A Ugandan-born woman diagnosed with HIV in 1988 who went back to Africa to die, arrived in the UK with a CD4 count of one, and built a career spanning 20 countries in African health policy.
Winnie Sseruma left Uganda on a scholarship to study sociology in Kansas in 1981. The students there asked her if she lived in a tree. By 1988, she was 27, back in the United States, and applying for an internship that required an HIV test. It came back positive. She told her partner, who blamed her, ghosted her, then called back weeks later to say his own test was negative. After that, Winnie stopped telling anyone. She sat through conversations where friends described how they'd treat an HIV-positive person - never eat in their house, never share a bathroom, never be friends - and said nothing.
She was offered AZT, which she couldn't afford. The side effects turned her skin from shiny black to ashy. Between 1990 and 1993, her brother, her mother, and her father all died while she was trapped in the US. In 1994, she packed six months' worth of medication and flew to Uganda to die. When the pills ran out, she got TB, pneumonia, and diarrhoea. She nearly died, but a short trip to the UK saved her. At Newham General Hospital, her CD4 count was one.
A Ugandan woman she'd met only briefly invited her to a place to socialise. It was a support group for people living with HIV. Winnie could see herself in the women there. She went from preparing to die to learning how treatment works - and it was, in her word, invigorating. She co-founded the African HIV Policy Network, chaired it from Parliament, co-wrote Our Stories Told by Us, and now monitors health programmes across 20 African countries for the Stephen Lewis Foundation.
Winnie remembers her brother, who died of HIV-related TB in 1991 at the age of 27 - the same age she was at diagnosis. She wants him to know he was loved.
Winnie Sseruma was born in Sheffield and raised in Uganda. She was diagnosed with HIV in 1988 in the United States. She co-founded the African HIV Policy Network, chaired it from Parliament, and co-wrote Our Stories Told by Us: Celebrating the African Contribution to the UK HIV Response. She works across 20 African countries monitoring health programmes for the Stephen Lewis Foundation.
If you have been affected by the themes in this episode, support is available at tht.org.uk.
Dan Hall
Welcome to 'HIV: The Morning After'. I'm Dan Hall. I'm a documentary producer and director. I've spent my entire adult life watching ignorance and prejudice play out around HIV. And frankly, I'm tired of it. And I'm sure many of you are too.
This podcast is an attempt to do something about that. By doing what I do best, interviewing people and letting them tell their own stories.
I can make these episodes, but I can't make people listen to them or find them on their algorithms. That beats down to you. Please rate, review and share 'HIV: The Morning After'.
Right then, let's get started.
::Dan Hall
, she was raised in Uganda in: ::Dan Hall
But she didn't die. 30 years later, Winnie works across 20 countries in Africa, monitoring health programmes for the Stephen Lewis Foundation. She co-founded breakfast clubs for vulnerable children in Uganda, and she's been a magazine cover star, a policy leader and an international consultant. But this conversation isn't about her CV. It's about the journey from silence to survival, from isolation to activism, and why she believes HIV is still very much an unfinished agenda.
::Dan Hall
Winnie, welcome to 'HIV: The Morning After'.
::Winnie Sseruma
Thank you Dan.
::Dan Hall
So let's start at the beginning. What's, what is a young Winnie like?
::Winnie Sseruma
That takes me back a long time. I went to university on a scholarship, and left Uganda, at 19 years old, and, went to, the U.S., to study at university in Kansas.
::Dan Hall
And what year was this?
::Winnie Sseruma
This was: ::Dan Hall
Okay, so: ::Winnie Sseruma
Well, I got a scholarship to go to this university in Kansas. And that is basically it's, you know, we didn't have a choice, but this was a huge opportunity, for me, for, you know, for my family to go and and study and be something fantastic.
::Dan Hall
city to define that? What was: ::Winnie Sseruma
Oh, my God, I don't think we have enough time for that. It was interesting. You know, it was, a cultural shock when I went to university that the kinds of questions that I was being asked were just ridiculous. And for me, that is not what I expected in America. I went to America thinking, people know everything. America is, you know, the land of opportunity.
::Winnie Sseruma
People are smart and they do these amazing things. And what I found and and experienced was not exactly that.
