Neglected diseases leave sufferers with few options

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Actor named honorary adviser to health coalition

A handful of diseases plaguing residents of the world’s poorest countries are virtually ignored by modern science, even though they kill hundreds of thousands each year, the former head of Doctors Without Borders in the United States said April 8.

Nicholas De Torrente, an adjunct professor at Columbia University, spoke about the impact of a group of parasitic and bacterial diseases that afflict 1 billion people and kill 500,000 annually. He also outlined the work of a new organization, called the Drugs for Neglected Diseases Initiative, dedicated to finding treatments for the ailments.

De Torrente was at Harvard as part of Harvard Global Health Day 2009, sponsored by the Harvard College Global Health and AIDS Coalition and the International Relations on Campus student groups. The day was part of a weeklong examination of important international issues, such as war, energy, food, and climate change, sponsored by International Relations on Campus and partnering student groups for each of the topics.

Actor and producer James Haven also attended the Global Health Day events, delivering an evening speech in the Kirkland House Junior Common Room after being named senior honorary adviser of the Harvard College Global Health and AIDS Coalition. Haven said he became interested in humanitarian causes in 2006 after traveling with a theater group to Ethiopia, where the group produced arts programs for children.

In his comments, Haven urged students to engage their imaginations in finding creative solutions to the world’s problems, to use modern technology to rally people to just causes, and to hold people accountable for not doing what’s right.

In his talk earlier in the day, De Torrente said the group of “neglected diseases” encompasses 13 major ailments that not only kill 500,000 a year, they also disable many more. Among the diseases are trachoma, the world’s leading cause of blindness due to infection; leprosy; Guinea worm disease; and river blindness.

What links them all, De Torrente said, is that they are all diseases of poverty and disadvantage. Not only are the ailments themselves neglected when it comes to research funding and medical attention, their sufferers are neglected as well: Many of them live in remote rural areas and have little or no political influence.

Because the diseases are parasitic, De Torrente said they are linked to the environment in which people live — living conditions, sanitation, and health status.

The Drugs for Neglected Diseases Initiative has focused its efforts on just three of these conditions: sleeping sickness, transmitted by the tsetse fly and in which the victims slowly succumb to paralysis and death; leishmaniasis, or black fever, which is transmitted by the sand fly and infects 1.5 million a year, causing disfiguring lesions; and Chagas’ disease, which infects 13 million to 15 million a year, killing some in its initial acute phase and more later, through organ failure, after a long latent period.

The available treatments for those three conditions are outdated, of questionable effectiveness, difficult to administer, and painful or sometimes fatal. The problem, De Torrente said, is that because these ailments strike the world’s poorest, little market exists to spur research and development by the world’s pharmaceutical companies.

The Drugs for Neglected Diseases Initiative aims to change that. The group is conducting multipronged research with the aim of producing between six and eight new treatments for the ailments by 2014. In an effort to speed new treatments to market as quickly as possible, the initiative is examining existing drugs that are approved for treatment of other conditions, or approved for use in one country but not another. As that screening is going on, the group is are also researching the effectiveness of new formulations of existing drugs and beginning the long-term effort of finding entirely new treatments.

De Torrente said there needs to be a paradigm shift in how drug research and development are conducted, with more public leadership and a needs-based research and development agenda. He called for new incentive structures for drug development, more funding overall, and more access to existing knowledge, such as that stored in pharmaceutical companies’ compound libraries.

“There is hope, there is progress being made,” De Torrente said.