The South African Constitution affords everyone the right to access healthcare services, but in children the care must ensure survival.
Aim
This study aimed to determine whether there was access to equitable paediatric oncology services for the management of neuroblastoma in South Africa.
Setting
Paediatric oncology services in South Africa between 2000 to 2014.
Methods
A literature review was carried out, focussing on access to healthcare in South Africa for children with neuroblastoma. Services were classified in accordance with the International Society of Paediatric Oncology resource settings for neuroblastoma diagnosis. Supplementary data from a retrospective study of the management of neuroblastoma in South Africa were evaluated.
Results
The neuroblastoma care services in South Africa were not uniformly resourced and accessible across the provinces. Two provinces (2/9 provinces) had excellent healthcare services that included access to transplant facilities, whilst three (3/9 provinces) had no services. Traveling distances to healthcare services pose major challenges, whilst number of medical staff providing oncology care were unequally distributed. The Constitution did not define basic healthcare for children, nor did the National Cancer Control plan acknowledge childhood cancer as a defined entity without provision until 2022.
Conclusion
Children diagnosed with neuroblastoma do not have equitable access to healthcare as stated in the South African Constitution. The case of neuroblastoma highlights the inequitable access to childhood care as a whole in South Africa. As the health of children is a national priority, it is therefore necessary to sensitise policymakers to the needs of children with cancer.
When the Republic of South Africa ratified the United Nations (UN) Convention on the Rights of the Child in 1995 and subsequently enshrined children’s rights to health care in 1996 in its Constitution, the country committed to provide children with equitable health care.1 Section 27 of the South African Constitution affords children access to health care as citizens of South Africa, and they have the right to basic healthcare services under section 28.2 These two rights in the Bill of Rights facilitate the access to health care.1 Children may lodge a claim against the state for the provision of healthcare services when their parents are unable to afford healthcare services.1
The South African Constitution states that the state should also take reasonable action to comply with the provision of health care.2,3 It does not fully define the nature of the healthcare services beyond emergency medical care and basic health services, which may be interpreted as primary health care or preventative health care.4 Section 28 of the Bill of Rights stipulates that children have a right to basic nutrition, shelter, basic healthcare services and social services.2 The Constitution protects the right to life, and as oncological diseases are life-threatening, oncological health care should be defined as an essential healthcare service.2 The government should provide health care in accordance with its available resources but may not allocate a disproportionate share of the budget to one sector of health care, and thereby create shortages for other healthcare services.4 To be able to prioritise healthcare services, major public health needs should be identified for state funding.3
Childhood cancer is one of the leading causes of mortality in high-income countries.5 Yet, 90% of the world’s paediatric population lives in low- and middle-income countries (LMICs), where 84% of the global childhood cancer burden occurs.6 This is the estimate, taking into account that there may be a 10%–45% underestimation of childhood cancer incidences, partially because of the lack of cancer registries and poor access to oncological health care.6 In South Africa, the number of underdiagnosed patients is estimated to be in the same region as in other LMICs.7 As section 37 of the Constitution states that emergency health care is a right, children with cancer should have the right to life-saving treatment regardless of where in South Africa they live.
According to the World Health Organization (WHO), the definition of access to medical care pertains to physical access, economic access and information about health care.8 Physical access is defined as that ‘health facilities, goods and services must be within safe physical reach for all sections of the population, especially vulnerable or marginalised groups’. Economic accessibility is defined as:
[A] measure of people’s ability to pay for services without financial hardship. It takes into account not only the price of the health services but also indirect and opportunity costs (e.g. the costs of transportation to and from facilities and of taking time away from work).8
Access consists of services that can provide the needed care, timeliness of receiving the care when it is recognised, a workforce that can provide the care and coverage or the means to access health care.9,10
We aimed to evaluate access to equitable paediatric oncology services for the treatment of neuroblastoma (NB), a childhood malignancy, in line with the stipulations of the South African Constitution. The three issues for evaluation were equal access to NB care, equal paediatric oncology services and other equal resources needed for childhood cancer diagnosis and treatment. Furthermore, we wished to determine whether the state had taken reasonable action for NB health care towards achieving the aim of the WHO International Society for Paediatric Oncology (SIOP) to improve childhood cancer survival in LMICs to 60% by 2030.11
Materials and methods
Electronic literature reviews were conducted on the constitutional, legal and ethical issues pertaining to equality of medical care and access to medical care in the South African setting. Searches were conducted on PubMed, Google Scholar, WorldCat and JSTOR with search terms ‘access to medical care’, ‘rights to medical care’, ‘equal medical care’, ‘cancer’, ‘children’ and ‘South Africa’. The reference lists of publications were screened to supplement the search results.
