A ‘Simple Career’: The Untold Story of Bernard Pécoul and a Paradigm Shift in Global Health TB, Malaria & Neglected Diseases 10/10/2022 • Stefan Anderson Share this:Click to share on Twitter (Opens in new window)Click to share on LinkedIn (Opens in new window)Click to share on Facebook (Opens in new window)Click to print (Opens in new window) Bernard Pécoul, founder and executive director of the Geneva-based Drugs for Neglected Diseases Initiative (DNDi) from 2003 until 2022 Under the leadership of Dr Bernard Pécoul, the Drugs for Neglected Diseases Initiative became one of the flagship programmes for research and development into diseases affecting the world’s most forgotten people. He has contributed to the betterment of the lives of millions, yet few outside global health circles know his name. This is his story. “My career has been quite simple,” Dr Bernard Pécoul told Health Policy Watch in his final 24 hours at the helm of the Drugs for Neglected Diseases initiative (DNDi) on 5 September. “As a medical doctor, I first worked in hospitals, then spent 20 years with Médecins Sans Frontières (MSF), and now almost 20 years with the DNDi.” A first glance at the scant, formulaic interviews available on the internet with Pécoul backs up this version of events. His Wikipedia entry consists of just three short paragraphs, sourced from a single reference linking to a 2017 WaybackMachine archive of the website of DNDi, the organization he founded and has led for the last 19 years. It is some wonder – and a clear reflection of how Pécoul sees his role in the world – that so little information about his four-decade-long career can be found online. He has made a habit of understating his accomplishments, but behind the scenes, Pécoul has been a silent force behind a paradigm shift in global health and humanitarianism over the past 30 years that continues to unfold to this day. What began as an expansion of the scope of MSF’s humanitarian mission at the turn of the millennium would become DNDi – a pioneering non-profit drug developer responsible for the delivery of 12 treatments for the world’s most neglected diseases that have changed the lives of millions since its inception. “When I first arrived at the office, he was – I don’t want to say old – but this more senior person who had these crazy ideas about access to medicines,” recalled Dr Joanne Liu, a contemporary of Pécoul’s at the Paris office who served as MSF’s international president for six years. “He was way ahead of us – decades before us – in terms of saying: If we want to care even more for the patients we treat in the medical field, we need to have the tools to care for them properly.” Dr Eric Goemaere, a former director of MSF Belgium, was Pécoul’s brainstorming partner in the years leading up to the creation of DNDi. “In terms of global health, Bernard changed the prevailing approach from top-down to bottom-up,” said Goemaere. “This idea of his – to start from a specific situation, specific diseases, and work with partners on the ground to find solutions for diseases that did not exist in the mind of much of the world at the time – was the start of a paradigm shift in our field.” A career outside the limelight The WaybackMachine archive of DNDI’s website cited in his Wikipedia entry. Pécoul’s avoidance of the spotlight has been by design. If his name is not widely known beyond the professional circles directly adjacent to his work, it is because he has spent his career helping people no one sees. His life’s work has been to push them – their stories, rights to medical treatment, dignity, and humanity – into the spotlight, not himself. “Bernard has always had in mind a cause greater than his own,” said Dr Monique Wasunna, DNDi’s Africa Regional Office Director and a long-time colleague of Pécoul’s. “For him, it has always been about people, right from the word go.” This aversion to praise, much like his professional arc, is inextricably tied to the two decades he spent at MSF before launching DNDi. The experience of working with some of the world’s most vulnerable people on the frontlines of conflict, disease, and disaster – paired with the full knowledge of how many more continue to live in danger or without adequate care – leaves no room for self-congratulation. Dr Joanne Liu, International President of MSF from 2013 to 2019. “We’ve seen so many difficult moments that human beings have gone through, that there’s no way we’re going to aggrandise ourselves for trying to help them, support them, or give them the tools to support themselves,” Liu said in describing the DNA of frontline doctors. In Pécoul’s time as Director of MSF France, nearly 100 local staff were killed during the Rwandan genocide, alongside 56 doctors from the International Committee of the Red Cross they were serving with. “I think that when you go through the machine at MSF, this is how you come out at the end of the journey,” reflected Liu, whose tenure as international president included the infamous US military bombing of an MSF hospital in Kunduz, Afghanistan, killing 42 people including 13 MSF staff. The sacrifices of his colleagues and first-hand experiences of the chasm of