“... There is a better understanding that the health of people and the health of economies are tightly linked. So we can do much more now, make more progress on health, because this relationship is better understood. We should take hope from that and fight more on the issues of equality, reducing inequalities in health and giving everybody their right to health.”
Winnie Byanyima recently became the Director-General of UNAIDS, the United Nations organization that is leading the ambitious global effort to end HIV AIDS as a public health threat by the year 2030. Having been appointed in February, the start of her journey has been full on with the rise of the COVID-19 pandemic in March. She talks about what it's been like having to deal with the complexities of two pandemics at once and what she has learnt so far.
Melissa Fleming 00:00
From the United Nations, I'm Melissa Fleming and this is Awake at Night. My guest today is Winnie Byanyima, the director general of UNAIDS. This is the United Nations organization that is leading the ambitious global effort to end HIV AIDS as a public health threat by the year 2030.
Winnie you are from Uganda, but today, you're speaking to me from UNAIDS headquarters in Geneva where you're based. I'm speaking to you from my home office in New York. You might hear some sound effects from the city in the background. First question to you, how is the COVID-19 pandemic affecting your work in combating HIV AIDS?
Winnie Byanyima 00:49
Well you know I'm new in this role, Melissa, I had barely arrived in January to take up my post here and we were hit by COVID. It affects our work and it is affecting us and people affected by HIV in very serious ways. First, many countries that have a high burden of HIV AIDS are poor countries. In the rich countries this problem has been largely controlled. People are on treatment and living long and healthy lives. Even though there is no cure and there's no vaccine there are treatments that keep people without infecting other people and also living good and healthy lives. But in poor countries it is not controlled. We see new infections, we see people still dying of HIV related illnesses. So in these poor countries, these are also the countries now that are struggling to cope with Coronavirus at the same time with the HIV epidemic, they have two epidemics going at the same time. They're also countries where their own ability in the health system is so weak. So they're struggling. And what do you see? Hard choices where our well established systems for preventing and treating people with HIV are being drawn upon to fight the Corona pandemic. So we’re seeing disruption in the services for the people living with HIV. Clinics closing, staff being deployed to fight coronavirus. So we are seeing that, on the other hand lockdowns. Lockdowns are hurting the communities that are affected by HIV even more than others.
Winnie Byanyima 02:56
For example, people living with HIV need to go to the clinic to collect their ARVs now many are afraid because they think they're going to catch Corona there. Others are prohibited because lockdowns include restrictions on movement. So we had to move in quickly to help governments to know how to apply public safety measures that don't take away the opportunity for people living with HIV and are vulnerable to seek their treatments. Then there's also human rights, that when public safety measures are applied evenly and forcefully that certain groups of people whose human rights are contested tend to suffer even more. So you found gay people, you found sex workers, you found people who inject drugs, transgender people, facing particular difficulties, more discrimination, more stigmatisation in the context of Corona. So we've been fighting on many fronts, but working with governments, helping governments to understand why human rights must be central in this struggle. You can't fight one epidemic by taking away from another.
Melissa Fleming 04:20
This is something that you really hadn't anticipated when you took this job. You came and you had this goal, we're going to eradicate AIDS by 2030. And now it's compounded by this: do you know a personal story of anyone who has personally been affected by both diseases at the same time?
Winnie Byanyima 04:41
Absolutely. We, I keep hearing many heroic stories. I know about a young man who got on his bicycle and offered to go to the clinic, him, and collect the ARVs for 6/7 other people and deliver for them. So that it's only him taking the risk to go to a health facility and taking the risk of actually also getting in trouble for breaking restrictions on movement and supplying to his colleagues. We've got women who got up and said, we're going to go out and speak to the authorities about the rights of pregnant women, to go to seek health. We are going to challenge the lockdown rules because they don't work for women and girls, pregnant women need to be allowed to go to the clinic, they cannot stay at home
Winnie Byanyima 05:45
during labour. And they and they do it against a lot of risks for themselves because they are talking to police, to security, to people and these things inspire us. We had people who got, who were travelling and suddenly ran out of their medication and they were stuck and couldn't move. And then you had others who didn't know them going to great lengths to find them some ARVs and bring them to them because this is life saving treatment, you need to take your pills every single day. So many many stories of, of heroism, gay people who were in prison. Really it was more a case of
Winnie Byanyima 06:36
discrimination, persecution, they had not broken any rule rules, but they were herded into jail. And a small group of activists fighting their case in court to get them released over several months. And dealing with the homophobia in society but pushing relentlessly until they got them out of jail, many stories
Melissa Fleming 07:06
That's incredible, I think most of us have never haven't heard this this angle of it and also I think to frame this as a human rights issue as well. There's no one size fits all on the measures for the coronavirus pandemic.
