Presentation to the Parliamentary Committee on Health

2. Presentation to the Parliamentary Committee on Health CHOC Childhood Cancer Foundation South Africa 24th August 2011

3. Attendees From CHOC Mzwandile Khanya Parent, whose daughter died of Acute Myloid Leukaemia in 2005. Chair of CHOC Francois Peenz Parent, whose daughter survived Acute Lymphoblastic Leukaemia CEO of CHOC. Julian Cutland Parent, whose daughter survived Aplastic Anaemia. Former Chair of CHOC; Former Board Member (2001-8) of the International Confederation of Childhood Cancer Parent Organisations (ICCCPO).

4. Attendees South African Children’s Cancer Study Group (SACCSG) Prof Mariana Kruger Executive Head of Paediatrics, Tygerberg Childrens Hospital Continental President for Africa, International Society for Paediatric Oncology (SIOP) Member of Executive Committee of SACCSG Prof Alan Davidson Head of Paediatric Oncology, Red Cross Children’s Hospital Former Chair of SACCSG Ms Tiisetso Tshehle Social Worker

5. Presentation outline Myths and facts About childhood cancer What CHOC contributes Cultural Challenges in Oncology Going forward

6. Myths and Facts - 1 Myth: Children don’t get cancer Facts: Worldwide, 1 child in 600 gets cancer before age 16 In SA, should have 2100 children diagnosed Actual: ~700 pa reported Thus > 1000 children go undiagnosed and untreated

7. Myths and Facts - 2 Myth: Cancer is a death sentence Facts: With early diagnosis and correct treatment, ~75% of children can be cured, and lead full & normal lives. Survival rate in SA is lower, especially due to non-recognition and late diagnosis

8. Myths and Facts - 3 Myth: Cancer is a “white man’s illness” Facts: Cancer has no respect for ethnic origin, wealth or social status Children with cancer are fully representative of population demographics

9. About Childhood Cancer -1 Childhood cancers are different from adult ones in types and frequency not “lifestyle-related” not preventable Different treatment protocols from adults

10. About Childhood Cancer -2 Proven and accepted worldwide that children must be treated: in paediatric oncology units (POUs), by paediatric oncologists using paediatric protocols Treatment centres in major tertiary / academic hospitals SA has world class treatment centres, using international protocols but struggle with limited resources

11. About Childhood Cancer -3 Treatment consists of combination of chemotherapy, radiation, surgery Treatment is intensive and long (1 – 3 years) requires regular visits to treatment centre places a wide range of demands on whole family time, financial, emotional, spiritual, information extra pressures when child is from “out of town” Important to treat the whole child, and not just the illness

12. About Childhood Cancer - 4 Teenagers and adolescents present special issues Proven that they do better on paediatric protocols in paediatric units Different social, psychological needs Trend in many countries for specialist teenage cancer units Children should be nursed in wards suited for their developmental needs and similar age

13. CHOC Background Traumatic event to have a child diagnosed with a life threatening illness CHOC is an organisation of parents who have been through this Started in Jhb in 1979 Became a national organisation in 2000 Now have divisions in all major centres Emphasis on working with medical staff

14. What CHOC contributes - 1 Provide wide range of services for families Psychosocial & emotional support From other parents; from volunteers Now have our own social workers Funding for transport To prevent abandonment of treatment for financial reasons

15. What CHOC contributes - 2 CHOC houses A “home away from home” for families from out of town For parents to stay when child is being treated, or in hospital CHOC owns 7 houses (5 from Danone project), and rent 2 more

16. What CHOC contributes - 3 Child-friendly wards Hospitals are frightening places Age-appropriate decorations, toys, games, TVs, etc Volunteers, to support children and parents Information Understanding the illnesses, treatments And how best to cope with things

17. What CHOC contributes - 4 Primary focus on public sector hospitals Medical equipment Support for doctors & nurses to attend conferences Improvements in the treatment centres (eg revamp at Bara) Funding staff to maintain childhood cancer registry since 2000

18. What CHOC contributes - 5 Advocacy & awareness Medical and nursing; general public Aim is early diagnosis and effective treatment Warning Signs from SACCSG – lead to critical improvement in early diagnosis Cooperation with other role-players Government NGOs Cancer-related; Hospices; Just Footprints; TGO International connections (ICCCPO)

19. What CHOC doesn’t contribute CHOC does not fund treatment Responsibility of the Government and Medical Aids But we do a lot of other things to support the children and families! Major financial support for child to attend treatment

20. Challenges of Culture in Oncology Cancer is increasing in prevalence and incidence Most indigenous languages do not include a word for Cancer It affects patient’s notion of disease and response to treatment The use of tonic and herbs to strengthen resistance (traditional healing) Educational attainment and functional literacy (gold-fish syndrome) Relationship of culture to health is complex and still poorly understood Cancer is associated with social stigmatisation in some cultures.

21. Overcoming the challenges Communication Listening Value diversity Cultural self-assessment Consciousness of dynamics inherent when cultures interact Institutionalise cultural knowledge Develop programs and services that reflect an understanding of diversity between and within cultures Acknowledge how fears and ignorance influence attitudes, beliefs and feelings.

22. Benefits of Cultural Competence Improved therapeutic outcome and relationship Decline in disparities in medical care Survival and improved well-being Effective cross-cultural negotiation BUT logic and human behaviour seldom walk the same road (Bar-on; 2001:299).

23. Going forward 1: What is a child? SA Constitution - <18 years of age Norm: upper age limit in hospitals is 12 yrs So a child of 13 is often treated in an adult ward!! Most under 15 do end up in paediatric units Proven that teenagers do better on paediatric protocols, in paediatric units All children up to 16 at least treated in paediatric units – Need adolescent units

24. 2: Funding of Childhood Cancer Not all provinces have treatment centres Some specialist treatments only done at one centre Tertiary grants to provinces to fund various things, including cancer In theory, funds paid to province / hospital which provides treatment In practice, it doesn’t work International patients also a problem

25. 3: National Cancer Control Plan& Policies for Childhood Cancer Move to make cancer a “reportable illness” is a very positive step No national statistics for cancer since 2000 SACCSG childhood cancer registry – 1987 till current (incomplete data but available)

26. 3: National Cancer Control Plan& Policies for Childhood Cancer “Call for Action” from survivors (May 11) Burden of cancer not well recognised Priority to produce coherent plan (NCCP) Policy for childhood cancer must be part of the NCCP

27. 4: UN Summit on NCDs Only illness prioritised by UN is HIV/AIDS Implications on international funding Summit on Non-communicable diseases UN. New York, Sept 2011 Hope to have cancer as one of illnesses “recognised” by UN as priority Including childhood cancer

28. 5: Awareness of Childhood Cancer Lack of knowledge in medical and nursing professions Many cases not recognised, or only at advanced stages Need to create awareness at primary care level, and up referral chain Incorporate childhood cancer into IMCI process (Integrated Management of Childhood Illnesses)

29. 6: Hospital Schools All children have a right to education Children who are hospitalised for a long period lose out on their schooling Some hospitals provide good schools in the hospital But many have nothing, or of poor quality Responsibility of Dept of Education, but not happening well

30. Concluding remarks CHOC is established as the voice of children with cancer, and their families We focus on ensuring that all children are diagnosed, are treated effectively, and are provided with all the support they need. We work cooperatively with all role-players

31. Concluding remarks There is still much to be done NEED PUBLIC-PRIVATE PARTNERSHIP between Health and Education Departments and CHOC

32. Thank you for the opportunity to talk to the committee