Neglected Tropical Diseases: A potential roadmap forward | Dr. Borna Nyaoke Anoke

Laurence Ivil, Global Perspectives Initiative
Over the last two years, a public health crisis has been at the forefront of our news. However, other health emergencies continue to receive very little or no attention at all. More than 1 billion people globally are affected by neglected tropical diseases or ntds, a grouping of diseases which is made up of 20 different conditions, some more known such as dengue or rabies, and some much less known. In most cases, these diseases occur in tropical areas and therefore often developing countries, and they disproportionately affect women and children. Ntds rarely receive as much attention when it comes to global health policies or funding in comparison to, for example, HIV or malaria. And the consequences of this neglect have been devastating on a health, social and economic level. The importance of understanding neglected tropical diseases and a potential roadmap forward is our topic today. Welcome to the Africa Roundtable podcast. My name is Laurence Ivil and I'll be your host. To talk to us today about this important topic is Dr. Borna Nyaoke Anoke. Dr. Borna is a Kenyan physician and a senior project manager for clinical trials related to Ntds at the Drugs for Neglected Diseases Initiative. Additionally, she works on COVID 19 and antibiotic research. She was named in Business Daily's Africa Top 40 Under 40 Women is a renowned public health expert and founder of the Hema Foundation, a Nairobi based NGO working on physical and mental health for marginalized groups and environmental health.

Dr. Borna Nyaoke Anoke
Thank you, Laurence.

Laurence Ivil, Global Perspectives Initiative
Let's begin by providing a bit of background for our listeners. When we talk about neglected tropical diseases, what do we mean by neglected exactly? And what makes Ntds such an important topic?

Dr. Borna Nyaoke Anoke
So when you talk about neglected within the scientific or medical space, we tend to talk about diseases that are not at the forefront. As you rightly mentioned, we tend to concentrate quite a bit on the shiny diseases that are there, such as HIV, COVID currently, things like Ebola. So you find quite a lot of funding, quite a lot of international press attention is on them. So when you talk about neglected, there are the diseases we barely talk about, we do not see them as often as the other diseases within our clinical practice, or we do not have the same kind of attention in short. But then at DNDI we add, apart from it being a neglected disease, we add the population to it. Because, of course, if you have a group of people that we are not concentrating on that we have put aside whatever diseases they might have would also be neglected with them. And what we have seen with neglected tropical diseases, it tends to affect the poor, or the very poor, the most impoverished populations, populations that even our ministries of health or even our governmental facilities or our non-governmental organizations do not really pay attention to.

Laurence Ivil, Global Perspectives Initiative
I think that when it comes to this idea of a disease that disproportionately affects women and children, you know, for our listeners, perhaps you'd have an anecdote or something that can draw a bit more attention to the actual on the ground impact of this form of neglect.

Dr. Borna Nyaoke Anoke
Yes. One of them would be mycetoma. That is one of the neglected tropical diseases. i'm quite passionate about. So this can be either a bacterial or a fungal infection that usually just starts with a small, either pinprick or a small incision on your body, which now develops into a larger wound. So for the bacterial form, this can easily be treated with our normal antibiotics. And we usually have treatment or cure rates, which are quite high above 80%, 90%. Now, the fungal form of the mycetoma, this affects what we call the mycetoma belt. This is an area around the equator from Sudan, India, Brazil that is usually affected by this mostly. So you'll find quite a number of countries, or even here in Kenya, if you talk to our physicians, they are not very well aware of mycetoma. If you start going into the rural areas such as Wad Onsa, which is almost 6 hours away of Khartoum, you find villages where you find most of the population are amputated. And these are people who have had to make makeshift ways to be able to actually move around. And you see the men walking around and they have amputated legs and you find them with the walkers or you'll find them with the boots, but you won't see the women and the children around. And because of the stigma that is associated with it. We've already mentioned that this is really affecting the poor of the poor. These are people who are reliant on subsistence farming. These are people who are reliant on working with their hands or working in the fields. So by the time you're amputating their leg or amputating their hand, you've already reduced their social value within this particular place. For the women, apart from reducing their social value, both as providing an economic input, you also reduce their aesthetic contribution, if I might say, within the society. So these women tend to be hidden. You'll find that in places the woman has not left her hut or her house in 5 to 10 years. So she becomes stigmatised. She becomes ostracized because they are deemed as not providing a huge value to the society. So this woman, of course, does not get married because she's not able to find a husband. She's not able to have children. At the same time, she's being taken care of by her family, which is another economic burden to them. Then you also find that after her parents maybe pass away, she does not have anyone else to be able to take care of them. For the children, we've also seen quite the same happening because treatment for mycetoma, especially the fungal type, involves you taking medication - two tablets twice a day - every single day for a period of one year, and you still have less than a 50% chance of actually getting cured. So if you find some parents who are taking their children to school and they have to pay for uniforms or tuition or just the transport for the child to go to school, if you add this extra financial burden of having to pay for pills then they remove the school for them. So for them they have to stay at home and they will find other things for the child to do. So if they're not going to school, they are also stigmatised within the society. This also reduces the quality of life for these children and they are not able to actually move on in life as their peers would.