Setting
South Africa consists of nine provinces, subdivided into nearly 300 districts.12,13 The health care in the country is administrated by three systems: The national, provincial and the district health systems.12,13 The National Department of Health (DoH) coordinates with the public and private healthcare services at national, provincial and district levels, whilst administrative, financial and supportive services are regulated at the provincial and district levels.14 In 2012, South Africa’s DoH initiated a National Health Insurance (NHI) plan as an efficient, equitable and sustainable health system.15 This social health insurance plan was developed to make health care more accessible and affordable for citizens who have no other way of funding such care individually, but it has not yet been implemented because of the funding still being sourced.15
Data
Based on the South African Children’s Cancer study group’s retrospective study of the management and outcomes of NB between 2000 and 2014, we evaluated the burden of three prognostic factors, age at diagnosis, stage and risk stratification, associated with NB in each province of South Africa. Furthermore, we evaluated the human resources and paediatric oncology services during this period by comparing the provincial paediatric oncology services that manage children diagnosed with NB. Paediatric oncology services were evaluated according to the SIOP resource settings for NB diagnosis, staging and risk stratification (Appendix 1).16 A multi-disciplinary team including sub-specialist doctors, nurses and laboratory staff was involved in managing childhood malignancies.16 We surveyed only former and current paediatric oncologists and paediatric surgeons attached to paediatric oncology services to establish the number of physicians working in paediatric oncology associated with individual paediatric oncology units (POUs), where possible, annual departmental hospital reports were cross-referenced for confirmation. To evaluate access to POUs, three random furthest points with a named settlement in each province were chosen. The distance and travel duration between the settlement and the nearest paediatric POU were determined with Google Maps®.17
Statistical analysis
Data from a retrospective study on the management and outcomes of South African children diagnosed with NB between 2000 and 2014 were used to determine the overall survival (OS) and associated 95% confidence intervals (CI) for each province. These data were described using Kaplan Meier curves with differences evaluated using log rank tests. The Kaplan Meier curves were assessed using IBM SPSS Version 25 (IBM Corporation, USA) statistical software.18 For all calculations, a p-value less than 0.05 was considered significant.
Ethical considerations
HREC/UREC Reference #: S18/07/138 (PhD).
ResultsGeographic characteristics
Nearly a third (n = 124, 32.2%) of the 385 children diagnosed with NB in South Africa between 2000 and 2014 (Figure 1) were treated in the Western Cape (WC), 114 (29.6%) were treated in Gauteng (GP) and 62 (16.1%) in the Free State (FS), followed by KwaZulu-Natal (KZN) (n = 55, 14.3%) and the Eastern Cape (EC) (n = 30, 7.8%). Data from Limpopo (LP) were not included in this study because permission to access data could not be obtained.
The provinces and cities of South Africa with paediatric oncology units from 2000 to 2014.
Age at diagnosis
The median age at diagnosis for the total cohort was 39.9 months (interquartile range [IQR], 15.4–49.6 months) (Table 1). The median age at diagnosis of patients from EC was 34.3 months (IQR, 19.1–48.2 months), 36.6 months (IQR, 12.2–81.9 months) for patients from FS, 36.8 months (IQR, 16.6–51.4 months) for patients from GP, 26.5 months (IQR, 13.5–41.4 months) for patients from WC and 21.3 months (IQR, 13.5–48.0 months) for patients from KZN. In all the provinces, the largest age group was of the 19- to 60-month-old children. GP (JHB, PTA and SWT) had the highest percentage (47%) of children older than 5 years. In all POUs, the predominant age group was of the 19- to 60-month-old children (Table 2). Johannesburg was the POU with the highest percentage (32.3%) of children over 5 years.
Neuroblastoma age groups at diagnosis from 2000 to 2014 per province in South Africa.
Stage 4 or metastatic disease was the most prevalent (n = 273, 70.9%) (Table 3). All provinces predominantly had Stage 4 disease, but EC (83.3%) and KZN (80.0%) had the highest percentages compared to 68.5%, 68.4% and 66.1% in WC, GP and FS, respectively. WC had the highest percentage Stage 1 or localised disease (n = 10, 8.1%).
Neuroblastoma staging at diagnosis from 2000 to 2014 per province in South Africa.
Province
EC
FS
GP
KZN
WC
Total
n
%
n
%
n
%
n
%
n
%
n
%
INSS
Stage 1
0
0.0
2
3.2
3
2.6
1
1.8
10
8.1
16
4.2
Stage 2
1
3.3
1
1.6
9
7.9
0
0.0
5
4.0
16
4.2
Stage 3
3
10.0
16
25.8
20
17.5
5
9.1
22
17.7
66
17.1
Stage 4
25
83.3
41
66.1
78
68.4
44
80.0
85
68.5
273
70.9
Stage 4s
1
3.3
2
3.2
4
3.5
5
9.1
2
1.6
14
3.6
Total
30
-
62
-
114
-
55
-
124
-
385
-
INSS, International Neuroblastoma Staging System; EC, Eastern Cape; FS, Free State; GP, Gauteng; KZN, KwaZulu-Natal; WC, Western Cape.
The POUs (Table 4) with the highest percentages of patients with Stage 4 or metastatic disease were Pietermaritzburg (KZN), East London (EP) and Pretoria (GP), with 100%, 83.3% and 82.1%, respectively. Rondebosch in Cape Town (WP) (n = 9, 9.9%) and Johannesburg (GP) (n = 3, 5.9%) had the highest percentage of Stage 1 or localised disease.
Neuroblastoma staging at diagnosis from 2000 to 2014 in South Africa.
High-risk (HR) disease was the most prevalent (n = 294, 76.4%) (Table 5). All provinces predominantly had HR disease, but EC (90.0%) and FS (95.2%) had the highest percentages compared to 81.6%, 65.3% and 61.8% in GP, WC and KZN, respectively. The percentage of HR disease must be seen in the context of 29.1% of KZN patients not being able to be risk stratified. WC had the highest percentage of low-risk (LR) disease (n = 26, 21.0%). The four POUs (Table 6) with the highest percentages of patients diagnosed with HR disease were Pietermaritzburg (KZN), Bloemfontein (FS), Pretoria (GP) and East London (EP), with 100%, 95.2%, 92.3% and 90%, respectively, followed by Johannesburg (GP) (82.4%), Parow in Cape Town (WP) (81.8%), Soweto (GP) (62.5%), Rondebosch in Cape Town (WP) (59.3%) and Durban (KZN) (57.1%). Rondebosch in Cape Town (WP) (n = 22, 24.4%), Johannesburg (GP) (n = 7, 13.7%) and Parow in Cape Town (WP) (n = 4, 12.1%) had the highest percentage of LR disease followed by Pretoria (GP), Soweto (GP), Durban (KZN), East London (EL) and Bloemfontein (FS) with 7.7%, 4.2%, 4.1%, 3.3% and 3.2%, respectively. Pietermaritzburg (KZN) had no patients with LR disease.
