By Aoife Kirk, Key Correspondent for the Irish Forum for Global Health
The 2030 Agenda for Sustainable Development was adopted with a promise to leave no one behind. Nowhere is this more important than in tackling AIDS. Supporting young, vulnerable and marginalized people will change the course of the epidemic.
-UN Secretary-General Ban Ki-moon
Tereza* is a young 22 year old Tanzanian girl living in Dar Es Salaam in Tanzania, who is raising her seven year old HIV positive brother Jacob*, and her daughter May*. Jacob is merely one child out of the estimated 1.4 million Tanzanian population living with HIV (UNAIDS 2015). It’s 3pm on a hot Tuesday afternoon in one of the suburbs when Tereza sits down outside the classroom with her teacher to share her story and lessons along her journey to me. [*Names changed to protect identies.]
Tereza’s parents died when she was eight years old and subsequently they moved to live with their grandparents. Jacob, her youngest brother, was six months old at this time and became very ill. Tereza was left with the responsibility to bring him to the local hospital. At the clinic, Jacob was diagnosed with HIV, transmitted during breastfeeding.
After promising the clinic to keep the agreement regarding administration of Antiretroviral (ARV) medications, Tereza was left to fend for herself and her brother from the time she was ten years old. Her family told her on numerous occasions that “You’re the eldest, take your younger brother as we can’t look after him ourselves”. Jacob’s deteriorating health, along with the stigma around HIV, resulted in the two children being kicked out of home from an early age.
After moving to the countryside to live with their paternal grandparents, Tereza decided due to scant access to clinics for continuing Jacob’s medications, poor school and opportunities, it would be best to move back to Dar Es Salaam. The stigma, shame, and blame that Tereza faced due to caring for her brother soon affected the young teenager’s mental health, and she would spend many nights crying, wishing her mother was there to look after herself and Jacob. The pills were hidden from everyone and as her grandparents lived in the countryside, she feared for Jacob’s health due to limited access to specialized health services.
Tereza fell pregnant as a teenager after falling in love, thinking her new partner could help her to care for herself and her brother. However, her partner left soon after their daughter was born, announcing “I can’t manage – how can I look after you, your brother and our child when I don’t have a job”. Eighteen-year-old Tereza was left struggling.
Thankfully, Tereza has become one of the luckier statistics. Her former school which was set up by Irish she has managed to rebuild a life of safety for her brother who attends the local primary private school and her daughter has recently attended kindergarten. She now has proper access to a HIV clinic for Jacob, along with free access to drugs and laboratory services. While she is currently not working, she has been re-attending school in order to build a better life for herself and her family.
Unfortunately, Jacob still frequently suffers regular attacks of pneumonia, along with ocular complications from both the medication regime and from illness. While Tereza abides by the doctors’ advice on how to protect herself, she still finds it extremely difficult that communities continue to reject her brother and herself due to the ever-present fear and stigmatization of HIV.
Stigma exists in two main forms – perceived and enacted stigma. Perceived stigma is associated with the fear to seek or avoid seeking healthcare services due to the worry that someone may find out about their status (Lekas & Leider). Enacted stigma is the denial or prevention from receiving healthcare services or hearing others making discriminatory remarks due to their status (Lekas & Leider). As we can see from Tereza and Jacob’s story, stigma can be felt at many different levels including individual, family, community, programmatic and societal.
Jacob is just one out of the 1.4 million people who are living with HIV in Tanzania alone, one out of the 25.5 million Sub Saharan Africans living with HIV, and one out of the 36.5 million people who are living with HIV globally. That’s a lot of numbers! Out of these statistics, only 17 million (46%) of those needing ART are receiving it. The current reality is that the majority of the HIV positive population – 54% – who have no access to medications and healthcare.
In order to reach the targets there needs to be an increase in resources to respond to HIV and AIDS (UNAIDS). With recent political dynamics funding is currently in an even more fragile state than previously (Engender Health), and the unfortunate result will be that AIDS will not be ended as a public health threat unless we can source these investments (UNAIDS). This public health crisis in reaching AIDS & HIV targets goes hand in hand with gender equality – which is essential to tackle for long term abolishment of the disease.
The story of HIV is not over. In fact, we have another few chapters to write. It has changed from being a death sentence in the Western World, but yet in Sub-Sahara Africa education, prevention, and equal access to medications for all is needed now more than ever before. As Johnathan Mann, head of the Global Program on AIDS at the World Health Organization (WHO), stated before: there are three elements and phases of the HIV epidemic – the epidemic of HIV transmission, the epidemic of AIDS, and the epidemic of stigma, discrimination and denial. (USAID)
We need to do more to prevent HIV in a social, economic and global perspective. Let us be the generation that can change those statistics, and reach the Sustainable Development Goals target to end the AIDS epidemic by 2030.
I just hope (we) can stop other people going through what I have experienced
This was Tereza’s only request as she departed from our meeting, on her way to the hospital to pick up Jacob’s medications.
Dr. Aoife Kirk is a junior NCHD doctor after graduating with medical degree from NUI Galway in 2015. Her special interest areas include global health, mental health and geriatrics. She is an avid traveler, and a believer in sustainability, good communication, education and of course – good coffee.
Lekas, H.M. et al. “Felt And Enacted Stigma Among HIV/HCV-Coinfected Adults: The Impact Of Stigma Layering”.
EngenderHealth The Global Gag Rule
UNAIDS The collapse of global AIDS funding
Rankin, W.W. et al. “The Stigma Of Being HIV-Positive In Africa”.
USAID “Breaking the cycle: Stigma, discrimination, internal stigma, and HIV”