Laurence Ivil, Global Perspectives Initiative
I mean you sound understandably very passionate about the topic, but as you also mentioned, a lot of local physicians are quite unfamiliar with these diseases. I mean, from your experience, what is the the single barrier for local doctors to have to learning about or understanding these diseases?

Dr. Borna Nyaoke Anoke
So the first thing is the poverty and most of where these patients are located, because in sub-Saharan Africa, unfortunately, most of the physicians are located within the urban areas and we have very few physicians in the rural areas. This is, first of all, occasion to the fact that we have a very poor doctor to patient ratio, almost 1 to 1000 in some areas in sub-Saharan Africa. And also apart from that is the fact that most of these very rural areas where we find most of our poor of the poor, they do not have access to health care services. So, and as I mentioned, with lack of education also in these areas, a lot of ignorance does not allow them to seek for health care facilities because, first of all, they are not available. And second of all, they do not term it as a health care problem. They would go to their traditional healers. They would think of it as a form of curse that has actually been put on to the particular village or to a particular family. So their first instinct is not to seek a doctor. So they will not travel all the way to Khartoum. They will not travel all the way to Nairobi to be able to seek that. So the physicians there will not, first of all, have access to these patients. So it needs to be a concerted effort for all of these neglected tropical diseases, from the Ministry of Health, from our health care practitioners and also from our people, just to have a bit more clearer understanding of these diseases so that in the same way, like malaria has been talked about for so long, that anybody, even within the village, within the rural area, starts having chills, starts having fevers, they will start thinking of malaria and they will think that I have to go to this hospital and seek treatment. That is the same way I think neglected tropical diseases need to be talked about, so that we are able to understand. And the same way we have guidelines for treatment of malaria, guidelines for treatment of HIV, guidelines for treatment of typhoid, we should also have those guidelines for the treatment of neglected tropical diseases.

Laurence Ivil, Global Perspectives Initiative
And obviously, in recent times we've seen the Ebola outbreak and then, of course, the big one now for the global international community, COVID 19. Do you think the COVID 19 pandemic was helpful for highlighting health challenges in the global South? Have you seen more funds, attention, or has it achieved the opposite?

Dr. Borna Nyaoke Anoke
So actually for both, because, of course, it highlighted something that we all knew, but we were not paying attention. And this was on the health care services, especially in the developing world. Because we all knew that the health care system was not meeting, if I may say, the standards, or did not have the requisite for dealing with the health care issues that we are having. But with COVID, we were able to see places like India, even in the global north, the fact that they were overwhelmed with the cases from COVID. That was part of the fears that we were having in the Global South, because if you are looking at Italy, if you're looking at the USA and you're seeing patients seated outside because there are not enough health care facilities to absorb them, then you come down here and you think most of our referral centers have less than ten ICU beds. If we are to look at the critical care nurses, if we are to look at the ICU doctors, we barely have the resources. So if these numbers were to hit us, as it was hitting most of the other countries, what would happen to us? And this actually brought quite a bit of activity by our ministries of health and quite a number of institutions just to be able to ramp up some of their activities, such as setting up the intensive care units, having training done to ensure that we have the critical care health care professionals and that we just had the facilities available to be able to work on that, and also quite a lot of training. So this became an advantage because we are able to use some of these facilities, the infrastructural and also the training of the new people to be able to put them in other diseases. Because what we have seen, especially here in Kenya, we had quite a number of nurses and community health workers trained. We had quite a number of new [hospital] wings that had been built to be able to absorb the COVID. Then the wave went down. We had less than 3% positivity rates in Kenya for quite a number of months. So of course these facilities had to be used. Then we saw this being transferred to other diseases that did not have this kind of space before. Now the disadvantage of it is we know and NTD has had quite low funding for very many years, and because, as I mentioned, neglected tropical diseases are not very flashy. But with COVID we saw that the funding is available, but the funding is only available to what people deem as important to them, to what affects them directly. So it also showed us that we would need to be able to position neglected tropical diseases in a certain way to make it known that even as we think of it not affecting us directly, if we're talking about the disability adjusted life years lost for these people, they have a huge impact on the economy as a whole. So those are some of the discussions that have come in.

