Decoding our DNA
This is the code an in depth. Look at one new story from Africa every week. But costs from the BBC World Service are supported by advertising. A K. in in Garard macadear. Mike this is. A twenty five year old Kenyon, who lives in Nairobi. Saudi describes herself as charming. Enters. It. Alone a loner. I kept to myself a lot. And for the most part says life is like that old. Many twentysomethings just thinks she's passionate about I. Love reading a Red Alert I write. What sort of things do you write at eight plans? And neath agriculture towns whatever catch things. She worries about making money dishonest double job, AAC something that can give me an income every month. And be contented with that. But when Sally was nine, she had what she calls a crisis. I was in school and I started feeling a lot of pain. I was feeling pain in my fit and my knees and My wrist ever. Mae West Hat Maybach Barkat. So I couldn't feed. I couldn't stand including dried. I stuck into hospital. That is when it came to know what really I was suffering from. This! He's the cone and World Service original podcast welcome. I'm Kim Jagai Nitsa and every week we. Through the continent for stories, lap matter and unpick a single. This is the CO he need. The. The COMB! In this episode, Sally's story, and what her illness about the disadvantage, black Africans face when it comes to drug treatments, because they only represent a tiny percentage of the genetic samples, useful pharmaceutical research, plus how Nigerian company trying to fix things? Let's go back to Saudi. Who at the time had just been diagnosed? And what were you then told that day have fecal fellow Mimea. And? Did you know anything about sickle cell anemia? Did? Not Did you know of anyone with it? No and you were told that you have this disease. How did you react? I would thad. I Live I don't know I felt really bad like why me I. It was it was mortifying. Why was it mortifying because I couldn't be no more that I told myself like. I not like the rest I. Am way only different. I am different. Innovated way. And how did these differences play out well? It changed my life. I, Gotten classes. I didn't go talk. Often like my friends t, they couldn't play with them. So that will be like you see your friends going to play. Now? I! Can because my fit will hard. That pain that Sally mentioned there that caused her feet hurt so much she couldn't go out to play with. A friends is due to a faulty gene that affects how red blood cells develop. That cells on normally round shape, but with sickle cell the shape becomes crescent shape like an old farm tool called a sickle. And that shape makes it hard for blood cells to through the blood vessels, the cells end up inside connecting and sometimes clotting. This results in extreme pain, and it can cause damage to bones, muscles and organs. Is? It mainly joints that ache. What are the characteristics of an sickle cell as they manifest the new sally? While it's not only the joined it's it's everything even the head. You have a headache very splitting headache. And fool really tired and fatigued, okay? Well Sally I. Ask you to record a diary to capture how you're feeling and you very kindly obliged. So we're GONNA. Hear this first entry and this Wednesday afternoon. Eric filling stiff. Only neck and laying hand inflammation. Sometimes I, I can't wake up because. My knees are so in my hands, can't really? Do Anything. They can't even hold a cup, but only had to get up to. As the day progressed, and the sun came out. I started feeling a little bit better around two three hours, okay. A little bit tired, but okay I didn't get any complications today, but from the business in the morning I don't make it may hand me knees. Sally says one of the hardest part of this disease is trying to figure out the future especially when it comes to relationships and having children. PLO when you fat thinking of July. Only guard. Have! I can do whatever people do. I can guard on Fridays. I even be normal relationship like other people. What is wrong with me? You've kind of likely get. When you say you copy a relationship. Why can't you sally? Type Eight S and I got. a normal pipeline. Who is a? Through if we come together, what sal is saying here is that if she meets someone who also carries the sickle cell trait, there is a one in four chance that child the couple will have will have sickle cell disease. While the disease itself is fairly rare for more people could be carrying the trait without knowing. And this means there's a risk that their child would also carry the disease in some countries like. Local governments have made type tests. Legal requirements before a couple can marry in Nigeria premarital sickle cell screening has been adopted by many churches. Who then either discourage you? From getting married or refuse to conduct an altogether. This idea that you might not be able to have the relationship that you want I. Mean how how does that make you feel sally? I think. I've come to accept it. Lake. It's not. It's not a much. When somebody can live income if they don't then I am good too long making money. An estimated three hundred thousand babies born with sickle cell disease each year. Seventy five percent of those are in Africa. The disease accounts for six percent of childhood debts on the continent, those numbers while big on nothing compared to diseases