Neuroblastoma risk stratification at diagnosis from 2000 to 2014 per province in South Africa.
Province
EC
FS
GP
KZN
WC
Total
n
%
n
%
n
%
n
%
n
%
n
%
Risk
LR
1
3.3
2
3.2
11
9.7
2
3.6
26
21.0
42
10.9
IR
1
3.3
1
1.6
10
8.8
3
5.5
14
11.3
29
7.5
HR
27
90.0
59
95.2
93
81.6
34
61.8
81
65.3
294
76.4
Unknown
1
3.3
0
0.0
0
0.0
16
29.1
3
2.4
20
5.2
Total
30
-
62
-
114
-
-
55
124
-
385
-
INSS, International Neuroblastoma Staging System; EC, Eastern Cape; FS, Free State; GP, Gauteng; KZN, KwaZulu-Natal; WC, Western Cape; LR, low-risk; IR, intermediate risk; HR, high-risk.
Neuroblastoma risk stratification at diagnosis from 2000 to 2014 in South Africa.
Evaluation of access to paediatric oncology services in South Africa (<xref ref-type="table" rid="T0007">Table 7</xref>)
GP was the province with the smallest surface area (18 176 km2), with the shortest travelling distances to services (83.5–119.0 km) and with the shortest travel duration (59 min – 1 h 34 min). NC was the province with the largest surface area (372 889 km2), with the furthest travelling distances to services (283.7 km – 1105.5 km) and the longest travel duration (2 h 55 min – 16 h 32 min). WC, with established paediatric oncology services, had comparable distances (427.4 km – 595.8 km) and travel durations (4 h 22 min – 6 h 45 min), with MP (141.1 km – 435.1 km; 1 h 48 min – 4 h 56 min) and NW (336.1 km – 641.8 km; 3 h 40 min – 6 h 46 min) that had no paediatric oncology services.
National access to neuroblastoma care
Based on geographical distances in South Africa (Figure 1), road access and travelling time to cover the distances as well as transport options for patients – timeliness (Table 7) of access to care were not equal. The Constitution guarantees the facilitation of gaining access to health care.2 Both the 2009 public inquiry into access to healthcare services and the 2017 Foundation for Human Rights paper on monitoring the right of access to health care in South Africa documented ongoing limited resources and access to both patient transport services and emergency transport.19,20 The greatest burden fell on children and patients from rural areas who needed inter-provincial transfers.21,22 Not only did patients in MP, NC and NW not have NB medical services in their own provinces, but there was also limited transport for them to access NB care in other provinces.
Provincial distances and traveling times to the nearest paediatric oncology unit during 2000 to 2014.
Destination to nearest POU
Distance
Travel time
Eastern Cape (168 966 km2)
Elyolo to Port ElizabethAliwal North to East LondonPamlaville to East London
338.8 km357.8 km490.3 km
3 h 45 min3 h 53 min6 h 29 min
Free State (129 825 km2)
Memel to BloemfonteinMaseru (border with Lesotho) to BloemfonteinOrania to Bloemfontein
453.9 km143.9 km222.9 km
4 h 37 min1 h 47 min2 h 23 min
Gauteng (18 176 km2)
Klipdrif to SowetoLoding to PretoriaDevon to Johannesburg
90.8 km119.0 km83.5 km
1 h 8 min1 h 34 min59 min
KwaZulu-Natal (94 361 km2)
Manguzi to DurbanPort Edward to DurbanBonjanjeni to Pietermaritzburg
422.0 km163.7 km202.1 km
5 h 3 min1 h 35 min2 h 22 min
Limpopo (125 754 km2)
Musina to PolokwaneDwaalboom to PolokwaneHoedspruit to Polokwane
196.4 km362.0 km216.8 km
2 h 19 min3 h 54 min2 h 32 min
Mpumalanga (76 495 km2)
Mbuzini to PretoriaDelfkom to PretoriaLefiso to Pretoria
453.1 km391.4 km141.1 km
4 h 56 min4 h 21 min1 h 48 min
North West (104 882 km2)
Vorstershoop to BloemfonteinVorstershoop to PretoriaSupingstad to Pretoria
544.6 km641.8 km336.1 km
5 h 46 min6 h 46 min3 h 40 min
Northen Cape (372 889 km2)
Mier to Cape TownMier to BloemfonteinAlexander Bay to Cape TownNoupoort to Bloemfontein
1105.5 km874.9 km786.7 km283.7 km
8 h 43 min16 h 32 min7 h 36 min2 h 55 min
Western Cape (129 462 km2)
Tsitsikamma to Cape TownKliprand to Cape TownMurraysburg to Cape Town
585.6 km595.8 km427.4 km
6 h 45 min4 h 22 min6 h 43 min
POU, paediatric oncology unit.
