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What are “neglected tropical diseases”?
“Neglected tropical diseases” occur in the most disadvantaged regions in the world – frequently in areas where there is huge poverty and where people lack healthcare, live in unhygienic conditions, do not have an adequate water supply and suffer from malnutrition. Children are especially at risk.
Among others, these diseases include Buruli ulcer, Chagas disease, dengue fever and sleeping sickness.
Around one-sixth of the world’s population suffers from one or even several of these diseases. Despite the high number of individuals affected, “neglected tropical diseases” attract very little attention and thus receive very little funding for research.
There are many different reasons for this:
- affected individuals do not have a political voice and thus are unable to call attention to their plight
- some of these diseases are chronic and are associated with pain and permanent damage, but are not deadly; hence these diseases are given less media attention and presence than, for example, the “big killers” AIDS, malaria and TB
- the suffering caused by these diseases is barely visible: the people live in very remote, rural regions or in city slums without a healthcare system
- wealthy, industrialized countries are not directly affected by these diseases
- from a financial point of view, the affected individuals’ lack of purchasing power makes it unappealing for pharmaceutical companies to invest in developing new medicines, vaccines or diagnostic products
What is Buruli ulcer?
Buruli ulcer is one of the most neglected tropical diseases.
It is caused by a “Mycobacterium ulcerans” bacterial infection, which belongs to the same genus of bacteria that caused leprosy and tuberculosis.
The initial stage of the infection is characterized either by small, painless nodules under the skin or larger swollen areas. During this phase, the disease often goes unnoticed or is not considered serious enough to seek medical attention. If untreated, the disease continues on its destructive course and the skin and the subjacent tissue begin to die. In most cases, ulcers form on the arms and legs. Even after extensive treatment with antibiotics, the affected tissue must often be surgically removed. Amputation is necessary in a number of cases. The affected individuals suffer from very painful treatments, long stays in hospital and permanent deformities or amputations.
When was the Buruli ulcer disease discovered?
At the end of the 19th century, British physician Sir Albert Cook reported on skin ulcers that exhibited characteristics of Buruli ulcer. Australian researcher Peter MacCallum and his colleagues isolated the “Mycobacterium ulcerans” bacterium in 1948 and presented a detailed description of the course of the disease in six patients. In the 1960s, numerous cases were reported in Buruli County in Uganda, which lent the disease its name. Since more and more cases have been reported in various countries and yet knowledge about the disease is still insufficient to bring the disease under control, the WHA (World Health Assembly) passed a resolution in 2004 to improve research and monitoring of the disease.
Where does the disease occur and who is primarily affected?
Occurrence
The disease primarily occurs in countries with a tropical or sub-tropical climate, with higher prevalence in regions with bodies of standing water. Precise statements on the spread of the disease cannot be made because
- it is not yet obligatory to report the disease in many countries,
- the necessary knowledge about the disease in local healthcare systems is often still insufficient,
- many affected individuals live in very remote regions where sufficient medical care is not available and the disease is thus not reported, and
- Buruli ulcer is incorrectly diagnosed as a different tropical skin disease.
Precise and conclusive statements can thus only be made when awareness is increased in all the healthcare systems of those countries which may potentially be at risk and when appropriate monitoring systems have been established.
In light of this background, it is probable that the number of unreported cases of people suffering from the disease is very high.
Cases of Buruli ulcer have been definitively reported in the following countries:
Africa
Angola, Benin, Burkina Faso, Cameroon, Congo, the Ivory Coast, the Democratic Republic of Congo, Equatorial Guinea, Gabon, Ghana, Guinea, Liberia, Malawi, Nigeria, Sierra Leone, Sudan, Togo, Uganda
The Americas
Brazil, French Guyana, Mexico, Peru, Suriname
South-east Asia and the Western Pacific
Australia, China, Indonesia, Japan, Kiribati, Malaysia, Papua New Guinea, Sri Lanka
Affected individuals:
People in remote, rural regions with very limited access to medical care are affected. In principle, the disease can affect all age groups and both men and women. However, 70 to 90 percent of all affected individuals are children between the ages of 2 and 15.
How is Buruli ulcer transmitted? Is Buruli ulcer contagious?
Although the “Mycobacterium ulcerans” bacterium that causes the disease has been known for some time, it is unclear how the disease is transmitted. The disease occurs more frequently in regions with standing or slow-flowing bodies of water. Activities that take place near such bodies of water appear to increase the risk of infection, whereas wearing protective clothing appears to lower the risk.
Experts speculate that the disease enters skin tissue through small skin injuries in the presence of contaminated water or soil or plants containing the bacterium. It is still unclear whether insects play a role in the transmission of the disease.
Direct person-to-person contact does not appear to play a large role.
What course does the disease take? What are its effects?
The first indication is a small nodule under the skin that appears to be harmless. The bacterium develops the toxic substance “mycolactone”. This toxin destroys the human tissue surrounded by the bacteria. As a result of the local destruction of nerves, the further spreading of the disease is relatively painless. Over time, larger ulcers develop – mostly on the arms and legs – and sometimes also attack the adjacent bone. The affected areas must be surgically removed; often entire limbs have to be amputated. When the lesions heal, the scars can also lead to a severe impairment of the locomotor system. Even if the disease does not result in death, those affected may suffer from long and painful stays in hospital as well as from amputations or deformities.
