DNDi: 20 years of delivering treatments for neglected patients
It is often said that Innovation and Access are two sides to the same coin when it comes to ensuring that people in developing countries are able to get the healthcare products they need to stay alive and well. And it is through the lens of these two complementary activities that we can understand why MSF first set up the Access Campaign in 1999, and then, four years later in 2003, DNDi — the Drugs for Neglected Diseases initiative. Both entities set out to overcome the barriers to innovation and access that stop people getting the medicines they need in the under-resourced countries where MSF works and beyond.
Over 20 years, the relationship between MSF and DNDi has remained close, with a stream of people moving between the two organisations, working hand in glove to deliver better treatment for people in low- and middle-income countries.
On the occasion of DNDi’s 20th anniversary, we sat down with two leading lights — Julien Potet, the Access Campaign’s Neglected Tropical Diseases Policy Advisor, and Joelle Tanguy, DNDi’s Director of External Affairs, to reflect on what has been achieved and what the future could hold for Innovation+Access for neglected people.
Interviewer: Let’s start with hearing why MSF decided to set up DNDi ?
Julien: MSF’s Access Campaign was already up and running, focused on how to address the barriers created by the high price of medicines for many people in developing countries — specifically working to achieve access to affordable antiretrovirals for people living with HIV.
At the same time, our medical teams on the ground were also seeing a large number of other medical ‘gaps’, where we found ourselves without the relevant medicines, tests or vaccines needed to treat people. This was acutely the case for patients affected by what are known as Neglected Tropical Diseases, or NTDs. For instance, the only existing treatment we had to treat people for the recurring outbreaks of sleeping sickness that we were encountering in Central and Western Africa was derived from arsenic. It killed one in ten patients.
This was totally unacceptable to us. But we didn’t have the capacity inside MSF to come up with a better medical alternative. Given there were other ‘gaps’ too where we simply couldn’t provide adequate treatment, we first set up an internal working group that, after much consultation, resulted in MSF setting up the independent entity of DNDi.
Interviewer: Joelle, you were working for MSF on the ground at that time — what is your memory of the conditions that led to the creation of DNDi?
Joelle: It’s more a very personal memory of the outrage we all felt about what we were seeing and experiencing. I was on mission in Uganda at this time during an outbreak of sleeping sickness, and I saw our doctors and nurses come home at night and break down over the devastating consequences of the toxic drugs they had to administer because they had no other treatment option.
The problem was and is a medical innovation system that prioritises research into the most profitable products and fails to address the urgent needs of people in resource-limited settings. So, DNDi was invented to be a crutch, if you like — an intermediate solution — to deliver treatments in the shorter term, while promoting longer-term solutions to the problem of a skewed medical innovation system that puts profits, not people, first.
Interviewer: How far do you think DNDi ‘inherited’ the principles of its founder, MSF?
Joelle: Enormously. We can see MSF’s ‘DNA’ right from the start in the unique way DNDi crafts its strategies. DNDi focuses on open science. It focuses on developing products for patients at the last mile of health systems, on providing medicines that work at the primary health care level. All this is really part of the DNA from MSF.
We also inherited from MSF’s DNA through working literally in the same projects on the ground, for instance in the Democratic Republic of Congo with patients with sleeping sickness, in Bolivia for Chagas disease, and in India for visceral leishmaniasis.
Interviewer: Let’s move on to how you both feel about the achievements of the other organisation over this 20-year period.
Julien: I think the list of achievements of DNDi has been pretty good; several new drug combinations and welcome new formulations of existing drugs have reached the market for sleeping sickness and leishmaniasis and others. My only quibble would be the absence of new chemical entities — only fexinidazole for sleeping sickness so far. But that said, I do think DNDi has done a very good job on ensuring access and delivery of treatments — and that’s actually probably the most difficult part of the job to make sure people use them on the ground and that they are affordable to all in need.
Joelle: Well, from the start we needed a two-track strategy — one to deliver adapted and improved treatments for the patients in urgent need right now, and another track to develop new treatments, over the longer term.
