Neglected Diseases

Experts comment on a report by MSF and the Drugs for Neglected Diseases Initiative (DNDi) which highlights the relative lack of medical research for diseases affecting millions of people in poverty.

Over the past half century, there have been unprecedented improvements in health outcomes, spurred in part by unparalleled scientific progress in the pharmaceutical sector. Yet access to the benefits of medical progress and scientific advancement has not been equitably shared and many innovation gaps remain.

Despite important progress in research and development (R&D) for global health over the past decade, only a small fraction of new medicines developed between 2000 and 2011 were for the treatment of neglected diseases.

"Fighting Neglect" charts MSF'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.

Despite recent advances, there's still a need to make noise about "the silent disease."

In this op-ed Dr. Unni Karunakara, international president of MSF, calls for increased commitment to the elimination of neglected diseases.

MSF's Dr. Marta González talks about the challenges of diagnosing and treating kala azar in India's Bihar State.

Thousands of people with Chagas disease will go untreated in coming months due to a shortage of benznidazole, the first-line drug used in most endemic countries.

Chagas disease, or American trypanosomiasis, is a parasitic disease caused by Trypanosoma cruzi (T. cruzi) and is transmitted mainly by insects called triatomines, also known as ‘assassin bugs’ or ‘kissing bugs’. It is endemic in 21 Latin American countries and cases have also been reported in the U.S., Europe, and Japan.

Recently, Chagas projects have seen their treatment capacities limited due to a shortage in benznidazole, a first-line drug manufactured by only one laboratory in Brazil. 

Founded in 2003, the Drugs for Neglected Diseases initiative (DNDi) brings together the academic, medical, public health, and pharmaceutical worlds to create effective drugs to treat neglected diseases like Chagas disease, sleeping sickness, and visceral leishmaniasis.

In addition to integrating diagnosis and treatment pf Chagas disease in health centers, MSF visits remote communities and schools assisting the populations unable to reach the clinics.

Through its Campaign for Access to Essential Medicines, MSF has been closely following the developments in the world of access to medicines, vaccines and diagnostics.

"The kala azar treatment is very hard. While on kala azar medicines, Deng became very sick with jaundice. He had to receive a blood transfusion from his uncle, which did help him."

"This year, the outbreak is particularly bad. We’ve seen almost eight times the number of cases as we did during the same time last year..."

"We found that two factors were irregular this year. First, it was highly unusual that cases would begin as early as July. This is seven weeks earlier than last year. Secondly, the high number of cases..."

Like his mother and elder sister, two-year-old Pal suffered from kala azar, also known as leishmaniasis, a very serious disease, before receiving treatment from us in Pagil, Southern Sudan.

Brussels, September 6, 2010—As finance ministers from the European Union gather in Brussels for a formal meeting to discuss the establishment of an EU-wide financial transaction tax, MSF calls on them to dedicate a proportion of the receipts from any fundraising mechanism to global health.

MSF's two facilities in Imey in the Somali region of Ehtiopia provides crucial health care services to people who would otherwise go without.

MSF has integrated Chagas screening and treatment into the primary healthcare services offered by its mobile clinics in Colombia's Arauca region.

By Dr. Unni Karunakara, incoming president of MSF's International Council, and Dr. Bernard Pecoul, executive director of the Drugs for Neglected Diseases initiative

In the two months since MSF opened a kala azar treatment center in eastern Sudan, some 400 patients have been treated

One out of three prisoners with tuberculosis is released before the completion of treatment and faces enormous obstacles once outside the penitentiary system.

The World Health Organization estimates that one million children each year develop TB, the vast majority of whom live in resource-poor settings.

New York, February 24, 2010 – The Obama administration’s Global Health Initiative (GHI) does not go far enough in combating the most lethal neglected tropical diseases, which affect an estimated one billion people, the international medical humanitarian organization Doctors Without Borders/Médecins Sans Frontières (MSF) and the Drugs for Neglected Diseases initiative (DNDi) said today.

Over one billion people are infected with one or more of the 14  diseases defined by the World Health Organization (WHO) as  neglected tropical diseases (NTDs).

More than 400 million people are at risk for the neglected tropical diseases (NTDs) visceral leishmaniasis (kala azar), sleeping sickness, Chagas disease, and Buruli ulcer.

With help from a patient and national staff, Kathryn Sisterman, a U.S. nurse on her first assignment with Doctors Without Borders/Médecins Sans Frontières (MSF) in northern Central African Republic (CAR) developed a song to teach people about human African trypanosomiasis, also called sleeping sickness or trypano. Here, she describes how the song came to be.

