'It is time to bring neglected diseases in from the cold and to bring real hope to those who live and too often die from them.' This was the rallying call made by UK MEP John Bowis to representatives of governments, pharmaceutical companies and non-profit organisations attendi...
Policy making and guidelines
'It is time to bring neglected diseases in from the cold and to bring real hope to those who live and too often die from them.' This was the rallying call made by UK MEP John Bowis to representatives of governments, pharmaceutical companies and non-profit organisations attending the first day of an international conference on neglected infectious diseases (NIDs) in Brussels on 8 November.
Buruli ulcer, Dengue, Leishmania, River Blindness, Schistosomiasis, Sleeping Disease and Chagas are just some of the infectious diseases currently ravaging whole populations across the developing world. These diseases are so called 'neglected' because although they are responsible for an estimated 500,000 deaths and millions of disabilities each year, less than 10% of the world's biomedical research funds are dedicated to them. Between 1975 and 1999, of the 1,393 new drugs that reached the market, only 13 were approved for tropical diseases. Meanwhile, of the drugs currently available, some are deemed highly toxic, ineffective or difficult to administer.
'This is an imbalance that we cannot live with,' said Mr Bowis, health spokesman for the Group of the European People's Party (EPP). The MEP outlined these imbalances in his 2005 parliamentary report, thus giving new impetus to a debate on the consequences of these diseases and prompting the European Commission to organise a conference on the issues at stake. Much of the funding and support for infectious diseases in recent years has gone to the three big killer infectious diseases: HIV/AIDS, Malaria, and tuberculosis. 'The international community is right to focus on preventing and tackling these diseases,' said Mr Bowis. 'But in doing so, it should not forget that at least a billion people - one sixth of the world's population- suffer from one or more neglected tropical diseases. The burden of these diseases, some of which reinforce AIDs and TB, is incalculable.'
Despite a somewhat daunting challenge, some inroads have been made into tackling and raising awareness of the need for more research and development. In 1975, several organisations including UNICEF, the World Bank and World health Organisation (WHO), to name but a few, got together with governments, foundations and companies to set up a special programme for research and training in tropical diseases (TDR) which to date has brought to the market six drugs to treat some of these diseases. In 2003 the 'Drugs for neglected disease initiative' (DNDi) was established to develop drugs and other health tools for people suffering from diseases that fall outside the scope of market-driven research and development (R&D), because they do not constitute a profitable market. It estimates that developing these drugs over the next 10 years will cost around ¿250 million.
'There has been progress but my belief is that we need a new sense of urgency for a wider range of diseases, if we are to remove the very real burden of disease from the economies and peoples of low income countries and ensure that prerequisite for economic health, which is human health,' argued Mr Bowis.
Looking to the European Commission, Mr Bowis welcomed efforts to give more support to research for preventing, diagnosing and treating NIDs. He singled out the important work undertaken by the international scientific cooperation (INCO) programme of Fifth and Sixth Framework Programmes (FP5 and FP6), which together have funded over 50 projects involving public and private partners from developed and developing countries to the tune of ¿70 million on neglected diseases. Indeed, INCO has been one of the few international research funding programmes providing sustained support to tackling specific diseases as well health systems and health service issues of disease control.
Mr Bowis also welcomed the explicit reference in FP7 to neglected diseases and the programme's emphasis on 'translational research', which he said was 'precisely the kind of research which is needed to translate lots of scientific research that has been done in institutes and universities through R&D pipelines of clinical trials into packaged and distributed medicines.'
In addition to FP7, the MEP said that the Commission could think about broadening the scope of the European and Developing Countries Clinical Trials Partnership (EDCTP), which is currently working on developing new and improved drugs and vaccines for HIV/AIDS, Malaria and TB, to include some of the neglected diseases.
'We need to stress the 'D' in 'R&D',' said Mr Bowis. '[...] policies have tended to focus on how to get the research off the ground but have often failed to support the development.' Further emphasis is required on initiatives which involve both public and private partners. 'We must harness the best of the public sector (in the 'R) with the best of the private sector (in the 'D') and apply successful models to the most neglected diseases,' he added
But there is little sense in marketing drugs unless the health systems and infrastructures are in place. 'Health systems in many developing countries are starved of resources,' said Mr Bowis. He underlined the need for the countries themselves to invest more and the international community to complement this with long term support and technical support, including training of health workers at the local level.
Problems related to access would also need to be addressed, such as international and national pricing policies, tariffs, taxation and the implementation of intellectual property rights. On pricing, Mr Bowis referred to the suggestion made recently by Pascal Lamy, Director-General of the World Trade Organization, for developing countries to make use of their right under TRIPS (trade-related aspects of intellectual property rights) to issue 'compulsory licences' for drugs for killer diseases, since no countries had yet done so. 'Just the threat of this could increase pressure on pharmaceutical companies to reduce prices,' surmised Mr Bowis.
Also speaking at the first day of the conference, Octavio Quintana Trias, Director of Health at the Commission's Research Directorate General, said that FP7 would help to create greater synergies between international work on neglected diseases and the rest of health research, since INCO health activities would be embedded for the first time within the larger health programme. 'This way [neglected diseases] will have greater visibility which is always important when dealing with research which needs to be advocated for and needs greater funding,' said Mr Quintana Trias.
'We are starting a long term investment in research on neglected infectious diseases and we look forward to working with you [the stakeholders] in this challenging adventure,' he concluded.