Mathiwos Wondu –YeEthiopia Cancer Society (MWECS)

1. The Impact of Childhood Cancer on Families Wondu Bekele January 20,2011 Addis Ababa Ethiopia Mathiwos Wondu –YeEthiopia Cancer Society (MWECS)

2. General information Personal Introduction • I am married and living together with my wife for the last 27 years and hoping to live with her for the rest of my life. Together we have two kids. • A Human Resources Manager by profession. • More than 30 years of experience in Administration and Human Resources Management. • I joined the war on cancer just after I lost my beloved son due to leukemia (blood cancer) seven years ago. • Since the Society’s establishment in April 2004, up to December 1, 2009, I had been working as General Manager of MWECS without salary or payment. • I was holding two jobs simultaneously. • I resigned from my full-time job due to conflicting of interest of the two jobs I was holding and joined Mathiwos Wondu-YeEthiopia Cancer Society full time as of December 1, 2009.

3. Personal Introduction • I left my permanent job with attractive salary and benefit hoping that I contribute my part in challenging the disease that taken away my son and affecting so many of our people here and worldwide. • I had a choice between tobacco and cancer. • Due to these sometimes I feel like I am in the middle of no where. • I don’t regret joining the war on cancer and I am proud of what we are jointly doing here with our group to challenge the growing burden of NCDs here in Ethiopia. • Without any doubt I have committed the rest of my life to the fight against NCDs in general and cancer in particular.

4. The Impact of Childhood Cancer on Families • Who is Mathiwos ? • Mathiwos, is my youngest son, was born on June 17, 1999 in Addis Ababa, Ethiopia. • Until he celebrated his second birthday he was very healthy, energetic and his growth • was corresponding to his age. • A few days after celebrating his second birthday, he un-expectedly became ill, and after • clinical check up and investigation he was confirmed to be ALL-type Leukemia Cancer • patient. • It was very hard for us to accept what physicians were trying to tell us about his • condition. We are lucky to survive that black Friday. • Our son who left our house to the hospital in the morning for check up ended up • sleeping inside the corridor of the Black Lion Hospital.

5. The Impact of Childhood Cancer on Families • We had no knowledge of cancer in general and ALL leukemia in particular. • We were getting different sometimes contradictory information about cancer. • Mathy was forced to remain under treatment inside the corridor for about 10 days. • Afterwards he was transferred to the 7th floor and admitted with another 3 kids. • Immediately treatment protocol was decided and we were instructed to bring several kinds of cancer and related medicines we have never heard of.

6. The Impact of Childhood Cancer on Families • It is very hard to tell how the diagnosis of cancer in a child is terrifying for us family. • We learnt about Mathy’s cancer during a routine check up and we were not ready to listen to what physician were telling us. • We parents of Mathiwos and every body here in most cases including physicians have a very distorted picture of cancer. • Most of Cancer and related medicines were not available and we had to import from abroad. • Cancer diagnosis and treatment was and still in a bad condition. • There was no isolated room for pediatric cancer patients and due to complication Mathy forced to discontinue his chemotherapy treatment twice. • There was no facility for HLA test here in Ethiopia and at one time we were about to fly to Nairobi with my family of 5. • We had mixed feeling ,at one hand the bad news we hear from inside Ethiopia about cancer and the good news was from abroad how cancer in general and pediatric cancer under the age of 10 is very treatable and high curing rate.

7. The Impact of Childhood Cancer on Families • Since then for the next more than two years we had to import several kinds of cancer and related medicines from India and elsewhere. • Mathiwos was widely believed to be one of the best treated patients ever. • Mathy was seen as a good reference and hope to cancer patients and their families. • After 22 months Mathy’s Leukemia relapsed.

8. The Impact of Childhood Cancer on Families Who is Mathiwos ? Mathiwos with his parent under treatment at the Black Lion Hospital

9. Who is Mathiwos ? Cont’d

10. The Impact of Childhood Cancer on Families • Accordingly the Medical Board of the Hospital decided that there was no proper medication left for Mathiwos here in Ethiopia. • Again we have decided to do what ever it takes to take him abroad and cover the huge cost we have been told. • We decided to sell our only house to finance his overseas treatment. • National Cancer Institute (NCI/NIH) of Bethesda, MD, USA agreed to accept Mathy for further treatment option including bone marrow transplant.