Anti-neoplastic agents are important for the treatment of NB.21 Until 2016, approximately 20 basic and essential anti-neoplastic agents listed in the WHO essential anti-cancer medications had not been listed on the South African Essential Drugs list.23 Subsequent Essential Medicines Formularies for Tertiary and Quaternary Care did also not include anti-neoplastic agents as needed for childhood malignancies.24,25
A multi-disciplinary team is crucial for the management of NB. The disciplines should include paediatric oncologists, paediatric surgeons, radio-oncologists, radiologists, pathologists, nuclear physicians, bone marrow transplant specialists and supportive care services (blood transfusion services, pharmacy services and dieticians), but of special importance is the nursing staff.16 If the provinces without paediatric oncology services are not taken into account, GP and WC that had the smallest percentage of children under the age of 15 years (respectively, 24.5% and 26.7%),26 had the best access to health care between 2000 and 2014, with more paediatric oncologists and paediatric surgeons than any of the other provinces (Tables 8 and 9). Even in the context of this disproportionate distribution of human resources, both the 2009 public inquiry and the 2017 Foundation for Human Rights working paper concluded that there was a shortage of skilled healthcare workers, especially nursing staff, in the public sector and that their numbers were still decreasing.20,27
The number of paediatric oncologists/haematologists in each province between 2000 and 2014.
Location
2000
Location
2014
Paediatric oncologist
Paediatric haematologist
Paediatric oncologist
Paediatric haematologist
Eastern Cape
East LondonPort ElizabethSub-total
101
000
East LondonPort ElizabethSub-total
000
000
Provincial totals
Doctors
Provincial totals
Doctors
2 928 000
1–2.9 mil
0
2 570 000
0
0
Free State
Bloemfontein
1
0
Bloemfontein
3
0
Provincial totals
Doctors
Provincial totals
Doctors
1 000 000
1–1 mil
0
980 000
1–326 666
0
Gauteng
PretoriaSowetoJohannesburgSub-total
2114
0000
PretoriaSowetoJohannesburgSub-total
2338
0000
Provincial totals
Doctors
Provincial totals
Doctors
2 939 000
1–734 750
0
3 743 000
1–467 875
0
KwaZulu-Natal
DurbanPietermaritzburgSub-total
000
202
DurbanPietermaritzburgSub-total
011
314
Provincial totals
Doctors
Provincial totals
Doctors
4 149 000
0
1–2 074 500
4 062 000
1–4 062 000
1–1 037 250
Limpopo
Polokwane
0
0
Polokwane
0
0
Provincial totals
Doctors
Provincial totals
Doctors
2 421 000
0
0
2 310 000
0
0
Mpumalanga
Mbombela (Nelspruit)
0
0
Mbombela (Nelspruit)
0
0
Provincial totals
Doctors
Provincial totals
Doctors
1 520 000
0
0
1 564 000
0
0
Northern Cape
Kimberley
0
0
Kimberley
0
0
Provincial totals
Doctors
Provincial totals
Doctors
398 000
0
0
408 000
0
0
North West
GaRankuwa
0
0
GaRankuwa
0
0
Provincial totals
Doctors
Provincial totals
Doctors
1 165 000
0
0
1 293 000
0
0
Western Cape
RondeboschParowSub-total
325
101
RondeboschParowSub-total
336
000
Provincial totals
Doctors
Provincial totals
Doctors
1 609 000
1–321 800
1–1 609 000
1 866 000
1–311 000
0
South Africa
Total
12
3
Total
17
4
18 129 000
1–1 510 750
1–6 043 000
18 795 000
1–1 105 588
1–4 698 750
The number of paediatric surgeons in each province between 2000 and 2014.
Equality of the paediatric oncology services delivering neuroblastoma care
The management of NB includes chemotherapy, surgery and radiotherapy.28,29 In localised NB, trimodal therapy is curative, but in metastatic NB or NB with adverse biology, trimodal therapy leads to a survival of only 20%.16,28,29 An autologous bone marrow transplant preceded by ablative bone marrow therapy, immunotherapy and maturation therapy with cis-retinoic acid is vital, but was not available in South Africa during this time.28,29
Between 2000 and 2014, the POUs in South Africa delivered different levels of neuroblastoma management based on the available healthcare resources in each hospital (Table 10). Important in the management of high-risk NB was autologous bone marrow transplant. Pietermaritzburg (KZN) and Polokwane (LP) were Setting 1 POUs with access only to basic levels of health care (Appendix 1). Bloemfontein (FS), Durban (KZN) and East London (EC) were Setting 2 POUs with access to the full range of healthcare management needed, excluding access to bone marrow transplant facilities for children. Rondebosch and Parow (Cape Town, WC), Johannesburg, Pretoria and Soweto (GP), with autologous transplant capabilities, were Setting 3 POUs with an access to the full range of healthcare management facilities, including bone marrow transplant. None of the POUs were classified as Setting 4 POUs, because South Africa does not provide immunotherapy for the treatment of NB.
Evaluation of paediatric oncology units according to the International Society for Paediatric Oncology-Paediatric Oncology of Developing Countries resource settings for neuroblastoma diagnosis, staging and risk stratification.
