1. Dr Jane Skeen- for the NZ NCCN Pacific working group
Bridging the Gap- Improving the Outcomes of children with Cancer in the Pacific
Fiji 1 December 2016
Dr Jane Skeen- for the NZ NCCN Pacific working group

2. Outline Background Current situation in NZ NZCCR 2000-2009 The Gap
NCCN Pacific Child Cancer Project 
Orientation to philosophy of treatment
8 years of progress/enhancements
Challenges faced
Future
Next

3. Background
1930s- childhood cancer reported as separate disease from adults
1940s -“Cancer- Child Killer” “Cancer kills children too” “Acute leukaemia – death sentence”
1950s-Clinical cooperative trials- USA
1960s- improvement in survival
1970s- communication about dying
1980s- expectation of cure

4. Background
Survival of childhood cancer has improved dramatically over the decades
Last 2 decades cost disproportional to increments in survival
With contemporary therapy overall survival is 80% in developed countries
Improved survival as a result of:
Research based clinical trials
Supportive care
New treatment modalities

5. The current situation in NZ
150 children (<15yrs) are diagnosed with cancer each year
80% of them will be cured as a result of contemporary therapy
About half will live completely normal lives, the others will have residual issues related to treatment or their original cancer
Incidence of Child Cancer (NZCCR )
149.3 per 10,000 children per year (age )
Next

6. Usual distribution childhood cancers
Incidence – commonest under 4s
Slight make preponderance but NS

7. Incidence of Common Cancers by Ethnicity
Age Adjusted Incidence (per 1,000,000 per year)
Maori
Pacific Peoples
Non-Maori/Non-Pacific
Leukaemia
46.5
71.5
52.4
CNS tumours
26.0
29.1
35.5
Lymphoma
11.1
11.9
14.0
Neuroblastoma
10.0
5.3
11.0
Soft Tissue Sarcomas
8.5
3.2
12.5
Germ Cell Tumours
15.9
5.2
No significant incidence differences for all diagnostic groups

8. International incidence of Child Cancer
New Zealand
Germany
Great Britain
Australia
US (SEER)
Age standardised rate
Overall childhood cancer
149
160
138
156
173
Leukaemias 51 56 48 52 54
Lymphomas 13 16
CNS tumours 32 36 35 44
Neuroblastoma 10 12 9 11
Retinoblastoma 4
Renal tumours 7 8
Hepatic tumours 1 2 3
Malignant bone tumours 5
Soft tissue sarcomas
Germ cell tumours 6
NZ incidence data comparable to available international data
The only published data for Pacific is from French Polynesia /million

9. Survival by Prioritised Ethnicity
Ethnicity does not impact on relative survival for New Zealand children with cancer

10. International survival of Child Cancer
Relative survival for New Zealand children with cancer is favourably comparable with other countries

11. Conclusions
Child Cancer incidence in New Zealand is comparable to elsewhere in the developed world
There are no significant differences in incidence between Maori, Pacific Peoples and Non-Maori/Non-Pacific Peoples
Relative Survival in New Zealand is comparable with elsewhere in the developed world
In New Zealand relative survival for Maori and Pacific Peoples is comparable to Non-Maori/Non-Pacific Peoples
Summary: In New Zealand relative incidence and survival for Maori and Pacific Peoples is comparable to Non-Maori/Non-Pacific Peoples

12. The Gap Children with cancer are not all “equal”
Where they live does make a difference to whether they are offered treatment, survive or die
More than 80% of the children worldwide live in less affluent countries where childhood malignancies form an important part of the morbidity and access to adequate treatment is often not possible
80% resources consumed by the 20% treated with modern therapy
Cure rates of around 50% for many types of childhood cancer are possible in less well resourced countries with lower cost therapies, providing basic services can be organised and supported
Prior to 2006 our Pacific neighbours were in the 80% with inadequate access to treatment

