Since the beginning of the response to the HIV epidemic, communities have been at the forefront of the fight to end the disease. Community health workers, key populations, people living with or affected by HIV, peer educators, civil society organizations and grassroots activists have mobilized to step up the fight while ensuring no one is left behind.
This year’s World AIDS Day theme honors these incredible advocates and leaders: “Communities make the difference.” Around the world, community-led organizations and activists are breaking down stigma and discrimination, connecting vulnerable populations to lifesaving health services and bringing all of us closer to our shared goal of a world without HIV. Their stories inspire each of us to make a difference in our own way, in our own communities.
Loyce Maturu was born with HIV and lost both her parents and brother to the disease before the age of 10. Loyce struggled to accept her HIV status, faced verbal and emotional abuse from relatives, missed school due to ill health, and nearly committed suicide. With the support of community health clinics and local nongovernmental organizations, Loyce began receiving antiretroviral treatment and psychological counseling. “That’s when I told myself, I would not remain silent,” Loyce said. “I want to share my story so that people can have an understanding of how it is like living with HIV.” Since 2009, Loyce has been a peer counselor and advocacy officer for people living with HIV, helping deliver anti-discrimination campaigns in schools and communities throughout Zimbabwe.
Sepi Maulana Ardiansyah, known to his friends and followers as Davi, was sexually abused as a teenager, trafficked into sex work, and infected with HIV. This harrowing experience altered the trajectory of his life. But once diagnosed, Davi took control. He started on treatment, left sex work and became an advocate for the rights of young people like himself. Now Davi uses his large social media following to push back against stigma and discrimination. He reaches young people in Indonesia with information about HIV, the importance of knowing your status and adhering to treatment. “I wanted to contribute because I saw my friends die from the blatant stigma and discrimination, which seemed to make them reluctant to undergo treatment.”
In Ulaanbaatar, Mongolia, Delgerzaya M. (left) and Usukhbayar D. (right) help connect sex workers with the Perfect Ladies, a nongovernmental organization offering HIV prevention training, outreach, testing, stress management resources and counseling for sex workers. As a former sex worker, Delgerzaya said: “We are the same women. I understand their challenges better than others.” Community organizations like Perfect Ladies help sex workers access the tools and skills to protect their health.
Every day, Sandrine Kouadio visits about 40 sites in her community, known as “smoking rooms”, to keep an eye on the health of women she considers her “sisters”. Sandrine is a former drug user, and now provides counseling services, information on HIV, TB prevention and sexual and reproductive health to other women who use drugs in Abidjan, Côte d'Ivoire. Women are at a higher risk of violence and face greater stigmatization than men for using drugs. “When you are a female drug user, you are denigrated and rejected because the use of drugs is tainted with prostitution and loss of virtue,” said Sandrine. “Every woman has the right to health. This is my battle. Being able to support them feels like being born again.”
Altaf Sheikh (right) is a transgender community activist living with HIV in Mumbai, India. India’s transgender community, or Hijras, are a marginalized group with very high HIV infection rates, more than 15 times higher than the general adult population in India. As a former sex worker, Altaf remembers suffering discrimination and stigma. “I was alone when I found out I had HIV. Nobody was there with me.” Today Altaf is a peer educator and outreach worker for the Vihaan Care and Support Program, a community-led initiative that works with India’s national HIV program. Altab visits homes and accompanies hijras to take HIV tests. “They are not alone anymore.”
Martha Clara Nakato was 14 years old when she learned she had been born with HIV. At first gripped by fear, she fought to overcome the misconceptions in her community. “Having people call you all these ugly words, having people judge you, having people blame you for living with HIV has been the hardest thing in my life,” she said. Today, Martha is a community advocate and volunteer with the Uganda Network of People Living with HIV. Her mission is to remove the shame surrounding HIV. “I believe that we cannot fight HIV, we cannot end it, if we do not address the shaming of people living with HIV.”
Connie Mudenda lost three children to HIV. “AIDS took all three of my children. I lost all three of my children because I was unlucky.” After learning her status, Connie considered herself lucky to be able to access lifesaving treatment and find counseling and support. With the help of community health organizations, Connie gave birth to an HIV-free daughter in 2012. Today she is a proud mother, a fierce advocate in the fight against the disease, and an ambassador for (RED), an organization that partners with the world’s biggest brands to raise money and awareness to end AIDS. At the Global Fund’s Sixth Replenishment Conference in Lyon, France, in October 2019, Connie called French President Emmanuel Macron, heads of state and global health leaders to action. “We need to take luck out of the equation and put justice in its place,” she said.