like meningitis malaria, which account for hundreds of thousands of deaths each year, but here's the thing. Researchers know what causes sickle cell disease. They've known it for over five decades yet. Still there's no cure. Currently the only treatment that might offer a potential cure is procedure called stem cell transplant, which is expensive and risky, so it's really done some say the reason why these no cure is because it's just one of those diseases that's just not seen as urgent and so it doesn't attract as much attention and funding. Bill but there's also something else in the way of finding q now to understand that we have to rewind the clock and go back to nineteen ninety. A lot happened that year. Nelson Mandela was released from prison. Algeria hosted and won the Africa Cup of Nations for the first time. That, year was also winning, ambitious product began the biggest project ever undertaken in biology, the most revealing step yet towards understanding our own species, the dawning of a new age of medicine. It was called the human genome. Project, Here's how Dr. In American scientists described the project. This is an ambitious. Some would say audacious effort to try to understand our own instruction book. The instruction book for Human Biology. Written, in the language of DNA, which is a very simple language with only four letters in its alphabet, but stretches to a book of about three billion of these. They was a slow. This instruction book the Human Reference Genome as it was being cooled was missing. Millions of DNA sequences that are found only in Africans. When you look at genetic studies, they rely almost entirely on DNA from people of European descent, the lack of African Danny connects us back to Saudi because it means that it's unlikely accused will be found for conditions like sickle cell disease, which affect primarily African populations. So what can be done? Hello I can hear you clearly. Can you hear me if he could start by introducing yourself and what you do? My Name is Sarah Multiple Dr. Modibo has been working on exactly this problem for years studied medicines I'm a clinician and then I specialized in clinical microbiology I've always been interested in science and also interested in the world of microbes and so even. Even when I went into medicine at always wanted to specialize in microbiology, and so when I finished I was very interested. In different types of bacteria, viruses, Fungi Modibo is clearly someone who is passionate about who work. And when we spoke, it was in the middle of lockdown in Lagos I almost how it was affecting her. This is affected everyone on different skills. Scientists would always been expecting that they would be a lot more emerging infectious diseases coming up, and there's been a lot of talk unpreparedness for the next fire virus outbreak when we had the saw the MAS are. Going on and I. Don't think anybody was quite prepared. For this significant outbreak that we've had on the widespread effect, it has had on the economy on social living on on on the on humans, as it may be so I find this very frightening that have a two year old. He just turned three, and if I'm going out because sometimes. Sometimes I do need to go out because of the nature of my work. He calls me back. And he asked me for my masks and make love, and he who is cautions me to be careful and I find that for three year old to to be doing that than we understand you know the level that this has had the effect his Hatay families. And at the Medieval, is currently the vice president of nine opperations at an ambitious startup called fifty four gene. The companies based in Lagos and they are mission to build the world's largest Pan African bio bank, basically a bank for saliva blood tissue to use and research so primarily we wanted to assist in improving the genomics data for Africans, because as we know less than three percent of global genome estates that is used for Genome Wide Association. Studies is from African descent. It's worth driving that point again. In pharmaceutical research around the world African. DNA only makes up a miniscule amount less than three percent. When we're trying to figure out the nature of the human genome, which is DNA that makes up every human being right usually studies cold four, but they're usually done in Caucasian populations. Where they'll provide saliva. Blood samples so that we can look at the genetic makeup of a human being and that genetic makeup. If you could map it, you probably find answers to some. Diseases that we have that we don't have cures for. When you're looking at diagnostics for test sometimes, you need to have that data to able to know what the appropriate test to use. When you're looking drug development, you'd need to have that data to know what drug would work best for certain population, there are certain diseases that are more common common in Africa and in West. Africa particularly for instance the sickle cell disease, so if we don't have the data of the genetic makeup of Africans, then you can't begin to answer some of these questions. But why has there been such little? African genomic data available. What's behind that that's? Very low percentage. That's a very complex. Question, but I'll try to fight as best as I can so one thing is ethics surrounding research data on also the benefit. And avoiding of exploitation, so there's a