For the children frequently affected by the disease, the long hospital stays are hard to bear. They have to spend months in an unfamiliar environment and often endure a great deal of pain. The hospitals are often very far away from the children’s home villages and the parents cannot leave their other children alone to visit the sick child. During their stay in hospital, the children risk missing school for long periods and, in some circumstances their lasting deformities or amputations make employment later in life impossible. This often leads to social marginalization.
Can Buruli ulcer be cured? What treatment options are available?
The earlier the disease is recognized and treated, the greater the chances of a cure. The early removal or chemotherapy treatment for the nodules can prevent the spread of the disease and thus further complications. In the case of surgical treatment, large sections of tissue must be removed as the bacteria could have already penetrated into seemingly healthy tissue.
The more advanced the disease, the more severe surgical invasions will be, which are frequently necessary even after treatment with antibiotics. Large areas of skin or entire limbs must then be removed. Heat interventions (thermotherapy) have proven effective, but must first be made practical for use in remote regions in Africa.
There are thus still many unanswered questions with regard to treatment. In order to help people as quickly as possible, research in this field must be advanced, while at the same time promoting early recognition.
Why is it taking so long for research results on Buruli ulcer to become available?
Buruli ulcer is considered one of the most “neglected tropical diseases”. For the reasons described under Question 1, there is hardly any research funding available for these diseases. One reason might be that research on these diseases promises little prestige for researchers.
What are the goals of “Stop Buruli”?
The “Stop Buruli” project is backed by an international consortium that plans and conducts research into this “neglected disease” according to a coordinated agenda. The goal of the research is to produce results that can be applied in practice and thus make a contribution to bringing the disease under control as quickly as possible.
The focus lies on the following four aspects:
- Identification of transmission paths
- Development of a simple method for laboratory diagnosis
- Optimization of treatment
- Research into socio-economic and cultural aspects to improve control of Buruli ulcer
The networking and partnerships of leading research teams with local, well-established partners from endemic regions who have extensive experience in dealing with Buruli ulcer have proven to be of great significance. These collaborations ensure an ideal transfer of data and knowledge, and enable the constant monitoring of research results in the field. Especially with regard to the treatment and prevention of the disease, it is important that the circumstances and needs of the affected population are integrated into the research. This knowledge is ensured through local consortium partners who are familiar with local conditions and are associated with the health organizations in their areas.
This very promising approach will allow for quick progress to be made on the path to controlling the disease.
How is this project different from those of other organizations that deal with Buruli ulcer, such as Leprahilfe or the World Health Organization (WHO)?
Unlike the institutions/projects mentioned, “Stop Buruli” is purely a research project that strives to make a significant contribution on being able to control the disease with the expected results. The project thus ideally complements existing activities, which focus more on the direct care of patients already infected and on strengthening state healthcare systems, as well as on monitoring and statistically measuring the disease.
“Stop Buruli” is financially supported by an independent foundation. This allows the research consortium to act in a flexible, goal-oriented, efficient and effective manner.
How is the project organized?
The “Stop Buruli” research consortium currently consists of eight member organizations on four continents.
Steering Committee
Overall management and ultimate decision-making authority rest with the Steering Committee. This is made up of the eight team leaders from the participating organizations.
The Steering Committee elects a chairperson, who conducts the meeting that takes place at least once a year.
Consortium Management Team
The Consortium Management Team is made up of the Consortium Coordinator (elected for three years) and two Team Leaders (each elected for one year). It coordinates and administrates the scientific cooperation.
Why did “Stop Buruli” select this organizational form?
The project selected a simple organizational and management structure that has proven successful in other similarly complex and multifaceted research projects.
When can initial research results be expected?
Initial findings can be expected by 2010. Reports on progress will be posted at www.stopburuli.org on an ongoing basis.
Who finances and supports the project?
“Stop Buruli” is an initiative of the UBS Optimus Foundation. (www.ubs.com/optimus )
Who is the UBS Optimus Foundation?
The UBS Optimus Foundation is a charitable organization founded by UBS in 1999. As a competence center for philanthropy, it offers clients and employees of UBS a broad range of options for becoming involved in humanitarian efforts.
The foundation supports global projects that concentrate on the two grant areas of 'global health research' and 'education and child protection'. These include clearly defined focuses.
More information about the UBS Optimus Foundation is available at www.ubs.com/optimus.
Why is the UBS Optimus Foundation getting involved in the fight against Buruli?
Buruli is a disease that receives little attention since it primarily affects the poorest population groups in remote areas with poor medical care. Despite multiple calls for funding, research has received little financing. And yet, particularly with this disease – which is in many respects still baffling – even small contributions could lead to important progress. A coordinated research agenda, which also includes the national health programs of endemic areas, can lead very quickly to an improvement of the situation for those affected.
Being active in the fight against this disease therefore means acting where others look away.
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