Quarterly news First edition -June 2011
Ethiopian Christmas Party for Paediatric Patients
Left: A view of the party. Right: Betty, who is from Ethiopian Airline and one among the organizers. Second from left,Mrs. Amsale, Mathiows’s mother
While judges gave briefing on the rules of the games
Left: Painting contest underway. Right: Guests of Honour accompanied by Dr.Yetenayet Abebe.
While members from Nativity Cancer Club donating Birr 4,000, which they had raised for paediatric cancer patients. The first International Symposium on Paediatric and Adolescent Cancer was held in collaboration with the Addis Ababa University, Black Lion Hospital, Georgetown University Hospital and INCTR on January 18-21, 2011. The event was considered the first step toward developing a comprehensive paediatric oncology program in Ethiopia. The Mathiwos Wondu-YeEthiopia Cancer Society and INCTR USA provided partial financial support for the symposium to be conducted as previously arranged.
Left: while Mr. Wondu Bekele presents a paper on cancer in Ethiopia and how cancer affected him and his family.
Paediatricians, medical residents and interns, nurses and pharmacists drawn from various universities and medical institutions in Ethiopia attended the meeting. International partners from countries such as USA, Canada, Switzerland, Belgium, Sweden, Israel and other low and middle-income countries also attended the symposium. The Ethiopian participants presented the realities of treating children with cancer in their respective country and discussed the many challenges they are right now facing. Panel discussions were held following each session to facility interactions among participants. The panels gave special attention to developing appropriate strategies to employ in Ethiopia given the lack of resources for managing cancer and providing effective supportive and palliative care.
The nursing workshop also held side by side with the symposium and that was realized as result of support got from two members of the committee in INCTR’s Oncology Nursing Program.
The nursing workshop also held side by side with the symposium and that was realized as result of support got from two members of the committee in INCTR’s Oncology Nursing Program.
"Cancer Can Be Prevented Too” Walk Program
The "Cancer Can Be Prevented Too” walk program, in commemoration of World Cancer and World Childhood Cancer days, was held on February 20, 2011 at Meskel Square, in Addis Ababa, Ethiopia. People estimated to be 800 partook in the walk programme including Dr. Ismael Hassan, who attended the ceremony representing Minster of Health. The rest of the participants were drawn from NGOs working on Diabetes, Heart, Kidney and Cancer prevention, and students from various schools. Dr. Bogale Solomon, who is the only Senior Oncologist in Ethiopia, presented a briefing and hosted a question and answer session.
Lack of cancer awareness is problem in Ethiopia. There is also lack of awareness about the magnitude of cancer in the country. The problem does not end here .There are stigmas and misconceptions about cancer; such as all cancers are incurable. Little has been done, to date, to promote the awareness that most cancers can be prevented, can be cured if diagnosed early, and quality of life of patients can be improved even if the disease is diagnosed at an advanced stage and e.t.c.., The event was hoped to be instrumental in changing all these misconceptions.
Left: Walk program in progress. Right: Members of newly established Ethiopian NCD Consortium expressing their commitment to challenge the growing burden of NCDs in Ethiopia.
Mathiwos Wondu-YeEthiopia Cancer Society held the seven general assembly meeting.
The Seventh General Assembly meeting of Mathiwos Wondu-YeEthiopia Cancer Society (MWECS) was held on Saturday, March 19, 2011 at German House-Conference Center. Mr. Zemichael Barnabas, Deputy Chairman of the General Assembly of MWECS, chaired the meeting. Members, cancer patients and their families attended the meeting.. The Assembly reviewed and accepted membership application requests of 79 candidates, of which 15 were students and 64 were employs at government and non-government organizations. The meeting reviewed and approved the operational report, financial statement and external audit report of the 2010 budget year and so does the action plan for the year 2011.
While Mr. Zemichael Barnabas and Ms. Tadelech Debele, General Secretary of the General Assembly of MWECS presiding over the meeting .
While Cancer patients and their families giving comments.
Approving the first strategic plan, financial and personnel manuals of MWECS were also other tasks undertaken by the meeting.. It also made a few amendments on the by –law concerning the delegation and appointment of an external auditor to the management board and developed a new schedule for the general assembly meeting.
The General Assembly was briefed by Mr. Wondu Bekele on the establishment of the Ethiopian NCD Consortium (ENCDC), whose objectives are to coordinate the activities of member organizations, help enhance the members’ capacities, and coordinate joint awareness and prevention activities. Finally, the meeting wound up by allowing Mr.wondo to represent the society in the consortium and continue delivering his active roles in the consortium.
Left: Meeting in progress. Right: General Assembly meeting participant poised for photos.
