The UICC My Child Matters Project in Tanzania

Ocean Road Cancer Institute (ORCI).

Introduction

The UICC and the sanofi-aventis Foundation, being aware that most children with cancer in developing countries, such as Tanzania, do not enjoy the same high potential cure rates as children in technologically advanced countries, and mindful of the fact that very little money can make a difference in such resource- poor countries, launched a unique cancer program in 2005 designed to improve the care and support of children with cancer in developing countries (My Child Matter). The Director of the Ocean Road Cancer Institute (ORCI) in Tanzania (Dr. Twalib Ngoma) submitted a proposal on Expanding Access to Treatment for Burkitt lymphoma (BL), the predominant childhood cancer in Tanzania, which was selected for funding by the UICC MCM Steering Committee with INCTR acting as mentor.

Statement of the problem

The population of Tanzania, which is in excess of 35 million people, includes 10 million children less than 14 years of age – the peak age for BL unassociated with HIV infection. The estimated average annual incidence of BL in Tanzania is 7 children per 100,000, such that it is projected that approximately 700 new cases of BL in Tanzania occur every year. In 2005, it was estimated that only some 145 of these children were treated in various hospitals scattered throughout the country, most of which did not have expertise in the management of this rapidly progressive disease. There were no national guidelines for referral or treatment, and cyclophosphamide, as a single agent, was the most commonly administered therapy in the district hospitals in Tanzania. At ORCI, simple COM therapy (cyclophosphamide, vincristine and methotrexate) without intrathecal treatment (which is required to prevent spread to the central nervous system) – an approach used more than 30 years ago in Uganda, where BL was discovered, was the standard treatment at ORCI. Limited survival information was available because most patients were lost to follow-up after therapy, and throughout the country there can be little doubt that the majority of patients died. This was thought to be due to:

1. Low awareness of BL as a readily treatable form of cancer, leading to more than 80% of children with BL presenting to hospital in very poor general condition and with advanced disease, in which case survival rates are very low. In most instances, because of their poor general condition, it was felt that children would not be able to tolerate combination chemotherapy.
2. Poor referral systems and health infrastructure, with the result that more than 50% of BL patients would not be able to access hospital services and would therefore receive no treatment at all.
3. Delays in performing biopsies or fine needle aspirate procedures for diagnosis, followed by long delays of up to six months (often well beyond the life expectancy of an untreated patient) before the issue of a report.
4. Assumptions that no news is good news, in the context of poor patient follow-up – whereas the reverse is almost certainly the case.

In August 2004, with these challenges very much in mind, ORCI joined a newly formed multiinstitutional study group coordinated by INCTR to work together on the treatment and characterization of BL in equatorial Africa, and approximately a year later, submitted a proposal to the MCM Steering Committee.

Child with bilateral jaw tumors before and after treatment.

The My Child Matters Project

The primary objective of the project is to expand effective care to as many children with BL as possible in Tanzania, through a coordinated program of public and professional education, the identification of appropriately distributed hospitals capable of treating patients effectively and assisting them to establish an effective program, and the development of an effective triage system for patients with suspected Burkitt’s lymphoma – critically important because of the known higher incidence of this disease in rural regions.

Specific goals

The goals identified for the project in the first year included:

• To increase the number of BL children in Tanzania who access treatment for BL from 30% to 50%.
• To reduce the waiting time for biopsy results from six weeks to two weeks.
• To increase the number of children with BL who present to hospital in good general condition and early disease from 20% to 40%.
• To increase the cure rate of BL in Tanzania from 40% to 60%.
• To increase the number of children with BL who comply with follow-up appointments from 20% to 40%.

• Campaigns involving meetings with various stakeholders (pathologists and pediatricians or other specialists treating patients; the general public), training workshops and the media. The campaigns are designed to raise BL awareness in Tanzania - targeted at the general public, health professionals, the families of children with BL (who make excellent advocates in their home village), and policy makers.
• The formation of BL Working Groups and the facilitation of their meetings.
• Employment of a pathologist to do FNAC of BL lesions and fast track BL histology results, at least on behalf of ORCI.
• The production of information, educational and communication materials (IEC) on BL.
• The distribution of posters and leaflets to district hospitals.
• The employment of a “tracking officer” to trace children with BL who had not returned for a scheduled appointment.

• Good Mentorship.
• Dedicated focused project staff.
• Networking with other groups treating children with BL.
• Guaranteed funding for planned activities.

The project team during one of its meetings.

 

• Poor communication/infrastructure.
• Inadequate and untrained staff in upcountry facilities.

• Formation of nationwide BL network.
• Further increasing BL awareness and childhood cancers in Tanzania.
• Catalyzing government policy makers and the media to support the treatment of cancers in children – not just BL.
• Creating a platform for introducing pediatric oncology into the health agenda in Tanzania.
• Undertaking additional research and collaboration.

• Lack of funding after completion of the project.
• Services overwhelmed and stretched to limits due to increased awareness of BL.

Lessons Learned

Even in low-resource countries, with good planning and some funding, it is possible to give good quality treatment to more children and improve their survival outcomes.

If we can do well in treating BL, we can also do well in at least some other cancers.

Twalib A. Ngoma,
ORCI and INCTR Tanzania,
Dar-es-Salaam, Tanzania