Curing Medicine's 'Orphans'

By Sebastian Mallaby
Monday, December 19, 2005

Six years ago a mosquito-borne disease called West Nile virus arrived in the United States. It caused inflammation of the brain and spinal cord, killing perhaps one in every 100 people who developed symptoms; this year there have been 85 American fatalities. Not surprisingly, the nation's medical high command has sprung into action. The Centers for Disease Control and Prevention and the National Institutes of Health have been handed millions to spend on West Nile virus, up from pretty much nothing before the disease reached the United States.

Now consider Japanese encephalitis, a cousin of West Nile virus that is also borne by mosquitoes and also causes inflammation. Japanese encephalitis kills one in three of its victims rather than one in every hundred; it leaves many survivors with brain damage. But because this vicious variant hasn't reached the United States yet, you probably haven't heard of it. Congress isn't spending much on Japanese encephalitis, and never mind the fact that it kills many more people than the West Nile sort.

Japanese encephalitis is not alone, of course. There are many "orphan" diseases -- "orphans" in the sense that people in rich countries aren't concerned with them. Raise your hand if you've heard of schistosomiasis, which causes organ failure and infects 200 million people in the poor world. Or what about rotavirus, which causes diarrhea and kills almost 500,000 kids annually. Or visceral leishmaniasis, which causes enlargement of the spleen and liver and kills a similar number each year. There are many such orphans, but Japanese encephalitis could be said to stand for all of them.

Japanese encephalitis has spread westward and southward across Asia, so it now strikes from Japan to India to Australia. About 50,000 cases are reported annually, according to the World Health Organization, but this is a meaninglessly low figure; the essence of orphan diseases is that there's not much money to do anything about them, so there's little incentive to report cases. Every so often an epidemic occurs and suffocating children engulf a local hospital. There aren't enough health workers to pump air into their small bodies, let alone file data to international scorekeepers.

Many orphan diseases are beyond the reach of medicine, because there's no incentive to invent fixes for people who have no purchasing power. But for years Japanese encephalitis appeared even more desperate. An expensive vaccine made from mouse brains protected rich people, destroying the one hope of galvanizing pharmaceutical research.

This dismal situation prevailed late into the 1990s, and if it hadn't been for two heroic scientists it might have carried on. The first hero was Scott Halstead, a doctor working for the Rockefeller Foundation who discovered that, in addition to the expensive mouse-brain vaccine, there was in fact another option. In the 1980s China had developed a much cheaper vaccine and had since used it to immunize 200 million people. But the world had not bothered to get this lifesaving technology out of China to others in need.

Halstead waged a lonely fight against this scandal, but bureaucratic complacency kept blocking his advance. The WHO doubted that useful medical innovation could come out of China, and it refused to bless the vaccine's broader deployment. Halstead published articles in the Lancet and other Western scientific journals, showing that the Chinese vaccine was both safe and effective; in 1999 he flew 200,000 doses to Nepal just before an outbreak, and demonstrated conclusively that children could be protected by a single shot. In the face of this exciting finding, the WHO shrugged lazily and stuck its fingers in its ears.

The following year an American doctor named Julie Jacobson visited India during an outbreak of Japanese encephalitis. Jacobson was working for PATH, a Seattle-based group that battles the health challenges of poor countries, but she had barely heard of the disease that she saw filling the local hospital, and she resolved to find out more. She learned of the unused vaccine from Halstead, and became creatively outraged. In 2003 she got a grant from the Bill & Melinda Gates Foundation to identify all obstacles to the elimination of Japanese encephalitis and beat all of them down.

Two years on, the Chinese vaccine is emerging from its bondage. Jacobson has negotiated a reasonable price from China's supplier and lobbied the WHO to certify Chinese manufacturing facilities; meanwhile, she has persuaded India and Sri Lanka to stop waiting for the WHO to bless the Chinese production facilities and to go ahead on their own. Because a vaccine is available, the virus is being tracked more carefully. Once almost totally neglected, the orphan is finally getting a real home.

This revolution is replicable. SARS and avian flu have reminded the rich world that distant viruses can harm them. Thanks to the energy of the young Gates Foundation, there's a systematic effort to beat down scientific and bureaucratic obstacles until the top killer diseases are tackled -- though, as the recent frustrations on rotavirus demonstrate, the obstacles are serious. More than 1 million children could be saved each year by deploying vaccinations that already exist, and a similar number could be saved by vaccines that are being developed. "This is the most exciting time I can remember," Jacobson says.

© 2005 The Washington Post Company