13. Country or Region
Access to diagnosis
Access to treatment
EFS of treated patients
Cure rate
High- income countries
100%
80%
Eastern Europe
95%
70%
63%
Guatemala
44%
43%
19%
China
10% 7%
Malawi
20%
30%
40% 2%

14. Prior to 2006 our Pacific neighbours were in the 80% where little or no access to child cancer care
As efforts to reduce mortality from infectious diseases are successful, cancer is of increasing importance as a cause of morbidity and mortality
In NZ-cancer is the 2nd most common cause of death in childhood behind accidents
In Pacific – cancer 4th

15. Concerns in NZ were raised regarding:
Small number of cases diagnosed: What happened to the remainder?
Of the small numbers diagnosed only some offered treatment and of those only small percentage accept and continue with treatment
Very small proportion accepted for treatment in New Zealand (NZ)- how were these cases selected?
High cost of treatment in NZ ~ NZ$120,000 per case It could potentially be done much cheaper in the Pacific: more cases could be offered treatment
High mortality if returned to Pacific Islands on treatment (before training of Pacific health professionals undertaken)
Expertise is not transferred to the Pacific if the children are treated in NZ

16. Childhood Cancer in the Pacific
Assume incidence same as child years
40% population<15yrs
(NZ: 24% <15 yrs)
French Polynesia has published a rate of 125/million between 1985 and 1995
Need for a Pacific Child Cancer registry- as of 2015-in development
PNG 420
Fiji
Solomons 26.8
Vanuatu 11.8
Samoa 10.4
Tonga 5.7
Kiribati 5.5
Cook Islands 1.8
Tuvalu 0.56
Tokelau 0.06
Niue
Assumed figures
Highlights need for Pacific Child cancer registry-in development as NCCN project

17. Concept of Twinning
Resourced centre with a less resourced centre/country
e.g: St Jude (Memphis, USA) with Recife Brazil

18. Fundamental Concepts for Paediatric Oncology Twinning Programme
People
Commitment
Planning
Comprehensive treatment
Sharing of knowledge
Funding
Community Awareness and Participation
Accountability

19. Components for Establishing a Twinning Programme
Initial assessment
Identify Local leaders
Grassroots NGO
Establish an initial 5 year plan
Establish collaborative agreement
Establish and implement hospital-based tumour registry
Financial assistance
Targeted education and training
Telecommunication and web conferencing
Follow-up site visits
Celebrate and publish success
Expand programme

20. International experience –Twinning models
Success
Work with local political and health leaders to ascertain their view of their needs
Collaboratively work towards a solution which addresses their priorities
Accept that externally driven solutions will fail
Acknowledge that, in spite of taking all the above steps, the time course of implementation of a basic child cancer strategy is subject to many variables, only some of which are controllable
Service failure when lack of:
continuity of external support
critical resource
strong local leadership
successful outcomes

21. Pacific working group was set up in 2006
To review outcomes of children referred from the Pacific
To investigate whether twinning with Pacific nations was feasible
To initiate cooperative programmes with those Pacific countries which regarded child cancer as a priority health area

22. Various myths persisted about cancer in the Pacific
Cancer is incurable
Cancer is shameful and best not diagnosed
When it occurs in Pacific peoples, the outlook is much worse than for other ethnic groups (not supported by NZCCR)
Cancer treatment is prohibitively expensive
Cancer treatment is too complex for Pacific health systems
Cancer is incurable Cancer is shameful and best not diagnosed
When it occurs in Pacific peoples, the outlook is much worse than for other ethnic groups
Cancer treatment is prohibitively expensive Cancer treatment is too complex for Pacific health systems

23. Pacific Child Cancer Project 2006-2008
Three regional meetings with work stream and Pacific health professionals
Auckland May (in conjunction POSG meeting)
Apia September (in conjunction PMA )
Suva May 2008
Participation/presentation annual meetings of the Pasifika Medical Association
Nursing education/training in Auckland and Christchurch for nurses from Fiji and Tonga
Laptops/digital camera for Samoa/Tonga and Fiji
Funded by NZAID
Visits by PI work stream to Tonga/Samoa/Vanuatu/Fiji/Cook Islands
Meetings with key clinicians, health service administrators and politicians
Facilitated with mentoring and advice/guidance from Debbie Sorensen (HSL) Dr Kiki Maoate Dr Api Talemaitoga