Location
Basic bloods
LDH and ferritin
X-ray
U/S
CT/MRI
BMT
mIBG
MYCN
Chemotherapy
Surgery
Radiotherapy
ASCT
Level Setting
Eastern Cape
East London
On site
On site
On site
On site
On site
On site
Off-site
Off-site
On site
On site
On site
No
2
Free State
Bloemfontein
On site
On site
On site
On site
On site
On site
On site
Off-site
On site
On site
On site
No
2
Gauteng
JohannesburgPretoriaSoweto
On siteOn siteOn site
On siteOn siteOn site
On siteOn siteOn site
On siteOn siteOn site
On siteOn siteOn site
On siteOn siteOn site
On siteOn siteOn site
On siteOn siteOn site
On siteOn siteOn site
On siteOn siteOn site
On siteOn siteOn site
YesYesYes
333
KwaZulu-Natal
DurbanPietermaritzburg
On siteOn site
On siteOn site
On siteOn site
On siteOn site
On siteOn site
On siteOn site
On siteOff-site
On siteOff-site
On siteOn site
On siteOn site
On siteOn site
NoNo
21
Limpopo
Polokwane
On site
On site
On site
On site
On site
On site
Off-site
Off-site
On site
On site
Off-site
No
1
Mpumalanga, Northern Cape and North West
No POUs
None
None
None
None
None
None
None
None
None
None
None
None
None
Western Cape
RondeboschParow
On siteOn site
On siteOn site
On siteOn site
On siteOn site
On siteOn site
On siteOn site
On siteOn site
On siteOn site
On siteOn site
On siteOn site
On siteOn site
YesYes
33
U/S, ultrasonography; LDH, lactic dehydrogenase; CT, computed tomography; MRI, magnetic resonance imaging; BMT, bone marrow aspirate and trephine; mIBG, meta-iodobenzylguanidine; ASCT, autologous stem cell transplant; POU,paediatric oncology unit.
‘On site’ refers to services in the same hospital or same hospital complex in the same city. ‘Off-site’ refers to services in another hospital complex, another city or province.
The existence of a facility does not, however, guarantee access to it, or that access to it would be gained.30 In South Africa, when a paediatric surgeon was not available, a general surgeon performed surgical interventions when diagnosing NB with the aid of a biopsy or operated on the primary tumour. Radiotherapy services did not routinely reserve time for paediatric NB patients who needed irradiation. Moreover, in both these situations, children had to compete not only for resources, but also with the adult population to gain access to life-saving services.31 High-risk NB had poor outcomes, high relapse rates and a high need for resources.16 When the justice principle is applied for access to limited surgical, radiotherapy and transplantation services, these characteristics might work against patients with NB because of competition for resources rather allocated to burden of disease of adult non-communicable diseases. This situation was compounded when paediatric oncology services competed with adult services.31
The right to life – A right to be treated for neuroblastoma and treatment-related complications
Worldwide localised NB without adverse biology (low- and intermediate-risk disease) had 5-year OS rates of upwards from 80%.16,28,29 In metastatic NB or NB with adverse biology (high-risk disease) with multi-modal therapy, including autologous stem cell transplant (ASCT) and immunotherapy, the 5-year OS rates were 60%.15,27,28 In South Africa, with limited access to ASCT and no immunotherapy, the 5-year OS was approximately 20%.32 The inequitable distribution of NB management-related resources had an impact on the survival, as the two provinces GP and WC, with a full range of healthcare services, had survival rates above the national average of 22.6% (Table 11). KZN did not have a paediatric oncologist to complement the multi-disciplinary team until 2013 (the end of the study period) and had the lowest survival rate of 5.5% (Figure 2). The effect of inequitable access to NB care could be demonstrated by comparing Pretoria and Soweto with Johannesburg. All are Setting 3 paediatric oncology services, but during the study period, Johannesburg received referrals from Southern GP (roughly 9088 km2) and Soweto received referrals from Southern GP and NW (113 970 km2), whilst Pretoria received referrals from Northern GP, MP and LP (until a POU was opened in Ga-Rankuwa) (roughly 211 337 km2), which were significantly further away from the child’s residence. This potentially may have led to late diagnoses and delays in referrals to central hospitals, contributing to a poorer 10-year OS for Pretoria (5.1%) and Soweto (16.7%), compared to 39.2% in Johannesburg.17
Kaplan Meier curves overall survival outcomes for patients diagnosed with neuroblastoma between 2000 and 2014 in each province (p < 0.001).
Provincial and paediatric oncology unit overall survival outcomes.
Location
n
%
10-year OS (%)
Std. Error
Median 95% CI
p-value
Lower Bound
Upper Bound
Provinces
Eastern Cape
30
7.8
10.0
2.214
5.528
14.206
< 0.001
Free State
62
16.1
21.0
3.001
15.419
27.181
-
Gauteng
75
19.5
22.8
3.129
3.001
15.266
-
KwaZulu-Natal
55
14.3
5.5
1.271
1.709
6.691
-
Western Cape
124
32.2
33.9
3.191
12.313
24.820
-
Total
385
-
22.6
1.238
10.807
15.660
-
Paediatric Oncology Units
Bloemfontein
62
16.1
21.0
3.001
15.419
27.181
< 0.001
Durban
49
12.7
4.1
1.960
0.000
6.441
-
East London
30
7.8
10.0
2.214
5.528
14.206
-
Johannesburg
51
13.2
39.2
42.383
0.000
130.070
-
Pietermaritzburg
6
1.6
16.7†
1.225
3.000
7.800
-
Pretoria
39
10.1
5.1
2.809
0.000
11.006
-
Rondebosch
91
23.6
39.6
5.357
12.368
33.366
-
Soweto
24
6.2
16.7
3.715
0.000
14.182
-
Parow
33
8.6
18.2
1.589
11.253
17.480
-
Total
385
-
22.6
1.238
10.807
15.660
-
, Although the survival curve for Pietermaritzburg had already reached its plato, the value reflects a 5-year OS (as opposed to a 10-year OS for the other cities).
