Is the South African Government Doing Enough for Childhood Cancer?


spotlight-child-cancerbContinuing in this week’s trend of questioning why our Little Fighters and their Families are suffering so much and having such a hard time of it, the question, “Is the South African Government Doing Enough for Childhood Cancer?” is very relevant and one that has been on my mind for a few years already.

Innovators, policymakers, and investors gathered in Johannesburg last month for the South Africa Innovation Summit, and it is upon doing some research into the outcome of this summit and the study, The Prioritisation of Paediatrics and Palliative Care in Cancer Control Plans in Africa” published in the British Journal of Cancer in 2015that has prompted me to post this in an effort to get some answers and possibly light a fire under someone in Government to do more!

PATH, an international NGO dedicated to saving lives through global health innovation, partnered with the Centre for Economic Governance and AIDS (CEGAA) to produce an analysis titled Health Research and Development Budget Allocations and Expenditures in South Africa: A baseline report. This report tracks investments by the South African government in health R&D and highlights gaps. It provides important evidence for civil society to inform advocacy for investments in health R&D.

The report shows that, while the South African government has, over the past few years, undoubtedly made commitments toward ensuring that R&D is prioritised and funded to bolster the economy and create jobs, has established various research institutes, and has committed to ensuring that research funding is prioritised, this has not actually been put into practise.

The government set a target in the 2014–2019 Medium Term Strategic Framework (MTSF) that investment in R&D should increase to 1.5 % of GDP by 2019, however, in 2013 investment dropped to 0.76 percent of the GDP

Is that ALL the Health of the Nation is worth? This is UNACCEPTABLE!!!

Worse than that, health R&D currently only accounts for 0.1% of total government spending and it is not increasing at a rate that keeps up with inflation; in actual fact, investment in health R&D is decreasing as a share of total government spending.

The report also shows that Health R&D is inconsistent across government with the Department of Science and Technology (DST) currently funding the most in health R&D while the Department of Trade and Industry and the Department of Health spend less.

Based on the analysis, PATH and CEGAA have several recommendations:

  1. Government spending on health R&D should align with the National Research Strategic Plan in order to reach set gross expenditure targets for R&D, and additional resources should be made available to enhance evidence generation and innovation.
  2. The government should measure contributions of other sectors, such as donors and the private sector, in R&D to ensure that those investments cover high-priority health needs. The private sector needs to invest more in health R&D in order to reach targets of the South African National Development Plan.
  3. More in-depth assessments are needed to get a deeper understanding of where R&D funding is spent in the South African public sector, what drives the spending, and what are the results. Much of the R&D spend has been wasted on poorly selected opportunities and lack of expert scientific scrutiny. Expenditure should be driven primarily by in-depth needs assessments, followed by rigorous scientific and technological due diligence.

Civil society has a critical role to play in monitoring government accountability to ensure funding commitments are fulfilled and activities are aligned with national plans. It is with this in mind that a group of nongovernmental organisations got together to launch the South Africa Health Technologies Advocacy Coalition (SAHTAC). The organisations within SAHTAC work in partnership to strengthen the voice of civil society in advocating for health R&D.

 

The Prioritisation of Paediatrics and Palliative Care in Cancer Control Plans in Africa

While the above gives us a bit of hope that things will get better as far as South African Health goes, it is not enough, and certainly not enough is being done on the Childhood Cancer front – Children are our Future, yet they are being let down on so many fronts by our government!

The above-mentioned paper investigated the paediatric and palliative care elements in cancer control plans by conducting a comparative content analysis of accessible national cancer control plans in Africa, using a health systems perspective attentive to context, development, scope, and monitoring/evaluation. Burden estimates were derived from World Bank, World Health Organisation, and Worldwide Palliative Care Alliance.

Eighteen national plans and one Africa-wide plan were accessible, representing 9 low-, 4 lower-middle-, and 5 upper-middle-income settings. Ten plans discussed cancer control in the context of noncommunicable diseases. Paediatric cancer was mentioned in 7 national plans, representing 5127 children, or 13% of the estimated continental burden for children aged 0–14 years.