As for the achievements of MSF and the Access Campaign — first and foremost was its courage in those early days of the AIDS pandemic, bringing to bear the entire weight of the organisation behind the fight for fair access to treatment. Who else could be more credible than MSF to bear witness for forgotten populations? Who else could more powerfully complement the voices of HIV patients, for example, at a time when access to treatment was blocked?
Bringing together the experience of physicians and the gravitas of the Nobel Peace Prize win was incredibly powerful and helped MSF’s other extraordinary legacy — that of contributing to a redefinition of ‘public health’ over this period. Back then, public health meant simply managing scarcity — doing too little for too many people. Today public health is defined as aiming for universal access to treatment and MSF and the Access Campaign have played an important part in shaping that new vision.
Julien: Well, actually, Joelle, I think we are still very much managing scarcity now! Is it really very different? We still live in a resource-constrained environment, I see this acutely in the area of NTDs. I don’t think endemic countries always prioritise public health in their own countries, and there is huge donor fatigue from the North. Maybe I’m just a grumpy old man, but I’m much more sceptical today about this dream of universal health care coverage. We need a new generation of young people, fired up, who will say NO! this inequitable situation where so many people are denied health care, is not acceptable.
Joelle: Oh, I’m in full agreement with you, Julien, about the challenges we face today. What I wanted to convey was that until the HIV crisis, and the ensuing battle for access that included the MSF Access Campaign, there was far less patient focus in public health and no alternative vision to ‘managing scarcity’. MSF has helped to build a very strong movement over the last 20 years to ensure a focus on patients and to set out a more positive vision of public health.
Interviewer: Can you describe the different ways that MSF and DNDi work together today to achieve their shared aims?
Julien: We meet and collaborate at different stages of the innovation and access cycle. Upstream, MSF helps to define the medical needs as we see them in the field, and the characteristics of the medicines that will make it effective in that context (eg, oral medication versus infusion, thermostability, price, etc). MSF then often provides clinical trial sites for DNDi — this has been the case particularly for the search for new treatments for leishmaniasis. The work to ensure access and delivery follows on and is undertaken together. We’re currently struggling together to get access to and distribute some niche leishmaniasis drugs, beyond the main treatment of liposomal amphotericin.
Joelle: There is indeed a deep connection at every stage. It also helps that so many of us are former “MSF-ers”, and our connections often run deep and personal. MSF-ers sit on the DNDi Board of Directors and Scientific Advisory Committee, as well as DNDi’s regional boards in Latin America, the US, and India. So we have direct MSF inputs at these different levels and can respond. For instance, when MSF came to us to say there was an urgent need for better paediatric HIV treatments, we developed Quadrimune, a ‘4-in-1’ combination of antiretrovirals specifically for the youngest children. It has been approved by the regulatory authorities of several African countries, including South Africa.
Interviewer: Are there ever disagreements between MSF and DNDi about what DNDi should be working on?
Joelle: There are rare situations when we will question the requests that come to us. For instance, MSF asked about us working on cancer treatments at one point, but we said there are so many players in the cancer research field, it’s not ‘neglected.’ What’s needed is for the ‘cancer tree’ to be shaken a bit so that the existing products are made available and affordable to all people in need. We really need to focus on treatments for diseases that have few or no therapeutic options for patients in under-resourced settings.
Interviewer: How does MSF’s funding contribution support DNDi’s work?
Joelle: MSF has provided funding to DNDi’s operations from the beginning. It has become a smaller part of our overall budget over the years, but it plays a critical part in ensuring our independence. Most of our funding today comes for specific projects, and we need the flexibility to move our R&D portfolio forward, including for diseases that are neglected by donors, such as mycetoma or paediatric HIV.
Interviewer: DNDi works with such a wide range of stakeholders — academia, donors, governments, civil society, pharma — do you ever have to make uncomfortable compromises where stakeholders set down conditions to your collaboration?
Joelle: No, because we have been able to adhere to our model of access-driven and open-science collaborations, even when we are working with major pharmaceutical companies. We have screened millions of molecules in the libraries of large pharmaceutical companies to identify potential treatments, without having to compromise.