Chronic care or long-term life-saving health care
Since 2009, non-communicable diseases in South Africa, including cancer, have contributed the greatest percentage to the burden of disease in the country.20 It is estimated that one in every five children up to late adolescence in South Africa was in need of long-term life-saving health care or chronic health care because of a previously life-limiting condition, such as with cancer and palliative care.33 Yet, when the right to life-saving health care on the basis of a chronic condition was challenged in the constitutional court in the Soobramoney case: Soobramoney vs Minister of Health (KwaZulu-Natal) 1998 (1) SA 765 (CC), the court decided that emergency medical treatment did not include chronic treatment.34 Therefore, ASCT, which contributes a 15%–20% increase in survival in high-risk NB,16 is not guaranteed as a right to life under the determination of the constitutional court and neither is any part of paediatric oncology care apart from acute life-threatening emergencies such as acute emergencies at diagnosis which include spinal cord compression symptoms and respiratory distress or neutropaenic fever, heart failure caused by chemotherapy-induced anaemia, bleeding because of thrombocytopaenia.16
Discussion
Neuroblastoma is a childhood malignancy of the neuro-endocrine system, contributing 15% of the total deaths in the paediatric oncology population and only 20% of cases survive for longer than 5 years because of late diagnosis and advanced disease in LMICs.16,35 The 5-year OS rate in South Africa is 27%, whilst the country has a youthful population, with 34.3% of the population being under the age of 15 years.21,32 Since the start of democracy in 1994, the DoH has developed beneficial programmes for children, which include the national integrated nutrition programme, the programme for the prevention of maternal HIV to child transmission and the early childhood development and basic education programmes.32 Free basic child healthcare services for children under the age of 5 years are included in these programmes. A bias in favour of younger children and preventative medicine is evident in all these programmes, with the health needs of children with chronic diseases, older children and adolescents being neglected.36 Provincial health departments have directed resources towards paediatric oncology care with initiatives such as the Essentials for Palliative Care and the KwaZulu-Natal paediatric outreach programmes,33 but paediatric oncology resources through South Africa remain unequal. Gauteng had the second highest number of children under the age of 15 years, and the Western Cape only the fifth highest with, respectively, 21.4% and 10.0% of all children under the age of 15 years in SA.26 Yet both provinces had the most resources to manage NB. Mpumalanga, with 8.1% of the children under 15 years, and Limpopo with 11.6%, were the two provinces with the least resources and had a fifth of the children in the country.26 In 2020, Mpumalanga still had no paediatric oncology services and referred children with NB to Pretoria.
The WHO-SIOP joint goal is to achieve a 60% childhood cancer cure rate worldwide.11,36 The South African government lacked the stewardship to implement National Core Standards, including programmes related to cancer care, in the country.37 Most cancer-related programmes were adult-centred.38 The Ministerial Advisory Committee on the Prevention and Control of Cancer (MACC) was established in 2013 and the Strategic Plan for the Prevention and Control of Non-Communicable Diseases ran from 2013 to 2017, but childhood cancer was not a priority, as the focus was again on prevention rather than cure, which is not applicable in childhood cancer.38 In the 2017–2022 National Cancer Strategic Framework for South Africa, the commitment to paediatric cancers was not stated beyond a paragraph on childhood cancer epidemiology.39 Therefore, although NB has a peak incidence of cancer in children between the ages of 2 years and 5 years,16 the paediatric programmes’ bias in favour of younger children does not include non-communicable disease management. Access to treatment in the private healthcare setting for childhood cancers, thus for NB, is better than in the public setting. The two-tiered health system benefits the financially independent population or those who can afford private health insurance.15
Although NB is classified as a rare disease,40,41 optimising its management in South Africa is important from the principle of justice as part of setting a basic standard of health care for rare diseases.42 The international age-standardised rate of NB in countries with standardised cancer registries is 10.5 cases per million.43 In South Africa, with at least a 50% under-diagnosis of childhood malignancies,7 the incidence is far less, at 2.7 cases per million.7 Therefore, improving the quality of awareness of neuroblastoma, as with all childhood cancers, improving diagnostic capabilities and bringing about increased access to paediatric oncology care are basic, life-saving healthcare services to which children have a right under the Constitution.
The absence of a definition in the Bill of Rights for ‘basic health care services’ as they pertain to children may be because of the relatively young Constitution or a means for the government not to commit to defined services. As a signatory of the UN Convention on the Rights of the Child, the South African government must prioritise the needs of children as the most vulnerable members of the South African society.31 Section 7(2) of the Constitution requires the state to ‘respect, protect, promote and fulfil the rights in the Bill of Rights’. Concerning the right of access to healthcare services, respect determines that the state not unreasonably limits people’s access to healthcare services, whether in the public or private sector.34 Thus, a reasonable measure to ensure that children, including children with malignancies, not only survive, but also thrive and reach their full capabilities according to the UN Convention, is to address discriminatory policies and practices34: defining basic health care for children and acknowledge the need for chronic healthcare services for children in South Africa. After 25 years of democracy, the scope of paediatric oncology should be acknowledged and a separate national cancer control plan for children should be formulated to address the paediatric epidemiology, pathophysiology and management needs of children with cancer.
Conclusion
In the case study of children diagnosed with neuroblastoma, it was determined that the patients were not afforded equitable access to care, were not afforded the same level of care based on resources and were not afforded the right to life by means of access to medical services as laid down by the South African constitution. This case of neuroblastoma illustrates the measure of access to care for all paediatric malignancies in South Africa, which is currently a low priority in national cancer control because of the paucity of initiatives by policymakers for children with oncological diseases.
Acknowledgements
Permission was obtained via the Wiley Library to reproduce a table for academic purposes from Parikh et al. Clinical Practice Guidelines: SIOP-PODC Adapted Risk Stratification and Treatment Guidelines: Recommendations for Neuroblastoma in Low- and Middle-Income Settings, during September 2020.
The data for survival analysis were provided by the SACCSG Neuroblastoma Workgroup: Dr Jaques van Heerden, Prof Mariana Kruger, Prof Marc Hendricks, Dr Ronelle Uys, Dr Jan du Plessis, Dr Ané Büchner, Prof Janet Poole, Dr Ele Madzhia, Prof Gita Naidu, Dr Barry van Emmenes, Dr Johani Vermeulen and Dr Liezl du Plessis.