Easter party at the Black Lion Hospital
The MWECS held its annual Easter Party for the paediatric patients and their families at Black Lion Hospital on April 24, 2011 .Members and friends of MWECS actively participated in organizing the party in which more than 100 children and their familiesattended. Mr. Samuel Derebew, owner and Managing Director of The Victory Restaurant and National Café, sponsored the food and soft drinks expense as the usual.
Cancer patients and their families face many challenges .Events such as the above is believed to have importance for alleviating the emotional burden up on them.
Partial view of the participants attending the ceremony.
Build up to UN Summit on NCDs in New York
Consultative meeting on the tobacco control
The Ethiopian Food, Medicine and Health Care Administration and Control Authority (FMHACA) organized a two-day workshop to review and enrich the draft proposal by the authority to control the production and distribution of tobacco products in Ethiopia. The workshop was held in Bishoftu (Debre Zeit) on March 28-29, 2011. NGOs working on NCDs and cancer specialists took part on the meeting.. The participants reviewed the draft guideline according to The Framework Convention on Tobacco Control (FCTC) and Ethiopia’s specific condition. The draft proposal is expected to be signed in to law soon.
Tobacco Control Workshop
Governments and civil society groups around the continent are currently working with the WHO-Framework Convention on Tobacco Control (WHO-FCTC) to develop policies and strategies to curtail the growing burden of tobacco epidemic.
In tandem with these efforts, the Ethiopian Public Health Association (EPHA) in collaboration with Africa Tobacco Control Regional Initiative (ATCRI) and Framework Convention Alliance (FCA,) organized a one-day consultative workshop on April 30, 2011 in Bishftu (Debrezeit) city.
Members of the House of Representatives (Parliament), Ministry of Health, The Ethiopian Food, Medicine and Health Care Administration and Control Authority (FMHACA), Mathiwos Wondu-YeEthiopia Cancer Society (MWECS), and specialists drawn from various universities and institutions were among participants attended the Tobacco Workshop. The main purpose behind the workshop was to brief the parliamentarians on the growing burden of NCDs in Ethiopia and the need to ratify the long awaited WHO-Framework Convention on Tobacco Control. Tobacco, as plenty scientific studies vindicate, is the major cause for many Non- Communicable Diseases., .Ethiopia signed (WHO-FCTC) five years ago. Ethiopia is said, in relation to this, as one country in the league of a few nations in Africa, yet to ratify the framework agreement. Different study papers cover various aspects of tobacco and other related issues were presented by different individuals and discussed on the occasion. Finally full consensus was reached by the participants about the need to step up the efforts for the framework to be ratified by the House of Representative (Parliament).
Walk program to commemorate UN Summit on Non Communicable Diseases
The MWESC, in collaboration with the Ethiopian NCD Consortium and Prana Promotion, organized a walk program on May 20,2011 to rally behind the UN Summit on Non- Communicable Diseases (NCDs) . The program covered seven kilometers distance starting from Menelik Square down all the way to Addis Ababa Exhibition Center.
Members and supporters of the five member organizations of the newly formed Ethiopia NCD Consortium (ENCDC), and members of Ethiopian Scout Association acively participated in the program. Brochures on NCDs and t-shirts were distributed among participants.. The walk program later enjoyed wide media coverages.
Far left: Mr. Wondu Bekele, while presenting a closing remark .
World No Tobacco Day Observed
As one activity in series of others designed to commemorate World No Tobacco Day, a panel discussion was held at Ethiopian Television studio on May 31, 2011 .Mr. Wondu Bekele was among several guests invited for the occasion. In the discussion all participants underlined the spread of risky behaviors including smoking and attributed the surge in adopting risky behaviors to the low attention given to the epidemic by major stakeholders including the government. Participants during the occasion cited the findings of recent studies as evidence to show the spread of risk behaviors particularly among the youth population. They also raised the delay by the House of Representative from ratifying the Framework Convention on Tobacco Control (FCTC) as major setback in fighting the epidemic.
According to participants the ratification of the Framework Convention on Tobacco Control (FCTC) would be a vital step in the right direction as it spurs the designing of many national programs to curtail the growing burden of tobacco in Ethiopia. According to the participants Ethiopia is one of few countries in Africa yet to ratify the convention.