24. In NZ – look to out near neighbours in the Blue Continent.

25. Country specific models
The Pacific is a region with a small, widely dispersed population which makes models successfully used elsewhere inappropriate
Different needs within the region
Different capabilities and priorities
Different solutions
Different speed of implementation
Is curative therapy for children with cancer a priority?
Is the paediatric infrastructure developed?
Is finance available for off island referral?
Are there sufficient patient numbers to develop expertise at the paediatric centre?

26. Fiji Solution: Child Cancer treatment a priority
Treat on PI protocols at the 2 centres with remote support/ twinning from Christchurch, NZ
Visits by Christchurch team to Fiji
Regular tele-conferencing with Suva and Lautoka
Child Cancer treatment a priority
2 Paediatric centres (Lautoka, Suva)
Limited finance for off-island referral but public health care available for treatment in Fiji
40-50 new child cancer cases expected each year

27. Tonga Solution: Child Cancer treatment a priority
Paediatric centre Vaiola Hospital, Nuku’alofa
Limited finance for off-island treatment
Small numbers (<10 new cancer patients/year) so not enough for a child cancer centre but enough to share care with an external oncology centre
Solution:
Diagnose
Triage as per guidelines
ALL-start PI ALL1 and if favourable response Day 8 send eligible patients to Starship Auckland for induction/consolidation then repatriate to complete protocol in Tonga with remote support from Starship
Other cancers as per guideline

28. Samoa Solution: Diagnose, triage as per guidelines Model as for Tonga
Child Cancer treatment being considered as a priority in 2007 – confirmed 2010
Paediatric centre at TTM hospital, Apia
Limited finance for off island treatment
Small numbers (<10 new cancer patients/year) so not enough for a child cancer centre but enough to share care with an external oncology centre (Starship, Auckland)
Solution:
Diagnose, triage as per guidelines
Model as for Tonga

29. Cook Is / Niue / Tokelau Solution:
Child Cancer treatment a priority (and expectation)
Paediatrics only in Rarotonga (Cook Islands)
Very few patients (1 / 1-2 years)
Finance available (entitlement to care in NZ)
Solution:
Transport to NZ for treatment on COG and other established protocols

30. Vanuatu (as of 2007) Solution: Child Cancer treatment not a priority
Provide information including palliative care guidelines
Remain available for advice and discussion
Child Cancer treatment not a priority
Limited paediatric expertise
Limited finance for off island treatment

31. Summary Co-operative program development is vital
Establish relationships with key clinical and political decision makers
Confirm that child cancer care is a priority
Identify champions with local status
Commit to the long term
Identify the needs
Understand that needs are different and solutions which work somewhere else may be inappropriate
Assemble resources relevant to the area and develop protocols and guidelines cooperatively with those who will need to use them

32. In collaboration with Pacific Island health professionals, agreement reached on:
A philosophy behind treatment protocols
Triage guideline (includes who will receive treatment aimed at cure “good risk” cancers-and who will be supported by palliative measures)
Twinning relationships
Christchurch with Fiji – treat children in country with support from Christchurch Paediatric Oncology
Starship with Tonga, Samoa, Vanuatu, Cooks, Tokelau, Niue
Tonga and Samoa- “intensive” part of protocol at Starship Blood and Cancer then return to complete “less intensive” chemotherapy in country with ongoing support from Starship

33. Associated themes
The need for palliative care guidelines for those not eligible for curative therapy and supportive care guidelines
Recognition of the importance of child cancer registration in the Pacific
With the PI protocols, survivors are unlikely to have debilitating late effects from treatment which limit their quality of life in an environment with limited rehabilitation or welfare services