Winnie Byanyima 07:24
We had transgender people who, you know, there were rules like if you are a man, you come on Monday for your ration. If you are a woman, you come on Tuesday, and if she shows up, they say you've come on the wrong day. But she's transgender, excuse me. And, and then you had some of them being asked, bring your identity card in order to get some food. She has no identity card because they've never accepted that she's transgender. So she can’t get her supply of food. You had sex workers being asked to prove if they came for an unemployment benefit to prove that they have been previously employed, they had no proof because they are not recognised as sex workers. So you had so many people for whom lockdowns, including social protection measures were not working for them. So this is the kind of work we had to do to help.
Melissa Fleming 08:31
Right so it is kind of exposing the already existing inequalities and justices, things that need to be fixed and exacerbating it at the same time, a lot of the discrimination and the stigma. If I mean, when you think about this, this pandemic, what is keeping you awake at night?
Winnie Byanyima 08:49
You know, what was really scaring me and actually making me angry is that people living with HIV and communities that were vulnerable to HIV, fought hard for the last 40 years. They fought for everything, from fighting for investments to come in to look for a vaccine or a cure or a treatment. They fought for that. They fought against prohibitive laws like they were countries that were saying you have to do an AIDS test before you can enter our country. They were not allowed to travel. They fought against those violations of their human rights. They fought to be recognised as people with a right to health to have services. If If a gay man walks into a clinic in many countries, they are a victim of abuse. They are abused, they are not treated like their citizens. So they fought to deliver their own services for themselves where they can be, receive treatment in dignity. They fought for all this and now it is there. But suddenly, they were losing it because countries were struggling with a new pandemic that seems to be even more threatening right now. And everything they had built was slowly being taken away. And they were feeling like after 40 years after many of us died, now it's going away from us. And in a way, I was feeling angry and helpless, that we're losing the struggle. But today I'm in a more confident state because now, as more data comes in, we are seeing that our worst fears have not
Winnie Byanyima 10:44
come to reality. That yes, disruptions are there but slowly governments are beginning to understand that you can't lose the battle on one to win the battle on another, you must keep both balls in the air and they are finding creative ways. So it's less threatening than it looked a few months ago, but it is still worrying. Look right now, we are seeing at least nine candidate vaccines that are about, that could be there for people. But look, the rich countries are booking them out for themselves and leaving just crumbs for the poor countries, that’s unacceptable. And people living with HIV are saying no, we can't see this happen again. We saw it when ARVs were found and people in rich countries could get on treatment and live long and healthy lives. People in poor countries were still dying. It took another six years before prices came down. So that people in my country Uganda and others could also start to live. We buried many people. I buried many people. I raised orphans. Those people should not have died. The medicine was there. Now we're going to get a vaccine and we'll still have people dying. This is the thing; we are behind a campaign called the people's vaccine, trying to raise our voice that big pharma should not hoard intellectual property. Instead, they should share it and we have medicine for everybody at the same time.
Melissa Fleming 12:27
HIV AIDS does have a very personal meaning for you that you lost family members and friends. Can you tell me what happened?
Winnie Byanyima 12:36
Well, let me give you an example of one, at least one story that always pains me about this. I had a dear friend called Jane. Jane was a woman with a disability. She had polio in one, she was born with one arm, not really there. So she grew up with one arm. She overcame that disability and became a school teacher, became a leader in my community. She spoke, she challenged corruption in the local council. She was a role model.
Winnie Byanyima 13:10
Jane contracted HIV. And Jane found out quite quite late when she was beginning to get infections. She was put on treatment but her salary as a teacher could not pay for that treatment at that time, the price was about $10,000 a year. She needed about $1,000 every month for the tests and the treatment. Her salary as a teacher was like $60 a month.
