One shouldn't have to be a Rockefeller to have access to life-saving medicines.
12 June 2003
Ironically, I first noticed signs of my illness - chronic myelogenous leukemia - while on a visit to Uganda with Médecins Sans Frontières, observing their management of sleeping sickness in the small northern town of Omugo.
A few years ago, I would be dead by now.
In October 2000 I was diagnosed with chronic myelogenous leukemia, a rare and deadly form of cancer. At that time most patients could anticipate a painful death following several uncomfortable years of decline. The only treatment options were relatively toxic drugs like interferon, and the only hope for a cure was a stem cell transplant - for which just a fraction of patients qualified.
Six months after my diagnosis, however, the Federal Drug Administration approved a drug called Gleevec, which changed everything. The product of years of publicly and privately funded research, this new agent all but eliminated the cancer that was killing me. I may or may not be cured, but shortly after I started treatment, my leukemia was rendered nearly undetectable. I have felt perfectly healthy ever since.
In short, I survive and thrive because of a pill.
I am grateful for this spectacular piece of luck, but at the same time I have to ask: What kind of a world am I surviving into?
Ironically, I first noticed signs of my illness while on a visit to Uganda with Médecins Sans Frontières, observing their management of sleeping sickness in the small northern town of Omugo. Doctors there were forced to treat late-stage sleeping sickness with an arsenic-based drug, melarsoprol, developed in 1949. Melarsoprol is excruciatingly painful to administer, kills one in 10 patients, and fails one in five. A more effective, less toxic drug, eflornithine, had been discovered several years earlier, but its production was halted because the manufacturer saw no profit in providing medicines to desperately poor people.
Sleeping sickness was neglected by the market, but by a remarkable stroke of luck a far more lucrative use for eflornithine was found - removing unwanted facial hair in women - and so it is back in production today.
Patients suffering from other neglected diseases in the developing world are not so fortunate.
Fourteen million people die from infectious diseases each year, an overwhelming 97 percent of them in the developing world. More people die of malaria each year - roughly 2 million - than live in my home state of Maine; tuberculosis, a disease we all but conquered last century, claims an additional 2 million. And with more than 8,000 deaths per day, the HIV/AIDS pandemic wipes out millions more.
Some of these diseases are curable, and some are treatable, but effective medicines are unavailable to those who are dying. In some cases drugs are too expensive or no longer effective while in others they are too toxic or production has lapsed.
Research and development for diseases that affect poor people has ground nearly to a halt. Of the 1,393 new drugs developed since the 1975, for example, only 16 were for tropical diseases and tuberculosis. Of those, five were the result of veterinary research. Industry researchers and manufacturers have neglected these diseases for one reason only: There's no money to be made. Meanwhile, considerable investments are made in lifestyle drugs for conditions such as male pattern baldness and obsessive shopping, again for one reason alone: It pays. Despite considerable agreement on the failure of the market to deliver health tools for the world's poor, governments have not developed meaningful and viable global policies that ensure needs-driven research and development for neglected diseases.
I am glad that a treatment was found to prolong my life, but at the same time I find it troubling to live in an age that privileges my life over others for no other reason except my (or rather, my insurance company's) ability to pay. One shouldn't have to be a Rockefeller to have access to life-saving medicines.
Forces besides those of the market must be harnessed to determine which diseases are studied and how life-saving medicines are researched, developed, manufactured, and priced. The current system of research and development is failing the poor, and we must change course dramatically if we hope to turn the tide against infectious diseases that claim millions of lives every year. Both government action and global cooperation are needed to connect the staggering health needs around the globe with the astonishing capabilities of the scientific community.
The US and other governments must initiate serious discussions leading to a global treaty on essential health R&D. My experience with chronic myelogenous leukemia has only deepened my conviction that such a fatal imbalance must be remedied - and without delay, because for millions of people, time is running out.
This story ran on page A23 of the Boston Globe on June 12, 2003.