34. Triage – identifying ‘good risk’ cancers
Principles
an initial “cut-off” level of around 70% overall survival in developed countries is reasonable
it is assumed that the 70% overall survival will translate into a lower survival in the Pacific Island Country (PIC)
cure should be attained at minimal cost of significant late effects – the PIC should not be burdened with caring for cured but significantly disabled survivors of childhood cancer
cure should be attained without significant financial cost to the PIC
cancers potentially curable with treatments entirely or predominantly delivered in the PIC
those children whose cancer is less curable should be treated according to the Palliative Care Guidelines
these are guidelines – each case should be considered on its individual merits
Collaboratively agreed principles.

35. Triage – identifying ‘good risk’ cancers
1. Acute Lymphoblastic Leukaemia
2. Lymphoma
Hodgkin lymphoma
Non-Hodgkin lymphoma
T-cell non-Hodgkin lymphoma
B-cell non-Hodgkin lymphoma
Anaplastic large cell lymphoma
3. Wilms Tumour
4. Retinoblastoma
5. Germ cell tumours
Most cases, even those with metastases, are very curable with a combination of chemotherapy and surgery.
6. Acute Promyelocytic Leukaemia: provided ATRA available
7. Hepatoblastoma: non-metastatic cases with a strong likelihood of resection (pretext stages 1, 2 and 3)

36. Stage 1 and 2 neuroblastoma is treatable.
Unresectable, localized neuroblastoma in an infant is readily curable with non-intensive chemotherapy and surgery.
Most stage 3 and all stage 4 disease should receive palliative care
9. Soft Tissue Sarcoma (Stage 1 and 2 disease)
10. Bone tumours- Osteosarcoma and Ewings sarcoma require complex multimodality care-maybe inappropriate to offer treatment in these patients. Amputation only may be an option in some- as long as prosthesis available.
11. Brain tumours – only those curable with surgery +/- radiotherapy
Most cases should not be offered anti-cancer therapy. However, some are curable with surgery alone; if such a case is confidently identified, it would be reasonable to offer neurosurgery Germinoma (non-secretory intracranial germ cell tumour) in an adolescent is readily curable with radiotherapy only and should be considered for treatment.
- these are guidelines
- each case should be considered on its individual merits

37. Supportive Care Guidelines Blood product support
New Patient assessment
Blood produce support
Cytotoxic administration
Drug dosages
Emergencies
Infection recognition and management
Symptom control
Palliative care
Treatment Protocols
Acute Lymphoblastic Leukaemia (ALL)
Acute Promyelocytic Leukaemia
-Fiji only if ATRA available
Hodgkin’s lymphoma
Burkitt Lymphoma
Wilms tumour
Germ cell tumour
Retinoblastoma
Bone tumours (Fiji)

38. 8 Years of progress and enhancements

39. Gains Identifying clinical and political champions in each country
Identifying clinical lead for each service
Ongoing training and education- in-country, regionally or in NZ
Weekly TC CHOC and Fiji
Rational referral to NZ for confirmed diagnosis and initiation of reduced intensity therapy as per triage guidelines (Tonga and Samoa and Fiji when indicated)
Repatriation early for ongoing treatment with support from NZ
VMS by Starship or CHOC team annually
Visit to Fiji by Starship Palliative Care Nurse Practitioner 2015

40. SIOP 26-30 October 2011, Auckland
Total of 30 PODC scholarships awarded
10 to Pacific health professionals from Fiji, Samoa and Tonga

41. Pacific Nursing training
September 2012-Auckland
December 2012-Lautoka

42. Gains Tonga – 100% ascertainment cases
Fiji-near ascertainment of cases
Samoa- improvements in referrals
Development PI ALL#2 protocol – more intensive
Parent group support -Tonga, Samoa and Fiji
Launch Early warning signs in Samoa, Tonga and Fiji
2015- presentation Fiji “National Paediatric Oncology plan” to MOH
November 2015 Tonga- TMA- focusing on cancer and looking to progress made in childhood cancer
Proposal submitted to Fiji MOH for funding (by WCCCT ) of a community nurse based at Lautoka Hospital, with vehicle

