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EXPO exhibit
Cal alumnus Dr. Andrew Schechtman (right) and other staff doctors consult with "patients" at the Access to Essential Medicines EXPO. Photos by Bonnie Powell

Doctors Without Borders exhibit makes tropical diseases real to Americans
15 July 2002

By Bonnie Azab Powell, Public Affairs

BERKELEY - "Got pills? Millions don't." Those four words, from flyers announcing the 2002 Access to Essential Medicines EXPO exhibit, cut to the heart of a crisis in international health.

Access to Essential Medicines Expo
Wed. and Thurs.
July 17-18
10 a.m. to 6 p.m.
Springer Gateway, Oxford St. (between University Ave. and Center St: map)

Related Events
Film Screening and Discussion:
Your Money or Your Life

Documentary on sleeping sickness and HIV/AIDS in sub-Saharan Africa.
Wed., July 17, 7 p.m. Dwinelle Hall, Room 145

Working in a Conflict Zone: A Doctors Without Borders volunteer's perspective
Rose Hoban, RN
Thurs., July 18, 7:30 p.m.
International House Homeroom,
2299 Piedmont Ave.

The exhibit transforms the distant reality of countless individuals living without essential medicine into a personal experience. It replaces "millions" with the faces and plights of people suffering from five neglected but treatable diseases: malaria, kala azar, tuberculosis, sleeping sickness and HIV/AIDs.

Sponsored by Doctors Without Borders, the touring exhibit will arrive at the University of California, Berkeley, Wednesday, July 17. See the yellow box to the right for details.

At the exhibit, you start out by spinning the "Wheel of Misfortune" in a tent surrounded by tsetse fly traps. A spin of the wheel dictates your vicarious fate. If you're unlucky enough to draw sleeping sickness (or trypanosomiasis), you're handed a purple card that introduces you to Bianga, a Ugandan woman who begins to feel weak shortly after an insect bite.

You learn that after 10 months, Bianga becomes too ill to work in the fields or fetch water for her 6-year-old child. As the parasite deposited by the tsetse fly makes its way through her spinal fluid to her brain, she starts to behave erratically and eventually lapses into a coma.

"How lucky you are"

Inside the 48-foot trailer for this main exhibit, photos of Bianga and her Ugandan village are flanked by the faces of others who drew a different fate. The gallery includes a Cambodian woman whose strain of malaria has become resistant to chloroquine, the most common treatment; a Georgian who says her recurrent bouts with tuberculosis have left her feeling "destroyed inside"; an Ethiopian man with kala azar, a debilitating illness somewhat like malaria but spread by the sandfly; and Roderick, a Malawi teenager with AIDs who was lucky enough to be treated with antiretroviral therapy free of charge.

Wheel of Misfortune
Spinning the Wheel of Misfortune determines which disease visitors are assigned.

To a background soundtrack of beating drums and children singing, you read about the medicines currently available to Bianga and the others.

Today, Bianga has a hope of survival. Had she been diagnosed with sleeping sickness several years ago, she would have had little chance of emerging from that coma. The only medication then available for the later stage of the disease, melarsoprol, is an arsenic derivative developed in 1949 and so lethal that it not only corrodes its plastic syringes, but kills one in 20 patients outright. The drug eflornithine, more effective and much less risky, was deemed unprofitable to produce and discontinued in 1995 by its manufacturer. When eflornithine was found to have cosmetic applications — it helps get rid of facial hair — production was restarted in 2001. Under pressure from Doctors Without Borders, quantities of the drug are being made available for treating sleeping sickness.

"Now you know how lucky you are to live in America," a visitor quietly admonished her two young grandchildren during the EXPO's stop last weekend in Palo Alto.

Dr. Andrew Schechtman, a U.C. Berkeley alumnus (Psychology/pre-med, '89), volunteers in the exhibit's final section, in which staff give visitors their "prognosis." Through Doctors Without Borders (also known as Medecins Sans Frontieres), Schectman treated patients like Bianga in northern Uganda for six months. He found that roughly one out of five of his patients were resistant to even the painful melarsoprol, perhaps from incomplete previous treatments. "And yet, he says, "I didn't have anything else to offer them."

The World Health Organization (WHO) had a small supply of eflornithine, and Dr. Schectman would call the city every day to see if some had arrived. "Finally I got in enough to treat 20 patients, out of my list of 100 who had shown resistance to the other drugs. I called back in an 8-year-old girl ... but not a 50-year-old man who had additional disabilities."

Despite difficult decisions like these and a lack of resources, Dr. Schechtman has just quit his medical practice to return to the field, probably in Nigeria.

"Here in the U.S., there are two or three doctors who could easily fill my shoes," he explains. "In Uganda, I was the only doctor for 40 miles. I was saving lives every day. It's unquestionably the best thing I have done with my career."

The exhibit details which medicines are available to treat five diseases, and how effective they are.

A prescription for change

At the exhibit, there are petitions to sign urging attention to the lack of medicines, pleas that are directed to President Bush and the pharmaceutical manufacturers. But the Access to Essential Medicines EXPO's goal is more than just raising public awareness of the problem. It is pushing governments, WHO, and the drug companies to lower the prices of existing medicines — for example, a six-to-eight-month treatment to treat drug-resistant tuberculosis. Under pressure from Doctors Without Borders, the price of that course has dropped from $15,000 per patient to $3,500. Even at that cost, it is still out of reach for most of the world's population.

Doctors Without Borders also wants abandoned drugs like eflornithine brought back into production, and wants to encourage research and development for diseases that affect only the poor. The group's literature includes this shameful statistic: "Of the 1,393 new chemical entities developed from 1975 to 1999, only 11 were for the tropical diseases, five of which were the result of veterinary research."

"Our message is not meant to inspire guilt or pity," says Brigg Reilley, another of the EXPO's volunteer doctors. "It's about changing the system, whether it's through technology transfer that would enable these countries to develop their own treatments; a tax on lifestyle drugs to help fund research (the way cigarette taxes fund healthcare); or using the carrot-and-stick approach, say, where pharmaceutical companies that develop tropical-disease drugs get their patents on others extended for a few years."

Dr. Robert Hosang, a lecturer at the U.C. Berkeley School of Public Health's International Health Specialty and Interdisciplinary Studies programs, was on the committee that pushed to bring the exhibit to campus. "Doctors Without Borders is one of the foremost organizations working in international public health, because they're dealing with not just the medical issues at hand, but the political," Dr. Hobang explains. "Their main interest is in producing an environment in which there's better funding of drugs, and their focus on that issue has helped bring it forward. This year the international community is seriously trying to address the issue of drug availability."

Invoking the demonstrations against apartheid that Berkeley students launched while he was at Cal, Dr. Schechtman says, "What we need, and what we're trying to do, is inspire a grassroots, Berkeley-style movement. There's a lot we can change."

For more information, drop by the Access to Essential Medicines EXPO interactive exhibit on July 17 and 18 at Oxford Street's Springer Gateway, or at one of its other stops.

Doctors Without Borders

Campaign for Access to Essential Medicines

Online petition for Access to Essential Medicines