MSF is responding to outbreaks of kala azar—a severe parasitic disease—in Southern Sudan. The emergency is in several locations across the eastern part of the region, and MSF is treating patients in its clinics in Pibor and Lankien, both in Jonglei State, and using mobile teams in Rom, in Upper Nile State, to actively trace patients.

Geneva/Kampala, September 22, 2009 - NECT (Nifurtimox-Eflornithine Combination Therapy), the first new treatment in 25 years against Human African trypanosomiasis (HAT) or sleeping sickness, is now available. Endemic countries have now begun the process of ordering the new combination treatment and kits through the World Health Organization (WHO). Developed by DNDi and its partners, NECT cuts the cost of treatment by half and significantly reduces the burden on health workers. The announcement was made today at the International Scientific Council for Trypanosomiasi Research and Control (ISCTRC), in Kampala, Uganda.

Half a year after Doctors Without Borders/Médecins Sans Frontières (MSF) were forced to abandon its project in the northeastern Democratic Republic of Congo (DRC) due to the security situation, it is still not safe to return. Meanwhile, infection levels of sleeping sickness, which was a main focus of MSF’s activities in the area, are on the rise and many vulnerable people are at risk to the fatal disease.

"Since we left, at least 1,000 people have died of sleeping sickness in the region. It is unacceptable. We cannot stand here with our arms crossed and let people die that way. As soon as the situation allows, MSF will go back."

A new treatment has potential to make a difference in the fight against sleeping sickness. The fatal parasitic disease, which has ravaged Africa for decades, is causing thousands of deaths each year and has been spreading from the Democratic Republic of Congo (DRC) with refugees and displaced, who are fleeing from conflict and do not have access to proper treatment.

Few diseases with symptoms like heart enlargement and failure, antiquated medicine and over 300,000 current reported U.S. cases would receive almost no attention, but such is the case for Chagas disease. Until now, that is.

In October 2009, MSF and the Drugs for Neglected Diseases initiative (DNDi) hosted a symposium at UCLA in Los Angeles to raise awareness about Chagas disease in the US and Latin America, discuss the challenges of increasing diagnosis, treatment, and R&D, and produce calls for action.

"There are 10 to 15 million who have Chagas," said Gemma Ortiz, who heads the Chagas campaign for Doctors Without Borders. This year, the organization vows to "break the silence" of Chagas disease, which kills nearly 14,000 each year.

Primarily affecting poor people throughout Central and South America, an estimated 14 million people have Chagas disease, and about 15,000 die from it every year.

Madrid, July 9, 2009 — The international medical humanitarian organization Doctors Without Borders/Medecins Sans Frontieres (MSF) today launched a campaign to raise awareness of the parasitic disease Chagas. MSF is calling on countries where the disease is endemic to stop neglecting the disease by moving beyond prevention activities to increased diagnosis and treatment.

Millions of people are infected with Chagas disease yet they do not know. They can die in silence, without asking for help, without knowing why. It's time to act: diagnose and treat now!

CNN's Vital Signs visits with an MSF team in Bolivia on the trail of this neglected killer disease.

Barcelona/Geneva, New York, May, 19, 2009 – The World Health Organization (WHO) has cut short its annual health ministers meeting because of influenza A (H1N1) preparations and has postponed discussions about Chagas disease. Much needed progress in diagnosing and treating people for this neglected disease must not be further delayed, warned the international medical humanitarian organization Doctors Without Borders/Médecins Sans Frontières (MSF) today.

Geneva/New York, May 15, 2009 – A new treatment option for sleeping sickness, a fatal disease that threatens 60 million people across sub-Saharan Africa, has been added to the Essential Medicines List (EML) of the World Health Organization (WHO). The inclusion of NECT (Nifurtimox-Eflornithine Combination Therapy) is based on an application submitted by the non-profit Drugs for Neglected Diseases initiative (DNDi), supported by the international medical humanitarian organization Doctors Without Borders/Médecins Sans Frontières (MSF), and Epicentre, MSF’s epidemiological research center.

Geneva/New York, February 23, 2009 — MSF and the Drugs for Neglected Diseases initiative (DNDi) called today for more sustainable funding for research and development (R&D) to tackle deadly, yet neglected diseases, such as sleeping sickness, visceral leishmaniasis, and Chagas disease, that affect millions of people around the world.

