February 23, 2009

Statement by Sophie Delaunay Executive Director, MSF-USA

This annual Ministerial review focusing on philanthropy and the Global Health Agenda clearly shows recognition of the urgency to address global health challenges. However, this initiative cannot replace the critical need for greater government leadership to stimulate medical innovation for neglected diseases affecting millions in the poorest corners of the world.

Every day, from Cochabamba, Bolivia, to Doruma, Eastern Congo, to Bihar, India, Médecins Sans Frontières medical teams are treating thousands of patients sickened with Chagas disease, African sleeping sickness, or leishmaniasis. But our doctors and nurses are forced to care for these patients—young and old alike—with treatments which when available are largely archaic, toxic, ineffective or unaffordable.

Other treatments, like for the chronic form of Chagas, a disease discovered exactly 100 years ago, are nonexistent. About 20-30% of those infected with Chagas will go on to develop the chronic form of the disease. This can take ten or twenty years to manifest. Most people our medical teams see were infected years ago, or even when they were children. By the time the chronic disease emerges the damage to the heart and digestive system can be catastrophic. Available drugs are useless.

Meanwhile, the most effective treatment for visceral leishmaniasis also known as Kala Azar is liposomal amphotericin B—named Ambisome by Gilead its patent holder—is too expensive for most Ministries of Health. The treatment cost is US$450 per patient for the Médecins Sans Frontières program in Bihar, India. But the price can climb to US$2500 per patient. Instead of receiving this preferred treatment, many patients are forced to endure 28 days of excruciatingly painful intramuscular injections with a drug called SSG that was developed in the 1930’s or succumb to the parasitic disease without care.

Sleeping sickness patients must take melarsoprol. This 60-year-old, arsenic derivative is pumped into veins of patients. Besides the intense burning sensation, melarsoprol’s side effects can be lethal and around 5% of patients treated die from complications. In some areas, treatment failure with melarsoprol has greatly increased, reaching up to 30% of cases. Eflornithine has demonstrated its effectiveness in many of the places where Médecins Sans Frontières has used it. It is far less toxic than melarsoprol but it remains extremely difficult to administer. It requires significant human resources with four infusions per day for 14 days.

The lack of safe and effective medicines for these neglected diseases is completely unacceptable. Resorting to drugs or diagnostic tools that have not evolved in half a century is totally outrageous. It is nothing less than denying that millions are affected.

Today, Médecins Sans Frontières has announced our renewed operational and financial support of DNDi because the initiative’s results have demonstrated that needs-driven research can produce medicines adapted to populations at risk. But perhaps more importantly, our support of DNDi is a response to the shocking lack of urgency to which governments have focused on the most neglected of diseases. Diseases that put 500 million people at risk, according to the World Health Organization.

Governments are abdicating their responsibility to foster medical innovation for neglected diseases. Just over $2.5 billion was spent on neglected disease R&D in 2007. And the US National Institute of Health (NIH) and the Bill & Melinda Gates Foundation together accounted for more than 59% of the global total. Of this amount, almost 80% went to three diseases: HIV/AIDS, malaria and tuberculosis. Collectively, R&D for kinetoplastid diseases—such as Chagas, leishmaniasis, and sleeping sickness—received $125.1 million in 2007, less than 5% of the total funding for overall neglected diseases.

There are many debates unfolding about the scope of needs for R&D funding for diseases like Chagas, leishmaniasis, and sleeping sickness. For our doctors and nurses, and for our dying patients, there is neither the time nor patience for these debates. Every day, we look into the pained eyes of those suffering from our collective failure to act. For them, the answer is simple. History has proven that when health threats are acknowledged and confronted, innovative and improved treatments usually follow despite tremendous scientific challenges. There is no choice but to massively scale up R&D for neglected diseases to save the countless lives being wasted by these ancient diseases.