::Dan Hall
So what kind of questions were you being asked?
::Winnie Sseruma
Oh, they were asking me how I knew English, how I you know why. You know why I spoke English. And how did I get to learn that? And, you know, they thought that we lived in trees, literally in trees. And I'm thinking, what is going on? Did I arrive in the wrong country?
::Dan Hall
What happened to people? So they thought that in Uganda you lived in a tree?
::Winnie Sseruma
Yes. In: ::Dan Hall
That's crazy. I can't believe that.
::Winnie Sseruma
I experienced it. I can tell you that there were. I think we were about a thousand, maybe a thousand student or so. And there were about six of us in the whole university. Six black people.
::Winnie Sseruma
university. I which was about: ::Winnie Sseruma
When I went back, my family was okay, but life had changed. My life was dramatically different. There were less resources. There was a lot of worry. The country was in trouble. You know, just like a country after a war. There was a there was talk about, you know, this condition that had been killing people in, like, villages had been wiped out, but nobody knew what it was at that particular point.
::Winnie Sseruma
In: ::Dan Hall
I'm assuming that there was no expectations on your part that you would return a positive result.
::Winnie Sseruma
Yeah, it was shock. It was, you know, I felt like my life was flashing right in my face. I thought, oh my God, how can my life end like this? Because I didn't see a way out. I didn't see any way forward. I, you know, I had heard about HIV, you know, in the U.S., I had heard about HIV in, in Uganda very fleetingly because it wasn't a subject that I felt was relevant to me at that time.
::Dan Hall
And this is in: ::Winnie Sseruma
A death sentence, basically. That's what it was.
::Dan Hall
A death sentence for a young woman.
::Winnie Sseruma
Of 27.
::Dan Hall
Okay. They.
::Dan Hall
Did.
::Winnie Sseruma
Develop it.
::Dan Hall
And of course, one doesn't receive diagnosis in a vacuum. We live in a real world. We have partners, families, friends. Did you tell anyone or did you carry this pressure alone?
::Winnie Sseruma
Well, I was obligated at that time to tell my, you know, the partner that you know, and the person that I was dating at that time, that was part of the diagnosis. They ask you to, you know, either they ask you to tell them or to tell the clinic to contact them. So I thought, let me tell them, because there are only so many times when you can tell somebody if you don't want to sleep with them, or today, I have a headache.
::Winnie Sseruma
Today, I'm not feeling well. And I knew I didn't want to go through that. So I called the person that I was dating at them at that time. You know, I had transsexual man and they did not react well to it at all.
::Winnie Sseruma
They blamed me for, for putting them at risk. They cost me out. And as they say nowadays, they ghosted me.
::Dan Hall
And how did that make you feel on this position and time when you were incredibly vulnerable?
::Winnie Sseruma
That's not what you want to hear from somebody you feel should have your back.
::Winnie Sseruma
And it was it was devastation upon devastation. Fortunately, eventually they called me back and told me they had had the test and they were not positive. And for me, that was a relief. At least I wouldn't have that on my head that I had, you know, infected somebody.
::Winnie Sseruma
Even though it would have been unintentional. But it it told me something. That experience that's telling was not a good thing. So I didn't tell anyone after that. It wouldn't be used for telling my, my parents because they were far away and they would worry. And I didn't tell my friends, especially as I sat in on conversations where, people were discussing, how they would treat an HIV positive person if they knew that, you know, that person was sitting next to them while I was part of these conversations.
::Dan Hall
And what sort of things are they saying?
::Winnie Sseruma
They would say that they would never eat in their house. They would never go to the same bathroom, they would not live with them, and they would not be friends with them.
::Winnie Sseruma
And so all of that information was just telling me, you are a pariah. You are not wanted. You are the worst of the worst.
::Dan Hall
And then added to that, you're offered a drug which at first seems like a good thing.
::Winnie Sseruma
Well, for me, I looked at this drug, as you know, prolonging my life for just a few more years, however long that was, even if it's 1 or 2 years.
::Dan Hall
And was as part of the Concorde trial here in the UK.
