Barcelona/New York - In order to break the vicious cycle that leaves tropical diseases neglected, existing programmes that diagnose and treat patients need to be expanded and medical research to develop simpler, more effective tools needs to be supported, according to a new report, Fighting Neglect, released today by Médecins Sans Frontières (MSF).

Charting the organization’s 25 years of experience in diagnosing and treating Chagas disease, sleeping sickness, and kala azar, in Latin America, Sub-Saharan Africa, South Asia and the Caucasus, the report examines past, present, and future management of the diseases and notes that access to quality life-saving treatment requires much greater political will among major international donors and national governments of endemic countries. MSF also called for a global focus on more research and development toward new and more effective diagnostics and treatments for diseases that overwhelmingly affect people in developing countries.

Visceral leishmaniasis (VL, or kala azar) and human African trypanosomiasis (HAT, or sleeping sickness), are always fatal if left untreated. Together with Chagas disease (American trypanosomiasis) these neglected tropical diseases affect millions of people, killing tens of thousands every year. 

“These diseases are not a curse,” said Dr Unni Karunakara, MSF international president.  “While challenging, they are highly treatable and curable. Neglect can be overcome and millions of lives can be saved, but for that, we need political will. Political will to pay for programmes that work, and political will to develop better tools that will allow us to tackle these diseases more effectively.”

The report demonstrates that diagnosis and treatment of these diseases is possible, but that decades of inaction at the global level has left a deep void.

“What we have is a terrible cycle of neglect,” said Gemma Ortiz, MSF’s neglected diseases advisor. “Policy makers don’t focus on the neglected diseases because they claim there are not enough tools to adequately treat patients. Pharmaceutical companies don’t invest in research and development of new tools because these diseases mostly affect the poorest people in the world, who don’t represent a lucrative market. This cycle must be broken.”

Firstly, rapid progress can be achieved by supporting programmes so that they scale up the best existing diagnosis strategies and treatment options. For example, more Chagas disease programmes need to be implemented in South America now that the arrival of an additional manufacturer of benznidazole on the market means a recent global shortage of this key treatment could be overcome. More children should be put on treatment too, since a pediatric dose of benznidazole was registered in Brazil last year.

Better available treatments need to be rolled out in South Asia. This should include treatment regimen or combination with liposomal amphotericin B for kala azar, although its affordability and access need to be increased.

Secondly, the development of newer diagnostic tools and safer treatments must be facilitated, so that they better respond to patients’ needs and facilitate treatment delivery in remote areas, where the preponderance of those affected live. The majority of available diagnostics and drugs are antiquated and require specially trained staff and extensive logistics which make progress difficult. In East Africa, for example, kala azar treatment option is still largely dependent on a toxic drug that dates back from the 1930s and requires multiple painful injections. Although a new therapy for advanced sleeping sickness was unveiled in 2009, for the first time in 25 years, patients still require 14 infusions that must be administered in a hospital. The future of disease management lies in a safe and efficient drug taken orally, which can be provided in rural outpatient health clinics.

Encouragingly, there is growing international attention to neglected tropical diseases. In January 2012 inLondon, the World Health Organization (WHO) released a roadmap to better control and eliminate some neglected tropical diseases, backed by the Bill and Melinda Gates Foundation, and donor countries such as the United States and the United Kingdom.

But concrete results are still lacking. Treatment programs have yet to be scaled up. The plan does not provide increased funding and strategies to scale-up existing effective interventions for Chagas disease and sleeping sickness.  And at the WHO, the US and Europe recently opposed attempts to give medical innovation for neglected diseases the revamp it needs by seeking to block proposals for a new global research and development framework that prioritizes the unmet needs of patients in poor countries.

“For better diagnostics and medicines to be developed, we not only need more resources dedicated to innovation, but we have to seriously rethink the way R&D is conducted and ensure that innovation meets public health needs in developing countries,” said Judit Rius, manager of the MSF Access Campaign in the US. “What we need is action, not lip service to tackling these killer diseases.”