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Article

Pediatric Oncology in Ethiopia - an INCTR Initiative

Figure 1. Temesgen Gamacho, the young man with osteosarcoma who inspired the initiative.
Figure 2. Map of Ethiopia and surrounding countries.

The International Network for Cancer Treatment and Research, US A (INCTR USA,) in collaboration with the Division of Pediatric Hematology Oncology, Blood and Marrow Transplantation Program, Lombardi Comprehensive Cancer Center, Georgetown University Hospital, Washington DC, has entered into a partnership with the Federal Ministry of Health, Ethiopia, Addis Ababa University Medical Faculty and the Tikur Anbessa Hospital (Black Lion Hospital), Addis Ababa, to demonstrate that a significant number of pediatric cancer patients in Ethiopia can be cured when treated by physicians trained to recognize cancer early, diagnose it correctly, and treat it according to standard chemotherapy protocols and supportive care regimens specifically designed for developing countries.

The Pediatric Oncology Initiative in Ethiopia is the result of the desire of the Cohen family in Washington DC, to honor the memory of an extraordinary 16 year old young man from Ethiopia, who fought a valiant battle against metastatic osteosarcoma, in part at Georgetown University Hospital, where he was transferred after he was adopted by the Cohen family. He passed away more than two years ago. (Figure 1). Knowing that most children with cancer in Ethiopia die from their disease as a result of lack of resources and expertise in diagnosis and treatment, Mary Louise Cohen, a Board member of INCTR US A, decided to spearhead an effort to make a difference in the lives of children with cancer in Ethiopia.

Background

Ethiopia has long been known to the outside world as Abyssinia. It is located in the North-eastern part of Africa, also called Horn of Africa and is bordered by Eritrea (N), Kenya (S), Djibouti and Somalia (E) and Sudan (W). (Figure 2).

Figure 3. Ethiopian Population Pyramid for 2010.

Ethiopia is one of the world’s poorest nations. It has a population of 83 million people, with more than half the country under the age of 18 years; 49.7% are females, 44.7% of the population is less than 15 years of age, and 40% is under the age of 5 years (Figure 3). It rates as the 171st out of 182 countries on the United Nations Development Program’s Human Development Index. Most people live on less than $2 a day.

Healthcare in Ethiopia

The Ethiopian Government is the country’s main health care provider with 138 hospitals and 635 health centers. Only two of these hospitals, Tikur Anbessa and Yekatit 12 in Addis, have dedicated pediatric wards. Treatment is provided free. However, with the per capita expenditure of $2.31/day on health (as compared to $9/day in India and $100/day in South Africa), resources are few and care sub-optimal. The doctor/nurse to population ratio is 1:42,700 and 1:4200 respectively. Neonatal mortality rate is 49 deaths/1000 live births and the under-five mortality rate is high at 77 deaths/1000 live births with 1/6th of the children dying before their 5th birthday. More than 70% of these deaths are due to communicable diseases such as measles, pneumonia, malaria, HIV/AIDS , diarrhea and severe malnutrition. Recently, with the institution of immunization programs all over the country, there is a trend towards decreased mortality from communicable diseases.

Figure 4. Pattern of Cancer in Ethiopia.

Pattern of Cancer in Ethiopia

There is no cancer registry in Ethiopia. Extrapolation from clinical records from Tikur Anbessa Radiotherapy Center estimates that there are 120,500 new cancer cases/year, although Globocan estimates are much lower (51,000 per year). Most patients present with advanced disease, and there is a high rate of abandonment of treatment. Morphine is not readily available for cancer patients. The top 10 cancers are listed below. (Figure 4).

Pediatric Oncology in Ethiopia

Based on extrapolating estimates from another East African nation, Tanzania, with an incidence of pediatric cancer of 134 cancer cases per million, Ethiopia probably has close to 6,000 new cases of pediatric cancer each year. The commonest childhood cancers seen at Tikur Anbessa Hospital include leukemia, lymphoma, retinoblastoma, Wilms tumor and bone and soft tissue sarcomas. Most children present late, with advanced disease, and in pain.

With a per capita income of approximately $2 a day, resources devoted to health and health care in Ethiopia are limited. Ethiopia has no pediatric oncologists. Mortality rates for most pediatric cancers are close to 100%. In contrast, in developed countries, the survival rate for children and adolescents diagnosed with the most treatable cancers, including leukemia, lymphoma, retinoblastoma and Wilm’s tumor is rapidly approaching 90%.

The situation in Ethiopia is similar to that of other developing countries where cancer patients often receive incomplete, inadequate, or no care and those with incurable disease are frequently sent home to die without palliative care. Ethiopia lacks the trained medical personnel, adequate facilities, a sufficient supply of essential chemotherapy drugs and simple pain medications necessary to treat cancer patients. As a result, there is little public awareness that cancer can be cured, little public demand that health systems address cancer, and consequently, few government medical resources devoted to cancer treatment.

