Fund Raising for the Care of African Burkitt Lymphoma

INCTR, once again, entered the end of year challenge made by Global Giving. The challenge was to raise at least $3000 from at least 30 donors. This then puts the organization in the running for a bonus. Last year, we had some 49 donors, raised over $10,000 and were awarded an extra $1,000. This year 36 donors contributed $11,400,and INCTR secured an additional $1000. Background information is provided below.

Patients with cancer in low income countries or regions face many difficulties, most of which stem eventually from poverty, but the fact that 80% of people live in rural regions, many being subsistence farmers who still use barter for exchanging goods and therefore have little cash available, adds significant difficulties to education, since children are scattered across wide areas, or must live away from home. Almost none can purchase even a bicycle, which, trivial though it sounds, can mean that 4-5 times as much produce can be brought to market - which is often a considerable distance from the homestead. When a family member becomes seriously ill, the family may have little knowledge of what kind of illness it is and if the patient does not rapidly recover, and particularly if deterioration is occurring, it is usually much easier to reach a medical assistant or traditional healer rather than a doctor. The doctors themselves are likely to have limited knowledge, since it is unlikely they will have access to continuing education, and generally has no one to whom he or she can turn to for advice. Moreover, most doctors will be quite unfamiliar with most cancers, since relatively speaking, it is a rare disease, particularly in rural Africa (although some cancers such as hepatocellular carcinoma, which results from heptitis B or C infection coupled to harvested cereal crops by aflatoxin. If the family elects for treatment of a child with Burkitt lymphoma by a traditional healer, they may inadvertently be reducing the possibility of cure since there is no evidence (although also no data) that such medicines are effective, and the most likely event is that the lymphoma will continue to progress - in the case of Burkitt lymphoma, very rapidly, and there can be little doubt that many patients die before any effective treatment can be given through delays by persons ignorant of the disease, whether a traditional healer or a medical assistant or primary care doctor. Burkitt lymphoma is uncommon in urban areas since there is no longer any doubt that it is markedly predisposed to by malaria, such that people who live near mosquito breeding grounds, e.g., rivers, lakes, or simply very rainy regions are at greater risk for repeated episodes of malaria, which causes B-cell proliferation as a result of cytokine activation. Immunity to Epstein Barr virus, which infects 100% if African children by the age of 3 years. To overcome this problem, addressing the issue of malaria by standard eradication techniques (especially spraying doors and windows where mosquitoes can enter the house and sleeping under nets (the female anopheline mosquitoes that transmit malaria when sucking blood from large mammals tend to take their blood meal, when malaria is transmitted, at night. Of course, in these holoendemic areas for malaria, attempting to reduce the intensity of malarial infection is important enough in its own right. In addition, the population should be educated about Burkitt lymphoma, since it is a curable cancer, its curability depending on how advanced the disease is. Education of the public and rural medical assistants and doctors, as well as the staff of district hospitals about the need for rapid transfer to a hospital capable of diagnosing and caring for the child, while usually considered public health, in this case should be initiated by the staff of tertiary hospitals capable of caring for the patients since they are familiar with the disease. This is made much easier if hospitals form networks and standard teaching tools are created, ensuring that the correct messages are translated, ideally in the local language. The engagement of local non-governmental organizations involved in child health may help considerably in providing such education along with other tasks they may undertake. In some cases, for example, they are willing to arrange transportation to the nearest tertiary care hospital capable of providing therapy. The problem of the cost of care, however, which is usually beyond the means of the patient's family must be found initially by tje Gpverment or NGOs. Government contributions are much more likely if the likelihood of cure is high. INCTR is presently working on a project taking place in St Mary's Hospital, Lacor, Uganda, and the Bugando medical center at Mwanza hospital in Tanzania in which the caregivers are also responsible at least for initiating education about the disease, and involving non-governmental organizations (including parent associations) who can assist with transportation and social aspects of therapy. At the moment, the cost of therapy is provided by INCTR with funding obtained via a grant from OFID, as well as through "Global Giving," an on-line fund raising organization. and the Christopher Niblett Foundation in London, which is associated with the INCTR Challenge fund, based in Oxford. It is hoped that mechanisms can be found to ensure the sustainability of the program so that patients can be diagnosed and treated before their tumor extent is sufficient to cause serious complications. Interestingly, the fact that a high proportion of the patients with Burkitt lymphoma are being cured with the current INCTR treatment protocol appears to have had a significant effect in mobilizing both the medical community and the public in the regions of the two participating hospitals. Thus, one lesson learned from this project is that external organizations, such as INCTR, should address not only the treatment of the disease, but public health issues too, such as exploring the reasons for late diagnosis (a common problem in low and middle income countries) and, in discussion with their local collaborators, mechanisms that may be used to overcome them. If these mechanisms are used by the local community, rather than simply relying upon an external organization to provide funds for treatment, sustainable improvements are much more likely to be made.

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