Inside Geneva
Inside Geneva is a podcast about global politics, humanitarian issues, and international aid, hosted by journalist Imogen Foulkes. It is produced by SWI swissinfo.ch, a multilingual international public service media company from Switzerland.
Inside Geneva
Summer profiles: unlocking treatment for neglected diseases
On Inside Geneva, we bring you part three of our summer profile series. This week we talk to a doctor looking for treatments for some of the world’s most neglected diseases.
“Neglect means that there are diseases that affect an important proportion of humanity but for which no new drugs have been developed because there is no money in it. Because they affect very poor populations in remote rural areas,” explains Olaf Valverde, clinical project leader at Drugs for Neglected Diseases (DNDi).
Valverde is the clinical lead on a project looking for treatments for sleeping sickness.
“It’s a disease caused by a small parasite that almost always kills if untreated. During the first half of the 20th century there were huge epidemics. It not only destroyed communities but also caused the desertification of entire regions of Africa,” he adds.
Cases of sleeping sickness with no effective treatment had been rising again until DNDi began combing medical trials – some abandoned by big drug companies as not profitable – for other options. They found one promising lead and began testing in the Democratic Republic of Congo (DRC).
“The motivation, concentration and interest shown by our doctors in the DRC who were developing the clinical trial, were totally amazing. For them it was an opportunity to serve their people. And that was absolutely beautiful,” says Valverde.
The drug worked and sleeping sickness is on the way to being eradicated.
“I think this is what I always wanted to do; to do something that could be helpful to others. And this is what satisfies me. Just seeing that people have opportunities.”
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This is Inside Geneva. I'm your host, imogen Foulkes, and this is a production from Swissinfo, the international public media company of Switzerland.
Speaker 3:In today's program, Neglect means that there are diseases that affect an important proportion of humanity but to which no new drugs have been developed because there could be no income, because they affect very poor populations in remote rural areas. The problem is when you apply only the benefits, when you generate an industry, and you don't apply the duties, when you forget that drugs are for improving the quality of life of people. That should be the main target. The motivation, the concentration and the interest Our doctors in the DSC in developing the clinical trial were totally amazing, amazing. For them it was an opportunity and it was an opportunity that they identified very clearly that it was to serve their people and that was absolutely beautiful and that's a real pleasure of doing these kind of things hello and welcome again to inside geneva, I'm imaging folks, and in today's program we've got part three of our series of summer profiles.
Speaker 2:I'm off to a lesser-known Geneva organization, tucked away just across from the United Nations. My guest today Olaf Valverde, clinical project leader at Drugs for Neglected Diseases, or DNDI. And what does this organization do? You're about to find out.
Speaker 4:Africa lies strategically between the Americas and Asia. It is a vast continent. It also is the home of 150 million people. It also is the home of 150 million people, but it is haunted everywhere by the grim specter of disease which constantly saps the strength of these people Leprosy, guinea, worm, tropical ulcer, kela azar and sleeping sickness and sleeping sickness.
Speaker 3:The NDI is an international organization. Its full name is Drugs for Neglected Diseases Initiative, and what we are trying is to develop medicines that are not mainstream in the sense that would never probably yield benefit. I mean profit. Of course it's economic profit, benefits, of course it will yield, but it's benefits for the health of the people. In that sense, most of our portfolio is concentrated into tropical diseases, tropical infectious or infectious diseases.
Speaker 2:Yes, how did you get into DNDI?
Speaker 3:Well, I have been always interested in international health and tropical medicines and when I completed my medical studies in Spain I'm of Spanish origin there was a very difficult work environment. There were many, many, many doctors at that time and not much positions and looking for a job. I found out almost by chance the possibility to go abroad and then I started working with MSF Switzerland in Guatemala in 1987.
Speaker 2:How was that? Was it what you expected?
Speaker 3:It was even better because I always enjoyed very much doing medicine with my hands, especially even more now. Modern medicine you don't touch the patient, you just ask for tests to be done or images to be taken and very often you miss the communication part of the medicine which I always liked Listening to the patient and looking at the patient and feeling the patient is something that brings a lot of information, and this is something that nowadays, in most medical activities, is somehow missed.
Speaker 2:And after MSF you went to DNDI. What motivated you to get involved in this particular organization?
