Dr. Wilfried Mutombo, Coordinating investigator, Fexinidazole study for HAT
At the time DNDi and its partners are extending the clinical trial on fexinidazole, the first new oral treatment tested for sleeping sickness, to the early stages of the disease in adults and to children between 6 and 14 years of age, it is important to remember how clinical trials in remote areas of a country such as the Democratic Republic of the Congo (DRC) can be a daunting challenge, but can also bring lasting benefits to local communities and researchers, and to the health system overall.
Filaria is a group of neglected tropical diseases infecting over 150 million people in sub-Saharan Africa, Asia, and Latin America. The two main filarial diseases, onchocerciasis (river blindness) and lymphatic filariasis (elephantiasis), devastate the lives of patients, causing debilitating symptoms and social discrimination. In March 2014, DNDi traveled to rural Ghana to meet and interview patients with filaria and the physician-researchers treating them.
New York – June 14, 2014 – The Drugs for Neglected Diseases initiative (DNDi) wishes to extend its deepest condolences to the Rockefeller Family for the tragic loss of Dr. Richard Rockefeller, who was killed in a plane crash the morning of June 13.
Robert Don, Discovery & Preclinical Director, and Charles Mowbray, Head of Drug Discovery, DNDi
Important advances have been made in recent years to optimize the use of existing medicines to treat neglected tropical diseases (NTDs) but, while providing urgently needed improvements on previous treatments, they are often still not ideal. There remains an urgent need to design and develop modern drugs to treat these diseases.
A new paper recently commissioned by DNDi to examine the possibilities of creating a pooled international R&D fund for the Demonstration Projects that were selected as part of the process following on the report of the WHO Consultative Expert Working Group on Research and Development (CEWG): “Demonstration Financing: Considerations for a Pilot Pooled International Fund for R&D.”
On 7 April 2014, the Director-General: Health, Ms P Matsoso and the Executive Director: DNDi, Dr Bernard Pécoul, signed a Partnership Agreement on Improving Access to Paediatric HIV Treatment in South Africa. DNDi’s paediatric HIV project, in partnership with Cipla Ltd., and with the support of the UNITAID, in addition to the French Development Agency (AFD), Médecins Sans Frontières/Doctors Without Borders (MSF), and the UBS Optimus Foundation, is to develop two 4-in-1 lopinavir-based fixed dose combinations as well as a solid formulation of ritonavir booster that are suitable for young children infected with HIV, as well as with tuberculosis and HIV. These formulations, ultimately, will be in solid ‘granular’ form that is palatable and requires no refrigeration, alleviating much of the current treatment burden on the children, their mothers and caregivers, and healthcare workers.
Silvia Gold, President, Mundo Sano Foundation
American Trypanosomiasis, more commonly known as Chagas disease, no longer reflects the geographical scope of the disease. Today, Chagas disease affects people around the world. It is hard to imagine that a disease, discovered over a century ago, which today can be easily diagnosed and for which effective treatment exists, continues to be a problem of severe health impact.
Bernard Pécoul, Executive Director, DNDi
The field of neglected disease R&D today is experiencing what could be characterized as a phase of shifting sands: after long inaction for decades, we are now experiencing both remarkable advances and rude set-backs. The innovative ideas, incentives, and R&D partnerships, such as DNDi, that emerged over the last decade are right at the nexus of these movements – of governments, industry, philanthropy, and civil society, among others – and they thus impact directly on our work. They provide a constant reality check that reminds us of just how fragile the field of not-for-profit drug development for neglected diseases is, be it in times of advances or in times of set-backs. We have to take this seriously into account and feed our reflections, debates, and efforts to secure the sustainability of the environment in which we work to solve, in the long term, the problems of millions of patients.
Jean-François Alesandrini, Fundraising & Advocacy Director
WHO Member States and experts, after weeks of consultations, are in the process of selecting ‘demonstration projects’ to address the unmet medical needs of developing countries. The overall objective of this process is to evaluate and assess new innovative mechanisms to coordinate and fund public health research and development (R&D).
One of the most important achievements of DNDi Latin America is the beginning of the Lead Optimization Latin America project (LOLA), with a focus on the first steps of Research & Development (R&D) for new medicines: the discovery of new compounds. This is a crucial step in the expansion of R&D projects in the region.
Eric Stobbaerts, Head of DNDi Latin America
As DNDi marks its 10 years of existence, the time is ripe to assess the achievements and difficulties experienced in order to move into a new decade with new approaches. For Latin America, in particular, this period is unique, even transformative, as it is marked by unprecedented economic and social strengthening of the region. This growth brings with it the crucial role of Latin America’s public and private sectors in contributing meaningfully to the neglected disease research and development landscape. The activities of DNDi Latin America are focused on contributing to this process and have expanded with increasing opportunities to partner with ministries of health and national control programmes, but also other non-governmental and private-sector actors, to address the needs of patients suffering from neglected tropical diseases endemic in the region.
