Four years ago, when he accepted the Nobel Peace Prize on behalf of Doctors Without Borders, James Orbinski made a solemn promise.
He pledged that his organization would use its award money to develop drugs for killer diseases ignored by the pharmaceutical giants. It would prove that human decency is as powerful as the profit motive.
Last week, the Toronto doctor made good on his commitment.
Orbinski flew to Geneva to launch the Drugs for Neglected Diseases Initiative, a $50 million program linking medical researchers at universities, public hospitals and government laboratories around the world in a quest to find treatments for such deadly illnesses as sleeping sickness and drug-resistant malaria.
These scientists will work outside the commercial system. They will treat knowledge as a public good, not a marketable commodity. Their goal will be to save lives, not make money.
"Politically this is vitally important," Orbinski said. "For the first time in recent history, there is a recognition that drug research and development is a public responsibility. It cannot be left to the marketplace.
"From a practical perspective, it means new medicines can be created at much lower cost."
Most of the diseases the researchers will focus on are unfamiliar to Canadians. That is because they affect primarily poor people in the developing world.
Sleeping sickness, for instance, kills 65,000 people a year in sub-Saharan Africa. It is transmitted by the tsetse fly. Symptoms range from swollen lymph nodes and severe headaches to psychotic disorders. It is currently treated with an arsenic-based medicine that is painful and not always effective. Left untreated, it inevitably leads to death.
Chagas disease threatens a quarter of the population of Latin America. The infection, which is spread by "kissing bugs," takes up to 20 years to incubate. Victims eventually die of heart failure or enlargement of the digestive tract. There is no known cure.
Kala azar, a tropical disease spread by the sand fly, affects 500,000 people a year in India, Bangladesh, Nepal, Sudan and Brazil. It is characterized by fever, weight loss, enlargement of the spleen and liver and emaciation. The drugs currently used to treat this disease are expensive, sometimes toxic and often ineffective.
Malaria, which health workers once thought they had under control, has emerged in new drug-resistant forms. It can be treated with a combination of drugs, but these medicines are far too expensive for most African countries. The mosquito-borne disease kills one child in the developing world every 30 seconds.
The global pharmaceutical industry has little interest in these diseases. Those who suffer from them can't afford to pay for new medicines.
Western governments are equally derelict. They don't regard these illnesses as a threat to the industrialized world.
The result: A mere 10 per cent of the global health research is devoted to the diseases that affect 90 per cent of the world's people. Doctors without Borders calls this a "fatal imbalance."
Orbinski, who works as a research scientist at St. Michael's Hospital and the University of Toronto, has spent the last two years building the global network of researchers that officially came into existence in Geneva last Thursday. The six founding partners were Doctors Without Borders, the Pasteur Institute in France, the Indian Council of Medical Research, the Medical Research Institute of Kenya, the Ministry of Health of Malaysia and the Oswaldo Cruz Foundation of Brazil.
The headquarters of the new not-for-profit organization will be in Geneva so that it can work closely with the World Health Organization.
But scientists all over the world — including leading researchers in Canada — will be involved in specific projects.
There is a role for the drug companies as well. Two pharmaceutical giants — GlaxoSmithKline and Merck — have offered to provide researchers involved in the initiative with access to their molecular libraries.
In the coming months, Orbinski, who is committed to the project although he no longer has a formal position at Doctors Without Borders, will wrestle with the difficult task of drawing up a research agenda.
That means deciding which diseases to tackle first, setting ethical guidelines for the development of drugs in the public domain and ensuring that knowledge is shared throughout the non-profit network.
Compared to SARS, West Nile virus, cancer, hypertension and even male pattern baldness, the diseases that Orbinski and his colleagues seek to fight will get only a tiny share of the world's attention and resources.
But at least they will no longer be beyond the reach of cutting-edge science.
The charter for the new coalition was signed in the same room where the International Red Cross, the world's first humanitarian organization, was founded 140 years ago.
"It was a deeply symbolic co-incidence," Orbinksi said. "It said something important about what the face of humanitarianism and science should look like in the 21st century."
Carol Goar's column appears Monday, Wednesday and Friday in the Toronto Star.
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