Integrated Cancer Control
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Program: Clinical Studies
Coordinators: Melissa Adde
Other INCTR Participants: Ian Magrath, Lorenzo Leoncini, Max Parkin
Collaborators: Dr Nestory Bugalu, chief of Oncology, Bugando Medical Center, Mwanza, Tanzania

Valeria Colbi, Haematologist and Chief of Pediatrics, St Mary's Hospital, Lacor, Uganda
Branch(es): Brussels, INCTR Challenge Fund
Location: Single Continent
Country(s): Tanzania, Uganda, Nigeria
Institutions: St Mary's Hospital, Gulu
Bugando Medical Center, Mwanza
Obufemi Owolowo Teaching Hospitals Complex
Background Information: • BACKGROUND

The East African Community (EAC), where the proposed project would take place, is comprised of 5 low income countries, with an estimated population of 139 million people in 2010 - 45 million in Tanzania, 41 million in Kenya, 34 million in Uganda, 10 million in Rwanda and 9 million in Burundi. The life expectancy at birth among the 5 states ranges from 52 to 57 for women and 49 to 55 for men, but the region is experiencing rapid population growth. In 2010, 80% of the population were children (0-14 years; 34 million) or young people (15-34 years; 48 million). This has many implications for the economy, education and health. In the context of cancer, the proportion in young people is much greater in low income countries such as the EAC and accounts for nearly 10% of all cancers when compared to the USA and Europe. Since young people have their entire lives to live, the impact of disability and death caused by cancer in young people on the growth of the economy is potentially much higher than that of persons above 65 years, who have largely completed their working lives. The WHO has projected almost a doubling of cancer in sub-Saharan Africa by 2030, but this region is poorly prepared for such an increase. There are very few specialists able to diagnose and treat cancer, limited numbers of nurses trained in oncology and a largely rural population (80%) with poor access to medical care. With the occasional exception of Kaposi sarcoma, resulting from the AIDS epidemic, the commonest childhood tumor, in equatorial Africa, which has an incidence of approximately 4 per 100,000 in children (similar to ALL in high income OECD countries), and accounts for approximately half of all childhood cancer, is Burkitt lymphoma (BL). BL is a cancer shown many years ago to be potentially curable with inexpensive chemotherapy (approximately $250 per patient when WHO accredited drugs manufactured in India are used). Most adult cancers present in an advanced stage of disease, and even if this were not the case, radiotherapy units and well-trained oncology surgeons are extremely few in East Africa, and the survival rate of most patients with cancer is correspondingly extremely poor. In contrast, BL is not only highly sensitive to chemotherapy, but does not require radiation and major surgery for effective therapy. This means that, although BL is a very rapidly growing tumor that, untreated, leads to death within a matter of months, it is potentially curable and can be treated in any center where doctors and nurses have been trained in the care of such patients. It provides, therefore, an excellent model, which can be used to convince policy makers that cancer is worthy of more attention as a health problem. Failure to direct more resources towards cancer and other non-communicable diseases, and to strengthen health services, which are still primarily focused on acute medicine and infectious diseases, will lead to marked increases in the mortality rate from cancer. At the present time, low income countries, such as the majority of equatorial African countries, have grossly inadequate human, physical and financial resources and although the burden of infectious diseases is decreasing, in part through external assistance provided by, for example, the Global Fund to fight AIDS, tuberculosis and malaria, low income countries are grossly ill-equipped to deal with the present burden of cancer. Without significant changes in policy and direct assistance from external sources to strengthen health services, educate and train more health workers, particularly health care providers, and provide information to the public about healthy lifestyles (i.e., those least likely to predispose to cancer) the gap between available health services for cancer and the need for these services will continue to widen, the mortality rate from cancer will continue to rise, and an increasing number of people will die without even the benefit of palliative care.


