My name is Faudhia Kitenge, a youth advocate, living with albinism, from Tanzania. Following the 2017 ICASA Conference and the recent 2018 PATA Youth Forum, I have been left with much uncertainty in the HIV response. I went in to these conferences with many questions and their answers have only been discouraging to me. I realized that there is a need to reemphasize that “leave no one behind” in the global agenda for ending AIDS was not meant figuratively but rather as a clear statement.
HIV is a virus which affects people all over the world regardless of diversities of any kind. Yet often only age and gender are considered in the design of programs and models that respond to the HIV/AIDS crisis, but in reality there is a need to go way beyond that.
New infections in Africa and specifically in Tanzania are mostly affecting the young people. Many recent efforts to prevent new infections or care for people living with HIV have taken this into account, minimizing the risks of increasing new infections. But there are vulnerable groups and key populations who have been and continue to be left behind in reaching the 90-90-90 target.
My example will be focused on the group of young people with disabilities, since am one of them. Having disability does not exclude me from having other social and medical challenges. In the two major forums that I attended, there was a lot of talk about youth friendly services from health facilities to the community. But whenever asked about the same thing for people with disabilities, there came a moment of silence.
Fellow young people with disabilities often don’t test for HIV/AIDS because they fear being judged based on their physical appearance. Those with visual and hearing impairments struggle as local government hospitals or clinics don’t have health workers who can speak their sign language. Going to the clinic with third party to act as a translator is also a challenge, as the sense of privacy will disappear, hindering any confidentiality and leading to unwillingness to disclose.
Health facility buildings in our communities are often not user friendly for those in wheel chairs or walking with their hands. Poor families that we come from also make the situation even more complex. A lack of friendly health workers, peer supporters and home based care assistants who can assist people with disabilities results in young people with disabilities losing motivation to adhere to treatment.
While other young people are getting motivated to achieve 0 missed appointments, 0 missed treatment and 0 viral load, those living with disabilities do not even know their HIV status.
2018 theme for World AIDS Day “Know your status” encourages everyone to know their HIV Status. I am very impressed with this theme because it emphasizes that there is still a big gap of people who know nothing about their HIV status and are not testing due to the complexity of their issues.
This International Day of Disabled Persons I ask for the attention of donors, health providers, people from ministries of health, HIV/AIDS supportive organizations, youth advocates, youth networks, peer supporters and African community at large to understand the risks and complexities for key populations and vulnerable groups in accessing HIV/AIDS services. We need to work together to address these challenges and make meaningful and inclusive friendly health services for people with disabilities a reality all over Africa.