Speaker 3:I ended with MSF and Medsanduimondo in Indonesia in 2008. I had been there for four years and then a person that I knew from the humanitarian life told me about a possibility for a consultancy here with Drugs for Neglected Diseases Initiative. Because of my knowledge of Southeast Asia, the position for sleeping sickness the disease caused by the bite of tsetse flies and this position was available and then I just presented myself and I got the post. That was since 2009 that I'm doing that.
Speaker 5:The World Health Organization has declared that sleeping sickness is a neglected tropical disease that should be eliminated as a public health problem by 2020.
Speaker 2:Tell me about neglected diseases and maybe, in particular, sleeping sickness, because it's something we don't here in Europe hear very much about. We don't here in Europe hear very much about.
Speaker 3:I think that we should start by thinking about the sense of the word neglect. Neglect means that there are diseases that affect an important proportion of humanity but to which no new drugs have been developed for a long time because there could be no income behind, especially because they affect very poor populations in remote rural areas which cannot simply purchase medicines, and in in the case of human African trypanosomiasis, which is the one of course I know best, there were some very toxic drugs that had been developed in the 1940s and nothing else until by chance in the 90s, there was another one that was very effective but very difficult to administer. It had to be given intravenously four times a day for two weeks, and you can imagine how difficult it is in a rural hospital, in a poor environment without electricity. Perhaps If you do four times a day, you need to administer at the middle of the night, and it was administered intravenously and you need technical expertise. So it was a good drug but complicated to use.
Speaker 3:So when I came here, we were already supporting a study that had started before, and in this study the idea was to reduce the number of doses of this complex drug, efluonitin, by combining with an oral drug and it worked, but still remained complex. And since 2009, we started clinical development of fexinidazole, which was much easier to administer it's one dose per day during ten days oral and that was the beginning of something that would become a real change in the treatment of sleeping sickness. The sleep disease, or the African human-african trypanosomiasis, is a parasitic infectious disease because it is transmitted by the CTC fly.
Speaker 1:The fly injects a parasite that circulates, goes into the blood, the lymph nodes and later on will go in the central nervous system and then eventually, if they don't have treatment, they will fall into a coma and die.
Speaker 2:How damaging is sleeping sickness to communities.
Speaker 3:Nowadays it's on the way of elimination. It's a disease caused by a small parasite that kills, almost always, even treated, and this disease is difficult to identify. During the first half of the 20th century and at the end of the 19th century there were huge epidemics that really had destruction, not only of the people that died but also affecting cattle and just decertifying regions, full regions of Africa. And there was during the colonial times, up to the 1960s more or less, there was a strong input, a bit military style, to reduce the disease, with teams going to the villages etc. That reduced the disease. And then, from the 1960s, with independence, the disease was not anymore a huge public health problem and the governments that were building their countries themselves did not have many means and they had to focus on other issues of health, and slowly, because this disease develops very slowly and chronically. This disease develops very slowly and chronically. So slowly the number of cases was increasing, the detection was not really functional and by the end of the 20th century it became a huge, huge problem in many countries.
Speaker 1:This patient has African trypanosomiasis, a disease better known by the name of sleeping sickness, Transmitted to man by the tsetse fly this fatal disease threatened some 60 million people, mainly in sub-Saharan Africa.
Speaker 3:And then again. From that moment on, it came down because of a decisive intervention led by W Cho with the support of Médecins Sans Frontières, and this intervention was also accompanied by us Drugs for Neglected Diseases Initiative developing medicines. So the situation nowadays is much more optimistic, in the sense that since 2018, less than 1,000 cases have been reported per year in the whole of Africa.
Speaker 2:So, with work from DNDi, a lot of progress has been made. Cases are way down. Dndi is not a pharmaceutical company, so explain for me how does the model work? What exactly do you do?
Speaker 3:The NDI is an international organisation, we are a foundation. We have been developed by a coalition from many of the affected countries, and Médecins Sans Frontières was behind the initiative, because we came from the Access to Essential Medicines campaign, from MSF, that had a leg concentrated into access for medicines for neglected diseases. We have developed a specific model for our specific problems, which is open, collaborative. The advantage of this possibility is that it's much cheaper because we are getting advantage of everything that comes up from academia, from other partners, from ourselves, and we share. We share successes, but also we share failures, and that helps others not to follow certain paths and to follow others. So this collaboration, this collaborative model, I think changes completely the approach, approach that you give when you do work in secrecy, because at the end, you expect a very important economic gain and, of course, this is what we call competition. We are not in competition, we are into collaboration, and this collaboration is something much more practical, quick and effective.