::Winnie Sseruma
No actually went because I received my diagnosis in in the U.S. it was. Yes, it was it was a trial. I'm not sure if I, you know, if, if I knew exactly what kind of trial, the name of the trial. But I had to pay for this medication.
::Dan Hall
Well, that's, I always forget about that. Was it expensive?
::Winnie Sseruma
It was extremely expensive. It was extremely expensive, and I couldn't keep up.
::Dan Hall
Wow.
::Winnie Sseruma
I really couldn't keep up.
::Dan Hall
Can you help us understand what it is like paying for a medicine that you think is going to save your life, and knowing that you do not have the financial capacity to continue paying for that medicine that you think will save your life.
::Winnie Sseruma
Well, it is, it is unbelievably stressful. It's no way to live. Definitely. It's no way to live. You know, and I think some people do know that in America, you have to health, you have to have health insurance, and that health insurance is, is usually attached to whatever job it what it is that you are doing.
::Winnie Sseruma
And it's mainly, you know, white collar job seeker working at McDonald's, Taco Bell or whatever. Those kinds of jobs don't give insurance policy. So you either have to have insurance or you don't have insurance. And I didn't have insurance. Then you have to pay for your medication.
::Winnie Sseruma
And it is incredibly difficult. And many people, you know, get in trouble because they can't pay health insurance, especially if you're a migrant, if you're, you know, if you're a student, if you are anything, you know, if you are not, you know, able to sustain yourself financially, health, you know, not having health insurance is incredibly expensive.
::Dan Hall
And on top of that, you have terrible side effects on this.
::Winnie Sseruma
I was experiencing, nausea in the beginning. Couldn't keep food down. So that meant, you know, even when taking their medication, I would throw up. So it means it wasn't even effective. My whole, like, skin colour changed from from just being, let's say a shiny black to, you know, like, ashy black.
::Dan Hall
And they said to you was the only option, wasn't it? In the late 80s and early 90s, this monotherapy, high doses, brutal side effects. There wasn't another option.
::Winnie Sseruma
s of of this cycle, let's say: ::Winnie Sseruma
tely HIV positive. He died in: ::Winnie Sseruma
I took, six months worth of medication with me, and I, you know, as soon as my medication ran out in Uganda after six months, I got TB, I got pneumonia, I got diarrhoea, and I nearly died.
::Dan Hall
And.
::Dan Hall
And at that moment when he. What is it like to feel that your end is approaching? Because each one of these illnesses, you would never know if this is the one that will take you. I can't imagine the stress that that must have caused you.
::Winnie Sseruma
It's a very strange feeling. It. When.
::Winnie Sseruma
When I flew out of Uganda to come to to the UK, it was for two weeks and I was going to go back to die because that was my plan.
::Dan Hall
And so what happened?
::Winnie Sseruma
I arrived in the UK and went to new, General Hospital to have a check-up because I hadn't had one in ages. And of course, there I was told that, my body was in such bad shape and I had the CD4 count of one, so I definitely had Aids.
::Dan Hall
A CD4 count of one one. Wow.
::Winnie Sseruma
And hearing that, hearing how close that was to deaf hearing, I had this Aids diagnosis. And I think, you know, you know, everything just came rushing back. And I broke down and cried like I never cried before.
::Dan Hall
Was that a moment of relief almost, that it could just all suddenly come out? Everything, all that secrecy you'd have to do, all the hiding, all the everything. And even if it was a breakdown of despair, at least, at least the emotions were coming out. Or was it just a horrible experience?
::Winnie Sseruma
It was. It was a relief. It was more relief than. Yeah, then than anything else because I felt like I could yeah, I could finally let it all out. And even if, you know, death was near, I, I still felt that relief that I was finally confronting it. I was finally dealing with it.
::Winnie Sseruma
But it wasn't until, this woman that I had met, this Ugandan woman that I had met, very fleetingly in the building where my my brother was living at that time, who asked me to go to, you know, to this place that she was going to, that where she used to socialise and that, you know, people came to socialise.
::Winnie Sseruma
She didn't actually tell me it was a place where HIV positive people went. She just said, oh, it's just a place to socialise.
::Winnie Sseruma
And, since I was on holiday, didn't have, you know. Yeah. Anything else to do. And I went and it was a support group.