Winnie Byanyima 13:41
Now she needed, every month about 1000. We looked for every way to pay for this. Month to month sometimes we would put out an appeal to my friends abroad. Sometimes she’d do a little business, we try to sell gold. We try to do all kinds of things to pay. We managed for a couple of months, some months we failed. Jane kept getting illness, illness, illness, Jane died. We bury Jane. She left a little baby who is now a university graduate. Angela. Now, Jane died exactly six months before the price came down from 10,000 a year to about $100 a year. Can you imagine? Six months had we managed Jane would be alive today. Her daughter Angela would have had a mom. She's now a young woman. She had a success story, her Auntie's raised her. But Jane hurt me so much that six months later everybody could get on treatment.
Melissa Fleming 15:01
That's, that's such an incredible example also, and I think should be told in the in light of the COVID-19 potential treatments and vaccines. We need to have them equitable and at best free.
Winnie Byanyima 15:16
We in Africa, many of us of my generation, we raised many orphans or family members, our sisters, our cousins. Because we had a lot of death, some of that death could have been avoided. Had there been a system that says, puts human lives before profits.
Melissa Fleming 15:40
Tell me about the orphans that you raised.
Winnie Byanyima 15:44
Well, there are many I mean, I'm no hero. This was something we did, we had to do in my country. We were one of the first countries, Uganda was one of the first countries to publicly acknowledge that we had a problem of HIV AIDS and for the government to come out and fight. So actually we were also one of the first countries to begin to turn it around through prevention measures because we're open about it. We didn't accept this taboo of not talking about this disease that's transmitted sexually. We spoke about it. We cautioned people, we told them how it's transmitted, how to prevent it. But people were dying in huge numbers. And my own family were affected. My brother died of HIV.
How old was he when he died?
Winnie Byanyima 16:42
My brother passed away in 2006. At that time, he was 46.
Melissa Fleming 16:52
So he lived with it for quite some time. I guess
Winnie Byanyima 16:55
He was first diagnosed in 1990. So he had been living with it for 16 years and maybe longer because he was diagnosed when he was beginning to fall ill. So we all experienced this and I connected the issue at a vague, personal level and I feel privileged to be working on it with so many skilled people, experienced people and building on huge achievements that have been made over the last 25 years.
Melissa Fleming 17:35
So let's really hope that this coronavirus doesn't, isn't a setback for all of the achievements in the rights of people living with AIDS and contracting AIDS. I found it when I was reading your CV remarkable to learn that you know, you weren't always somebody leading an international organisation Working in the UN or for Oxfam, but you started your career as an aeronautical engineer, the first woman in Uganda to do so. Why, why did you study aeronautics? And, and you didn't stay. So tell, tell us about that chapter in your life. That short chapter.
Winnie Byanyima 18:23
It's almost an accident I could say but not completely. I was raised in a small town in southern Uganda. My parents were quite unorthodox. My mother was an activist, a women's rights activist, a community activist. My father was also a political activist and they, they challenged me too. I have to go back a long time. You see I have a name, my name, my name is Karagwa. It means “the one who will inherit”. Now “the one who inherit” is a funny name for a second born who is a girl.
Winnie Byanyima 19:03
I was a girl, a second girl. But my father called me, the one who will inherit, which is not our tradition, we are patriarchal. And patrilineal is a boy who is supposed to inherit. So when I was growing up, I asked him, I said, Dad, am I the one who's going to take all your wealth? Because we're six children now three boys, three girls.
Winnie Byanyima 19:26
And he said, I called you my inheritor. Then I said to my Mom, Mom, did my dad mean that I'm going to be the one who inherits? She said, No, your dad was worried that I was never going to have a boy. And so he named you his fear. He feared not having a boy, he said well might be the girl will be the one to inherit. Because in our tradition, if you name your fear, then you fear doesn't happen. So when I said to my dad so you didn't want me, you wanted a boy, then you called me what you feared. He said, don't resent your mother, that's rubbish. I wanted you to be an inheritor. You are as good as a boy. So that was the beginning of a journey with my father, that I'm as good as a boy, I can do anything a boy can do. And the whole of my life was always around telling my Dad, did you want me really, or you wanted a boy? It was a game I played. But in that game, he affirmed me. And I was good at the sciences. And so he said, Well, I hope that you can be the best in your class. I was the best in the class.