Mr. Wondu Bekele Made a Stay at MEET ETV
In a move recognize the strategic role media could play for raising public awareness on Non- Communicable Diseases as growing health thereat, Mr Wondu Bekele , who is the manger of Mathiwos Wondu Ye –Ethiopia Cancer Society, gave a twenty minute interview on June 9/2011. . The interview later broadcasted on ETV1andETV2 three times in the same week. Mr Wondu during his stay with Mr.Tefera Gedamu , who is a TV host and famous for show called meet ETV , raised a number of issues such as about the personal journey he made as a father of a child struggling with cancer ,the untimely death of his son and life changing experience he went through thereafter , about his multiple roles in Ethiopian Civil Society on cancer and other NCD platforms , the challenges Mathiwos Wondu – Ye Ethiopia Cancer Society encountering in order to remain on the course and deliver its objectives and finally about the kind of supports he would like to see realized from major donors and the general public.
Consultative workshop on the role Media in Challenging NCDs
A consultative workshop exclusively held for media stakeholderswas organized on June 14, 2011 in Addis Ababa. The workshop is , as explained above part of the build up to the UN Summit on NCDs in New York. On the occasion Mr. Wondu , who is the American Cancer Society’s Global Cancer Ambassadors for Ethiopia, gave briefing on cancer, and Dr. Ahmed Raja, Professor Kebede Dr.Amsalu Bekele, Dr. Lisan Seifu and Dr. Bogale Solomon also presented study papers on diabetes, cardiovascular, chronic lung disease, kidney and Cancer disease respectively. The role of media and proposed document on the out comes of the summit were presented by Mr. Solomon Abebe and Dereje Seyoum of Ethiopian Public Health Association (EPHA) respectively.
Left: Mr. Hailgnaw Eshete, Executive Director of Ethiopian Public Health Association (EPHA), presenting opening remarks. Right: Mr. Wondu Bekele, on his part presenting the study paper on cancer.
Exercise was part of the same workshop.
Wondu Interview with INCTR Newsletter
The media group is expected to post the full interview in the INCTR newsletter. The Mathiows Wondu – Ye Ethiopia Cancer Society is proud of the contact as it was initiated by INCTR after learned about MWECS and its progress. MWECS has decided to devote the remaining space of this newspaper for excerpts taken from this interview
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.
“MWECS 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 have been working ardently to improve treatment conditions to help alleviate the suffering of pediatric cancer patients and to increase their survival rate.”
Mathiwos far right, with his family.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. Thanks to improvements in cancer treatment, the cure rate among 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, until recently, the Ethiopian government has not been able to give proper attention to cancer. The Black Lion Hospital management and staff have done their best to improve treatment conditions, but lack the means to meet its objectives as a cancer treatment center. The hospital requires additional support to enhance its capacity to decrease the suffering of cancer patients and increase their survival rates.
Until recently, he says, there was no national strategy or program for the prevention and management of chronic diseases in Ethiopia. “I can't tell you how all of the NGOs working on non-communicable diseases(NCDs) in general and cancer in particular have struggled to survive without meaningful support from within or outside of Ethiopia.”
A professional with a degree in government affairs, a diploma in economics and more than 30 years of experience in human resources 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 more than 350 members and expects to top 500 members soon. “Our membership has to grow to meet the growing burden of cancer in Ethiopia in a meaningful way,” he says.
Wondu left a lucrative position in 2009 due to conflicting interests of the two jobs he was holding simultaneously, a permanent job with N.T.E and pro bono part time work with MWECS, in order to devote his full attention to the work of MWECS. In addition to his role as General Manager with the Cancer Society, Wondu is a member of the National Working Group on Non-Communicable Diseases formed under the Ministry of Health and the point person for the newly formed Ethiopian Non-Communicable Diseases Consortium (ENCDC).
The American Cancer Society recently named Wondu a Global Cancer Ambassador for Ethiopia “in recognition of his contribution and leadership role in civil society cancer control in Ethiopia.” As such, he travels to New York City in June 2011 to attend a workshop focused on building a strong global civil society “cancer voice.”
Wondu is proof positive that one person truly can make a difference. Under his leadership, the Mathiwos Wondu-YeEthiopia Cancer Society has played one of the leading roles in the development and implementation of the first strategic framework on NCDs and the establishment of Ethiopian NCD Consortium (ENCDC).
The long awaited Strategic Framework on NCDs in Ethiopia has been approved by Ethiopia’s Ministry of Health and included into the Fourth Health Sector Development Program (HSDP) as well as Ethiopia’s five-year Growth and Transformation Plan (GTP). “This is a major step forward,” says Wondu, “and one that can create an environment conducive to getting appropriate attention and support from the government and health care organizations.”
Still, MWECS’s financial position is tenuous and Wondu’s personal sacrifices are significant. For the last six years, MWECS operated from the family living room with just one permanent employee: a project officer whose salary is partially covered by CCRDA, a consortium of NGOs in Ethiopia. His wife and two children, along with other Society members, are volunteers, and perform most of MWECS’ activities without salary and payment. Through the generosity of the Society’s Board of Directors, as of December 1, 2009, Wondu receives a modest salary but he lost all benefits and allowances when he gave up his fulltime job to dedicate himself to challenging the growing burden of NCDs.
