The voices of young people living with HIV must be heard

I was born with HIV in Rwanda in the early 80s, when getting a positive HIV test was seen as a death sentence.

The right to sexual and reproductive health is a fundamental human right. It is also vital in breaking the cycle of having another generation of children born with HIV.

As the UN signs up to the new sustainable development goals, governments need to make sure that young people living with HIV, especially young women, are involved in decision making on matters that affect their sexual health.

I was born with HIV in Rwanda in the early 80s, when getting a positive HIV test was seen as a death sentence. HIV and AIDS placed the medical world into an emergency situation where they were making very short term plans for people infected with HIV as there was no cure or treatment. I am a witness to how we lived during these years, when we were not expecting to live.

With the discovery of life-saving antiretroviral drugs, people living with HIV are no longer dying but are living a long and healthy life. HIV is now seen as a chronic manageable condition. But although the medical world has made tremendous advances, some policymakers and people in the wider community lag behind.

Right to sexual health services

As human beings, it is our right to have access to the correct information and appropriate services to enable us to take care of our sexual and reproductive health. But according to a 2012 UNAIDS report, in 26 out of 31 countries with generalised epidemics, less than 50 per cent of young women had correct and comprehensive knowledge about HIV.

Link Up is one programme which is trying to address this by championing the sexual and reproductive health rights of more than a million young people in five countries: Bangladesh, Burundi, Ethiopia, Myanmar and Uganda. The three-year programme is working with young people most affected by HIV, to improve access to integrated HIV and sexual and reproductive health services.

In an online survey conducted by Link Up partners, 43 per cent of respondents said that the last time they accessed HIV treatment, the person helping them did not seem to care about their health. Forty-five per cent of young women gave a similar response when asked about abortion services.

There need to be more programmes like Link Up, dedicated to breaking barriers like this which discourage young people living with HIV from accessing the information and services they need.

Unwilling to discuss sex

My mum died of AIDS when I was five years old and, at that time, I was considered to be dying. However, this didn’t stop me from being curious about sex and the differences between boys and girls. I only had sisters and, being the first born, I was expected to know more than them. I first noticed sexual differences when we had some of my cousins visiting over, who were boys. We were bathed together and I noticed that we didn’t look alike. This prompted many questions but, every time I wanted answers, my dad seemed to be busy.

When I became a teenager and had my first menstruation, I screamed and ran to my dad. I thought I would die of bleeding. My dad was very uncomfortable was not culturally prepared to comfort me and my stepmother helped me out. This was the first time I had discussed menstruation with an adult.

I kept developing along with the HIV negative kids and had huge unanswered questions. But for me it was different. I was not allowed to ask. The community around me, including the medical world, led me to understand that people living with HIV should not have a sexual life and that I was being selfish. We were discouraged from having a sex life and from having children.

Desire for a healthy sex life

The voices of young people living with HIV are still not being heard when it comes to matters concerning their bodies and their health. But young people living with HIV are born with a desire to have a healthy sex life and a family, just like everyone else. And if they are unable to access the right information and services, the risk is that they will have unprotected sex, which means HIV keeps spreading and some young women will have unwanted pregnancies.

When this happens, they are forced to feel guilty and ashamed when it is the fault of the community for failing to provide the information and services they desperately needed. And if young women decide to keep silent about their pregnancy, they may fail to access services which can prevent their baby from getting HIV.

As a young lady in the age of procreation, I can access sexual and reproductive health services but I have received very limited information on prevention of mother to child transmission and antiretroviral treatment. This means that if I had a child, I may be forced to not breastfeed my baby, or to use formulas and take medication when I have no idea how it works.

As the UN sign up to the new sustainable development goals, they should also reconsider strategies to address the sexual and reproductive health and rights of young people living with HIV. This should include improving knowledge and literacy about preventing mother to child transmission, as part of an integrated package of services.