Ten little-known but debilitating diseases will be high on the agenda of the world’s pharmaceutical chiefs, health ministers and donor governments after they pledged their support for a World Health Organization (WHO) initiative to wipe out guinea worm, river blindness, trachoma, leprosy, bilharzia and intestinal worms, among other “neglected” diseases.
Caroline Anstey, a managing director of the World Bank, told the delegates at the meeting in London: “We are not really talking about neglected diseases; we are talking about neglected people. I think that is very key, and it is all about how and if and whether we value them.”
The participants on 30 January pledged to support the WHO programme for controlling or eliminating these diseases by 2020, promising more research and an increased supply of free drugs.
In turn, donor governments and private philanthropists, including Bill Gates, promised to support the delivery of the drugs and strengthen the health systems of the affected countries to run control and eradication programmes. Health ministers from Mozambique, Bangladesh and Brazil attended the meeting.
Working on these diseases has been frustrating because they are not incurable. Drugs to treat them exist. But these drugs have been too expensive or in short supply, or only available in a form that is difficult to use. The key to this initiative is that the organizers, especially Gates, have brought the drug companies on board.
“The drug suppliers are willing to be generous,” he said, “But they need to know there is a road map which comes from the WHO; they need to know that there is delivery funding which comes from people like DFID [UK Department for International Development] and USAID; and they need to know that the countries involved are going to orchestrate their health systems to make sure that all the drugs really get to the people in need.” The Bill and Melinda Gates Foundation pledged US$340 million over the next five years, partly to fund research into better treatment and partly to support delivery programmes.
Gates managed to persuade the companies to do things they would never normally consider, like giving away their products for nothing. Haruo Naito, president and CEO of the Japanese company Esai, which produces drugs for Lymphatic Filariasis, commonly known as Elephantiasis, set out the problem: “Our company is going to spend something like $35 million for this project. How can we persuade our shareholders? Well, we tell them it is a long-term investment for the people, for societies and for the economies of developing countries, to lift them up to become middle-income countries in the future.”
The issue of collaborative research was even trickier. Christopher Viebacher, head of Sanofi, which is researching improved drugs for sleeping sickness, said: “We are competitors. It’s not that easy for us to work together commercially. And now you are talking about research and development, which is really where the core secrets of companies are. Sharing our libraries of compounds is extraordinarily difficult and it is only because of the great need that we have been able to get together, and this is where Bill Gates has played such a critical role in catalyzing it.”
However, there were warnings that even an unlimited supply of free and suitable drugs would not in themselves be enough. Daniel Berman of Médecins sans Frontières said that while his organization was delighted these neglected diseases were finally getting more attention, “We are concerned that the challenges for some of these diseases are being glossed over.” MSF cited the example of sleeping sickness, which was virtually eliminated in the early 1960s but returned with a vengeance in the 1990s as elimination efforts were not sustained. It wants to see more emphasis on programme support and surveillance capacity in affected countries.
And in a letter to the London-based medical magazine, The Lancet, two academics, Tim Allen of the London School of Economics, and Melissa Parker of Brunel University, raised another issue – the practical problems associated with mass medication. The control or eradication of many of these diseases would entail treating whole villages, even those not infected, sometimes many times over, to wipe out the pool of infection. They found people in Tanzania, where this kind of programme was introduced, were suspicious and often hostile.
“After multiple rounds of mass drug administration for Lymphatic Filariasis, the vast majority of the people interviewed… were unaware of the link between the disease and mosquitoes, and at best had a very limited understanding of the rationale for mass treatment. They asked why people with no visible symptoms should take tablets… It is hardly surprising that rumours circulate about the real purpose of the drugs.” Some of those involved in administering the programme were chased and beaten and had to be rescued by police.
“The provision of free and subsidized drugs,” they conclude, “creates a window of opportunity to make a massive difference. But the availability of tablets is not enough.”