But there are other trade-offs — for instance we want to mobilise partners in NTD-endemic countries, rather than northern contract research organisations. This is sometimes more complex, and this noble ambition can slow down the work and in turn can delay effective access.
But in the longer term, this will be most valuable. For example, we have developed over time an amazing network of clinical trial sites across the African continent with whom we launched a platform trial for COVID, involving 26 partners in 13 African countries, all working on one single research protocol. The way is open now for that network to pursue many other innovation activities, because we helped build that capacity, that competency, and that model of managing clinical trials across a multi-country project.
Julien: We too, in MSF, face dilemmas about working for instance with pharma as partners. For example, many drugs for people with NTDs, and actually specifically the drugs for sleeping sickness by the way, are made accessible only through donations by pharma companies. Yes, I can understand it’s not a sustainable solution to the access problem, but in that case, give me a Global Fund to buy medicines for NTDs! As long as there’s no cash to buy the drugs for NTDs, I don’t see any other option for NTD drug access. This at least is my own personal opinion, but it is not MSF’s institutional position.
Interviewer: What changes have you both seen over the last 20 years that have impacted or could impact on your work going forward?
Joelle: The Access Campaign and DNDi have been successful together in challenging the assumption that we have to live in a world of inequitable access to treatment and that only the pharma industry can innovate. We have demonstrated that alternative models are viable and this has created a new reality.
Externally there are several shifts that impact on both our work. The geopolitics of recent years that have led to the crises in Syria and Ukraine, and now Gaza, have recentred MSF’s focus, away from the medical challenges of NTDs, away from 20 years’ work in Africa, and towards civil wars and conflicts in other regions.
The ‘Black Lives Matter’ and ‘MeToo’ movements have also acted as wake-up calls on the need to reform our own institutions and look at our own systemic racism and sexism. DNDi has always aligned with partners in NTD-endemic countries so this reappraisal of the need to diversify leadership is very consistent with our founding mission.
And of course, there’s climate change. DNDi is on the frontline of responding to climate adaptation as many NTDs are climate-sensitive diseases.
Julien: What I would say is the difference — remember I’m focused on NTDs — is that international donors, in fact the global health community at large, are now focused on prioritising pandemic threats and biosecurity. This focus comes at the expense of supporting the work against traditional diseases — NTDs included — that are not a real threat for people in Northern countries.
Today vaccine coverage rates are collapsing in many settings, there’s a big upsurge in outbreaks of measles, diphtheria, meningitis and other infectious diseases, and I — this is my own personal opinion — believe as MSF we should focus funding and attention on these diseases to save lives today.
Interviewer: What do you expect from each other’s organisation and leadership as we move forward?
Julien: Back to basics! I would like to see DNDi intensify its focus once more on neglected diseases, not necessarily neglected tropical diseases but neglected diseases, meaning diseases for which private research investments are very limited. Something like snakebite fits perfectly, and I’m really delighted that DNDi has taken this portfolio on board.
I also want to see more treatments developed for vaccine-preventable diseases such as measles and yellow fever — whether we like it or not, the vaccination coverage in many places where we work is dropping down right now, so a better treatment for measles, for instance, would be very beneficial.
Similarly, I’d like to see DNDi extending their work into diagnostics. It’s certainly the problem with treating many NTDs, that there are simply not adequate diagnostics to detect the diseases in the first place.
Joelle: For ourselves, we need to continue to look at neglected populations, and other forms of neglect within NTDs such as gender, paediatrics, and HIV co-infections. We also hope that MSF will stay at the ‘last mile’ of health systems and bear witness to how the migrations of people driven by climate change expose new, non-immune populations to vector-borne diseases.
Our fundamental shared DNA will continue to drive us both forward; we will continue to challenge the status quo, and stay close to patients, travelling together and accompanying them on that last mile.
Please note that both interview partners contributed their own personal perspectives, based on many years of experience in their organisations, and don’t necessarily always reflect the institutional positions of their organisations.
If you want to learn more about DNDi’s story, watch “Out of the Shadows”, on YouTube: Out of the Shadows: The Story of DNDi