The Drugs for Neglected Diseases Initiative (DNDi), a not-for-profit drug research organization which has Indian Council of Medical Research (ICMR) among its founder members, has decided to have a patient representative in its board of directors. The organization that aims at harnessing cutting-edge science to develop medicines for diseases afflicting the world's poorest people wanted a patient representative to make sure that its research is truly "patient centric".

"As the fruit of DNDi's drug development is obviously intended for the people suffering from neglected diseases such as leishmaniasis and sleeping sickness, we wish to involve patients in this R&D process via a Patient Representative to the Board of Directors," DNDi secretariat has noted "The needs of patients are lost in the hunt for new drugs to treat their diseases. DNDi believes that if new drugs are to be relevant and effective the patient's voice should be heard loud and clear and their profile and needs be central to the R&D of new drugs for their diseases," they added.

The main tasks of the patient representative include helping the board to better understand social/economic/social barriers to effective healthcare, as well as patients' needs and their life conditions, linking up with health organizations, take their concerns to Board, and encourage patient-group participation in DNDi projects and promote DNDi and its projects to the general public, governments, scientific community, NGOs and media.

"As DNDi's patient representative he or she must be a Protector of Patients' Rights, DNDi Advocate, Gatherer and Disseminator of Patient Information, and Networker. As a member of the DNDi Board, he or she will be expected to discuss and decide on DNDi-related issues; and will represent patients' interests independently of his or her affiliations. The ideal profile is that of a community health worker from a neglected-disease-endemic region who has access to a large network of health organizations. This is not a salaried position but will be compensated by a per diem and reimbursements where appropriate," DNDi has explained.

The organisation has invited nominations for the post and the details of the nominees should be emailed to jbanerji@dndi.org by 15 February 2005. Nominees will be contacted in February-March 2005 and the finalist's credentials presented to the Board in April-May 2005. DNDi was formally launched in Geneva on July 3rd 2003 and includes prestigious health and research institutes from Brazil, France, India, Kenya and Malaysia along with Doctors Without Borders/Médecins Sans Frontières (MSF) as its members. The organization works in close collaboration with the UNDP/World Bank/WHO Special Programme for Research and Training in Tropical Diseases (WHO/TDR) to achieve its goals.

DNDi has felt that only 10 per cent of the world's health research efforts go into diseases that account for 90 per cent of the global disease burden. The six founding partners of DNDi are the Indian Council of Medical Research, Institute Pasteur (France), the Kenya Medical Research Institute, Doctors Without Borders/Médecins Sans Frontièrs (MSF), the Ministry of Health of Malaysia and the Oswaldo Cruz Foundation (Brazil). WHO/TDR will participate in the meetings of the Scientific Advisory Committee of DNDi as an observer to provide expert scientific and technical advice as required.

DNDi plans to spend around US$250 million over 12 years to develop 6-7 drugs and several drugs in the pipeline to combat sleeping sickness, leishmaniasis and Chagas disease - three killer diseases that threaten a combined 350 million people every year. To increase the chance of short and middle-term success, the organisation will develop drugs from existing compounds as well as fund and coordinate research to identify new chemical entities and develop them into drugs. DNDI is the first not-for-profit organisation to exclusively focus on the world's most neglected diseases. Moving away from the traditional Public Private Partnership structure, it has taken drug development out of the marketplace by encouraging the public sector to take more responsibility for health.