Are adolescents an invisible generation in HIV response?

On 17 February, UNICEF and UNAIDS launched the All In to end adolescent AIDS campaign, but will it make a difference to the invisible generation of adolescents living with HIV?

In northern Malawi, Uchizi Kumwenda, 14, walks a round trip of 30 kilometres every month, crossing rivers without bridges in order to get her HIV antiretroviral treatment.

She makes this journey from Vongo village in Mzimba district to the neighbouring district of Rumphi, because it is the closest place she can access the free, life-saving medication.

In the Lakeshore-central region of Malawi 16-year-old Chikondi Matola faces another problem. He is one of a number of adolescents who are still getting an old phased-out drug, Stavudine (D4T), which has been scientifically proven to have higher toxicity levels and is responsible for serious side effects among users.

These include severe neuropathy, pancreatitis, lactic acidosis and lipodystrophy (a condition which can change a person’s body shape). This is especially difficult during the physical and emotional changes of adolescence – and can erode a young person’s self-esteem.

“Because of my body shape, I have been gossiped and harassed by my friends,” says Chikondi. “I remember one day we were about to eat nsima in a group and somebody took some relish and put it in my hands. When I asked him why, I was told that it is not right for them to dip their morsels in the same gravy dish with me.”

Very often, Chikondi suffers other side effects including rashes, dry skin, chapped lips, nail problems and also problems with the brain, such as changes in mood, thinking and remembering.

Better quality treatment

Although Malawi at national level has completely phased out highly toxic drugs, we must put monitoring mechanisms in place to ensure adolescents are receiving the best quality treatment.

“The needs of adolescents living with HIV have been ignored for too long,” says Suzette Moses-Burton, executive director of the Global Network of People Living with HIV (GNP+). “The problems we are facing today, which include the increasing number of HIV-related deaths among adolescents, are due to the failure of the HIV response to provide optimal treatment for children, as well as to understand their specific requirements on disclosure, adherence, and other support needs as they transition to adolescence and adulthood.”

The need to improve the success rates of HIV treatment for adolescents cannot be overemphasized. According to the World Health Organization (WHO), HIV is the second leading cause of death among adolescents aged 10-19 globally, and the number one cause in Africa.

Adolescents are increasingly dying at a time when HIV-related deaths are decreasing for all other groups. It will not be possible to achieve an AIDS-free generation when this sector of the population is so highly affected and neglected.

Health services failing adolescents

Existing programmes are not always well positioned to respond to the unique needs of adolescents. Healthcare providers do not feel comfortable addressing young people’s sexuality, reproductive health and social-behavioural challenges. Often there is not specialised care for adolescents.

The reasons for this include lack of infrastructure, not enough training for health professionals, and cultural restraints such as parents being uncomfortable speaking to young people about their HIV status and sexual health. Healthcare providers often see adolescents while their parents are present, making it difficult to have open, confidential conversations about sexual health.

The lack of effective and easy-to-administer paediatric formulations of antiretroviral drugs is another issue which affects children as they reach adolescence. If treatment regimens have been ineffective, or have been difficult for the child to follow, they may suffer long-term side effects and drug resistance. The high cost of second-and third-line regimens which young patients need if they have built up drug resistance, and a lack of monitoring and support services, create further problems for them in adhering to treatment.

Young people deserve better

All In! is a global initiative that has been set up to foster a broad movement that cuts across sectors to reduce the unnecessary deaths of adolescents living with HIV. Led by UNAIDS and UNICEF, and including networks of young people living with HIV, the initiative aims to reduce new infections among adolescents by at least 75 per cent by 2020. This means less than 70,000 new infections among adolescents, with 80 per cent of adolescents living with HIV receiving treatment.

These targets can only be met by focusing on a combination of prevention, quality testing, treatment and care, and social change.

Lumumba El-nasoor Musah, co-chair of the sexual reproductive health working group at the Global Network of Young People Living with HIV (Y+), says: “Young people and adolescents living with HIV are at the heart of our strategy. They are the very ones who know how services can be better shaped to suit their needs, and what is missing from current services.”

Higher-quality data and ongoing research on adolescent’s outcomes are urgently needed, disaggregated by gender, key population and age group, in order to facilitate the creation of global evidence for international guidelines. Research should also investigate causes and issues around treatment failures and loss-to-follow-up.

Currently, many young people living with HIV find themselves in a vacuum without specialised adolescent-friendly care addressing their unique needs. Adolescents like Uchizi and Chikondi need and deserve better than inaccessible health services, poorly trained health workers and out-dated drugs. Our responses to HIV must be driven by the need to protect and promote their fundamental human rights.

And as someone who has a child born with HIV, I strongly believe the All In! project must find solutions that will make adolescents a visible generation and key players in the global response.

This story was first published by Thomson Reuters Foundation

Find out more about the All In to end adolescent AIDS campaign