Laurence Ivil, Global Perspectives Initiative
You know, the listeners of this particular podcast will be quite interested in the relationship that Europe has around this topic. How would you describe the relationship between African and European nations when it comes to pharmaceutical research and specifically to Ntds? And, you know, where is there room for improvement here?

Dr. Borna Nyaoke Anoke
So there is quite a bit of work that is already being done in conjunction with a lot of European countries and also with a lot of European governments. We have been quite fortunate with DnDI to be working with donors such as the BMBF from Germany. We are also working with UK Aid, and our headquarters are in Geneva. So the Canton de Geneve has been very influential in a lot of the work that we're doing in neglected tropical diseases. So we have quite a lot of European association with most of the work that we are doing. Apart from the donor funding that is being provided, just also in terms of ensuring some of our activities that are being done on the ground are being supported 

Laurence Ivil, Global Perspectives Initiative
So you are talking quite a bit about the positive collaborations there, and I think it's really important to highlight that. However, one thing that has come out of the COVID 19 outbreak is this inequality when it comes to intellectual property rights and manufacturing and the sharing of information and material. And, you know, perhaps you could speak a little bit more about your collaboration with manufacturers. How does that work with Ntds?

Dr. Borna Nyaoke Anoke
So DnDI works, let me talk about it specifically, how we work. We work in terms of partnerships, in terms of we talk about ourselves as more of a if I may say, virtual organisation, in terms of we do not conduct the clinical trials by ourselves. We do not produce the molecules by ourselves, we do not provide the funding by ourselves. So what we do is, as I mentioned, all these organisations, we are able to go to them and we are able to present this case and get the funding to be able to conduct these trials. Then we go now to our partners who can be pharmaceutical partners, who can be the manufacturing partners, who are able to provide this. And then we work with our clinical trial sites, which are mostly located in our LMICs, where they conduct the clinical trials. So by the time we go into this partnership, everyone is aware of their contribution to this particular disease so that we are able to actually work on the clinical trial. We are able to have this particular product that has been produced to work as a treatment for the disease, and we're able to register it. By the time we go into the registration, the pharmaceutical company or the manufacturing plant knows we are working on this particular clinical trial to be able to provide this particular treatment to the people that it is affecting. So it would not apply to many of the other research work or diseases that have been working, where we have quite a bit of push back or pull in terms of registration and who exactly owns the copyrights to this particular drug and all that. By the time we actually conduct our clinical trials, we are very well aware that this treatment is going to be provided to these particular patients, at a particular price. And we know that even if the rights of the drug belong to a particular company, or to a particular manufacturer, that they will be able to provide these drugs to these countries for a specific period of time.

Laurence Ivil, Global Perspectives Initiative
And elaborating on that a little bit further, you have many years of work now when it comes to research - involvement in HIV, COVID and antibiotic research. You know, let's talk a little bit about affordability. What do you think are the biggest challenges in researching affordable remedies? And is there a more appropriate way to deliver affordable medicine?

