Thursday, December 21, 2006

A Damn Fine Woman

She's Victoria Hale, a woman who threw away the American Dream because she needed much more. She was profiled in the latest edition of Spiegel:

"Victoria Hale's story began nine years ago in San Francisco, at DNA Drive Number One at the headquarters of a company called Genentech. Genentech, a legend in the industry and in the United States, develops drugs using genetic manipulation, and when it was founded in 1976 it was the first company whose researchers played God, essentially giving evolution a kick start. The company attracted and continues to attract the best and the brightest, the ambitious and the devout, from all over the world.

" the summer of 1998, Victoria Hale went to her boss and told him that, as much as she appreciated everything Genentech had done for her, she was resigning. Her boss was surprised, and so were her colleagues, and her family was speechless. Why was she throwing away her career?

"The global pharmaceutical industry spends about €90 billion a year on research, and 90 percent of this enormous sum is used to treat the illnesses and minor discomforts, cosmetic and erectile problems of less than 10 percent of the world's population. Of the 1,556 drugs that were invented and marketed worldwide between 1975 and 2004, only 21, a paltry 1.3 percent, have been used to treat diseases that primarily affect the poorest people in the world.

"In Africa, Asia and South America -- the world's poverty zones -- almost three million people die every year of tuberculosis and malaria, and about 170,000 are ravaged by diseases that are virtually unknown in the more affluent regions of the world. Chagas's disease, for example, claims 13,000 lives each year. Sleeping sickness kills 50,000, dengue fever 21,000, bilharziosis 15,000 and black fever 60,000 annually. Next to malaria, black fever is the second-most severe parasitic disease.

"These were the numbers and facts that prompted Hale to quit her job at Genentech. She felt that by continuing to work at the company she would have made herself complicit in developing drugs almost exclusively for the world's more affluent citizens. To this day, she can only conjecture why she was the one who was so affected by this sense of injustice. Perhaps it had something to do with her childhood. Hale was a sickly child, often bedridden, who spent an inordinate amount of time in doctors' waiting rooms. Perhaps it was precisely because she had suffered so much herself that she could no longer ignore the suffering of others.

"Hale spent the next year traveling to conferences in Europe, North America and Asia. She spoke with experts, with epidemiologists, searching for the right infectious disease, searching for the solution to her problem. She wrote lists to keep track of her thoughts. Malaria was too big, and the financing would be impossible. The same applied to tuberculosis. Sleeping sickness was already being addressed by the aid organization Doctors Without Borders.

"Finding the right killer wasn't an easy task.

"After about a year, Hale's savings and those of her husband, about $100,000, had been spent. She took out a loan for $315,000. Her husband agreed, even though he had doubts about his wife's prospects for success.

"In the fall of 1999, at a conference in Antwerp on drug resistances in tropical diseases, Hale found her infectious disease -- and the corresponding cure.

"The speaker, a physician named Shyam Sundar, knew more about Black Fever than anyone else. He had been fighting it for more than 20 years. Hale approached Sundar after his presentation. She was impressed by his outrage over an injustice that leaves most people cold. She saw something of herself in this Indian doctor.

"Black fever, or visceral leishmaniasis, always begins with a bite from a tiny insect, the sandfly, a bite victims rarely even feel. Jokhran Bhagat, a farmer and father of two sons, was one of these victims.

"A female sandfly pierced Bhagat's skin and drank his blood to feed its eggs. It left behind a small, dot-shaped bite mark and a few inconspicuous single-celled organisms that entered Bhagat's body through the puncture site. The sandfly's bite marked the beginning of an invasion.
The intruders slowly drifted along Bhagat's bloodstream waiting to be noticed. In its chosen host, the human body, this parasite's survival strategy is to be attacked and encased by phagocytes, or "devouring cells." But the parasites, instead of being digested by the human immune system's killer commandos, establish a foothold inside those devouring cells and use them as a site to breed and transform themselves. Once the phagocytes have served their purpose, the parasites burst out to conquer new cells.

"A few days after the sandfly bite, Bhagat complained that he felt unwell and developed a fever. By this time the parasites had developed a flagellum, or means of propulsion, and were heading for his bone marrow, liver and spleen. They continued to replicate relentlessly, attacking healthy cells and intact organs and transforming them into production sites for armies of microorganisms.

"Bhagat's fever began to rise. He became weak and lost his appetite. After nine months his body capitulated and became grotesquely swollen, and Bhagat died in pain.

"The only drug that was effective, inexpensive and devoid of serious side effects was paromomycine, but it was unavailable. That was the reason for Sundar's outraged speech at the Antwerp conference.

"Paromomycine was developed in the mid-1950s by an Italian company, Pharma Italia, not as a treatment for Black Fever but as a general purpose antibiotic. Its life cycle followed that of many drugs. It was sold successfully for a number of years but was eventually displaced by newer, more effective drugs.

"In the mid-1980s, researchers discovered that paromomycine could be a suitable cure for Black Fever. But no one was interested in paying for the expensive tests and studies needed to ensure that paromomycine could be used safely and reliably to treat Black Fever. The dying continued in Bihar.

"Hale spent a week in India before returning to San Francisco, where she set up an office in her house to begin her fight against the rest of the world. She had found her epidemic and her drug.

"In the global humanitarian aid business, roles are clearly defined. The job of aid organizations is to submit requests and distribute aid. The pharmaceutical industry produces and supplies the necessary drugs and equipment -- when it can and when it is willing to do so.

"But the industry is rarely willing, because in most cases it is the companies that bear the costs. Most of them prefer to shun the expense. So do aid organizations, who tend to confine themselves to distributing the drugs the companies hand them.

"Hale's plan was to expand the system by adding a third factor -- herself.

"She wanted to establish an aid organization that operates like a pharmaceutical company or, to be more precise, like a non-profit pharmaceutical company. The desire to help, and not to earn profits, would be the company's driving force. Hale wanted to build a company that would do what she believed the industry ought to be doing.

"Hale called her non-profit organization the Institute for OneWorld Health, dubbing it the "first non-profit pharmaceutical company in the United States." She developed a business plan and sent it to potential donors.

"One of her letters ended up on the desk of Bill Gates, the co-founder of Microsoft, a multi-billionaire and the world's biggest philanthropist. Gates liked the idea and sent Hale a check for $4.7 million as a first installment. That was the beginning. Once the man who spends almost as much of his own money on fighting poverty as the World Health Organization had expressed his confidence in Victoria Hale, others followed, including the Chiron Foundation, the investment bank Lehman Brothers, the Skoll Foundation and many others.

"Hale established her company, began searching for office space and hiring employees, first 10, then 20 and finally 50. She needed them to ensure that the approval procedure for paromomycine satisfied international standards. It was a bureaucratic nightmare, and to tackle the task Hale enlisted the help of the World Health Organization (WHO).

"A large-scale program to attack black fever is scheduled to begin next year. The Indian government, which is coordinating the attack, has publicly announced its goal of eradicating the disease in India by 2010. The target date for eradication in neighboring Bangladesh and Nepal is 2015.
In a multi-pronged approach, an insecticide will be used to control the sandflies, local doctors will distribute the medication and the three countries' governments will subsidize prices. The treatment will likely consist in a combination therapy that will include both paromomycine and impavido.

"This time it seems as though there will be no losers, only winners who will be forced to share the spotlight. For once, here's a story that looks set to have a happy ending. "

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