lot of things that have gone on in research on the African continent that have led to exploitation, and so people are very wary of research. Going on an example, I'll give you is that if for instance, one individual in a community provides a sample and then twenty thirty or forty down nine that happens to be part of a major medical breakthrough. Breakthrough thinking through. How does that benefit that individual, which is nearly impossible Okay, but how does it benefit the wider community on how doing show that you know it? It does benefit them, and it does doesn't get you know by time it's. It's a drug somewhere far off in the United States, so way way may be than the individuals that were part and parcel of this research I've forgotten. And that concern about exploitation is legitimate. Just last year, a major genome research center in the UK was accused of commercializing a gene chip without proper legal agreements with partner institutions, and the consent of the hundreds of African people whose donate DNA was used to develop the chip to get its DNA samples. Fifty four gene is working with hospitals across Nigeria targeting patients with cardiovascular disease, cancer, metabolic conditions and sickle zone where they are. Ongoing studies are institutions. The company works with research assistants to recruit volunteers obtain the consent and collect blood tumor tissue in saliva, samples. Fifty four gene is not the only organization trying to remedy the lack of African genetic diversity. There are other organizations and institutions working on this to. You for gene is a for profit entity. How then do you balance the fact that you have to make profits with fists idea of advancing health in Africa? Can those to be balanced. Oh. Yes, they can, and that's where the benefit sharing model would come into play, and sometimes I don't like to see as a for profit in that instance, but you need funding to put in these innovations in place and the infrastructure in place so sometimes the payment is not really for profit, but really to pay for the services for the infrastructure for the logistics of collecting the samples so so all. All of that would have to be put into place and I feel like that's why healthcare has not really been funded, because there's this debate about for profit and commercializing by the same time, if we don't begin to think of how we can, actually in a very ethical manner, have some profit, then we won't be able to sustain these genetic solutions which are very expensive to put on. In terms of infrastructure DOXA multiple people says the pandemic has highlighted the importance of the work. They're doing and why Africa really needs to be part of that conversation. If the vaccine or drug is found to be working for covid nineteen, for instance, if we haven't been part of that research on the scientific advisory for that, then before we are able to make decisions that would be able to benefit the African continent to take several years, so we want to be able to leverage this to provide this data and to improve health care solutions for the African population. And now back to Sally in. The young woman living with sickle cell, disease. The is known as yet for sickle cell anemia How do you deal with that I don? I, don't really try to think about it so often because I mean. You're like this. That's your fate, so you have to accept it. And you have to do everything possible to make your life better. No one else will come and try to leave. You earn or do anything. It's outpour new to help yourself out of it. Sou- I think I'm resigned with like I. don't care, I don't care anymore. The way I accepted myself and I'm taking kill myself. What are your hopes for the future? I wanted to be a journalist. Mice, communication several been dreaming, being employed baby. We see I want to comfortable. But financially. And physically here, no, there's no cure but be or clearly. I just wanted to be fine I am. I want to be no more. Thanks for listening to the. podcast from the. Focus in Africa family. Some of you got in touch with us about our graduation episode judging from the Conversation Online. Many of you could relate to what NA prints felicia going through. One audela sent us this voicemail. Hi My name is Laurie I'm a twenty three year old from Zimbabwe. The irony of being turned in Zimbabwe is that pandemic northern dynamic student life is full of uncertainties because of the poor economic situation, lecturers and professors, time and time again strike. Which means four year study program may actually take six years life after graduation very hard, which is exactly what motivated me to reach out to? My peers implanted virtual talk for Zimbabwean graduates class of twenty twenty. Our goal is to pack, hope, sight, inspiration, and start conversations, but military graduates. Thanks please do keep those coming. We want to tell the stories that you want to hear now. You might have a specific story in mind. What could be a general topic idea citizen email at the comb at BBC to call. We'll drop us a brief voice memo on WHATSAPP at class, four, four, zero, seven, five, two, one, six, double, six, zero, zero eight. This episode was produced by Mary Good Goodhart. The sound design was by Marco or IANTO. The music you're listening to was produced by Eric Joker. Artwork was created by Fred Martin Piece Lynch. Is Our editor and Kim China?