Four years ago in Bolivia when I volunteered in a regional hospital, I saw a disease that regularly destroyed the hearts and bowels of rural villagers every day. AIDS? No, nothing sexy like that. Malaria? Nope. Tuberculosis? No, not anything in the Global Fund. Or that receives any attention.
Chagas disease kills 14,000 people a year and infects 10-15 million, and it turned 100 years old this year. Sadly, there has been little progress in the research and treatment of the disease in these one hundred years since Brazilian doctor Carlos Chagas discovered it. There are two drugs for the disease, both over thirty years old. Both have highly toxic side effects (but not lethal) akin to cancer chemotherapy, but it is difficult to know when to treat because there are very poor diagnostic tests for the disease. All of this must vex the single pediatric cardiologist in Bolivia who has to treat the thousands of affected children’s hearts.
Chaga’s disease is one of the dozen or so “neglected tropical diseases” that affect the bottom billion of humanity, primarily highly-impoverished rural dwellers in Latin America, Asia, and Africa. They cause 20% of the developing world’s death, disability, and disease.
Because these disease do not exist in the First World, do not travel to the First World, or infect soldiers stationed in the tropics, little research occurs on these drugs. MSF calls this the 90/10 gap. 90% of the world’s research goes for conditions that afflict the 10% in the developed world while only 10% of the world’s research goes for 90% of those living in the developing world.
Because the populations affected are so small and impoverished, there is no incentive for pharmaceutical companies to research treatments for these drugs. But even for an NGO to order a patch of 50,000 pills for these treatments is difficult because it costs a drug company too much to produce such a small batch of pills. The cooperation of drug company donation programs is key in this field.
Who champions them?
NTD’s do not have a Bono championing them, and when Prince William got shistosomiasis while on a safari in Africa, the World Health Organization’s Department of Control of Neglected Tropical Disease wrote the court to ask for his help publicizing the plight of those with a very treatable condition. The palace did not respond.
However, the Carter Center has championed the elimination of onchocerciasis, river blindness, in the Americas with donations of Mectizan from Merck & Co. Jimmy Carter has been instrumental in promoting the NTD cause. MSF’s Access to Essential Medicines Campaign now has a Break the Silence website for Chagas “celebrating” 100 years of neglect of this disabling disease and explaining how you can inform yourself and take action.
In era of massive budget deficits in the OECD, how can we and how should we prioritize our official development assistance? A very good case is made to prioritize these diseases over expensive programs treating chronic diseases like HIV/AIDS. Treatments are usually only needed once a year, and can be done without functioning health systems. Drugs cost only a few pence per year while producing dramatic health improvements. In Nigeria, successfully de-wormed areas are greener on satellite images because farmers are now healthy enough to farm better.
These health causes should not, in the end, compete with each other in a zero-sum game I believe. Fighting to take more of the AIDS budget for NTD’s while the bankers enjoy their tax-funded bonuses and Christmas parties is a bit parochial.
Their ultimate dream said WHO NTD Director Dr. Lorenzo Savioli, “is not a new program, but to join the Global Fund and receive the same grants as AIDS, tuberculosis, and malaria do.” That would be something to make Carlos Chagas proud.
World Health Organization – Neglected Tropical Disease List and Website
Medicins sans Frontieres – 100 Years of Chagas