Dr. Borna Nyaoke Anoke
So the model that I just explained is what we are trying to use to be able to actually ensure that these medicines, that we are working on or developing, are affordable. Because as you are aware, drug development takes quite a bit of time before preclinical, clinical, working through the registration process. These are activities that can take between five to even 15 years for most pharmaceutical companies. So for these pharmaceutical companies, as you've seen with COVID, you will need quite a number of resources to be able to make this work. You will need quite a number of resources - meaning personnel working on the molecule itself and everything. This makes the product very expensive, then it makes it unaffordable to the people who actually needed them. Because we've talked about this affecting, NTDs affecting the poor of the poor. So with DNDIs work we are reducing each bit of work that they have to do. You have this molecule as a pharmaceutical company. We will do the clinical trial for you. We will work through the registration process for you, of course, in collaboration with you and the other teams. This greatly affects the price at the end when we are able to register the drug. Making sure that by the time we have a drug that is out there, the people we are working on to actually produce the drug are able to afford it in the end. So that's why we work with the pharmaceutical companies as partners. That's why we work with the ministries of health to ensure that even by the time we have that drug registered, we are able to actually pull it back and have it adopted in their guidelines for treatment of this particular disease. We work a lot with the World Health Organization to ensure that these medicines are within their essential medicines list. And also we work a lot with a lot of policy and advocacy teams to be able to push for these drugs, to be able to be seen as the right treatment that should be used in most of these places. So this allows for affordability and also in most importantly, access of these drugs to those who need it the most.

Laurence Ivil, Global Perspectives Initiative
And focusing specifically on funding here and referring once again to the COVID 19 pandemic. You know, have you, as an organization, witnessed any form of, let's call disease fatigue when it comes to funding? Or is it the opposite?

Dr. Borna Nyaoke Anoke
We actually talk about donor fatigue quite a lot, and it tends to happen because when you keep on talking about the same thing, diseases all the time, and as I mentioned, for drug development or even vaccine development, some of these things take quite a long time. So if we come to you at this time and tell you about the plight of this leishmaniasis or the plight of lymphatic filariasis, and ten years later, we come back to you with the same plight, then donors tend to want to feel that their money is being used properly. So just the fact that it took 10 to 15 years doesn't mean it wasn't used properly. But most people tend to want a return to their investments, even though it's not financial, a bit faster. And what we were able to see with COVID, this allowed for it to happen because we then left within a year you could have vaccines come out. So it makes the donors easier for them to actually spend their money on particular initiatives because they are seeing the outputs coming out as fast as possible. So neglected tropical diseases and other diseases it takes much longer. So donor fatigue is something that we see quite common. And also within 2020, 2021, we saw a lot of our donors and most of the fundraising team were able to relate to this was a lot of the funds were now being diverted to what the donors felt was going to provide an output quite fast because for them they're thinking this is COVID, it's affecting us directly, and you're telling us you'll give us a vaccine within one year? While DNDI and other organisations are coming to you and telling you we want the similar amount of money, but we are going to show you results within the next 7 to 10 years. And it's a disease that is not affecting you and it is not affecting us directly. But there are some people somewhere that it is affecting them. So it's, it's, it's quite a lot from within.

Laurence Ivil, Global Perspectives Initiative
Although these particular diseases may not be affecting a number of countries in the global north. We have seen that Germany has recently signed the Kigali Declaration in January, signaling an ambition or certainly more attention towards Ntds. Perhaps you could speak a little bit about the importance of the Kigali Declaration, what that means for the field. And also, if you could offer one piece of advice for German and European policy makers in Europe around this what would it be?

Dr. Borna Nyaoke Anoke
So for us, the fact that we are first of all talking about neglected tropical diseases is a huge win for us. And the fact that the heads of state will be launching and talking about the Kigali Declaration on Ntds, we are seeing it as a very high level spotlight to Ntds because the declaration will will be able to mobilize political and also social commitment, which is part of the sustainable development goals that we have on NTDS. And my take on this or my advice on this would be I do hope that we do not lose the momentum that has already been created at this particular time, because it's easier for NGOs, it's easier for all these policy and advocacy teams to be talking about the work that we need to do on Ntds. But without the political commitment that is required from most of these governments, then we are not able to achieve a lot. 

Laurence Ivil, Global Perspectives Initiative
Brilliant. Thank you so much for your time today. I think that's all we've got time for Dr. Borna. It's been fascinating to listen to you and on behalf of everyone at GPI. Thank you.