::Winnie Sseruma
For people living with HIV. You.
::Winnie Sseruma
This space worked for me because I could see myself in all the women that I heard telling their stories.
::Winnie Sseruma
So it meant that I wasn't alone. I didn't feel alone. I felt like is somebody else is experiencing the same thing? How, when? So it made me connect. I connected to these people and.
::Winnie Sseruma
What I did next was volunteer to go to this group where people would learn about HIV treatment.
::Dan Hall
And why did you decide to do that?
::Winnie Sseruma
Well, a friend just told me that this is where they go to learn about treatment. And I thought, well, I'm happy to go with you. Let me see what happens there. When I went there. And so the people who were there, many men, women from all different walks of life, and I was learning something so interesting that I had never learnt before how the treatment works in the body and effectively makes you better.
::Winnie Sseruma
It was so interesting, and to learn it in a way that was, engaging and accessible to me was amazing.
::Dan Hall
So then how was learning to live different than preparing to die?
::Winnie Sseruma
What a fantastic question. I really felt like, that engaging and being proactive about my life with so much more information than I had ever had before was just so invigorating. Preparing to die. Yes, it was out there in my mind, but I didn't know exactly when or how that was going to happen. And so, yeah, being able to learn about treatment was so invigorating.
::Dan Hall
And do you think those early years of treatment, when you were incredibly ill and everything leading up to that point where you found your people and you found your knowledge, do you feel that those years before then did leave scars on you?
::Winnie Sseruma
I love those scars.
::Winnie Sseruma
One of the things that I didn't think that I would ever do was to learn to to love my life as an HIV positive person.
::Winnie Sseruma
Because HIV is such as stigmatising disease. And you think, how can somebody be okay with that with such a condition, you know, that is going to kill you, that you know that is eating away at you, but with treatment, with being able to, share this information with others who also engage with it and, and are able to, you know, to use it in a positive way is amazing.
::Dan Hall
So then, Winnie, can you tell me about Fed Up?
::Winnie Sseruma
So Fiona was, a group of African women living and, well affected, but mostly living with HIV. That,
::Winnie Sseruma
Some colleagues of mine and I put together to really support, African HIV positive people to grapple with policy issues. One of the things that I learned through my work, through my early work with HIV was that, yes, we can do the community work on the ground, you know, support people and all of that. But what is important?
::Winnie Sseruma
With that, in combination with that is to be able to formulate policy.
::Winnie Sseruma
And make sure that things, you know, attending to policy so that those policies can be on the books and those policies can be practised, and that people understood what that process was.
::Dan Hall
And what kind of structural challenges were there? What kind of things would be fighting?
::Winnie Sseruma
Oh my God. There were a lot of different things. First of all, I was in this new country where I was trying to establish myself, but I was also putting myself up, you know, for positions within the African communities to be able to lead these small organisations, small community organisations that were unable to get funding in a country where there was so much animosity, not just in terms of, you know, towards migration, not just in terms towards, you know, towards, you know, the issues like race, but, you know, with black communities being the second most affected communities with HIV, there was so much, oh my God, there was so much
::Winnie Sseruma
negativity, especially in the press, that newspapers were brutal. You know, when it came to migrants with HIV, it was scary.
::Dan Hall
What kind of things we reading?
::Winnie Sseruma
Oh my God, it was about this refugee comes to the to the UK and brings HIV. It was mostly about bringing HIV in the country and they should be all sent back. You know, stuff that is not very, different from some of the things that are going on, right now, but without HIV. But stories like migrants, the instant migrants are taking over, migrants are taking our money, migrants are taking our houses.
::Winnie Sseruma
Is that familiar?
::Dan Hall
Absolutely, absolutely. It bloody the wheel turns around, isn't it.
::Winnie Sseruma
Exactly. But that's then had this intersection with HIV, which was even worse. So many people didn't want to come out, didn't want to speak up. At some point I put myself up as, you know, chair of this national African HIV Policy Network and, and, you know, and became the chair and found myself in Parliament speaking on, you know, on behalf of the communities and what we were experiencing and what we needed.