social injustice affecting patients he treated as a frontline doctor imbued Pécoul with a sense of urgency he would weaponize for the benefit of the world’s most neglected populations for the rest of his career. “Working with Bernard, you feel this drive,” said Wasunna. “There is an inner feeling that we have to keep going, there is still so much to be done. People are dying.” Pécoul’s work ethic inspired everyone who worked with him, she said. “We can’t relax, because we haven’t gotten where we want to go.” Part I: Médecins Sans Frontières and a New Scope for Humanitarianism Sleeping sickness: the personal mission that catalyzed a career The 1999 MSF Press Release announcing the launch of the Campaign for Access to Essential Medicines. In 1999, MSF announced the launch of its Campaign for Access to Essential Medicines. In the media release, Pécoul, the initiative’s soon-to-be director, put into words a feeling shared by frontline doctors across the world at the turn of the century. “We are forced to watch our patients die because they cannot afford the treatments that could save their lives,” he said. “While we appreciate that patents can be an important motor of research and development funding, there must be a balance to make sure people have access to medicines.” Pécoul had initially planned to join MSF for just six months, but his encounters with sleeping sickness patients in Uganda and the Democratic Republic of Congo (DRC) in the 1980s, then still territories in Zaire, quickly led to a deep sensibility to the inequalities affecting those he was sent to help. A few months in, he decided to stay and would remain at MSF for the next two decades. Even 30 years later, the memories of these formative experiences that made clear to him and his colleagues the need for urgent action to address the crisis in neglected diseases remain vivid and painful. “I was confronted with treating sleeping sickness with arsenic, knowing that we would kill one out of every 20 patients because of the toxicity of the drugs,” he recalled. “We had to do something.” It was common – far too common in his reading – for Pécoul to come across patients suffering from diseases with no adequate medical solutions. The contrasts in the quality of treatment and care he observed between his experiences at Parisian hospitals and conditions in the field were impossible to dismiss. Pécoul himself points to the “clear continuum” between his time at MSF and at DNDi. “MSF was where the rationale for DNDi was born,” he said. Bernard Pécoul on an MSF mission in Honduras in 1984. It is in this light that DNDi’s first novel molecule, Fexinidazole, holds special importance for him. The breakthrough 10-day oral treatment replaced Melarsoprol, the arsenic-based compound that he and other doctors were forced to give to people with sleeping sickness years earlier, knowing it would kill one of every 20 patients. It first began development in 2005 and received final approval in 2018, 13 years after DNDi’s founding. “Fexinidazole totally changed the dynamic of treatment,” said Pécoul. “For patients of a disease that is 100% fatal without treatment, who would die in a few months or years, this was a big change in their treatment conditions.” For doctors on the frontline, this is a typically “Bernardian” understatement. “I have been on those sleeping sickness missions,” said Liu. “And what people need to understand is when we were treating people with this arsenic derivative where up to 10% of patients would die, it was awful.” Beyond the fatality rate, the treatments were agonizing for patients. “We would have to perform spinal taps, have people undergo extremely long treatments away from home – people would go berserk in our wards, it was crazy,” she recalled. “And now suddenly you get a pill? Honestly, that’s a miracle.” By the time Fexinidazole was approved, DNDi had developed eight novel treatment combinations for neglected diseases. These included ASAQ, a revolutionary oral malaria treatment passed on to the Medicines for Malaria Venture in 2015 that has been distributed to nearly 600 million patients. “If you had to summarize Bernard, he is someone who saw a medical issue at ground-zero, took a step back, and said: ‘How can I fix this medical issue for that patient?” Liu said. “And it meant he had to embark on the journey of creating DNDi.” From ‘orphan’ to ‘neglected’ diseases Pécoul representing MSF in Seattle to lobby the World Trade Organisation (WTO) delegates for lower drug prices in developing countries, 1999. The idea that people were suffering and dying due to a lack of interest from pharmaceutical companies has its roots in the 1980s. At the time, neglected diseases were still known by the generic term “orphan diseases.” These were understood to be illnesses whose rarity translated into a lack of markets large enough to generate research for the discovery of new treatments. Their reclassification as “neglected diseases” in the 1990s reflected a desire to highlight that far from being rare, these diseases were overlooked by pharmaceutical innovation despite affecting large numbers of people. They were simply ignored. The World Trade Organization’s