Mathiwos Wondu - Yeethiopia cancer society
- Wondu Bekele is one of founding members of the newly formed the Ethiopian NCD Consortium. In addition to his work to save the lives of children, he is trying to develop and implement the first palliative and hospice care project for pediatric cancer patients.
From the grief of parents who lost their youngest son to leukemia eight years ago, a ray of hope emerged for their fellow Ethiopian families facing a cancer diagnosis. The Mathiwos Wondu-YeEthiopia Cancer Society (MWECS), named in memory of their son Mathiwos Wondu, is one of the four non-governmental organizations (NGOs) in Ethiopia dedicated to cancer and the only one specializing in pediatric cancer.
“The society is working to improve cancer awareness,” says Wondu Bekele, who, with his wife Amsale Beyene and 13 other supporters, established the NGO in 2004. “We are also ardently working to improve treatment facilities to help alleviate the suffering of pediatric cancer patients and to increase their survival rate.”
Mathiwos Wondu, born June 17, 1999 in Addis Ababa, was diagnosed with acute lymphoblastic leukemia (ALL) just after he turned two. He was under intensive care at the Black Lion Hospital, the country’s only cancer treatment hospital, for 26 months. Despite the valiant efforts of his carers and family, Mathiwos lost his battle with cancer at the tender age of four.
“I joined the war on cancer after I lost my beloved son,” says Wondu. “I can't tell you how much cancer affected my family: emotionally, physically and financially. I don't have the right words to tell you how much we all miss Mathiwos.” Mathy’s parents vowed to support other families with children diagnosed with cancer, and to address the lack of cancer treatment options, medicines and specialist care in Ethiopia. Thanks to improvements in cancer treatment, the cure rate in pediatric cancer in developed countries surpasses 75%, but in Ethiopia the rate is estimated to be below 20%.
In Ethiopia, cancer is considered an incurable disease. “Because of limited financial resources,” Wondu says,”the Ethiopian government has not been able to give sufficient attention to cancer. Until recently there was no national strategy or program for the prevention and management of chronic diseases. NGOs working on non-communicable diseases (NCDs) in general and cancer in particular have been struggling to survive without meaningful support from within or outside Ethiopia.”
A professional with a degree in government affairs and more than 30 years of experience in human resources and personnel administration, Wondu now serves as General Manager of the Mathiwos Wondu-YeEthiopia Cancer Society. From a group of 15 founding members, the Society has grown to include more than 350 members and expects to top 500 members soon. “Our membership has to grow even more in order to meet the growing burden of cancer in Ethiopia in a meaningful way,” he says.
Wondu left a lucrative position in 2009 with the National Tobacco Enterprise to devote his full attention to the work of MWECS. Under his leadership, the Cancer Society is playing a major role in the development and implementation of the first strategic framework for managing NCDs in Ethiopia. In addition to his role as General Manager with the Cancer Society, Wondu is the point person for the newly formed Ethiopian NCDs Consortium (ENCDC) formed by five NGOs working on NCDs, namely cancer (two organizations), diabetes, kidney and heart.
The long-awaited strategic framework on NCDs has been approved by Ethiopia’s Ministry of Health and adopted into the fourth Health Service Development Program (HSD P) and into Ethiopia’s five-year Growth and Transformation Plan (GTP). “This is a major step forward,” says Wondu, “and should attract more attention to the ever-increasing problem of NCDs.”
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Still, MWECS’s financial position is tenuous and Wondu’s personal sacrifices are significant. For the last six years, the Cancer Society operated out of the family living room with just one permanent employee — a project officer whose salary is partially covered by a consortium of NGOs in Ethiopia. His wife and two children, along with other Society members, are volunteers. Through the generosity of the Society’s Board of Directors, Wondu after six years of free service, receives a modest salary but lost all benefits and allowances when he gave up his full-time job to give priority to challenging the growing burden of cancer in Ethiopia.
Recently, Wondu moved the Society's office from his residence to office space in the Getu Commercial Center in Addis Ababa. With a project officer and secretary now on the payroll, “we can challenge cancer in a meaningful way and justify our society's existence.”
Managing an NGO with limited resources is particularly challenging, he says. “It is difficult to find employees willing to work for low pay and it is frustrating when one sees that NGOs working on communicable diseases here are well funded.” Although Wondu recognizes that tangible progress that has been made in reducing infant and child mortality rates and in controlling major communicable diseases such as HIV/AIDS , tuberculosis and malaria, he points out that Ethiopia is undergoing a rapid economic transformation that is accompanied by changes in the diet and lifestyle of the population and is contributing to the increasing burden of preventable chronic illnesses.
Despite their best efforts - 60 desperately poor children have been supported financially by the Cancer Society - children with treatable cancer continue to die. Wondu was particularly affected by the recent death of a young girl, Beza*, from the northeastern part of Ethiopia, whose working parents together earn less than $40 USD per month. “We buy some medicines; expensive medicines like L-Asparagines not included, and cover the cost of transportation between villages and the hospital, but due to our weak financial position, we are unable to provide families with shelter. Because of this, they have nowhere to stay between treatments and have no food to eat.”
At an event commemorating International Breast Cancer Awareness Month in October 2010, Beza appealed to government leaders and the world at large for help. Wondu recalls Beza posing the question “why the place we live determines whether we live” and asking that the world community “please send us medicines about to be expired” so that she might be cured and live again the life of a healthy child.
Wondu wants the world to know the magnitude of the problem in Ethiopia. He also wants the people of Ethiopia to know that most cancers can be prevented, that they can be cured if diagnosed early, and that a patient’s quality of life can be improved even if the disease is diagnosed in advanced stage.
International organizations are beginning to take notice. Last July, a delegation led by INCTR’s US A President Aziza Shad, a pediatric oncologist at Georgetown University Hospital, visited the Black Lion Hospital, and subsequently helped organize Ethiopia’s first International Symposium on Pediatric and Adolescent Oncology in collaboration with the Addis Ababa University, Black Lion Hospital, Georgetown University Hospital and INCTR US A. This represented the first step towards developing a comprehensive pediatric oncology program in Ethiopia, which will be focused on the training of health care professionals to deliver protocol-based treatment for children with curable cancers and ensuring the availability of the necessary drugs and equipment. The program will also include the development of appropriate palliative care and pain management services for pediatric cancer patients. “We look to the support of INCTR and others to help us avert the catastrophe of preventable and treatable cancer deaths,” says Wondu.