::Winnie Sseruma
It was tough work.
::Dan Hall
And to the side of that, did you feel that within the HIV sphere, black African women were maybe not being serviced as they should have been?
::Winnie Sseruma
There is also that intersection of of gender and and yes, we weren't being served and and and part of our support network where the support groups, the support groups were effective, especially for African women because most of these support groups also supported children, you know, and many African women have children who needed support. And some of those children were HIV positive.
::Winnie Sseruma
And I think, you know, there wasn't a system in this country that was able to.
::Winnie Sseruma
To do that, you know, to to be able to be effective in that way, to support families, because we have families that were all literally HIV positive, the father, the mother, and some children being HIV positive. And there wasn't sort of a social support system in the country that was able to do that. So we had to work together to set that up.
::Dan Hall
And I think this is why the ubuntu philosophy is so wonderful, which is something that, Angela Namibia was talking about this sense of community because often more formal systems do not support us correctly. And I think sometimes the more informal community spaces can do a far better job.
::Winnie Sseruma
Yes. And that's why it is important to support communities where they are to ask them what they need rather than impose, systems or whatever it is on them. And that wasn't being, you know, a facilitate it even when, you know, we were working with the Department of Health at that particular time. They, go to, sort of statement was we can support, you know, all the different communities from all the different countries.
::Winnie Sseruma
We have to support you as an African community and, and the, the the kind of funding we we were able to get was peanuts. Can you imagine if, for instance, somebody tells you that, oh, we can support you, Dan, as you know, as a British community, we can support you as a European community because that's what they were asking us to do.
::Dan Hall
That's ridiculous. That is that so treating Africa like it's a country.
::Winnie Sseruma
Yeah. And that was it in a nutshell.
::Dan Hall
With no, no recognition given for different requirements and needs for the countries within Africa. Just one big sledgehammer solution for an entire continent.
::Winnie Sseruma
Yep. Wow. I know, and of course that didn't work. It didn't work because even within these, you know, within the different African communities, some communities were affected more than others. And that's just where in denial. And as it was so incredible, it was such incredibly difficult work to do.
::Dan Hall
So before we enter the final part of this episode, can you tell us about the international work you've been doing because you branched out from stunning domestic work to global? Now, you know, having and, we were talking just now about the ridiculousness of Africa being treated like a single country and the individual needs of the countries within Africa just being ignored.
::Dan Hall
But you then, of course, being you have stepped in with organisations and are really trying to bring about change.
::Winnie Sseruma
Well, you know what it was the, the landing into international development work was completely accidental, but it is one of the most amazing things that I feel, I, you know, I've been doing and have had wanted to do for a very long time. So I, I work, for a funding organisation that really funds mostly, well, just really Africa an organisation, community led, small.
::Winnie Sseruma
Organisations mostly who are working on HIV in about 20 different African countries.
::Dan Hall
Because I imagine providing good HIV support isn't simply a matter of making sure tables gets are. In fact, this must apply to any medication, any treatment that is required. You know you can't take medicine unless you have clean water. We can't. You know, there is there's no point in having a medicine if you can't distribute it. There's that.
::Dan Hall
There must be so many support systems that are required in order to allow there to be effective health care.
::Winnie Sseruma
They are. Dan, you are very right. They are. And yeah, this applies not only to these community led organisations, but also to anybody providing any kind of HIV service anywhere. However, there's something specific about these small community organisations, that initially were not able to access funding at all, because the big international NGOs, you know, had all the funding and they would do all the work.
::Winnie Sseruma
And that didn't really get down to the grassroots. These small, mostly women led organisations have so much impact in their communities. We know that when women mobilise, you know, they bring along everybody with them. And that is so important to grasp. But yet, but yet these small organisations never get to the funding even now.
::Dan Hall
But women are not being listened to. So I've been speaking to contacts on the ground in Uganda and Kenya, and they're telling me some of them that, with the cutting of the funding and funding now going kind of directly to government rather than via, say, USAID or PAP, far into them, but these central government organisations have no interest in having conversations with the community about what is needed or about the most effective ways of doing things that they've been completely frozen out of these conversations, which kind of takes us full circle back to this idea of it's not quite as bad maybe as Africa being treated as one thing, but if the government of
::Dan Hall
a country is just treating that whole country like one amorphous mass, instead of going to those communities that are the front ends, that are the coalface, then they're not going to be efficient with their spending.