creation in 1994 also drove the global consolidation of intellectual property rights over patented drug formulations, exacerbating concerns about their availability in poor countries. With most of the disease burden falling on developing regions, where few could afford high prices for treatments, and new blockbuster drugs generating ever-increasing financial gains for shareholders in rich countries, pharmaceutical giants showed little interest in developing drugs for neglected diseases. The bottom line rewards could not be justified. “Pharmaceutical companies were not interested in offering any beacons of hope to the patients we were attending to,” Goemaere recalled. Sporadic, sudden stoppages in the production of drugs that MSF had relied on for years spiked throughout the 1990s, catalyzing the foundation of the MSF-Epicentre symposium in 1996. Led by Pécoul, it would result in the first formal articulation of neglected diseases as a cross-cutting global health problem that needed to be urgently addressed. Epicentre would be the earliest direct ancestor of DNDi, and the first concrete step in MSF’s recalibration of its humanitarian mission. “Doctors were telling us that when we have a pandemic affecting people in the North, we are able to respond,” said Rafael Vilasanjuan, MSF’s General Secretary from 1999 to 2005. “But when it’s in the global South, we have nothing. “This is why we created the Access Campaign.” The Nobel Prize: MSF expands its mission Dr James Orbinski, MSF’s International President, delivers the Nobel lecture in Oslo in 1999. When MSF’s Campaign for Access to Essential Medicines was founded in 1999, it was conceived as a tool to pressure governments and industry to dedicate resources to developing new drugs to respond to “neglected” diseases of the global South. Still an embryonic concept at the time, it would soon receive a welcome boost to its prospects of success. On 10 December, 1999, a month after the launch of the Access Campaign, MSF accepted the Nobel Peace Prize. At Pécoul’s insistence, the prize money would help launch the month-old Access Campaign. “It was a huge thing,” Liu said. “I think it could still have happened, but this really gave the campaign a kickstart because we had the money to do it.” In Oslo, Dr James Orbinski’s Nobel lecture set out a statement of intent foreshadowing the expansion of MSF’s humanitarian mission that would unfold in the coming decades. “Today, a growing injustice confronts us,” Orbinski said. “More than 90% of all death and suffering from infectious diseases occurs in the developing world.” At the time, less than 1% of R&D was devoted to neglected diseases. Market mechanisms were not working. “Life-saving, essential medicines are either too expensive, are not available because they are not seen as financially viable, or because there is virtually no new research and development for priority tropical diseases,” Orbinski told the committee. “This market failure is our next challenge.” To anyone outside the movement’s inner circles, these words seemed innocuous. But by the time the speech was delivered, a new generation of MSF workers, many of whom underwent a baptism by fire in the refugee camps of Cambodia and Thailand in the 1970s and field missions in Ethiopia and Afghanistan in the 1980s, wanted the organization to spend less time fighting for press coverage and more time delivering effective medical care. Pécoul on mission at the refugee camps in Thailand, 1986. Down the line, Orbinski’s words would prove a key turning point in the organization’s understanding of its humanitarian mission. “I think within MSF there was this debate around how we define an emergency,” Liu said. “Beyond immediate humanitarian needs and relief aid, what could be a more sustainable solution?” When MSF received the Nobel Peace Prize, the organization was squarely focused on what had been its bread and butter since its inception in 1971, and the reason it had received the Nobel award in the first place: rapid, non-discriminatory humanitarian disaster response. This iteration of MSF was still reactionary, dedicated to the minimisation of violence and neglect suffered by people in war zones and natural disaster flashpoints. But while the organization had yet to formally expand its mission, the ethos of its philosophy and raison d’être articulated in the speech – if not its modus operandi – already included the values DNDi would be based on. “The dignity of the excluded is assaulted daily,” Orbinski said in his address. “These are the forgotten populations in danger, like the street children who struggle each grinding hour to live off the waste of those who are ‘included’ in the social and economic order. “More than offering material assistance, we aim to enable individuals to regain their rights and dignity as human beings.” In an interview with Health Policy Watch, Orbinski recalled Pécoul’s unrelenting push for the money to be directed toward the cause of neglected diseases. “It was Bernard who suggested to me that we use the funds to start the Access Campaign, and I announced this publicly without discussing it with anyone else,” Orbinski said. “This was one of