Speaker 5:At first you don't realise that you're sick, you just feel a bit tired.
Speaker 1:Then after a while you start getting headaches it's like malaria, and then, little by little, you get really confused eventually going mad and then finally dying.
Speaker 2:Let's take the example of sleeping sickness, then there are better treatments for it now, in part thanks to work by DNDI. What exactly is the process?
Speaker 3:Sleeping sickness is a good example because, as I said before, the drugs that were available were either very toxic or very difficult to administer and there had been no development in a long time. So what we did is is, once we found out, we define, together with the partners of course, the target product profile. Then we start to looking. Our first totally developed drug was fexinidazole. Fexinidazole is a drug of a specific group that we knew that had a certain impact on trypanosome, on sleeping sickness. Yes, indeed, when I first came here, it was a beautiful sentence, say we were looking for the low-hanging fruit, and the low-h hanging fruit was looked at through publications, what we call grey literature, which is reports that have not been published. And then, once we saw the publications and the grey literature, we even went on to discuss with the people that had done this work. More than 200 compounds were looked at and the vaccine that was found to be the most promising. That was a huge work, at least two years.
Speaker 2:So, if I understand this rightly, what you do is you're looking at drugs that are in the process or have been developed and for maybe something else, but looking at what indications there might be that they would be effective against sleeping sickness. So money has been invested into something not for sleeping sickness.
Speaker 3:Indeed, indeed that was the case. Höchst was developing fexinidazole as a very general antiparasitic drug and then, after initial tests, clinical studies, not with humans they decided at the top level, they decided they would not progress, they would not continue developing anti-parasitic diseases. That story has two paths. One is that we found this, this drug, and the other is that the company that had been developing that first was purchased by another company who at the end ended being part of Sanofi. So so we partnered with Sanofi and Sanofi. We have a very nice partnership where we bring the clinical development, we do everything in that sense, the relationship with the countries while the drug is in development, and then Sanofi takes care of the industrial development.
Speaker 1:In the Democratic Republic of Congo, 10-year-old Reagan is being treated for sleeping sickness.
Speaker 2:Just then, to take that one step on with the sleeping sickness which you had such success with, you spot a drug that was a kind of general anti-parasite, but it has indications that it could work against sleeping sickness, but it had never been tried. Do you run the medical trials, the clinical trials, or do you run that with a partner country or health sector?
Speaker 3:So directly. What we did was to prepare the study protocol, to work to orientate the target product profile and to find out the partners. It's important to work on the field, on the spot, because then it's the only place where you can really progress in a clinical trial. We started in the Democratic Republic of Congo. We have more than 90% of the cases in the last decades have come from there and in Democratic Republic of Congo we had a partnership with the government, with the Ministry of Health and, within the Ministry of Health, with the National Sleep and Sickness Control Program and from that program we discussed a lot before starting our clinical trials.
Speaker 3:Up to where should we go? And we went together to the hospitals where we were going to do the clinical trial and we had strong teams and something extremely beautiful that we found there the motivation, the concentration and the interest our doctors in the DSC could take in developing the clinical trial were totally amazing. Amazing for them. It was an opportunity and it was an opportunity that they identified very clearly that it was to serve their people and that was absolutely beautiful and that's a real pleasure of doing these kind of things.
Speaker 5:Today, thanks to a collaboration between the Drugs for Neglected Diseases Initiative and its partners, a new, improved sleeping sickness treatment is bringing hope. We cannot change the poverty situation and change them all, so what we try to do is develop a treatment that is adapted to these needs.
Speaker 2:So how open are the big pharmaceutical companies to working with you, sharing their research, sharing details about something they might have partially developed? Are they happy to work with you?
Speaker 3:In the sense that we are working in diseases that are not financially encouraging. That's easier. It's not always money what brings benefits. Also, you have image, and on top of the drugs that brings money for the shareholders, you have drugs that brings image for the company.