43. Gains Cohort children who have finished treatment
Gradual increased capability and capacity
Ripple effect of improving care for children with cancer impacts of care of other sick children
Development of an integrated Pacific Children’s Cancer Registry
Next for regional meeting

44. Early Warning signs
In treating children with cancer, it is recognized that early presentation and referral are crucial to identifying the good risks cancers to be treated as per the Pacific Child Cancer protocols.
The “St Siluan” Warning signs of childhood cancer were developed by the South African Children’s Cancer Study group in 1999 and, in 2000 endorsed internationally by International Confederation Childhood Cancer Parent Organisations (ICCCPO)
When these signs have been used at primary health level by primary health workers, there has been reported an increase in not only children with cancer, but children with other chronic disease identified. The list of warning signs has been found useful in promoting awareness of cancer in children.
To raise awareness of childhood cancer and promote early diagnosis, in the Pacific the Early warning signs are being translated /adapted for each respective country (Samoa, Tonga, Fiji, Cook Islands).

45. Why?
To achieve early diagnosis of a cancer
To identify also other sick children
To achieve early referral to Paediatric Service

46. Tongan Samoan

47. Fijiian/English and Hindi/English

48. SAMOA CANCER SOCIETY INC.
Parent Support
SAMOA CANCER SOCIETY INC.
1998
Samoa Cancer Society
Fiji Cancer Society
WOWS Kids Fiji
Child Cancer Foundation of Tonga
- inaugurated March 2008 alongside clinical expertise

49. Common Challenges faced in developing a Twinning Programme
Late or non-diagnosis or incorrect diagnosis
Treatment refusal
Treatment toxicity on protocols considered standard in developed health systems
Procurement anti- cancer medication
Treatment abandonment due to expense and family dislocation
Shortage of trained nurses
Insufficient funds
Cost and availability of medication
Failure when project not driven locally
Hospital detention (Africa, Asia, Latin America and Eastern Europe) SIOP PODC Global Taskforce
Mindful of these issues –embarked Pacific Child Cancer Project – now working group NCCN

50. Challenges (2006-2016) Political unrest
Tonga : August riots in central Nuku’alofa
Fiji : 2 x military coups May 2006 and October 2006
Natural disasters in the Pacific
Samoa: 29 September Tsunami
Samoa: 13 December Cyclone Evan
Vanuatu: 13 March Cyclone Pam
Fiji: 20 February Cyclone Winston
May result in change in priorities and reallocation of funding post disaster
Unplanned events- political unrest and natural disasters

51. Challenges Late referrals/ late diagnosis Making the correct diagnosis
Review of imaging, histology
Abandonment of treatment
Supply of anticancer medicines
Medical and Political champions
Succession planning and local leadership
Ongoing training and education
As reported internationally
Medical and Political champions Succession planning and local leadership Ongoing training and education

52. Last 50 years have gone from statements like:
The Future
Last 50 years have gone from statements like:
“Leukaemia in children-a death sentence”→
childhood cancer cures > 80% (developed world)
Bridging the Gap
Improving survival of children with cancer in the Pacific

53. “Bridging the Gap- in Women’s Health in Fiji”
“A clear message emanating from the meeting is the recognition by the medical and nursing professions that bridging the gaps in women’s health in Fiji would require that stronger partnership, collaboration and coordination must take place within clinical settings and also in non-clinical settings.
Bridging gaps will engage discussions at policy and programme level within health and outside of the health sector.
Community and family engagement in the discussions of reproductive health is necessary.
The socio-cultural aspects of reproductive health at all levels must be part of the equation to bridging these gaps”
Fiji Society of Obstetrics and Gynaecology (FOGS) meeting 8-10 August 2014