11. Mathy was about to fly to Washington. • Mathiwos passed away on September 24, 2003. • A group of people of different races and nationalities from three different continents, many of whom without knowing each other, tried together everything that is humanly possible to save his life. • The best way to appreciate the new development was to establish MWECS.

12. Overview of MWECS • Was established - April 17,2004. • Is dedicated to the national control of cancer. • Is committed and aspires to serve and support cancer patients, but due to weak financial position focuses on paediatric cancer. • Has secured certificate bearing the number 1382, which symbolizes legal personality.

13. Overview Cont.. MWECS is member of: • Consortium Christian Relief & Development Association (CCRDA). • Code of Conduct (COC). • International Union Against Cancer (UICC). • International Confederation of Childhood Cancer Parents Organization (ICCCPO).

14. Vision Of MWECS • Is to play active role in the national and International concerted efforts to create a world where cancer is eliminated as a major life-threatening disease for future generation.

15. Objective • Enhance the society's awareness of cancer • Create conducive condition for prevention, early detection, treatment and care of cancer. • Provide moral and material support to needy ones. • Help to establish National Cancer Institute. • Help and encourage National Education and Health Institutions to conduct research on cancer

16. Major Approaches Followed by MWECS Ensure public awareness of cancer and its treatment possibilities. 1st Approach • Developed and Distributed 11 kinds of brochures • both in Amharic & English. • Have dynamic web site. • Give frequent interviews and press releases. • Conduct workshops and conferences. • Organize walk programs. • Conduct Anti-Tobacco-Campaign.

17. Some of Awareness Creation Activities Carried out by MWECS Anti Tobacco Campaign Launching Program

18. Higher government & international organizations officials-His Excellency Ambassador Mohammed Dirir, Dr. TedrosAdhanom, Dr FatumataTraore of WHO Country Office,Mr. BerhaneDeressa,former mayor of Addis Ababa, & H.E MuferihatKamil,former Minister of Women Affairs, athlete Haile /Selasse during breast cancer walk.

19. Beauty contestants from all of the world during breast cancer walk.

20. . The first Ethiopian breast cancer survivor bold enough to come out openly and share her experience

21. Major Working Areas cont… Advocacy & Support Program 2nd Approach • Design & implement projects. • Monitor and evaluate projects. • Develop of Strategic framework • on NCD at national level.

22. Major Working Areas cont… • According to recent progress report of 2010 by WHO - IAEA joint programme on cancer control, worldwide, non-communicable disease (NCDs) including cancer, account for 60% of global death; however, just 0.9% of the USD 22 billion spent on health by International aid agencies in developing countries is spent on NCDs. • Due to ever improving modern treatment, survival rate of many pediatric cancers in most developed countries is approaching 75% while in most developing countries is less than 20%. • Thanks to our, (NCDs working group at national level in which our society is well represented) concerted and continuous effort the long awaited strategic framework on NCDs in Ethiopia finally approved by the state Minister of Health recently. • Ethiopian NCDs Consortium has been formed and about to be registered and get legal personality. • Towards these end our society has been playing the leading role and our society’s office will be used as temporary office of Ethiopian NCDs Consortium.

23. Objectives of Strategic Framework • Facilitate the establishment of a functional unit for the prevention and control of chronic diseases, at all levels of the health system, • Position chronic disease prevention and control in the national health sector development program (fourth and subsequent cycles); • Integrate chronic disease prevention and control with primary health care; • Insure availability of trained human and technical resources for NCD prevention and control at all levels of the healthcare system; • Develop and sustain the systems and capacity for leadership needed for effective collaboration across socioeconomic sectors; • Establish and foster partnerships and collaboration across various sectors relevant for promoting healthy diet and physical activity, and for preventing harmful behaviors such as smoking and the use of other substances

24. Objectives of Strategic Framework con’t • Formulate legislations that promote healthy diet and physical activity and restrict the use of tobacco, alcohol and other addictive substances; • Allocate a regular budget and to mobilize financial resources for chronic disease prevention and control programs; • Promote early detection and clinical management of selected chronic diseases or risk factors; • Improve the completeness and reliability of the HMIS so as to generate more accurate data on chronic diseases; • Design and implement a national program for the surveillance of chronic disease risk factors and selected chronic diseases; • Promote epidemiological research on chronic diseases and their risk factors;

25. Progress Report on Palliative and Hospice care project Overall objective The overall objective of the project is to decrease the suffering of children with various types of cancer. Specific Objectives to: • Help children diagnosed with cancer under treatment. • Provide palliative /hospice care for cortically ill children.

