30 September 2015, Nairobi – Teenagers living with HIV need more care and expert attention to lead happy and fulfilled lives and to avoid being defined or defeated by the virus. This priority emerged during a meeting held by AJAN in late July for Jesuits and co-workers involved in AIDS ministry in sub-Saharan Africa.

As they described their work during the meeting, some project directors expressed the need to do more to help adolescents to navigate the challenges they face to live with HIV. “Adolescents on ART – this is an area of need for us,” admitted Fr Kelly Michelo SJ, head of the home-based care program of Chikuni Parish in southern Zambia.

“We need to reach out to adolescents – they are being left behind,” said Sr Mary Owens, executive director of the Children of God Relief Institute (COGRI) in Kenya, which runs Nyumbani Home, Nyumbani Village and the Lea Toto program for thousands of children and adolescents living with HIV. In May, COGRI started to pilot a comprehensive community-based program for teenagers living with HIV in poor suburbs of Nairobi.

The participants are far from alone in defining this as an area of unmet need. The World Health Organisation (WHO) says that more than two million adolescents aged between 10 and 19 years are living with HIV worldwide (2012 data). The majority were infected before or during birth or the first months of life because their mothers did not receive the treatment that would have spared them. The remaining 20% were infected as adolescents and most are girls, who are much more vulnerable to HIV.

Anthony Lake and Michel Sidibé, respectively directors of the UN agencies for children and AIDS, underscored the risks facing this vulnerable group in an article published earlier this year.

They wrote: “It is shocking that more adolescents die every year from AIDS-related illnesses than from any other cause except road accidents. In 2013 alone, 120,000 adolescents died from AIDS-related causes.”

The simple reality is that most teenagers living with HIV do not have access to the services they need to be in good health, to prevent transmission and to live positively. 

During the AJAN workshop, participants shared what they are doing, and can do more and better, to support this vulnerable age group. As a network, AJAN will take this area as a priority, and a group discussion to discuss good practices emphasised accompanying teenagers through support groups and a strong mentorship program; nutritional and educational support; medical care and economic empowerment. 

Sr Mary outlined the needs of teenagers with HIV, drawing on the valuable experience and expertise of Nyumbani. The journey of Nyumbani, since it was set up in the nineties to take in abandoned HIV-positive babies to the present day, when “we are dealing with adolescents, and young adults”, mirrors the wider reality of a generation of children in sub-Saharan Africa who must learn they have the virus and how to live with it.

Coming to terms with the fact that they have HIV is one area where the teenagers need a lot of help. Then they need to learn how to manage their condition and their medication – eventually taking full responsibility for this. Adherence to medication can be a challenge here, not least because many find it hard to accept their condition.

Then there is the whole area of how to deal with still pervasive stigma. “We tell them that HIV is a chronic condition like many others and we also work on building the self-esteem of each child,” said Sr Mary. “If someone asks them if they are HIV-positive, they should simply reply, ‘Yes, is it a problem for you?’”

Teenagers also need guidance to build and enjoy healthy relationships, to know when and how to disclose to others that they have HIV. However, the support they need goes beyond life-skills and extensive psychosocial support. As they go to school and progress to either higher education or to search for jobs and to build a life of their own, “the challenge of employment is huge”.