54. Bridging the gap medical and nursing stronger partnership
collaboration and coordination
clinical and non-clinical settings
policy and programme
within health and outside of the health sector
community and family engagement
socio-cultural
all components Pacific Child Cancer Project
All components Pacific Child Cancer project

55. Alignment Sustainable Development Goals – No.3
Bridging the Gap
Alignment Sustainable Development Goals – No.3
Alignment with country’s Health Plan
“Support and improve the health of the nation by: providing quality, effective and sustainable health
services and being accountable for the health outcomes” Tonga MOH 2015

56. Vision: That no child should die of cancer
Aim: To improve and optimise treatments throughout the world
All children should have access to state of the art outcomes
Is this achievable?
What needs to happen for this to occur?

57. Future
Ongoing collaboration with health professionals and Parent groups/NGOs
Improving early diagnoses and referral (when indicated) of good risk cancers
Increasing capability and capacity
Increasing intensity Pacific protocols
Improved access to drugs/ imaging techniques radiotherapy
In time- adding more “good risk cancers”
Establishment Pacific Child Cancer Registry
Encouraging other twinning realtionships

58. Responses from leaders in Childhood Cancer
Over the past 15 years or so, importantly, there has been an increasing awareness that we need to focus on the cancer experience and quality of life of children with cancer
Childhood cancer is arguably the most remarkable and rewarding story of cancer treatment in the last half century
While the number of children affected by cancer is relatively small, the experience has a ripple effect not only for the child, but also for the family
Research should be aimed at improving the cancer experience and long-term outcomes through the systematic development, evaluation and dissemination of interventions
We urgently need to develop therapies that will reduce the need for drugs and other treatments that are associated with long-term, adverse health outcomes

59. Pacific Working group (2016)
Dr Jane SKEEN
Dr Scott MACFARLANE
Dr Lochie TEAGUE
Dr Peter BRADBEER
Bridget SMITH
Starship Blood and Cancer Centre, Starship Children’s Hospital, Auckland
Dr Rob CORBETT
Chrissy BOND
Children’s Haematology Oncology Centre, Christchurch Hospital, Christchurch
Dr Michael SULLIVAN formerly Christchurch , now RCH Melbourne
Simon LALA ONZM
Chair The World Child Cancer Charitable Trust NZ (TWCCCT),
Child Cancer Foundation (CCF)-Life member and former board member and Chair.
Board member World Child Cancer (WCC) and Child Cancer International
(CCI- formerly International Confederation Child Cancer Parent Organisations -ICCCPO)
Janet MASINA
Child Cancer Foundation, Senior Family Support Coordinator
Melissa WILSON National Executive Officer NCCN

60. Acknowledgments Colleagues both in NZ and in the Pacific NZAid
POSG and now National Child Cancer Network
NZ Ministry of Health

61. Acknowledgments The World Child Cancer Charitable Trust
Auckland (NZ) based charity formed to raise money to support the work of the Pacific working group of the National Child Cancer Network (NZ)
Has a collegial relationship with WCC (UK based)
Projects supported to date:
Visits of working group members to Samoa and Tonga
Visits to Fiji –re: parent support groups
Nursing training of Pacific nurses from Samoa, Tonga, and Fiji
Launch of the Early Warning Signs -Samoa, Tonga
Establishment Pacific Child Cancer Registry
Commitment to fund Community nursing position in Lautoka, Fiji

62. SAMOA CANCER SOCIETY INC.
Acknowledgments
SAMOA CANCER SOCIETY INC.
Child Cancer Foundation NZ
Development and design and printing of the “Early warning signs” posters Samoa and Tonga and the design of the Fiji posters
Child Cancer Foundation-Tonga – Assistance with the development and design and launch EWS
Samoa Cancer Society
Assistance with the development and design and launch EWS
WOW Kids and Ministry of Health and medical Services
Assistance with the development and design and for printing of EWS-Fiji and the launch EWS
1998