Geneva/New York, February 23, 2009 — MSF and the Drugs for Neglected Diseases initiative (DNDi) called today for more sustainable funding for research and development (R&D) to tackle deadly, yet neglected diseases, such as sleeping sickness, visceral leishmaniasis, and Chagas disease, that affect millions of people around the world.

MSF welcomes recognition by UK drugs company GlaxoSmithKline that patents act as a barrier to research and development and that patent pools offer new ways to stimulate research into neglected diseases. Promises now need to be turned into action.

New Orleans, Paris, Geneva; December 9, 2008 – Positive results from a pivotal, multi-center, multi-country Phase III trial investigating an improved treatment for the advanced stage of sleeping sickness were presented yesterday at the 57th Annual Meeting of the American Society of Tropical Medicine & Hygiene held in New Orleans, Louisiana, USA. This trial shows conclusively that NECT is a safe, effective, and practical treatment.

Rio de Janeiro, April 17, 2008 – Doctors Without Borders/Médecins Sans Frontières (MSF) welcomes the launch in Brazil of a new drug against P. Falciparum, the most dangerous type of malaria. Developed by DNDi (Drugs for Neglected Diseases Initiative) in partnership with Farmanguinhos/Fiocruz, ASMQ is the first drug against malaria that combines artesunate (AS) and mefloquine (MQ) in one fixed dose. ASMQ is an important additional tool for better treatment for a disease that continues to kill over one million people each year globally, and kills a child every 30 seconds.

New York, NY, October 31, 2007 - In a study published today in the inaugural issue of PLoS Neglected Tropical Diseases, Doctors Without Borders/Médecins Sans Frontières (MSF) medical teams detail a dramatic increase in visceral leishmaniasis, also known as kala azar, in the Bakool region of south-central Somalia. The current conflict in Somalia and the lack of health infrastructure makes it both difficult to address the problem and to assess the true magnitude of the impact of the disease.

Yaoundé/Geneva, July 31, 2007 – Mortality rates and the medical and nutritional situation among the refugees that have been entering Cameroon for over a year have exceeded emergency thresholds. In response to this situation, the international medical humanitarian organization Doctors Without Borders/Médecins Sans Frontières (MSF) has begun targeted food distribution to meet the vital needs of this vulnerable population. Now more than ever, it is essential for humanitarian actors to mobilize as quickly as possible.

With the Nigerian government filing a lawsuit against the U.S. drug company, Pfizer, for clinical trials it conducted during the 1996 meningitis epidemic in Nigeria, Dr. Jean-Hervé Bradol, president of the French section of Médecins Sans Frontières, reviews MSF’s work in Nigeria that year. He emphasizes the need for more clinical research that addresses the lack of treatment options for people in Africa.

In late December 2006, after four years of treating people living with HIV/AIDS in Coatepec, MSF transferred that responsibility to the country's public health agencies. Preparation for the handover had been underway for more than a year. The transfer was implemented gradually, concluding only when the agencies taking responsibility were ready to ensure continuity of care. MSF continues to provide treatment to people living with HIV/AIDS in Puerto Barrios and Guatemala City.

Atlanta, November 15, 2006 — Preliminary results from a study conducted by the international medical humanitarian organization Doctors Without Borders/Médecins Sans Frontières (MSF) show that significantly shorter and simplified treatment of African sleeping sickness (human African trypanosomiasis — HAT) could be possible in the near future. Announcing the study today at the 55th annual meeting of the American Society of Tropical Medicine and Hygiene in Atlanta, the organization stressed that measures must be undertaken to ensure that this treatment can be used as soon as possible at country level, and that older, toxic treatments are phased out."

Human African Trypanosomiasis, also known as African Sleeping Sickness, is a fatal and much neglected disease that continues to plague parts of Africa. The drug most commonly used to treat the disease is so toxic that it kills one in 20 patients. While a better drug exists, it is too complex to use in resource-poor settings. In the Democratic Republic of Congo (DRC), sleeping sickness has made a disturbing comeback over the past few decades.

Geneva/Mexico City, November 16, 2004 - The current system for health research and development is failing to bring the benefits of medical progress to the poor, according to the medical humanitarian organization Doctors Without Borders/Medecins Sans Frontieres (MSF) on the opening day of the Ministerial Summit on Health Research, "Bridging the Know-Do Divide to Achieve the Millennium Development Goals," in Mexico City.

On CAFTA and access to medicines

by Patrice Trouiller, Piero Olliaro, Els Torreele, James Orbinski, Richard Laing, and Nathan Ford

On the upcoming meeting of the G8, TRIPS and accees to medicines.