the best decisions I have ever made.” Advocacy alone can’t cut it But shortly into the Access Campaign, Pécoul and his peers realized that the lack of development of drugs for neglected diseases could not be solved by advocacy alone. “It was the steering committee of the Access Campaign – those five, maybe six people – that were at the root of understanding that we needed to be directly involved in developing products nobody else would develop,” Vilasanjuan said. “It’s from there that the idea of funding an organization beyond MSF to ensure that we could treat these diseases with proper drugs came from.” As it became clear to the team at the Access Campaign that a new tool was needed to confront the crisis, Pécoul went on the offensive. “It was Bernard who first pushed the idea that MSF had to expand its conception of what our humanitarian reach should be,” explained Liu. “It is not only in war zones or in the aftermath of natural disasters that people need us; we can also approach global medical needs through a sort of social setup.” The paradigm shift in Pécoul’s vision was that it should be preventative. Emergency response needed to be complemented by a new emphasis on a proactive approach to saving lives. Pécoul believed such a project would be worth the investment because of the number of people in danger beyond crisis zones, where neglected diseases ravaged the weakest and most vulnerable. Humanitarian action can not prevent war, but drugs can prevent death. The approach was revolutionary in another aspect, as well, explains Goemaere: “Bernard’s idea was to try to find solutions for specific diseases in resource-limited settings by involving not just health agencies, but the patients,” he said. “It was an approach not possible so long as the monopoly over R&D was held by pharmaceutical companies.” And Pécoul knew he needed more data to make his case. So the MSF “Working Group on Neglected Diseases” was born. A ‘Fatal Imbalance’: the seminal report on ‘neglected disease’ research Dr Eric Goemaere treats Xolani Lantu at MSF’s HIV clinic in Khayelitsha in South Africa in October 2003. Dedicated to the systematic study of the issues surrounding neglected diseases, it did not take long for the new working group to make an impact. In September 2001, it published A Fatal Imbalance, a report that immediately made waves in the global health world. Its findings put into numbers what Pécoul and his frontline colleagues had long known from first-hand experience: there was a deep crisis in the research, development, and accessibility of drugs for neglected diseases. “The pipeline of drugs for neglected diseases is virtually empty,” the report found. “While it might be expected that health research would concentrate on the areas where the needs are greatest, the reality is quite different: only 10% of global health research is devoted to conditions that account for 90% of the global disease burden.” Between 1975 and 2000, just 1% of new drugs developed could be used to treat neglected diseases. “If we were to have looked at the most neglected diseases, that figure would probably have been 0.1% or even less,” Pécoul said. The report helped institutionalize the use of the term “neglected diseases” in the discourse of global health – emphasizing the neglect, and associations with poverty these diseases embody. “Most neglected diseases are part of a vicious cycle,” Pécoul said. “Disease is one of the elements of poverty, and poverty increases people’s exposure to neglected diseases.” In the new paradigm, neglected diseases, while including tropical parasitic, viral and bacterial infections, grew into a broader concept. Diseases like tuberculosis, also prevalent in middle-income countries of the global north, were included. The emphasis was now on the conditions of neglect and poverty that correlate with disease burdens, rather than simple geographic locations. Over time, “neglected diseases” replaced the term “tropical diseases” and its colonial undertones. With the facts were now clear, the conversation within MSF to explore the possibility of creating DNDi began. But its genesis was far from certain. “Part of the reluctance, I think, aside from this being outside of our mission, was not so much people disagreeing with the fact that we needed these medicines,” Vilasanjuan said. “It was people saying ‘we are used to being strong, and being in the places we need to be when it is time to act.’” “But this,” he stressed, “could be something we were not used to: a failure for MSF.” ‘This could be the break of MSF’: the inside story of the vote to create DNDi Rafael Vilasanjuan, MSF General Secretary from 1999 to 2006. In a meeting held at the movement’s Geneva headquarters in 2001, Pécoul brought experts from around the world to argue that MSF should create an organization to develop drugs for neglected diseases. “Particularly Bernard, but also others, wanted to have a clear ‘yes’ from MSF in terms of supporting DNDi”, said Vilasanjuan, who was MSF’s general secretary at the time of Pécoul’s pitch to international leadership. “And what we said was ‘no way’, this is far from our mission. MSF does not develop drugs.” If DNDi