Lessons Learned And Challenges Ahead: DNDi Celebrates 15 Years

Berlin, Germany – The Drugs for Neglected Diseases Initiative (DNDi) is celebrating its 15th anniversary and in a special event Tuesday night, founders and supporters of the product development partnership (PDP) gathered in Berlin to reflect on lessons learned and challenges that still lie ahead. Here below are excerpts of what they had to say.  

Marie-Paule Kieny, Chair of the Board of DNDi

15 years ago the Drugs for Neglected Diseases was created as a response to the frustration of clinicians and the desperation of patients facing the reality that their treatment was either ineffective, highly toxic, or unavailable, when it even existed at all.

Against this background DNDi was established as an experiment. After 15 years, what are lessons to be learned from these experiments?

DNDi is a needs-driven organization, we put patients and not profits as a value. Scientific independence guarantees a needs-based approach. Our research is collaborative, open and transparent; knowledge is worth something when its shared, open science is a key strategy. DNDi is only possible through collaboration – networking is a key part of our innovation. Public leadership is imperative to promote coherent ecosystems to make medicines available to all patients. Without sustainable, affordable accessible and adaptable medicines we will not be able to meet the Sustainable Development Goals.

Veronika von Messling, Director-General of the Life Sciences Division, Federal Ministry of Education and Research, Germany

The overall mission was to improve the health and quality of life of people suffering from neglected diseases, filling a gap that was left by pharmaceutical industries, because neglected diseases were not a priority. It is to DNDi’s credit that game-changing treatments for diseases such as sleeping sickness have been developed.

Research and development, innovation and access are drivers worldwide. The German government is committed to funding global health research because we are convinced this will contribute to global health.

We are aware that despite the remarkable advances made there are still significant gaps, and therefore Germany remains committed to further development of PDPs [product development partnerships] that ensure no one is left behind.

Soumya Swaminathan, Chief scientist, World Health Organization; former head of the Indian Medical Research Council

I can remember as a practitioner in India, when we were still doing spleen punctures for diagnosis of Kala Azar (visceral leishmaniasis). And all we had available were very toxic treatments. Children would come to us who were already skin and bone, their abdomens would be all bloated with enlarged livers and spleens. So it was torture for the patients and it was difficult for us as the treating physicians to subject our patients to so much discomfort, and many of them came too late to be cured.

Now thanks to treatments like those developed by DNDi, Kala-Azar has almost disappeared from the Indian sub-continent. We still have pockets in the most vulnerable groups. And it is because of poor housing that the sand flies breed. You improve housing and leishmaniasis disappears. It’s all tied up to development. More recently, I met Nathalie [Strub-Wourgaft] of DNDi when we were in Sudan at the world’s only Mycetoma Research Center. Mycetoma is not immediately fatal but it is incapacitating. The amazing thing to me was that DNDi was there, doing this collaboration on a clinical trial for a new mycetoma drug. Most people would not have heard of mycetoma. The victims would remain invisible unless organizations like WHO and DNDi spoke about it. Investments in science and research are very important, not only at global level but also at country level – this is where we see the whole end-to-end approach is needed. We need to be talking about neglected populations, neglected pathogens and neglected products – and not only neglected diseases.

You can have the product on the shelf, but how do you ensure access? Our job at WHO is to think through all of these things with our partners, including DNDi. So we have created a forum for the PDPs and their funders to come together and discuss their common challenges, opportunities and plan strategically. To think about issues such as “what does access look like?”

When you have publicly funded R&D, if that product is successful, how is it going to reach populations, how will it be priced, and how are countries going to be able to adopt innovations? Financing is one aspect, but the other aspect is the capacity of countries to absorb these innovations into the health system, and to be able to prioritize based on local needs.”

John Amuasi, Executive Director of the African Research Network for Neglected Tropical Disease

There is indeed a constant tussle between having the high-level endorsements for a new treatment and moving fast enough with the evidence available to put it in place on the ground. I would recommend some effort be put into the assessment of these technologies as actionable on the ground. Health Technology Assessments are very context specific and can relate to things like cultural practices that do influence the final decision on implementation.

Public interest R&D and research that is in the interest of the public is really two different things. I recognize the challenges inherent in getting leaders of low- and middle-income countries to commit more. When people such as ministers have to make these decisions, if they don’t think that people are interested, they will not focus on it, even if it is in the interest of the public. So in looking at public interest R&D one key question is how to draw the public interest in it.

Do people really judge their governments to the degree which their health has improved? If we are able to demonstrate clearly that our R&D activities impact directly on improving primary health care… via health system strengthening, I think we would be even more successful in our efforts in promoting R&D. If we can show how this work directly impacts on improving primary health care and universal health coverage, if this link can be exposed and made more visible it would go a long way to supporting public interest in R&D.

Jeremy Farrar, executive director of the Wellcome Trust

We are at a really critical juncture in global health. There is no doubt that investments we have made are starting to bear fruit, but at that very juncture we see a world that is looking very fragile. We have a world challenged by climate change, persistent and emerging infections and of course non-communicable diseases – and that double whammy is going to be an enormous challenge. None of us should underestimate the challenges of delivering Universal Health Coverage in this context.

If you look at the trends in the pharma industry, I worry that industry, while having been sometimes a difficult partner, could become even less of a partner and that is a worry as they step away from antibiotics, for example. I worry that we have been through a relative honeymoon period. There is a vacuum, and that vacuum has to be filled.

I think we have to think through more as a community how we can fill that vacuum, including in financing. As we go forward, how are we going to fill that gap? In terms of all of these PDPs,  DNDi, Medicines for Malaria Venture, etc., how can we put this on a more sustainable footing, one that isn’t just reliant on charity and philanthropy, through more innovative financing. There is an incredible opportunity because interest rates are almost at 0%. And if we don’t use this moment in time to access capital, I worry that we won’t be able to rely on governments stepping up, or on philanthropy, and we may look back on the 15 years that have passed as the easy period. So should we start to change and adapt to that future when we are at our strongest? I wonder if now isn’t the time to do that, given the prevailing winds?

I also call on Germany to not lose sight of multilateralism, as other countries shift away and become more nationalistic, that Germany and Europe stand up for the values that have made it what it is over the past few decades.

Bernard Pécoul, executive director of DNDi

When Médecins Sans Frontières (MSF) received the Nobel Peace Prize [in 1999], the decision was to dedicate the prize money to the creation of DNDi.  We are not driven by profit but by patient needs, we focus on populations for which there is no solution or very bad solutions. Our close links to MSF have kept us on track. When we started researching drugs for sleeping sickness it was still being treated with arsenic.  First we improved the treatment, now we have registered the first oral treatment.

Our vision has been the best science for the most neglected diseases.  It was easy to formulate and a lot harder to implement. But the fact that we established a relationship from the start with the Institut Pasteur helped us to bring scientific credibility on the table.  They helped us to select the initial projects.  DNDi is strongly rooted in the countries where the majority of our patients live.  We commit to strengthen the research institutions close to patients and communities. DNDi has strived for countries to lead the response rather than being passive beneficiaries. This is part of the vision.

DNDi believes in sharing our lessons learned, to shape [the research environment].  We have from the start supported the WHO role and worked closely with WHO to facilitate implementation and support development of new guidelines for drugs that we develop.”

Representatives from the founding partners of DNDi

Image Credits: E Fletcher/HP-Watch, Lukas Schramm/DNDi.

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