We acknowledge the members of the South African Children Cancer Study Group, the South African Children’s Tumour Registry and South African Association of Paediatric Surgeons for historical information that benefitted the analyses. We wish to express our gratitude to the administrative staff from the hospitals who were able to provide annual hospital reports for cross-referencing statistics.
Competing interests
The authors declare that they have no financial or personal relationships that may have inappropriately influenced them in writing this article.
Authors’ contributions
J.v.H. and M.K. conceptualised and designed the study, collected data, performed the data analysis and wrote the manuscript. T.E. was the statistician for data analysis and reviewed the manuscript.
Funding information
This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.
Data availability
The data that support the findings in this study are available from the corresponding author, J.v.H., upon reasonable request.
Disclaimer
The views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of any affiliated agency of the authors.
ReferencesBuchner-EveleighM. Children’s rights of access to health care services and to basic health care services: A critical analysis of case law, legislation and policy. De Jure Law J. 2016;49(2):307–325.The South African Government. Constitution of the Republic of South Africa 1996 [homepage on the Internet]. [cited 2020 Sep 15]. Available from: https://www.gov.za/documents/constitution-republic-south-africa-1996HassimA, HeywoodM, BergerJ. Health and democracy. Chapter 2: The Constitution and public health policy [homepage on the Internet]. [cited 2020 Sep 15]:30–45. Available from: http://section27.org.za/2007/06/health-and-democracy/#PillayK. Tracking South Africa’s progress on health care rights: Are we any closer to achieving the goal?Law Democr Dev. 2003;7(1):55–81.JohnstonWT, ErdmannF, NewtonR, et al. Childhood cancer: Estimating regional and global incidence. Cancer Epidemiol. 2020;101662. https://doi.org/10.1016/j.canep.2019.101662MagrathI, Steliarova-FoucherE, EpelmanS, et al. Paediatric cancer in low-income and middle-income countries. Lancet Oncol. 2013;14(3):e104–e116. https://doi.org/10.1016/s1470-2045(13)70008-1StefanDC, StonesDK, WainwrightD, et al. Childhood cancer incidence in South Africa, 1987–2007. S Afr Med J. 2015;105(11):939–949. https://doi.org/10.7196/SAMJ.2015.v105i11.9780Universal health coverage and universal access. BullWorld Health Organ. 2013;91:546–546A. https://doi.org/10.2471/BLT.13.125450Agency for Healthcare Research and Quality. Elements of access to health care. Chartbook on access to health care [homepage on the Internet]. [cited 2020 Sep 15]. Available from: https://www.ahrq.gov/research/findings/nhqrdr/chartbooks/access/elements.htmlInstitute of Medicine, Committee on Monitoring Access to Personal Health Care Services. Access to health care in America [homepage on the Internet]. [cited 2020 Oct 05]. Washington, DC: National Academy Press; 1993. Available from: https://www.ncbi.nlm.nih.gov/books/NBK235882/International Society of Paediatric Oncology. WHO global initiative for childhood cancer [homepage on the Internet]. [cited 2020 Oct 05]. Available from: https://siop-online.org/who-global-initiative-for-childhood-cancer/Department of Government Communication and Information System (South Africa). Categories of municipalities [homepage on the Internet]. [cited 2020 Sep 21]. Available from: www.gov.za/aboutgovt/localgovernment.htmDepartment of Health (South Africa). National service delivery agreement: A long and healthy life for all South Africans [homepage on the Internet]. 2010[cited 2020 Sep 21]. Available from: www.health-e.org.za/wp-content/uploads/2013/05/3771ccea0610904ff0c3de0f09f210391.pdfKatuuS. Healthcare systems: Typologies, framework models, and South Africa’s health sector. Int J Health Govern. 2018;23(2):134–148. https://doi.org/10.1108/IJHG-10-2017-0054ComnyA. South African health care system analysis. Publ Health Rev. 2018;1(1):1–8.ParikhN, HowardS, ChantadaG, et al. SIOP-PODC adapted risk stratification and treatment guidelines: Recommendations for neuroblastoma in low- and middle-income settings. Pediatr Blood Cancer. 2015;62(8):1305–1316. https://doi.org/10.1002/pbc.25501Google. Multiple destinations in between cities in South Africa [homepage on the Internet]. n.d.[cited 2020 Sep 13]. Available from: https://www.google.com/mapsIBM Corp. IBM SPSS Statistics for Windows, Version 25.0. Armonk, NY: IBM Corp.; 2017.South African Human Rights Commission. Public inquiry into the right to access to health care services. Chapter 4: Access to health care. Johannesburg: South African Human Rights Commission; 2009, p. 41–42.WeyssB, WebsterD, SelebaloH. Studies in poverty and inequality institute. Monitoring the right of access to health care in South Africa. Working paper 17. Chapter 3: Quality indicators. Johannesburg: Studies in Poverty and Inequality Institute; 2017, p. 69.HarrisB, GoudgeJ, AtagubaJ, et al. Inequities in access to health care in South Africa. J Publ Health Pol. 2011;32:S102–S123. https://doi.org/10.1057/jphp.2011.35South African Human Rights Commission. Public inquiry into the right to access to health care services. Chapter 6: Access to health care. 2009;p. 50.Perumal-PillayVA, SulemanF. Quantitative evaluation of essential medicines lists: The South African case study. BMC Health Serv Res. 2016;16:687. https://doi.org/10.1186/s12913-016-1937-xDepartment of Health, South Africa. Tertiary and quaternary level essential medicines recommendations. Reviewed items June 2017. Pretoria: South African Department of Health; 2017.Department of Health, South Africa. Tertiary and quaternary level essential medicines recommendations. Reviewed items June 2020. Pretoria: South African Department of Health; 2020.Statistics South Africa. Mid-year population estimates by population group, age and sex, 2020. Mid-year population estimates report, 2020 [homepage on the Internet]. 