Speaker 2:So it's a reputational profit.
Speaker 3:That's one. On the other hand, there are some tools that have been organized by governments or by international entities, regulatory organizations, the Food and Drug Administration of the US. They give a voucher. If you develop a medicine for a neglected disease, you receive a voucher which, to the FDA, doesn't cost anything.
Speaker 3:But, with this voucher you can choose to apply a quick review for another medicine and you can imagine that if you have a blockbuster medicine that can be sold a lot for a high price, the company, if they gain six months, this means a lot of money, you see.
Speaker 2:That's quite clever. So in the US, if you develop something for neglected diseases, the authorities will fast-track your profit-making, cholesterol-busting or blood pressure-reducing Exactly. Well, that must be quite heartening to you that governments are actually seeing the value of this. What other neglected diseases are crying out for your support or the kind of solutions you found for sleeping sickness?
Speaker 3:In our case, the biggest one we have in our portfolio is leishmaniasis. Leishmaniasis is Kalazar. Kalazar is a disease that affects the organs, internal organs that can kill, affects especially children. It's also transmitted by a bite of a fly. East Africa we have several countries in East Africa where Calasar is very important. In South America.
Speaker 3:So, still this is more complicated than sleeping sickness. First, because sleeping sickness the parasite is in the blood but in the plasma outside the cells Chagas disease, which is American trypanosomiasis. They are inside, the cells, are intracellular, so treatment is more difficult to arrive.
Speaker 2:On a broader level, then you've talked about that. You have a good partnership with a pharmaceutical company that governments are supportive. But if we look at the financial model of development of pharmaceuticals, do you find this frustrating? Billions going into new treatments when there are already quite effective treatments. I'm thinking, you know, for heart disease, for example, or blood pressure, this kind of thing and yet there's leishmaniasis or sleeping sickness. It's just because poor people get it, so there's no investment in it.
Speaker 3:Well, you are describing capitalism, isn't it? That's what you are describing. Either we break with it or we accept it, and this is where we are. This is the world we live in. The question also is whether we can make neglected diseases attractive to this model, because, talking about general economics or economy of health, one thing that I was taught was that market economy is not perfect. So I'm not saying that that market should not exist, and I think that market is something that that makes people relate, but the problem is when you apply only the benefits, when you generate an industry and you don't apply the duties, when you forget that drugs are for improving the quality of life of people. That should be the main target target.
Speaker 2:Just describe to me, though, how does it feel when you realize we've actually found something for sleeping sickness that will work in the parts of the world where people get it. It's easier to take and it works.
Speaker 3:How do I feel I am happy for them. I think this is what I always wanted to do, is to do something that could be helpful for others, and this is what satisfies me just seeing that people have opportunities. If someone has a neglected disease, which sometimes is inevitable, that you could at least choose the right treatment. If you have no choice, then you can die. Now we have in Europe some alerts in the pharmaceutical world because some medicines are not available and it makes a lot of noise are not available and it makes a lot of noise. So imagine what happens when you had tens of thousands of people with a disease and you don't have any medicine available.
Speaker 2:Does that make you angry? I mean, health is such an unequal business.
Speaker 3:I tend not to be angry, so it doesn't. No, I'm not angry, I just observe. And then I say, well, this is something that is. There is a dark hole there. So if I can do something to put some light inside, I never feel happy or satisfied because what I did, because I am totally conscious that what I did was part of a group, is the team, is the partnership, and this is what makes me happy to be with the others and to participate with the others and that brings us to the end of this edition of inside geneva.
Speaker 2:My thanks to olaf valverde and all at drugs for neglected diseases, not just for their time with me, but for the invaluable work they do. Talking to olaf made think. How would we feel here in comfortable Geneva if we were suffering from a possibly fatal disease and we couldn't get safe, effective treatment, even though it was possible? That's the situation for millions of people, many of them children, in the global south, affected by diseases we could treat, but we haven't invested in A reminder. You've been listening to Inside Geneva, a Swissinfo production. You can email us on insidegeneva at swissinfoch and subscribe to us and review us wherever you get your podcasts. Check out our previous episodes how the International Red Cross unites prisoners of war with their families, or why survivors of human rights violations turn to the UN in Geneva for justice. I'm Imogen Folks. Thanks again for listening.
