In a small town in Nigeria, there is an 18-year-old orphan — we’ll call her Oluleye, or Leye for short — supporting herself and her siblings through sex work. Many times, she does not have condoms. Leye discovers she’s pregnant, and she’s scared she may be HIV positive as well as one of her clients died of tuberculosis.
There is no clinic in or anywhere near Leye’s village, let alone one providing comprehensive medical treatment for HIV. Even if she were to learn that antiretroviral therapy could keep her healthy and protect her unborn child from contracting HIV, she would need to travel a long distance to receive it. As a sex worker, she worries that she would be turned away from a facility or even arrested once she got there. Then who would care for her family?
With these obstacles in mind, Leye believes she’s better off not knowing her status. She eventually gives birth to an HIV-positive daughter.
Leye may not be “real,” but her story is the reality for many children and adolescents throughout the world. Members of the Coalition for Children Affected by AIDS (the Coalition) hear such accounts every day. Fortunately, the global community has an opportunity to help children and adolescents living with and affected by HIV — like Leye, her siblings, and her infant daughter — if we act now.
With several key moments — such as the recent World Health Assembly meeting, the upcoming High-Level Political Forum on Sustainable Development in July, and the High-Level Meeting on universal health coverage in September — 2019 is a pivotal time in global health. At these gatherings, policymakers, funder and national governments will discuss how to make progress toward the United Nations’ Sustainable Development Goals (SDGs) and, in particular, achieve Universal Health Coverage (UHC), the global drive to offer quality and affordable health care to the world’s citizens. But there are significant barriers to achieving health outcomes for young people like Leye and her siblings, who have not received adequate attention in the growing momentum to mobilize resources. That must change if we want to reach the 2030 deadline.
While overall AIDS-related mortality is receding, many children and adolescents remain out of the reach of HIV prevention, testing, treatment, information and services, resulting in an increase in infections and deaths. AIDS is the top killer of adolescents (ages 10 to 19) in Africa and the second most common cause of death among adolescents globally. In 2016, 2.1 million adolescents were living with HIV and 260,000 became newly diagnosed. If the current rate continues, U.N. estimates suggest as many as 740,000 additional adolescents could become HIV positive between 2016 and 2030. UNICEF estimates that almost 80 adolescents will die daily by 2030 of AIDS-related illnesses if no additional investments are made.
Furthermore, the impacts of HIV and AIDS, particularly on a child or adolescent, go well beyond the physical. There is a wealth of evidence to show that children who do not have HIV and AIDS but who live in its shadow — perhaps with a parent or family member who has the virus, like Leye’s siblings — are still enormously affected. A successful approach to keeping children free of HIV must address the social and economic barriers to accessing prevention services.
Many national governments have made strides in increasing coverage of HIV prevention, testing and treatment services. However, weak health systems — and weak connectivity between government and community health systems — remain a challenge. It is these community health systems that often are best positioned to provide a holistic package of support, including social interventions. Increased focus and funding must be directed to community-based services if we are to meet the 2030 goals.
The issues facing Leye are not exclusive to sex workers living with HIV. Though there are pronounced needs for children and adolescents, those from marginalized populations — for example, LGBTQ people or those who inject drugs — are also at a higher risk. Access to services for these populations is limited and, even where available, often provided in a judgmental manner that alienates them.
Clearly, there is no one-size-fits-all solution.
The Coalition has put forth a series of evidence-based recommendations that seeks to address these complex challenges. As we move forward in this pivotal year, it is calling upon governments and donors to:
Broaden funding parameters to invest in multisectoral collaboration, such as joint planning, information sharing, case management, staff and systems, and referral mechanisms. This includes the replenishment of the Global Fund, which is at the forefront of delivering multisectoral, comprehensive approaches worldwide. This will ensure that young people like Leye have access to comprehensive HIV prevention, care and treatment.
Balance universal supports with targeted investments in children and adolescents living with and affected by HIV, including social protection, early childhood development and psychosocial support. This will mean long-term investment in the health and well-being of people like Leye and their children, so they may realize their full potential.
Decentralize systems by directing more resources and powers to communities and community-based organizations. By financing programs on the local level, organizations can respond directly to the specific needs of each community, while also reaching the most marginalized people in society. This means young people like Leye and their children can access preventive, curative and rehabilitative services — at the quality required to be effective — without being exposed to financial hardship. Working at the community-level also allows children and adolescents affected by HIV and AIDS, and their caregivers, to play an active role in decision-making, accountability and service-delivery mechanisms.
By championing these calls to action, and by speaking with a unified voice, we can help to transform the health of millions of children and families. Children and adolescents like Leye are relying on us. We must not let this opportunity pass us by.
Cecilia Kihara is technical lead for adolescents and young people at Frontline AIDS and is a member of the Coalition for Children Affected by AIDS. She is a technical expert in programming for and with young people. She has worked in over 25 countries in Africa, delivering gender transformative sexual and reproductive health and rights and HIV programs primarily targeting vulnerable populations, particularly adolescents girls and young women.