2020 [cited 2020 Sep 13]. Pretoria: Statistics South Africa. Available from: http://www.statssa.gov.za/publications/P0302/MYPE%202020%20Presentation.pdfSouth African Human Rights Commission. Public inquiry into the right to access to health care services. Chapter 3.4: Human resources. Pretoria: South African Human Rights Commission; 2009, p. 34–38.PintoN, ApplebaumM, VolchenboumS, et al. Advances in risk classification and treatment strategies for neuroblastoma. J Clin Oncol. 2015;33(27):3008–3017. https://doi.org/10.1200/JCO.2014.59.4648WhittleS, SmithV, DohertyE, et al. Overview and recent advances in the treatment of neuroblastoma. Expert Rev Anticancer Ther. 2017;17(4):369–386. https://doi.org/10.1080/14737140.2017.1285230GullifordM, Figueroa-MunozJ, MorganM, et al. What does ‘access to health care’ mean?J Health Serv Res Pol2002;7(3):186–188. https://doi.org/10.1258/135581902760082517Shung-KingM, LakeL, SandersD, HendricksM (eds.). South African Child Gauge 2019. Cape Town: Children’s Institute, University of Cape Town; 2019, p. 95–114.Van HeerdenJ, HendricksM, GeelJ, et al. Overall survival for neuroblastoma in South Africa between 2000 and 2014. Pediatr Blood Cancer. 2019;66:e27944. https://doi.org/10.1002/pbc.27944WestwoodA, SlemmingW. Long-term health conditions in children: Towards comprehensive care.BergerJ. Health and democracy: A guide to human rights, health law and policy in post-apartheid South Africa. In: HassimA, HeywoodM, BergerJ, editors. Chapter 2: The Constitution and public health policy [homepage on the Internet]. Cape Town: SiberInk; 2007 [cited 2020 Sep 29]; vol. 2010, no. 4, p. 30–69. Available from: www.section27.orgInternational Agency for Research on Cancer. World Cancer Report 2014. Lyon 2014. Editors Stewart BW, Wild CP. World Health Organization. Chapter 5.16. Tumours of the nervous system. p. 511.World Health Organization. Improving cancer cure rates [homepage on the Internet]. [cited 2020 Oct 05]. Available from: https://www.who.int/activities/improving-childhood-cancer-cure-rateMaphumuloWT, BhenguBR. Challenges of quality improvement in the healthcare of South Africa post-apartheid: A critical review. Curationis. 2019;42(1):a1901. https://doi.org/10.4102/curationis.v42i1.1901Department of Health, South Africa. Strategic plan for the prevention and control of non-communicable diseases 2013–2017. Pretoria; 2013.Department of Health, South Africa. National cancer strategic framework for South Africa 2017–2022. Pretoria; 2017.EURORDIS – What is a rare disease? [homepage on the Internet]. [cited 2020 Sep 21]. Available from: http://www.eurordis.org/about-rare-diseasesOrphanet website: About rare diseases [homepage on the Internet]. [cited 2020 Sep 21]. Available from: http://www.orpha.net/consor/cgibin/Education_AboutRareDiseasesO’ConnorDJ, BucklandJ, AlmondN, et al. Commonly setting biological standards in rare diseases. Expert Opin Orphan Drugs. 2019;7(7–8):305–314. https://doi.org/10.1080/21678707.2019.1652598Steliarova-FoucherE, StillerCA, HesselingeP, et al. International incidence of childhood cancer. Volume III Chapter IVa. Neuroblastoma and ganglio neuroblastoma [homepage on the Internet]. [cited 2020 Oct 05]. Available from: http://iicc.iarc.fr/includes/results/comparative/0401_Neuroblastoma.pdfAppendix 1International Society of Paediatric Oncology resource settings for neuroblastoma diagnosis, staging and risk stratification.
Setting 1
Setting 2
Setting 3
Setting 4
Diagnosis
History, Physical examination, Histology of small round blue cell tumour or bone marrow metastases Urinary catecholamines (if available)
Source: Parikh N, Howard S, Chantada G, et al. SIOP-PODC adapted risk stratification and treatment guidelines: Recommendations for neuroblastoma in low- and middle-income settings. Pediatr Blood Cancer. 2015;62(8):1305–1316. https://doi.org/10.1002/pbc.25501
BM, bone marrow; CT, computerised tomography; CBC, complete blood count; CXR, chest X-ray; FDG-PET, fluorodeoxyglucose positron emission tomography; GD2, disialoganglioside; H&E, hematoxylin and eosin stain; HVA, homovanillic acid; ICU, intensive care unit; IHC, immunohistochemistry; INPC, International neuroblastoma pathology classification; INSS, International neuroblastoma staging system; LDH, lactic dehydrogenase; 123I- MIBG, meta-iodobenzylguanidine; MKI, mitosis-karyorrhexis index; MRI, magnetic resonance imaging; RBC, red blood cell; VMA, vannillylmandelic acid.
How to cite this article: Van Heerden J, Esterhuizen T, Kruger M. Inequity in paediatric oncology in South Africa – The neuroblastoma case study. S. Afr. j. oncol. 2021;5(0), a163. https://doi.org/10.4102/sajo.v5i0.163