It just seems like an ordinary headache at first, with maybe some joint pains and fever. It’s the sort of thing most people would expect to get over pretty quickly. But then, after a while, things get a lot more unpleasant. You fall asleep at the strangest times, you are confused, and you get intense pains and convulsions.
By now it’s serious. If you don’t get treatment, your body begins to waste away. If you’re not asleep you are nearly unconscious most of the time. Eventually you slip into coma. And then you die.
This is human African trypanosommiasis, better known as sleeping sickness. It affects 500 000 people in 36 countries and 60-million are at risk. If men and women in the UK got it, by now there would be a painless and reliable drug to cure it. As it is, many Africans who are exposed to parasite-carrying tsetse flies will suffer a painful death from this disease, because scientists have not put their minds to the hunt for a cure, and drug companies have not thought it worth adding to their balance sheets.
Sleeping sickness is not the only neglected disease in the world. The bulk of the billions spent by the pharmaceutical industry on researching, developing and marketing drugs goes on the problems of the people who can pay. These are businesses after all, intent on making a profit. So the big money goes on Viagra to restore people’s sex lives, drugs to lower cholesterol and antidepressants. A Lancet study last year revealed that between 1975 and 1999, out of 1,393 new medicines brought to market, only 16 were for tropical diseases including tuberculosis.
Médecins sans Frontières, the Nobel prize-winning charitable organisation that sends volunteer doctors to emergencies throughout the world, has pressed for more and better drugs to treat the diseases of Africa and other poor countries for years. Their doctors did not enjoy administering the 50-year-old arsenic-based drug melarsoprol to sleeping sickness patients. Not only does it cause them pain — it is so toxic that it kills one in 20 of them.
There is another drug. Eflornithine’s ability to rescue people from the later stages of sleeping sickness was discovered by accident. It was so impressive at pulling people out of coma that it became known as the Resurrection drug. But the manufacturer stopped making it in 1995, because it was not profitable. Africa, where the average wage is less than a dollar a day, doesn’t have a lot of money to spend on healthcare. Eflornithine continued to be produced in the rich north, however, because it proved to be a useful ingredient in hair-removing creams.
MSF, together with the World Health Organisation, led a successful campaign to get the production of eflornithine for sleeping sickness re-started. In 2001, manufacture began again with an undertaking to continue for five years and to hand over the technical know-how to any company that would produce it in the long-term.
This was a significant victory, but it’s just one drug for one disease. And no drug is a miracle cure. Many African diseases are caused by parasites which become resistant to drugs that originally worked well. Malaria is the prime example. Cheap and readily available chloroquine, which used to be the drug of choice, is now virtually useless in southern and eastern Africa.
So MSF is trying to promote a sea-change in the system, to provide inspiration and incentives to those whose research could save millions of lives and to find relatively cheap ways of getting drugs to market. In July, with the backing of the WHO, it brought together a number of health and research organisations in Brazil, France, India, Kenya and Malaysia to form the Drugs for Neglected Diseases Initiative.
The DNDi is a not-for-profit venture, which aims to encourage researchers in academic institutions and scientists in pharmaceutical companies to dust off the files of any work on a drug that could have potential against sleeping sickness or malaria but did not look likely to get to clinical trials because it was not potentially profitable. The initiative will raise money from public funds and private donors to take those embryo medicines through the development process to the point where they can be licensed and then manufactured — most likely by generics companies in the developing world.
The budget is $250-million over the next 12 years and the initial focus is on three particularly neglected diseases — sleeping sickness, kala azar and Chagas disease — although not to the exclusion of others. So far, says Bernard Pécoul of MSF, they have seven projects on the go, which they hope to increase to 12 next year. ”It is going well,” he says. ”We are making clear progress and are able to develop some partnerships. But we are still looking for good candidates. The big difficulty now is to get access to good candidate drugs. We are trying to stimulate universities and pharmaceutical companies to try to identify them.”
University academics know a lot about the malaria parasite, for instance. They have done the basic research, but have not applied it. MSF wants them to develop hypotheses for ways to stop the parasite causing disease. And they want pharmaceutical companies and universities to look back through their data for useful compounds discarded as unprofitable.
”One of the big challenges is to get access,” says Pécoul. The pharmaceutical companies have kept all their drugs — potential blockbusters and unwanted compounds alike — a closely guarded secret. The DNDi proposes to publish details of any drugs it develops so that anybody can make and distribute them to patients in poor countries. Nothing less than a fundamental change in the ethos of drug research will be needed if the initiative is to succeed. – Guardian Unlimited Â