Winnie Byanyima 20:43
Then the class said, if you are good in the sciences, you become an engineer. Oh, so I say I’ll be an engineer. And then the teacher said really, but you're a girl. But I said, they said I can do what a boy can! So it was always about testing and being equal with a boy. So I went for engineering, I really didn't have an interest in engineering to be honest. I was more interested in people, in helping people. I was interested in music, in art, but I wanted to do what boys can do. So eventually being, living in a country with conflict, we fell under a brutal dictator, Idi Amin and had to flee. And when I fled to England, and became a refugee there, I had the opportunity to apply for any type of engineering. So when I was looking through the book, there was electrical engineering, civil, mechanical, all those types were also in Uganda. But there was this one called aeronautical engineering. I didn't have a clue. I knew it was about airspace. But I thought, I'm a refugee. I need a scholarship. I really need to distinguish myself. Why don't I ask for something nobody has ever done. Nobody in Uganda has ever done. Maybe that way they have to give me a scholarship. So I applied for the kind of engineering not available in Uganda. No person I knew had ever done it in Uganda, because I knew that I'm desperate for a scholarship. And this scholarship will be our better chance if it's something unusual, and it worked. So here I am in Manchester University studying aeronautics. Every problem we are trying to solve seems to be on a weapon system. So it took two years, in my second year I had the courage and I ask the professor, why is it that every problem we are solving is on a weapon system, a missile? Then he said, What did you expect? Said I thought it is about air transport and flying people.
Winnie Byanyima 23:11
He said, Are you serious? Yeah I said. No Winnie, this research we do here is driven by the military industrial complex. What you see of civilian aircraft is just an offshoot. It is not the main. I tell you, I was in my second year, but I knew then then that I'm not going to stay here. I'm not going to be a researcher making weapons for the war between America and Russia. Remember it was the Cold War. I'm not a part of that. I'm not going to be a researcher in aeronautics. I knew it. But it was not a hard subject for me, I applied myself and got the degrees. But I knew I had to get out of it. And so my life took me out of it eventually.
Melissa Fleming 24:11
What? Just just one little, going back one bit. And then I just love to hear you know how you got out of it and what you did next. But what were the circumstances that forced you to flee as a political refugee?
That has really has shaped who I am, I'm a child of conflict. When I was,
probably by the time I was five years old, my country started falling apart. Independence had come, but it hadn't come the right way. And there was a coup in my country in 1966. And from then on, we had a civilian dictator then a military dictator. I became a teenager under military dictator. And it was so brutal when I was in school. People would come to collect girls from class in the middle of the day. And that the girl would disappear for about a week and come back with a shaved head. And that would mean that she would have gone home to bury her father because he has been killed or has disappeared and is assumed dead. And it's our culture to shave the hair when someone dies. And this, so people are disappearing, people are being killed and the dictator had something about controlling women too. So as a little girl, teenager, you imagine there were laws, he would wake, the dictator would wake up in the morning and say on radio from now on I’ve banned miniskirts and the danger was not even the banning of miniskirts, but that you don't even know, there’s no definition of the miniskirt. So if you happen to be wearing a dress that's one inch above the knee, or on the knee or six inches above the knee, any soldier could just say you have broken the law and take you off and even marry you. These soldiers were on the streets, they could rape, they could kill. There was no safety for us. He banned wigs. He banned lipstick. In the end, nobody had a list of what is banned and not banned. You just knew as a woman, you're not safe. If you stepped, If you are on a bus, a soldier could get you off and take you and your family would never see you again. Or they would find you in
Winnie Byanyima 26:44
a soldier's home. Now you are his wife, and you didn't have a choice about it. It was horrible. I grew angry. I was so angry against the dictatorship, I found safety in my parents home. And that was the only place, even school was not safe. So when I fled I mean, we had been at the university and we were attacked there. A set of circumstances that made me flee. Thousands of people were fleeing the dictatorship. So arriving in the UK, I knew that I have a chance to rebuild my life and always be grateful. Britain gave me a home and an NGO gave me a scholarship.
Melissa Fleming 27:40
What was your dad saying to you at the time? I assume he stayed back in Uganda or did your family flee?
Winnie Byanyima 27:47
He did and it is his courage that really inspired me because he could also have fled the country.