were to materialize, MSF’s 19 international sections would need to reach an agreement – and they held diverging views. “It took us almost a year to deal with the questions of risk, and perceptions of many of our sections that did not want to devote resources beyond the mission of MSF,” Vilasanjuan said of the negotiation process. The years leading up to 2001 had been particularly intense. The movement’s sections were fresh off missions conducted amidst the Rwandan genocide, civil war in Somalia, the Russian invasion of Chechnya, and the tragedies of Srebninca and the war in Kosovo. To top it off, MSF now had a heavy presence in Afghanistan – costing about $40 million annually – with the prospect of deployment to Iraq on the near horizon. In the business plan developed through MSF’s analysis, the commitment to DNDi would cost the organization $200 million over a 10-year span. Its consolidated budget at the time was around $1 billion. Having just won the Nobel Peace Prize, MSF was at the peak of its prominence, and many questioned why there was a need to expand the mission of the movement. “This an idea that would take months – if not years – to see a return on investment at a time when all we knew was the immediate feedback of going into a crisis region hands-on and saving a life”, Liu explained. “It was a completely different approach.” Despite the odds, MSF’s International Consulate decided to hold a vote amongst the 19 international sections on the proposal to create DNDi. And its rules set the stage for a critical crossroads in MSF’s history. A two-thirds majority was needed. If it passed, all sections would have to contribute on a proportional basis. If two-thirds voted against it, DNDi would be dead on arrival. If no consensus was reached, sections would be free to make their own decisions about whether to contribute, but the intertwined finances of MSF’s international sections meant this outcome could be existential for the movement. “The nightmare scenario for the international office was the free-for-all that would have resulted if no majority was reached because of the tensions it would create”, Vilasanjuan said. “We knew that if we did not act strongly, it could be the break of MSF. We needed to go for the majority.” An internal campaign unfolded within MSF over the next year emphasizing the value DNDi’s potential to discover and deliver new therapeutic solutions independently could bring to the patients the movement existed to care for. “Bernard had a very straightforward vision of what we should – and shouldn’t – do to craft the analysis to convince the whole movement,” Vilasanjuan said. “We’re going to lose” In the Spring of 2002, the vote to fund DNDi was narrowly approved by a last-minute change of heart by MSF Spain, a chapter that had nearly collapsed in the years leading up to the vote, and which Pécoul had intervened to help save. “Coming out of the Rwandan genocide in 1995, we had an acute crisis at the Spanish section,” said Vilasanjuan, who was communications director for MSF’s Barcelona office at the time. The horrors witnessed by its doctors in Rwanda created a deep divide among the staff. Should the chapter transition to being a development agency and distance their members from future atrocities, or remain part of MSF? Through his friendship with Jean-Hervé Bradol, then the communications director at MSF Paris and a major cog in the push to found DNDi, Vilasanjuan was put in touch with Pécoul. “Bernard’s view was that if this crisis continued, the risk of MSF Spain disappearing was high”, Vilasanjuan recalled. The infighting resulted in a significant turnover of directors, but the section survived. Vilasanjuan was appointed as the new director of MSF Spain shortly after. Though no longer head of the Spanish section at the time of the vote, Vilasanjuan retained contacts at the office. “Close to the vote on DNDi, I had people phoning me saying: ‘we’re going to lose, we’re going to lose’”, he said. Ultimately, MSF Spain would vote in favor of the proposition. DNDi would see the light of day. “I think this vote was the riskiest decision made over the last 20 years in MSF,” Vilasanjuan said. Part II: “A Moment of Joy” DNDi Takes Flight Wasunna and Pécoul at the DNDi and Founders Symposium, accompanied by Dr Bernhard Ogutu, Chief Research Officer of the Kenya Medical Research Institute (KEMRI), and Dr Jane Ruth Aceng, Uganda’s Minister of Health, 30 October 2019. “When DNDi became an entity in 2003, it was a moment of joy,” Wasunna said in recalling her presence at the founding of DNDi as the head of clinical research for the Kenya Medical Research Institute (KEMRI). KEMRI and other research and health institutions from the public sector became DNDi’s founding partners. They included the Oswaldo Cruz Foundation from Brazil, the Indian Council of Medical Research, the Ministry of Health of Malaysia and France’s Pasteur Institute. The WHO Special Programme for Research and Training in Tropical Diseases (TDR) would act as a permanent observer to the initiative. “From the beginning, Bernard ensured we had regional offices in the endemic areas of diseases we wanted to target,” Wasunna