26. Progress Report on Palliative and Hospice care project con’t • From what we know, it is first of its kind in Ethiopia and so far the only one at the present. • To help to improve the existing treatment condition and help pediatric cancer patients and their families. • Intended to decrease the suffering of pediatric cancer patients and increase their survival rate. • Cost of the project-120,000 Birr = (USD 7,272). • Financed by-Birr 70,000 by the Ambassadors and Heads of Mission Spouse Group (AHMSG) and Birr 50,000 was raised by walk program.

27. Project Achievement and Progress • So far we have been supporting 60 paediatric cancer patients. • Of the total supported patients the major type of cancer diagnosed among children is ALL blood cancer (Leukaemia) - 27 cases or 45%. • The project beneficiaries are from different regional states of Ethiopia. • Of the total 60 children covered by of the project so far 16 or 25% died due to cancer complication and we lost contact with 14 or 23% of them. At present we are supporting 30 pediatric cancer patients.

28. Some of pediatric cancer patients supported by the project receiving chemotherapy medicines.

29. Project Achievement cont…

30. MATHIWOS WONDU – YEETHIOPIA CANCER SOCIETY STATEMENT OF ACCOUNT FOR CHILDREN CANCER PATIENTS SUPPORT THROUGH HOSPICE ETHIOPIA As at November 18, 2010 • Budget Allocated in Birr (1USD=16.50 Birr) 120,000.00 • Utilized amount of the Budget • B.P.VNo DateAmount • 0091 24-11-09 10,000.00 • 0060 25-01-10 9,904.90 • 0154 23-02-10 9,904.90 • 0006 17-04-10 10,000.00 • 0015 21-06-10 10,000.00 • 0027 09-07-10 9,900.00 • 0031 10-08-10 9,697.00 • 0036 24-08-10 7,200.00 • 0040 08-09-10 7,200.00 • 0046 15-10-10 8,683.15 • 0051 12-11-10 7,972.20 • Total Utilized amount 100,462.15 • Unutilized amount/Balance/ 19,537.85

31. Project Achievement cont… • Assigned a responsible nurse to follow the day to day condition of patients. • Provide medicines. • Cover transportation cost of needy patients and their families. • Currently the society has its own office and managed to employ few permanent staffs.

32. Major Problemsand Challenges related to the project • Acute shortage of cancer and related medicines. • Lack of finance for nutritional support. • Number of patients are beyond project capacity. • Lack of finance for transport allowance and accommodation. • Price fluctuation increase on some medicines, • Some medicines are beyond our capacity. • Lack of finance for care giving nurses. • Weak organizational and financial position of our society.

33. Future Plan • The project to be continued & strengthened. • The beneficiaries of the project will be identified based on their curing and survival rate. • The project will be strengthened to accommodate more pediatric cancer patients with close collaboration of donor organizations. • The project will incorporate training of health professionals to give better treatment options for patients. • Establish cancer center here in Addis in which proper cancer treatment will be given and in future can serve as cancer center and hospital. • To find support from donors and conduct some of our project proposals. • There is a plan to initiate our own income generating

34. Future Plan • The on-going effort on NCDs in general and cancer in particular should be consolidated. • MWECS should be strengthened organizationally and financially to implement its objectives. • More projects need to be designed and funds must be secured to insure the implementation of planned activities. The society needs to work more on donor diversification. • In order to reach as many beneficiaries as possible more and more funds should be secured.

35. Until we have full-fledged cancer hospital, it is high time to have cancer ward each for pediatric and others. • Cancer specialists should be trained. • Most essential cancer and cancer related medicines should be available in the local market. • Moral and material support should be available for needy pediatric cancer patients and their families. • Concerted efforts should be taken in prevention and early detection of cancer. • United front should be formed nation-wide to challenge cancer in a meaningful way.

36. Thank you! Mathiwos Wondu –YeEthiopia Cancer Society Web Site: www.mathycancersoc.org E-mail: mathycancersoc@ethionet.et ; wondu@mathycancersoc.org