He had reason to because his life was also at risk. But he always felt that he said, I am staying right here. I'm staying with my community with my family. And I will share the risk, we will face the risk together. And he also told us not to surrender our rights, not to fight the dictator and get killed, but not ever to accept that our lives will be shaped by that and to stand for what is right in the most peaceful way but to be courageous and stand for what is right. That was also important for me, so by the time I left University was quite an activist. And instead of continuing to do a PhD, I had the opportunity to do my PhD, in the United States researching aeronautics, I chose to go back to Uganda to be part of an armed struggle against that regime. There was now another regime which was also an illegitimate and a dictatorship. So in going back to Uganda, I was entering a political struggle. I took a job with an airline company, but I worked secretly with a revolutionary group. So when we won the revolution, that's how I came to run for office. I found that my heart was calling me to be part of a struggle for democracy and human rights in my country.
Melissa Fleming 29:36
And is that where you met your husband?
Winnie Byanyima 29:39
We met in that struggle. I remember the first day I met him, we entered a camp, we were still still in the, in the war. And in this camp, we arrived at night, we were sleeping, there was a classroom structure that hadn't been completed, it just had a roof but no windows, no doors, nothing. And there were like 30 or 40 people all with their rucksacks lying on the floor. So they gave, gave me a sleeping bag. And I slept. And in the morning when I woke up and looked around, there were all men. Because we arrived at night and I got up and I didn't know what to do everybody had their task in the camp. And I remember he was the one who said to me, Winnie I think you should now go to that post and get your instructions.
Melissa Fleming 30:42
And I believe he's, he's still a politician and you have a son together.
Winnie Byanyima 30:48
We have a son. And yes, he's a medical doctor. We went on an operation somewhere and they had some terrible food poisoning. And he was someone and he came and treated me and I got better. So I got to know him a little then. And then our paths we separated, we were in an armed struggle. He was doing other things, I was doing other, We didn't get together until many years later. He's a political activist. He's in a political party, but I went into development.
Melissa Fleming 31:27
You were the first woman from the global south to run Oxfam. What led you to run such a big charity organisation, I think based in the UK, which led you back to where you had studied and were received as a refugee.
Winnie Byanyima 31:44
I at some point became unhappy. I was increasingly unhappy with the revolutionary movement we had led, it was becoming more and more a party of power and forgetting its revolutionary roots, the social justice course, and becoming more about staying in power. So I became a critical voice. And as my criticism increased, I found less and less space actually to speak within the very movement that I had created. So I chose the path of going into development to get out of the political space. It was too small for my social justice agenda. So I went into development. Oxfam I met Oxfam, the platform where I can be with activists all over the world, challenging inequality, challenging injustice, economic and social injustice. I was so excited.
Melissa Fleming 32:46
Well, it makes, it makes so perfect sense. And it seems that this social justice thread goes through all of your work and your entire career. Is there anything that you're optimistic about? I mean, it seems like everything is so so depressing all around us.
Winnie Byanyima 33:03
It's not depressing. These battles are worth fighting. And they are enjoyable. You know, if you know you're on the right side of justice, you are calling for justice for equality. There's joy in that, I get so much joy in that. Now in the health field where I am, I'm challenging inequalities in health. I'm saying that even if you bring the private sector into health, you cannot sell health. It is a contradiction. Health is a human right. The Coronavirus has brought it to the world's attention that the health of people is closely related to the growth of economies.
Winnie Byanyima 33:55
I think this was insufficiently understood. Until this virus came and crushed economies. Now there is a better understanding that the health of people and the health of economies are tightly linked. So we can do much more now, make more progress on health. Because this relationship is better understood. We should take hope from that and fight more on the issues of equality, reducing inequalities in health and giving everybody their right to health.
Melissa Fleming 34:32
I can feel your inspiration and your energy and your passion coming through. I feel very moved and very inspired to have had this conversation with you. So thank you so much.
Melissa thank you so much for the opportunity.
Thank you for listening to Awake at Night. We'll be back soon with more incredible and inspiring stories from people working to do some good in this world at a time of this devastating pandemic. To find out more about the series and the extraordinary people featured do visit un.org/awake-at-night. On Twitter. We're @UN. I'm @melissafleming. You can follow Winnie on @Winnie_Byanyima.
Subscribe to Awake at Night wherever you get your podcast and please take the time to review it really does make a difference. Thanks to my colleagues at the UN and to my producers Bethany Bell, and the team at Chalk and Blade, Laura Sheeter, Fatuma Khaireh and Alex Portfelix. The original music for this podcast was written and performed by Nadine Shaw, and produced by Ben Hillier. The sound design and additional music was by Pascal Wyse.