pretty clothes, painted nails, poetry, and spending time with her friends; she’s wearing a scarf in this photo because she’s afraid of the backlash she’ll receive if her schoolmates, teachers, and neighbors learn that she’s living with HIV.

Faith is an orphan whose parents both died from AIDS when she was a toddler. She has seen the isolation others in her community have faced when their HIV status became public and has decided not to tell those outside of her family that she was born with HIV because her mother did not have access to antiretroviral treatment when she was pregnant.

Faith didn’t always know her own status. At 11 years old, she began receiving services at Lea Toto in Kibera, an informal settlement community in Nairobi, Kenya. Swahili for “to raise a child”, Lea Toto is part of Nyumbani, a faith based organization and one of the world’s largest providers of HIV primary care services for children. With funding from donors including the U.S. Agency for International Development through the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR), Lea Toto provides Faith and other children with life-saving antiretroviral medication, counseling, and the kinship of other children who were also born with HIV.

When children are around eight years old, Lea Toto counselors inform them of their HIV status in a loving and supportive environment and educate them about what that means, the importance of medication adherence, self-help skills, and prevention.

Having grown up in a community where she heard adults and children make derogatory comments about HIV-positive people and watched those living with HIV/AIDS experience shunning and isolation by friends, neighbors, and family, Faith had a hard time accepting her status saying, “I wanted to kill myself. I used to ask myself ‘Why me? Why am I taking these medications? Why do I have this HIV?”

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Through the psychosocial support she’s received from Lea Toto, Faith is now living positively. She is expressing her joys, pains, and challenges through poetry, which she proudly shares. But despite her new-found confidence and bubbly personality, she continues to hide her HIV status for fear that she will experience the stigma cast on so many others—a reality in Kenya and in communities throughout sub-Saharan Africa and the world.

Faith is among the first generation of children born with HIV to reach adulthood in Kenya. Caring for children is not new to Lea Toto, but preparing teens to become young adults has presented the program with a challenge they’re addressing head-on. With funding from the U.S. Centers for Disease Control and Prevention through PEPFAR, Lea Toto received support to develop a transitional program for adolescents.

Ambassador Birx walks through Kibera with Sister Mary Owens and Congresswoman Debbie Wasserman Schultz. Photo credit: PEPFAR

Ambassador Birx walks through Kibera with Sister Mary Owens and Congresswoman Debbie Wasserman Schultz. Photo credit: Veronica Davison

The program will prepare adolescents to transition from Lea Toto’s pediatric HIV care services to adult care clinics run by other faith-based organizations or government-run facilities. Participants will receive psychosocial support, sex education, career counseling, economic empowerment, and other life skills training. This transitional support will be critical to the success of these young people as they move into adulthood and face new challenges of living with HIV/AIDS.

Stigma and discrimination threaten the health of people living with HIV/AIDS, which impacts medication adherence, performance at school and work, and overall quality of life. Discrimination hurts more than just those living with HIV/AIDs; communities and health care facilities that isolate or denigrate people living with HIV/AIDS are put at risk when people are forced to live in the shadows. When people living with HIV/AIDS aren’t on medication and don’t disclose their status, it increases the risk of passing on the virus—the same is true for pregnant women who, without medication, are highly likely to transmit HIV to their unborn children.

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According to, Ambassador Deborah L. Birx, M.D., U.S. Global AIDS Coordinator and U.S. Representative for Global Health Diplomacy, ending stigma and discrimination is key to achieving an AIDS-free generation. “We won’t see an end to the epidemic as long as people living with HIV/AIDS feel unsafe and are forced to the fringes of their communities. Stigma and discrimination both at the community and health care provider levels put people at risk—we all have a role to play in ensuring that our communities and health care facilities are welcoming, safe, and provide equal access to services for all who need them.”

Faith will graduate from secondary school this year and plans to become a television reporter. While still living with the realities of stigma and discrimination in her community, she is full of hope for her future, “I see myself being that ambassador helping kids in Kenya born with HIV to accept themselves. Giving back to society is all I want to do.”

You can learn more about PEPFAR’s collaboration with Nyumbani and other faith-based organizations and their contribution to the HIV/AIDS response here.

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