Monique Wasunna, Head of DNDi Africa
As Head of DNDi Africa, I was honored to bear witness to the special event recently co-hosted in Nairobi by DNDi and the Kenyan Medical Research Institute (KEMRI) to celebrate a decade of Research & Development (R&D) for Neglected Diseases (ND) in Africa. Ten years ago, about 70 participants met in Nairobi to discuss the first steps of what was to lead to 10 years of experiences, learning, and first successes of DNDi in Africa. On June 4th and 5th, we were more than 430 committed and passionate researchers, scientists, decision-makers, and donors to explore the opportunities and remaining challenges for R&D for neglected diseases in Africa. The presence of representatives from 33 countries, of which 21 African countries, and the keen interest of African and international media for the issues we covered is, in itself, an achievement for those who fight to place and keep neglected diseases on national and international public health agendas.
Bernard Pécoul, Executive Director, DNDi
A decade ago, research and development (R&D) for neglected diseases was at a standstill. At the time, Médecins Sans Frontières/Doctors Without Borders (MSF) was experiencing firsthand in the field what it meant to be unable to treat patients with neglected diseases, because treatments did not exist or were inadequate. So MSF decided to commit its 1999 Nobel Peace Prize money to R&D for neglected diseases and, with six key public health partners worldwide – MSF, the Indian Council of Medical Research, Brazil’s Oswaldo Cruz Foundation, the Kenya Medical Research Institute, the Ministry of Health of Malaysia, Institut Pasteur in France, and the Special Programme for Research and Training in Tropical Diseases (WHO/TDR) – DNDi was launched in 2003.
Thursday, 23 August 2012, a sunny and very hot afternoon in West Pokot, Kenya: Dust devils circle into the air as pickup trucks packed with passengers drop off numbers of people, who all settle under a large tree in the village. This is where the community gathers for elders’ meetings. It is here that Nancy Chemluo recounts how kala azar affected two of her sons, and how she and her community changed their approach to seeking treatment.
Human African Trypanosomiasis
Musenge Village, Masi Manimba
Democratic Republic of the Congo
Angèle is in her early twenties. She is married and has three children. She and her husband work in the field as subsistance farmers to gather food for their family. In July this year, the sleeping sickness mobile unit paid an important visit to her village to screen the population for the disease. Angèle was diagnosed with late stage sleeping sickness.
and Rosario, ArgentinaThe world’s number one soccer player, Lionel Messi, who plays for FC Barcelona and the Argentina national team, having seen a documentary by Ricardo Preve on Al Jazeera, ‘Chagas, A Silent Killer’, speaks out about Chagas disease. The soccer star calls for teamwork in the field of Chagas disease to treat patients and find altogether new treatments.
Bernard Pécoul, Executive Director, DNDi
Last year saw an important cornerstone laid in the fight against neglected tropical diseases (NTDs), and one that highlighted the need to keep NTD research and development (R&D) on the global public health agenda. In January 2012, the World Health Organization (WHO) launched its NTD strategy, ‘Accelerating Work to Overcome the Global Impact of Neglected Tropical Diseases: A Roadmap for Implementation’, which set forth specific, time-bound targets for the prevention, control, elimination, or eradication of the 17 WHO-defined NTDs by 2020. The goals were set high, and key actors came together to commit to these goals at the ‘Uniting to Combat NTDs’ meeting in London in January 2012. At this meeting, major private, public, international, and non-governmental partners, including DNDi, aligned their efforts to support the WHO roadmap and accelerate progress toward eliminating or controlling 10 of the 17 NTDs by 2020 as put forth in the resulting ‘London Declaration on Neglected Tropical Diseases’.
Dr Florent Mbo Kuikumbi, provincial coordinating physician of North Bandundu for the National Human African Trypanosomiasis Control Programme (DRC)
Sleeping sickness has several facets. We have to cover all of the endemic areas with surveillance efforts, otherwise there will always be pockets than can later lead to epidemics. Today, for example, in Bandundu Province in the DRC, we can only say we are controlling the disease, not eliminating it. We have to be able to cover all of the disease pockets and follow them for some time.
Nathalie Strub-Wourgaft, Medical Director, DNDi
The need for regulatory harmonization (i.e. either allowing for centralized drug registration in multiple countries as one single approval, or mutual recognition which entails expediting registration in additional countries once a drug has been registered in a primary country with sufficient regulatory capacities) in order to reduce the duplication of research efforts, use resources more efficiently, and especially to speed up the process to reach patients, was identified decades ago in Europe.
It’s early on the morning of Thursday, 23 August 2012. We are at the Chemolingot Sub-district Hospital, where SSG&PM treatment is being administered to patients suffering from kala-azar (visceral leishmaniasis). In one of the wards, sitting on a hospital bed, is Lemarus Tebakwani Lukeno, a 23-year-old kala-azar patient, who has been undergoing treatment for five days.