Phoebe: No-one should die of HIV while I'm around

The prevalence of HIV in Kenya is estimated at just under 6%. Although this represents significant progress - prevalence has fallen from 10% in the late 1990s - 1.6 million people are still living with HIV, and Kenya remains one of the highest-burden countries in the world. Every year, thousands more people are infected, and women remain more likely than men to contract HIV. On top of this, there is still considerable stigma surrounding the condition. 

Phoebe Adhiambo Orondo was born and raised in Kibera, Africa’s largest urban slum. She was just 17 when she found out her status. Now 34 and mother to a little girl, she works as a Mentor Mother as part of Amref’s maternal health project in Kibera. She draws on her own experience to help pregnant women who have just tested positive come to terms with their status, showing them that they can live a healthy life - and give birth to an HIV-negative baby. 
 


"When I was 17, I was very sick. I was suffering from a number of opportunistic infections, like TB, herpes on my tongue, and meningitis, which affected my brain. My mother took me to a traditional herbalist healer, who used unscrupulous methods to try to heal me, leaving me with painful burns." After two weeks and no change, Phoebe and her mother took her neighbours’ advice and went to the MSF clinic in Kibera (now supported by Amref), where she learned of her status.

"I was only 17," she says. "I knew more or less what HIV was - but I never expected to test positive."

After that, Phoebe was referred to a special care unit at Magadi hospital, where she spent two months recovering from meningitis. When she was discharged, she was referred to a counsellor, to whom she credits the strength she has today. "Because of my status, I felt I had nothing to look forward to. I barely left my house. But the counsellor was able to motivate me. I had a boyfriend at the time, and she said to me, 'You say you’re in love with this guy. Well, in that case you need to stay healthy, so you can stay with him.' My hobbies were going to town, going clubbing and dancing with my friends. The counsellor told me that if I took my drugs I could keep doing these things. And knowing that I could live a normal life kept me going.  

"During that period, something that really helped me was treatment literacy training. By this stage I was old enough to understand the stakes, and to take responsibility for my own health. I was able to interact with other HIV-positive people and see how they lived. This is what I wanted my life to look like!  

"Around the same time, I attended a 'Training of Trainers' so I could support other people living with HIV. I started working as a peer educator, giving health talks in Kibera South hospital (which is the facility I currently support as a Mentor Mother). They were looking for people living positively to be examples: because an HIV-positive person can reach out to other HIV-positive people by sharing her experience. Later, after I had my baby, I became a Mentor Mother." 

 

Combatting stigma, changing outlooks

"When expectant mothers first learn their status at the ante-natal clinic, they are often quite bitter. They can have an emotional breakdown. They assume that because they’re HIV-positive, their baby will be, too. They’re in a very vulnerable state. One of the things that strongly helps me in my line of work right now is being able to tell them that I’ve been through the same thing. It means I can tell them, 'You don’t have to cut life [short] today. There’s so much more that you can do, there are so many opportunities for you.'  

"We really want women to take ownership of their treatment, so we give them a lot of health information. We emphasise several key points: for you to be able to have a healthy baby, you need to start now, the moment you realise you’re HIV-positive. 

"What we’ve been able to do has created substantial change in the community. And it’s not easy to do: people are still very attached to the traditional mentality, to traditional ways of doing things. There is still a lot of stigma. But these days it’s very rare to have someone who refuses to leave their house because of the stigma, or not wanting to take their drugs - thanks to all the groundwork we’ve done. Still there are gaps, but we’re really doing our best to make sure that everybody is able to make good decisions and get good information about HIV. Every day, I draw on my own experience in my health education, to change people’s outlook." 

 

 

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"SISI NI MASHUJAA: We are heroes." The wording of this mural on the wall of the 'Amref Kibera' clinic couldn't be more apt. Kibera is full of heroes fighting every day to make Universal Health Coverage a reality.

 

Getting to zero

Today, Phoebe carries laminated photos of herself at 17 and 18, when her health was at its lowest point, as a reminder - to herself, and to others - of how far she’s come. "I'm a role model! In my community I went through an open process: people had seen me move from a state where they thought I was going to lose my life to a state where I was giving people hope. Today, I’m a pillar of the community; people use me as a reference."

"I met my now-husband at a psychosocial support group in late 2009. When I first met him, I didn’t fully trust him. After the meeting he asked me, 'Which direction are you going?' And by coincidence he was going in the same direction as me! We got married in December 2009, just a month after we first met - and in 2013 we had a baby girl. We named her Malia, after Malia Obama! We didn’t need to go through the process of disclosure, because we knew each other’s status from the outset. And that made things easier. 

"I wake up at 4.30am every day to clean my house and get my daughter ready for the day - and my husband, too! Around 7am, I take Malia to school, and then I go to work at the facility. On a normal day I work as a Mentor Mother from 8am to 3pm. The first few minutes I have health talks with the general population, then I have other activities: psychosocial support groups, home visits, follow-up with individual mothers . . . I make appointments to meet patients with high viral loads. I try to find out why. Sometimes it’s because they don’t have the money to buy their drugs. They don’t even have food to eat. I know what that’s like - there was a time when I was eating only beans. I was so fed up! But that was the only donation I was able to get from people. In Kibera, if you’re not working, then the community has to support you.   

"Today, I have a lot of demands on my time. Because I’ve been on TV [to tell my story as an ambassador for living positively], a lot of different people, organisers and influencers want to talk to me. I work it out with my colleagues, so that I can go and do the health talks, the facilitation. For me the other hustles that bring in income are important because they enable me to do what I’m passionate about, which is health education. After 3pm I pick up my baby and we’re reunited. But my phone is always ringing, at all hours of the day and night!  

"Our goal is to get to zero. That means we want to have a state where we have zero transmission of the HIV virus from mothers to babies. That’s what keeps me going. And I believe it’s doable. No-one should die of HIV while I’m around."

 

Phoebe is one of the many women (and men) working every day to make Universal Health Coverage a reality. You can join the fight for the #RightToHealth by supporting our work today. Thank you!

 

Story gathered in February 2018, on location in Nairobi, Kenya. Read the stories of more health heroes here