said. “Without engaging people on the ground, you cannot see the real picture: only the wearer of the shoe knows where it hurts.” And amidst the celebrations, major questions remained. At DNDi‘s launch, the model for drug development it was advocating was untested. “The big question mark at the time was whether pharmaceutical companies would be interested in working with a non-profit organization on R&D to deliver new products,” Pécoul said. At the ouset, DNDi focused on technocratic relationship building, partnerships and potential win-win’s on specific diseases and drug targets of interest. The team set its sights on companies that held IP rights to molecules of potential relevance to neglected diseases, but lacked profit potential – hoping they could be talked into partnerships that would enhance corporate portfolios and reputations without posing a threat to their bottom line. The low-opportunity cost of these collaborations also let DNDi set the rules of the game. “We never enter into collaboration if we have no guarantee that at the end of the day the product of the innovation will be accessible and affordable,” Pécoul said. Over the years, thanks to the negotiating prowess of the team forged by Pecoul, the model would prove to break the glass ceiling for non-profit drug development. WHO passes the torch: towards collaboration with the private sector If MSF was DNDi’s incubator, it was the pioneering efforts of the World Health Organization’s Special Programme for Research and Training in Tropical Diseases (TDR) that laid its groundwork. Established in May 1974, the TDR programme successfully led clinical trials on a new generation of medicines for neglected diseases from malaria to onchocerciasis throughout the 1980s and 1990s. But as drug discovery became more expensive, partnerships with pharmaceutical companies became more critical. If industry players were part of the problem, they were also key to unlocking the solutions. The UN-WHO model – which precluded cooperation with private sector companies and financing – thus became an increasingly awkward and impractical format for biomedical research. But TDR had done its job. The wave of innovation in neglected diseases drug development was now underway, and the WHO readied itself to pass the torch to a new generation of non-profit “product development partnerships” (PDPs) that could negotiate and partner with the private sector. In 1999, TDR finalized the launch of the Medicines for Malaria Venture (MMV), to which DNDi would pass on its malarial treatment ASAQ in 2015. A year later, TDR catalyzed the launch of the Global Alliance for Tuberculosis drug development (TB Alliance). Over the past two decades, the results of this model have been transformational. To name just a few, the resulting generation of non-profit development outfits led the charge on breakthrough treatments for malaria, sleeping sickness, onchocerciasis, trypanosomiasis, and tuberculosis – and continue to push the envelope today. Just last month, TB Alliance significantly strengthened the safety profile of their watershed BPaL treatment course for highly drug-resistant strains of tuberculosis — a breakthrough set to change the lives of millions of MDR-TB patients. ‘We can do this cheaper’ Pécoul accepting the Prince Mahidol Award from the Kingdom of Thailand in recognition of his lifelong work in public health and contribution to furthering research for neglected diseases. “There are now many players pushing this paradigm shift, but I think it is legitimate to say they are following the model first set out by DNDi,” said Goemaere. By bringing pharmaceutical companies into the conversation, and offering contexts for collaboration as simple as opening up their molecule libraries, DNDi demonstrated that industry could not only be part of the solution, but was sitting on a gold mine of scientific knowledge of neglected disease treatments that had simply not been used to benefit the sick. “We’re opportunists!” Pécoul said of DNDi’s development pipeline in a 2015 interview with InVivo Magazine. Of the 12 treatments DNDi has delivered, 11 are repurposed treatment combinations of pre-existing drugs. Wasunna also credited Pécoul. “What DNDi has achieved we have achieved together, but Bernard was the visionary,” Wasunna explained. “He was always saying, ‘we can do this cheaper; we can do this better; what if we approach it like this.’ “If you look at the costs at which we’ve been developing our treatments, you can’t understate the impact of this approach.” While pharmaceutical companies can require as much as $1 billion to develop a new drug, the total cost of the 7 treatments with development costs listed on DNDi‘s website amounts to just $115 million – an average of $16 million per treatment combination. ‘Our biggest achievement’ Pécoul with the first deliveries of ASAQ, 2007. The quintessential proof of concept for this approach would come in 2007 when DNDi delivered the breakthrough malarial treatment ASAQ in a non-exclusive partnership with pharma giant Sanofi for a total cost of just $13 million. It is available today for just $1.00 for adults and $0.50 for children. “Today, this drug has probably been used by 600 million people in Africa,” Pécoul said. “It is one of our biggest achievements.” To date, DNDi has developed 12 new treatments for six neglected diseases. Some – like Chagas disease, river blindness, and mycetoma – are still unlikely to register on an average person’s radar. But not everything has gone according to plan. A particular failing Pécoul pointed out from his tenure at DNDi was the lack of progress on leishmaniasis treatment, a parasitic disease the organization has been fighting since its inception in 2003. “For leishmaniasis, which is present in all the different continents – Asia, Africa, Latin America – the treatments we have are still not adequate,” Pécoul said. “The diagnosis has improved a bit but is still complex, so many people continue to be poorly treated.” But Wasunna, a leading global expert on leishmaniasis who was awarded the rank of Officer of the French National Order (Ordre National du Mérite) by the French government for her work on the disease, explained that Pécoul’s framing does not paint the full picture. “The road has taken 19 years”, she said. “It has been a long road, but we are almost to freedom. Almost.” ‘The best science in the most neglected part of the world’ The village of Abdurafi is a small, rural farming community in Northwestern Ethiopia. It was the site of a joint venture between Médecins Sans Frontières and DNDi for a clinical trial on visceral leishmaniasis. When the Leishmaniasis East Africa Platform (LEAP) was created under the auspices of DNDi in 2003, the field of research and discovery for the disease was effectively non-existent. A paper co-authored by Wasunna in the same year would find that while “substantial knowledge of parasite biology” existed to improve medicines, “it is not translating into novel drugs.” As attested to by her 30-year fight against the disease, leishmaniasis holds a similar place in Wasunna’s heart as sleeping sickness does in Pécoul’s. When she embarked on her mission to fight the disease in the 1980s, the situation of leishmaniasis patients in her native Kenya ran parallel to those endured by sleeping sickness patients Pécoul treated in the DRC and Uganda in those same years. “The treatments that existed were toxic, and not easy to administer,” Wasunna recalled. “People needed to take injections for at least 30 days in a hospital.” In the endemic countries participating in the platform – Kenya, Uganda, Sudan and Ethiopia – many of the ‘hospitals’ that existed at the time were no hospitals at all. “You would find patients in Ethiopia and Sudan being treated in tents,” Wasunna said. “To cut a long story short, we had to train, put up infrastructure, and capacity build, because some of the countries did not even know how to do clinical trials.” Médecins Sans Frontières staff working at the site in Abdurafi, 2019. As the founding chair of LEAP, Wasunna would oversee major infrastructure upgrades and personnel training across the member countries. “We had ministers of health, scientists, researchers, community workers, anybody who was interested was invited to come in and join the platform,” said Wasunna. “If we wanted to develop these medicines for the most neglected patients, we needed to have everyone on board.” DNDi would deliver several advances in leishmaniasis treatment through LEAP over the coming decades, but knew from the outset the goal had to be an oral treatment. “From the beginning, the patients would tell us ‘We appreciate the improvements, but we need an oral treatment,’” said Wasunna. “This was the dream for everyone.” In 2016, Wasunna took Pécoul and Liu – then the International President of MSF and a partner in the platform – on a site visit to Abdurafi, a small village in Northwestern Ethiopia where a trial on visceral leishmaniasis was underway. “They were doing the best science in the most neglected place in the world,” Wasunna recalled. “That trial embodied DNDi. It showed that it doesn’t matter where you are, you can achieve a lot.” Today, the results from Abdurafi have built up to DNDi nearing phase 2 trials in a partnership with Novartis for an all-oral treatment for leishmaniasis, with the entire discovery and delivery process conducted in Africa and India. “That we have left the era where all the trials are done in the North, we can pass the test, and have WHO say these were excellent trials, that is mind-blowing for someone living in a place like Ethiopia or Sudan,” said Wasunna. “This is the ultimate success we have been waiting for.” The Covid Paradox While progress is easy to see through rose-tinted glasses, one does not have to look far to see the reasons for Pécoul’s hesitance to depict the world as entering a new era of change. In the field of neglected disease treatment, the COVID-19 pandemic presents a paradox. While the sheer scale of financing and pace of scientific progress observed has redefined the limits and hopes for what is possible in the discovery and delivery of new treatments, it has also laid bare the persistent levels of neglect towards these diseases as serious crises of global health. “There is a positive aspect: demonstrating that when you invest, you