::Winnie Sseruma
And that is a big mistake. And we've been here before when the HIV pandemic, you know, epidemic started, we've been doing all this work to make sure that, you know, we didn't have to come back to this place again, where community members have been trained, where organisations are best, the community led organisations are best placed to know how to distribute the resources to their communities.
::Winnie Sseruma
And that's why it makes me so proud to work with the organisation that I do, because the support they provide goes directly to, the community led organisation, and it doesn't pass through any other, governmental or any other organisation.
::Dan Hall
So then, Winnie, can you tell me about the book that you co-wrote?
::Winnie Sseruma
I co-wrote this book with, four friends of mine. We have this amazing support network of five, and we felt like we needed to really change perspectives about the way that, we are seen as Africans living with HIV and how the work of the communities, has contributed to the HIV response. There was nothing. There was nothing, about, you know, how Africans mobilising, especially as communities, we are the second most affected communities in the UK with HIV.
::Winnie Sseruma
first identified in the UK in: ::Winnie Sseruma
We are empowered people. We are making change. So our book that we wrote is called Our Stories Told by Us, celebrating the African Contribution to the UK HIV response. And it gives a different perspective on what African communities are doing on the ground and the changes that make it not just within the communities, but changes within this country.
::Dan Hall
Now then, we need every episode. I like us to take a pause for remembrance to, in our minds, maybe go to the gardens at the London Lighthouse. And this is where I ask you, is there somebody that you would like to share with us to allow us to take a moment of remembrance with you?
::Winnie Sseruma
Yes. Actually, I would like to share,
::Winnie Sseruma
Remembrance of my brother. My brother, died.
::Winnie Sseruma
Due to HIV related TB in: ::Winnie Sseruma
That's the same age I was diagnosed that with HIV.
::Winnie Sseruma
He was a middle child. He was a gentle giant.
::Winnie Sseruma
He was loved. And I think that is because of when he died. There was so much stigma and I wasn't there with him. But, you know, I, I sent messages back and forth, but I was also told that he experienced a lot of HIV related stigma. I think what I would want to say to him is that he was loved.
::Winnie Sseruma
He was loved, especially by his sister and his whole his whole family.
::Dan Hall
Now then, when he. You've lived with HIV now for 38 years, you've survived isolation, AZT, near death, resurrection, you've built organisations, you've supported thousands of people, you fought for access. And with all that wealth of knowledge that you have, if you could send one message on a postcard to the world, what would it read?
::Winnie Sseruma
One message. That's very limiting then. But I'm going to try.
::Dan Hall
I'm harsh like that.
::Winnie Sseruma
Okay. Well, I'm going to quote, Maya Angelou, a poet that I really liked, and a writer, one and put my own interpretation on it. I would say in Maya's words, do the best you can until you know better. Then when you know better, do better.
::Winnie Sseruma
My interpretation of that is we all need to get involved in what is happening with our lives, with the world within our communities. Just do something.
::Dan Hall
We need some. Newsroom. Thank you so much for coming and joining me on HIV the morning after and sharing your fantastic story and your inspiring, work that you do. It's been glorious having you on.
::Winnie Sseruma
Thank you for having me, Dan. Really enjoyed this and keep up the work. You are amazing person.
::Winnie Sseruma
You.
::Dan Hall
If you were moved or informed by what you heard today, please help spread the word. Subscribe to HIV the morning after and leave a rating and a review. It makes a huge difference in helping others to find it. Your support helps to amplify these experiences. If you'd like to get in touch, you can email me at [email protected].
::Dan Hall
And remember, if you encounter HIV stigma and a bar, call it out. If you encounter it at work, call it out. If you encounter it online, call it out. Because if you don't, you're part of the problem.
::Dan Hall
The theme tune is by Paul Leonidou at Unstoppablemonsters.com, and many thanks to Moray Laing for his continued support. And thank you for listening. Join me next time for another important conversation on HIV the morning after I've been Dan Hall.