On Monday, June 17, Research!America hosted a Hill briefing, “The Role of the U.S. Government and the Case for Scaling Up Treatment and Accelerating Innovation for the World’s Most Neglected Patients.” The event was sponsored by Reps. Lucille Roybal-Allard (D-CA) and Karen Bass (D-CA) and hosted in partnership with Drugs for Neglected Diseases initiative (DNDi), Global Health Technologies Coalition (GHTC), The American Society for Tropical Medicine and Hygiene, and Doctors Without Borders/Médecins Sans Frontières (MSF).
Kaitlin Christenson of GHTC served as the event’s moderator. Other panelists included DNDi’s Rachel Cohen; Brian D’Cruz, MD, of Doctors Without Borders; and Laurence Buxbaum, MD, PhD, of the Philadelphia Research and Educational Foundation.
The event began with a video from MSF that drew attention to neglected tropical diseases (NTDs) and the world’s most neglected patients that suffer from them. A panel discussion followed and Brian D’Cruz shared his personal experiences treating patients with NTDs in rural parts of Africa. He spoke of the difficulties in using current tools to treat patients, particularly in trying to perform procedures like spinal taps in communities with no sanitation or running water systems. In addition to the logistical difficulties, some of the existing drugs can be toxic or lead to extreme side effects that discourage patients from finishing their treatments. To cure these diseases and provide the best quality of care to neglected patients, new tools must be developed.
Rachel Cohen echoed these sentiments and explained DNDi’s work to develop new drugs and diagnostics to treat NTDs like Chagas and African sleeping sickness. She also shared an anecdote about a drug that was originally developed for cancer, but was shown to be most effective against African sleeping sickness. However, because there would be no commercial return on a drug for NTDs, the company ceased production of this drug. It was not until another pharmaceutical company discovered the drug’s potential as a topical cream for removing facial hair that production began again. She pointed out the “perversity of that situation” in which a potentially life-saving drug is not produced simply because of a lack of profit.
Dr. Buxbaum discussed his own research on NTDs as well as the importance of NTD research for the U.S. NTDs pose a threat to our national health and security as Chagas and other diseases are increasingly found here at home. (To learn more, please watch Research!America’s video about Chagas and NTDs in the U.S.) He also spoke about research funding in the current economic environment, pointing out the dangers of funding cuts to innovation in the NTD field. He noted that there are “lots of smart young people coming up through the system that can’t find jobs and may leave science.” Similarly, he pointed out that reduced funding could result in major setbacks in the fight against NTDs and waste years of past investments.
A representative from USAID’s NTD program was able to share the agency’s perspective on the future of NTDs. She noted the program’s remarkable successes and ability to leverage donations from pharmaceutical companies to make the largest impact on communities suffering from these diseases. She also highlighted the importance of strengthening health systems in conjunction with any NTD efforts. It is important to develop new technologies, but it is equally important to ensure that countries have the capacity to utilize new tools and distribute them to neglected populations.
Overall, panelists agreed on three main policy priorities moving forward: 1) scale up implementation programs, 2) invest in R&D to develop new tools to combat NTDs and 3) engage in international dialogue and coordinate efforts in the global fight against NTDs. We are making progress against many of these diseases and as Brian D’Cruz pointed out, “you can’t stop putting a fire out just when it starts to shrink.” Even in this difficult economic climate, making NTD funding a high priority can transform the lives of millions of neglected patients around the globe.
To read more about the event, please visit http://blog.ghtcoalition.org/2013/06/18/improving-us-programs-for-the-worlds-most-neglected-patients/.