can get very concrete results,” Pécoul said. “The problem with COVID was that while innovation was positive, the translation from innovation to access was a catastrophe, and is still a catastrophe.” In the first 11 months of the COVID-19 outbreak, US$104 billion was spent on research and development, resulting in more than a dozen vaccines receiving authorization within a year of the public health emergency declaration by the WHO. In 2020, $3.927 billion was spent on research and development for all neglected diseases combined. Of this, just 12% was contributed by the pharmaceutical industry according to G-Finder’s annual survey. “For me, in neglected diseases, we are obliged to address two simultaneous issues: the lack of innovation, and securing access,” said Pécoul. “It’s at this bridge between innovation and access that we find ourselves on every topic.” At the outset of the pandemic, DNDi launched the ANTICOV platform, a consortium bringing together 26 prominent global R&D organizations from Africa and Europe to fill the critical gap in the identification of treatments adapted to field conditions in low- and middle-income countries. Despite massive innovation, the involvement of institutions in the Global South has been minimal throughout the pandemic, leaving countries both far behind the research arc and faced with solutions that are not adapted to their local circumstances. “We should not be waiting for the trials to complete in Europe or North America before we involve our African colleagues and researchers,” Pécoul said. “If we want to prevent and treat COVID-19 or any other disease in resource-limited settings, we must accelerate the sharing of knowledge and data, and prioritize access to affordable tools.” ”Africa’s COVID-19 research must be tailored to its realities – by its own scientists,” Wasunna said. “Access has always been essential: if we have a medicine but can’t get it to patients, we are back to square one.” Data: G-FINDER While funding for neglected disease research and development has increased, fresh experiences with monkeypox and COVID-19 show how far off the mark of equal access to medicines the world remains. “I think these stories just keep repeating themselves,” Pécoul reflected. “Our goal has always been to correct this imbalance of investment on one side of the world versus the lack of interest on the other.” An Unspoken Legacy Pécoul and colleagues at the University of Dundee in 2012. While Pécoul is reserved in recounting his own story, even he fleetingly acknowledges that his work has made an impact. All these years later, the well-being of the descendants of the sleeping sickness patients he encountered in the 1980s in Uganda and the DRC is still a central part of his life’s mission. “When I visited the DRC recently, I was able to observe that at a village level, we can now diagnose and treat sleeping sickness”, Pécoul responded when queried on the lasting impacts of DNDi. “This is a really strong feeling for me.” Throughout the entire hour of our interview with Pécoul, this was the only time he seemed to stumble over his words. “Compared to what I observed here 30 years ago when we were asking people to go through a very complex diagnosis, asking people to move to a hospital that is sometimes three days away from the place where they live, this is truly a revolution for them,” said Pécoul. “I’m not saying that today everything has changed, but at least we have demonstrated that if you create an environment where you set the rules of the game, progress is possible.” His close relationship with sleeping sickness patients is widely known, and the significance of DNDi conquering its treatment is not lost on his colleagues. “I am so happy that he was able to see that in his lifetime,” said Liu. “He has done tremendous work, and his legacy will affect generations of people,” she concluded. “I have met less than half-a-dozen people that really inspire me, and Bernard is one of them.” With Pécoul now retired, some former colleagues are already eyeing where he should go next. “The main reason he will struggle to stop working is not that he thinks he is indispensable”, Goemaere said. “I am due to see him in a couple of weeks, and the first question I will raise is, what’s next? What are you going to do now, and in which role?” “It’s not going to be easy for him to retire, because lots of people including myself will not facilitate that”, Goemaere said jokingly, but clearly serious. Still on the clock at the time of our interview, Pécoul had work to do. “I’m very sorry, the meeting I am chairing next has already started”, he said as he kindly ended our interview. Asked a parting question as to whether he felt things had improved over his career, his response was characteristically measured. “A little bit.” Image Credits: DNDi, Seattle Times. Share this:Click to share on Twitter (Opens in new window)Click to share on LinkedIn (Opens in new window)Click to share on Facebook (Opens in new window)Click to print (Opens in new window) Combat the infodemic in health information and support health policy reporting from the global South. 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