Stateside: "I'd like to give you a disease."
"I'd like to give you a disease."
As opening lines go, I've heard better but the tall dark handsome stranger with the big rig and the twinkle in his eye looked worth the gamble. "OK," I said. "Let's see what fate has in store for you then," said my Doctor Without Borders as he spun the Wheel of Misfortune that was standing at the entrance to their travelling Expo.
I got kala azar, a disease that is 100 percent fatal if not treated. Up to 500,000 people get this sandfly-borne disease each year. The treatment for it was developed in the 1930s, is expensive, difficult to administer and requires hospitalisation for one month. Many of the people affected live in conflict zones like the southern Sudan, where the hospitals are often caught in the fighting and it is difficult for medical teams to reach patients.
Moreover, resistance to SSG (sodium stibogluconate) is on the rise and the few other drugs that can be used are highly toxic and very expensive. Clinical tests in India are proving encouraging for two drugs but these results have yet to be confirmed, and the drugs have yet to be registered and made available. Until then, thousands will continue to die premature deaths - from lack of treatment.
The preceding paragraph was pretty much copied straight from the little card I was given describing my disease, but I trust Medecins Sans Frontieres will not mind my using their words. After all, what do I know about this and the other four diseases they're highlighting in their Expo: malaria, sleeping sickness, tuberculosis and HIV/Aids? MSF is right in the midst of these human disasters, and the doctors touring with the 18-wheeler have all been volunteers in the field.
Once you've been assigned a disease and given the explanatory card about it, you go into the container on the back of the big rig and follow the information panels for your disease. The card and explanatory panels are colour coded to make it easy to limit the amount of human misery you subject yourself to witnessing. Despite this attempt to get you to own a particular disease and empathise with a particular case history, it was difficult not to pass at least a cursory glance over the other panels.
Emerging from that part of the display, you enter a consulting area. "Your stools are trickly," said my treatment doctor as he waved for me to sit down. "Pardon? That's getting a bit personal isn't it?" I laughed, thinking he'd seen the coloured card in my hand and was launching straight into a description of my symptoms. Then, as I perched myself on the wobbly seating, I realised he'd said, "These stools are tricky." Once I explained my confusion he said that, in fact, the opposite would be the case with kala azar.
After discussing with me what my prognosis was and what my treatment options were, he also asked me to fill in two ready-printed petitions. One is to President Bush and the other is to members of PhRMA (Pharmaceutical Research and Manufacturers of America). The first asks that the US government "demonstrate global leadership by adopting appropriate policies and devoting financial and human resources to develop new medicines for neglected diseases." The second asks that US pharmaceutical companies "play a key role in the development of new medicines for neglected diseases."
My Doctor Without Borders was quick to stress to me that the organisation isn't trying to force pharmaceutical companies into doing anything or to have the government force them into doing anything. It's just that the profits (if any) from researching, developing, and manufacturing pharmaceuticals for the world's poor are miniscule compared to the profits that can be obtained from lifestyle drugs like Viagra and Rogaine. Why not arrange for some kind of trade-off, whereby a certain portion of those profits are earmarked for research into cures and treatment for neglected diseases? That is just one scenario MSF suggests at their website for the Campaign for Access to Essential Medicines.
Well, just like in a real consulting room in a real medical clinic (even here in the US) I had to hustle on out the door before all the questions I wanted to ask could be answered, so many people were coming through from the exhibition. Back out on the sidewalk I signed my petitions and put them in the postboxes, read some of the information cards that had been put up besides the tse-tse flytraps, and walked on home with my petty concerns soundly slapped back into some perspective.
I recalled a ride I once had when I was hitch hiking from Stratford back to Wellington. The young Kiwi who picked me up said he had invented and patented something that earned him less than 1 cent for every thousand sold, yet those royalties had still made him a millionaire. He'd invented an electronic tag for wool bales, which could not be tampered with once the inspector had attached it, thereby making it very difficult for fraudulent sales of low-grade wool at high-grade prices to take place. So many thousands of wool bales are inspected every day, that it didn't matter his profit on each tag was tiny.
Surely there is a place in this world for pharmaceutical companies happy to accept a tiny profit on a very large scale? Surely there's a place for the taxpayers of this world - through their governments - to help public research institutions and universities fund the necessary research? "Let's Get Human About Medicines", like the petition postcard says.
The United States MSF website is at http://www.doctorswithoutborders.org
The international one is at http://www.msf.org
Friday, July 26, 2002