However, all this is changing rapidly as the world slowly wakes up to the burgeoning problem of noncommunicable diseases (NCDs). Even though NCDs were not mentioned in the Millennium Development Goals written in 2000, NCDs were responsible for 60% of global deaths in 2005 (35 million), with 80% in low - and middle - income nations, and are projected to increase by an additional 17% over the next decade. Cancer is now recognized as an important health problem in developing countries. The WHO Assembly resolution WHA58.22 (2005) has done much to bring this about, and now even the governments of the poorest countries recognize that cancer is an important health problem. Resolution WHA58.22 urges countries to develop programs tailored to their socio-economic status, aimed at reducing cancer incidence and mortality and improving the quality of life of cancer patients and their families through the systematic, stepwise implementation of evidence-based strategies for prevention, early detection, diagnosis, treatment and palliative care.

Similarly, a 2006 Institute of Medicine (IOM) report also recommends focusing on pediatric cancers as an ideal target for capacity building in developing countries, as: a) most childhood cancers are highly curable if detected early; and b) successful, low cost, treatment protocols that utilize inexpensive, generic, chemotherapy drugs, adapted for use in low-income countries (such as the ALL and lymphoma protocols devised by INCTR) are readily available for use.

Figure 5. Temesgen Gamacho and his oncologist, Aziza Shad, Georgetown University Hospital.

Proposal to build Capacity to treat Childhood Cancer in Ethiopia

 

The goals for the Ethiopian project are to:

 

  1. Increase capacity to recognize and treat children and adolescents with cancer in Ethiopia through training of doctors, nurses, pharmacists and social workers.
  2. Increase survival rates for children with curable cancers by training a core group of pediatricians to treat patients using cost-effective protocols designed for developing nations.
  3. Establish a dedicated Pediatric Oncology Unit (POU).
  4. Improve diagnostic capacity through INCTR’s i-Path program.
  5. Improve supportive care and infection control practices through training and ensuring a supply of necessary antibiotics and anti-fungal agents.
  6. Introduce palliative care for all patients, particularly those with incurable disease.
  7. Help establish a sufficient supply of essential chemotherapy drugs to prevent interruption of treatment.
  8. Provide a mechanism for family support to decrease rate of abandonment of treatment.

Eventual Goal: Establish a Center of Excellence for Pediatric and Adolescent Oncology at the Tikur Anbessa Hospital in Addis Ababa.

The mechanisms that will be used to achieve these goals include:

  1. The establishment of a Twinning program with Georgetown University and INCTR for training and education.
  2. The development of a curriculum for a Fellowship Training Program in Pediatric Oncology and Palliative Care.
  3. The development of a curriculum for Pediatric Oncology Nursing.
  4. Telecommunication: use iPath to provide training and consultative services in pathology.
  5. Hold focused Training Workshops targeted to specific cancers and their management.
  6. Establish a Data Management Program to capture data on demographics, presentation, patterns of disease and outcomes of treatment.
  7. Create a Visiting Faculty Program: INCTR faculty and other experts to participate in hands-on and distance learning.
  8. The development of a Family Support Program to be established in collaboration with other agencies in Addis with the aim of providing housing, nutrition and financial support to families in order to reduce abandonment during treatment.

Progress to Date

  1. The INCTR Program for Ethiopia was inaugurated in January 2011 with the 1st Pediatric and Adolescent Oncology Symposium held in Addis. It was attended by physicians, nurses and other allied health care professionals from Tikur Anbessa Hospital and other academic institutions around the country.
  2. Strategy Planning Committees have been established in INCTR as well s Ethiopia that meet regularly to implement the plans. Program coordinators are in place in INCTR US A and Addis.
  3. Several needs assessment visits have been made by members of the INCTR Strategy Planning Committee and other experts.
  4. The Curricula for the Pediatric Oncology Fellowship Program and the Nursing Oncology training are nearing completion.
  5. Treatment protocols for common, curable pediatric cancers are being finalized.
  6. An microscope equipped with a digital camera is already in place and the iPath program for training and diagnosis is already functional.
  7. A separate cancer unit has been designated for the patients and is currently undergoing renovation.
  8. Additional nurses have been hired for the Pediatric oncology unit.
  9. Plans are being discussed for the family support and nutrition program.
  10. Ward rounds and teaching by visiting faculty in medicine and nursing have already begun.

Goal: To officially initiate the two-year Fellowship training in January 2012.

Conclusion

This program has been the collective effort of numerous Ethiopian and INCTR faculty, administrative staff in Ethiopia, Washington DC and Brussels without whom this huge endeavor would not be possible. Finally, a special thanks to Mary Louise Cohen – it was largely her vision, enthusiasm and determination to make a difference in the lives of children with cancer in Ethiopia that led to the creation of the program (Figure 5).

Aziza Shad,
Georgetown University Hospital and INCTR USA


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