Summary - Developing a Total Care Plan (Model of Care) for Burkitt Lymphoma
The present proposal is directed towards the development of a total care plan for BL based on the therapy demonstrated to be effective in an African setting, but also taking account of the potentially soluble problems that presently result in patients arriving at the treatment center with very advanced disease (solving this problem alone might well result in an average cure rate 10% higher) and developing methods to disseminate information about the curability of the disease to both the public, who need to seek medical consultation when their child is unwell, and primary and secondary care physicians who must recognize the possibility that the symptoms may be caused by BL (or another cancer). The fact that excellent results in the treatment of BL have already been obtained with protocol INCTR 03-06 essentially guarantees success of the project if the major outcome measure is the survival rate in BL, but improving the efficiency of the non-treatment aspects of care, namely educating members of the public to suspect the diagnosis, referring the patient to a center where an accurate diagnosis can be made and ensuring that treatment is given according to a previously designed plan (protocol) is highly likely to result in even better results than those obtained before. Although the emphasis will initially be on BL, as described above, a major advantage to developing effective approaches to educating the public as well as primary and secondary level health care providers about the symptoms of BL and when to refer cases to a hospital capable of delivering effective care, is that the same methods could also be used for many other cancers. By integrating district hospitals and potentially, primary care providers, into a regional healthcare network, designed to detect, treat and follow up all patients with BL, the health services would be strengthened, to the benefit of many other patients, and medical staff will have the advantage of greater communication, exchange of ideas and sharing of knowledge, but also will work more closely together to the advantage of a broader range of patients with cancer. Ensuring local sustainability will result in a greater reliance on the resources, including people power, within participating countries such that they will be able to more effectively manage their increasing cancer burden. In essence, this project will demonstrate the importance of careful application of the scientific method to the solution of problems in a real-time rather than in a virtual situation – i.e., it will both create and use knowledge directly in the care of patients, and not simply transfer information gained from high income countries to low income countries in the hope that the latter will be able to make use of it in some way. Without training in the scientific method, sufficient well trained health professionals, equipment, medicines and facilities, this is simply not possible.
Objectives:
1.To improve the access to care of patients with Burkitt lymphoma (BL) in selected regions in two East African countries, through the establishment of regional networks including all care levels (if successful, the methodology can be up-scaled to other regions and the principles applied to other cancers).
2.To improve the survival rate of BL at a population level in the demonstration regions through the application of lessons learned from the previous INCTR project carried out in Africa.
3.To develop a training program for health workers to be conducted in concert with patient care.
4.To ensure the sustainability of the program, financially, medically and academically (including the cultivation of a research ethos).
Methods: • There are several components to implementation, and these will be established in a stepwise fashion. The first 3 months of the project (phase I) will be devoted to implementation of the new protocol and creation of the network – without competent treatment centers, early diagnosis has no value. As soon as centers have been visited and educated in symptoms and signs that lead to a suspected diagnosis as well as how to refer patients, they will begin to apply this new knowledge, with resultant down-staging of referred patients.

Phase I (first 3 months of year 1): Establishment of the network, and planning for various components of the project including education and training of new staff members Doctors and nurses), development of the modified treatment protocol and data base. Developing and initiating the awareness campaign and referral guidelines and initiation of modified treatment protocol.

Phase II (last 9 months of year 1 to the end of the project (the duration of which will depend on co-funders and success in fund raising). Continued expansion of the network, training of he public and general physicians and surgeons in the early recognition of BL and how and where to refer patients; continued treatment of BL at the two first centers, and, if possible, the development of funding for expansion to additional tertiary centers. With pledges already obtained, this is likely to be accomplished, but even if it is not, the establishment of two major treatment nodes in the network will have been a significant achievement.

Supervision of the project will ultimately be the undertaken by the Steering Committee (see remarks) but on a day to day basis, supervision of patient care will be the responsibility of the PIs in each participating center and, at project level, the Administrative and Clinical Coordinators

Reporting is built into all activities where reporting is necessary as well as reporting of the results of the overall project. The use of a data base for registering all patients on study (including patients seen at district hospitals prior to referral) and the toxicity and efficacy of treatment will provide detailed information on the numbers of patients referred, treated, and their outcome (follow up will be continued by INCTR after the first year is completed with the aid of co-funders). The project coordinators will report on a monthly basis to the Steering Committee. A structured report form for this purpose will be generated, which will include as many numerical indicators as is feasible, including the number of patients enrolled for treatment, the number referred for investigation in the regional networks, the number of health professionals trained, progress of public awareness campaign and education of primary and secondary care providers. Any additional Reporting required by OFID will be managed by the project coordinators and filed for future reference. Expenditure records will be kept at all centers to enable detailed financial reporting to be provided.
Progress: The first year of the project has been completed and was highly successful. The overall survival of over 200 patients treated at St Mary's Lacor is now 71% - an exceptionally good result for Africa. In addition, resources have been mobilized in both Tanzania and Uganda to train and educate the public and primary care providers in the importance of early detection.

A cancer registry has been established at Lacor, under the auspices of INCTR's registries program.
Future Plans: A new proposal is being written, which will build upon the work accomplished to date
Duration: Indefinite
Publications: An abstract was presented at the Lugano meeting on lymphomas and will be developed into a manuscript for submission.
Month: 12
Year: 2015
Last Update: 12/2014
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