Just this year, Wondu moved the Society's office to the Getu Commercial Center in Addis Ababa. With a project officer and secretary now on staff, “we can begin to work at full strength, justifying MWECS’s existence and challenging cancer in a meaningful way.” However, due to lack of resources and outside support the Society is struggling for it existence, while the cancer toll and the need for assistance continue to grow. For this reason, MWECS seeks every kind of assistance for capacity building in order to maintain its progress against cancer.
Managing an NGO with limited resources is particularly challenging, Wondu says. “It is difficult to keep employees willing to work for low pay and without any kind of benefits, including health insurance and retirement benefits. The lack of transport capability makes our activities even more difficult. These problems have a huge impact on the MWECS’s plans and activities. It sometimes is very frustrating, particularly when you consider that NGOs working on communicable diseases in Ethiopia are better funded.”
While Wondu acknowledges tangible progress has been made in reducing infant and child mortality rates and in controlling major communicable diseases such as HIV/AIDS, tuberculosis and malaria, he recognizes the growing social and economic burden of chronic diseases.
“Ethiopia, widely believed to be one of fastest growing non-oil producing economies in Africa, is undergoing a rapid economic transformation that is accompanied by changes in the dietary and lifestyle behaviors of the population that contribute to increasing risks of preventable chronic illnesses,” notes Wondu.
Despite the best efforts of their caregivers, children with treatable cancer continue to die. Wondu was particularly affected by the recent death of Jemila, a young girl from northeastern Ethiopia whose parents together earn less than $40USD per month. Jemila was one of 60 desperately poor children supported by the MWECS. “We buy some medicines; expensive medicines like L-Asparagines not included, and cover the cost of transport between their villages and the hospital. However, we are unable to provide them with shelter. Because of this, the children have nowhere to stay between treatments and have no food to eat.”
At the annual event commemorating International Breast Cancer Awareness Month in October 2010, Jemila appealed to government leaders and the world at large for help. Wondu recalls Jemila 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, we are member of human community of small planet, earth” so that she might be cured and do the things she likes best—learning and playing.
“Unfortunately, we failed to save not only her, but so many others,” says Wondu. We are struggling to survive here, and look to the support of INCTR and others to help us avert the catastrophe of preventable and treatable cancer deaths.”
Wondu wants the world to know the magnitude of cancer related problems in Ethiopia. He also wants the people of Ethiopia to know that most cancer risk factors can be prevented, that cancer 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 USA President Aziza Shad, a pediatric oncologist at Georgetown University Hospital, conducted a four-day visit to Addis Ababa. That meeting resulted in Ethiopia’s first International Symposium on Pediatric and Adolescent Oncology, held in January 2011.
Jemila in the middle; from left Wondu, Mary Louise Cohen seated, Aziza second from right and two students during their working visit to Ethiopia last July. Wondu Bekele is one of founding members of the newly formed the Ethiopian NCD Consortium (ENCDC). In addition to his work to save the lives of children, as of last year he has strived to develop and implement the first palliative and hospice care project for pediatric cancer patients.
Want to help? Here’s how:
1) Help finance projects to enhance cancer awareness.
2) Help finance anti-tobacco campaigns and other wellness projects targeting young people.
3) Help MWECS to enhance the diagnosis and treatment of cancer in Ethiopia. Help finance projects intended to decrease the suffering of cancer patients and increase survival rates.
4) Enhance the capacity of the MWECS by increasing the number of staff. Sponsor a competitive salary and benefits package to allow staff to remain for longer periods.
5) Find new options for transport and office services.
6) Encourage the formation of national, regional and continental consortiums or alliances of cancer organizations in Africa.
7) Provide training for staff and volunteers.
8) Help to conduct a study to identify the existing position of cancer in Ethiopia.
9) Help to establish the first national cancer registry in Ethiopia.
10) Help to develop realistic programs as part of the National Cancer Control Program based on the recently approved Strategic Framework on non-communicable diseases.
11) Help to provide psychosocial support to pediatric patients and their families between treatments
Wondu thanks all who have supported the MWECS. “Our achievements in improving the lives of cancer patients in general and pediatric cancer patients and families in particular were made possible by the generous support and involvement of the Ministry of Health, Black Lion Hospital, CCRDA, UICC, INCTR and the members and volunteers of MWECS and so many others. In view of the relative youth of our organization, we know that we can’t improve all cancer related problems in Ethiopia in the near future, but we can still do something meaningful today.”
For more information, visit www.mathycancersoc.org