‘Get tested, Help keep you healthy and others safe’ – A tale of refugees living with HIV in Rwanda

“Knowing my HIV status gave me piece of mind – and testing was the only way I could know for sure.”

By: Eugene Sibomana | 4 Jan 2019

Kigali – Rwanda, Deo* knew that he is HIV positive since 14 years ago. Sixty year old Burundian refugee, Deo got tested when he was on holiday in Rwanda in 2004 and the results came as ‘HIV positive’. Making a lost face, lowered Deo shares his story quietly.

“I used to come to Rwanda to visit a friend of mine who lives in Nyamirambo, Kigali. In 2004 I was very sick and doctors could not find what I was suffering from until my friend suggested me to get tested for HIV.”

“I was shocked when the counsellor called me to urgently come to the hospital after the test. I went there and I had my friend, a doctor and a counsellor in the room – I was really scared when I saw all of them and understood that something serious happened.”

Deo said that he didn’t believe first results from the Rwandan clinic. In a hurry, he decided to get back to Burundi to meet his family and tell them the bad news he had just received.

“They told me ‘You’re HIV positive’. I was not convinced until I go back to Burundi and get tested again, I was HIV positive.”

“After the HIV confirmation in Burundi, I got really depressed. I thought my children and my wife are okay, but me I am going to die. Who is going to take care of them? I just shut down and I went into depression silently until my wife and children reassured me with heartening and positive words” Deo said.

‘Get tested, Help keep you and others safe’

Many people do not know their status even if some of them are living with HIV and do not know that they have it. Deo says that he doesn’t know how long he lived with HIV without knowing it, but after knowing his status, he started measures to keep him healthy and keep others safe.

“Getting tested gave me vital information that helped keep myself healthier – and others – safe. Knowing my HIV status gave me piece of mind – and testing was the only way I could know for sure,” he said.

Since 2004, Deo, who is also a father of four HIV negative children started to go to the clinic. In 2015, when political crisis began in Burundi, Deo was not able to get his antiretroviral therapy. He decided to flee to Rwanda because he had believed that he can get treatment without difficulty.

“After knowing my status, I decided to continue living, I decided to take my treatment (antiretroviral – ARVs) every day since 2004,” he said. “As the situation was deteriorating in Burundi, it was not easy to get to the clinic. I missed a significant number of doses and my life was in peril. After learning that I could get treatment in Rwanda, I decided to quit Burundi and flee to Rwanda.”

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Anne-Marie (Anna)*, from Burundi interacts with UNHCR Health staff. ©UNHCR/Eugene Sibomana

‘Life after HIV-positive diagnosis – A mother, not an HIV positive person’

“In 2015, I was told that HIV testing is a normal part of life and that everyone was doing it in my hometown in Burundi. I told myself: Anna*, you can too!”

Anne-Marie (Anna)*, 56 years old, is a Burundian refugee, mother of two. She knew her status few months before she fled to Rwanda. She says that it was not easy for her to admit that she was HIV positive, but her children helped her to get stronger.

“After getting my results I felt very dejected. I was in shock. All I could think about was how can this happen to me and why. My first question was: How my children will handle this bad news? I was really scared. I was in denial and didn’t know how to continue living,” she said.

The family and all the people who know the truth about Anna’s health status helped her to make progress and strengthened to live as long as she can with HIV. She says she also owes her long life to the positive mindset she adopted after attending counselling sessions.

“I committed to live as long as I can. Above and beyond, I have a supporting family and friends who don’t judge me. My children have always considered me as their mother and help me to hold my head up high,” she said.

“HIV didn’t stop me living a long, happy and fulfilling life that I have been living with my family back in Burundi. I’m happy with the love and support from my friends and family. In addition, I am always grateful that I can access free treatment through UNHCR supported clinic being run by AHA. This showed me that there is life after an HIV-positive diagnosis.”

Even if you find out you are HIV positive, getting treated for HIV improves your health and prolongs your life. Anna heartens people to go for voluntary counselling and testing for HIV.

“Getting tested for HIV gives you important knowledge to protect your family and the entire society. If you learn that are HIV-positive, follow the doctor’s advices in order to get healthier and live longer,” she said. “Sometimes people are tricked by their perfect healthy conditions, and think that they don’t have to get tested! That’s wrong – You cannot rely on symptom to know whether you have HIV or not.”

‘Challenges in Urban areas’

Tragic and reassuring as their stories are mixed, Deo and Anna, are just two among hundreds of refugees living with HIV in Rwanda, where adults aged fifteen years and above could be newly infected with HIV – estimation ranks between 5,000 and 8,200 people as of the end of last year.

In Rwanda, HIV-positive refugees living in six camps have access to free antiretroviral therapy (ART). However urban refugees living with HIV/AIDS encounter a number of hardships that leads to missed doses.

Some problems such as a one to two hours walk to the clinic as sometimes they cannot get transport money, food insecurity, lack of income generating activities which leads them to constantly ask for money to friends and families – are barriers highlighted by Anna and Deo which are faced by many refugee living  with HIV in urban areas in Rwanda.

* – name changed for protection reasons