Let me repeat that, Paediatric cancer was mentioned in 7 national plans… SEVEN out of 18, and no, South Africa was not one of the plans containing anything that specifically addresses Paediatric Cancer!! (see Strategic Plan for the Prevention and Control of Non-Communicable Diseases 2013-17)

These 7 national CCPs specified elements of paediatric-specific cancer detection, diagnosis, and/or treatment as a priority. Early detection of paediatric cancer was specifically promoted in 3 plans. Once again, South Africa is NOT one of these!!!

This review of contemporary Cancer Control Plans (CCPs) in Africa highlighted notable examples of paediatric cancer control and palliative care needs as well as sample commitments made on a national and continental level. Prominently, the majority of publicly available plans did not yet specify inclusion of paediatric elements (in 11 of 19 plans), nor paediatric-specific palliative care (in 15 of 19 plans), although a number exemplified recognition of the unique needs of children with cancer.

Three plans depicted the importance of general health workers receiving training in paediatric cancer management, with specific chemotherapy training for general paediatricians stated in an additional plan (once again, NOT South Africa!!)

Palliative care training for all ages was prioritised in the continental plan and seven national plans (yay, South Africa is in this one).

The most recent GLOBOCAN data reveals that ~847000 new cancer cases were diagnosed in Africa in 2012 with an associated mortality rate of 591000 (Ferlay et al, 2013). Cancer registries are estimated to cover <15% of the continent (Parkin, 2006), thus the exact incidence of cancer in Africa is grossly underestimated, particularly among children (Kruger et al, 2014).

Unlike many adult cancers known to be associated with environmental exposures warranting screening and behavioural interventions, most paediatric cancers are not associated with modifiable risk factors. Paediatric cancers thus require a health system focus on early and accurate detection and treatment completion. Investment in these facets of cancer control has the potential to enhance national wellness and productivity, as the care of children represents the continent’s future with youth aged between 0 and 14 years comprising of 43% of sub-Saharan Africa’s population in 2013 (World Bank, 2014), an age demographic expected to grow (UNICEF, 2014).

This research sought to first identify cancer control plans in Africa and to analyse the national control plan content for inclusiveness of paediatric populations. Given the current reality of late diagnoses and limited access to advanced curative therapies for many children in Africa, palliative care constitutes a critical component (Amery et al, 2009) that we sought to analyse. According to the Worldwide Palliative Care Alliance (WPCA), 49% of children in need of palliative care globally are found within the African Region (WPCA, 2014). A report commissioned by the United Nations Children Fund recently reported that the number of youth reaching palliative care services in South Africa and Zimbabwe in 2012 represented only 5% of the children with palliative care needs, while the number in Kenya was 1% (UNICEF and ICPCN, 2013), thus drawing attention to the urgent need for palliative care scale-up for children on the continent.

Review of existing cancer control plans has the potential to inform development of future iterations of CCP framing and development. Although it was beyond the scope of this project to undertake analyses of plan implementation within broader health policies and on-the-ground practices, review of scripted CCPs support the need to further advocate for paediatric- and palliative-sensitive elements within national cancer control strategies.

Specific areas for targeted intervention include mandating childhood cancer reporting and registration, accurate and early diagnosis, and coverage for childhood cancer treatment. In the current setting including late diagnosis and scarce diagnostic and therapeutic resources, the plans revealed notable opportunities for palliative care partnerships and collaborations across diagnoses.

Explicit strategies and funding for paediatric and palliative services in national cancer plans may help guide prioritised health delivery implementation.

Based on review of these national cancer control plans, priority areas for policy, resources, and action include:

  • Diligent monitoring of childhood cancer cases and outcomes in the context of existing health service delivery;
  • Tangible commitment and multisector stakeholder engagement to minimise threats to outcomes such as treatment abandonment and inaccessibility of essential staff and supplies; and
  • Longitudinal evaluation of control plan interventions to optimise equity, integration, and responsiveness of health system elements.

Advocacy and funding accountability remain essential to shift plans from paper to improved population outcomes.

 

Strategic Plan for the Prevention and Control of Non-Communicable Diseases 2013-17

THIS is South Africa’s plan (which was part of the above-mentioned study), and it can be read in full in Pdf format HERE.

Unfortunately, this plan makes mere mention of cancer as a whole, and basically no mention of any plans for Childhood Cancer bar a mention of the National Guideline: A Guide for Health Care Personnel in Paediatric Palliative Care (2005) in an appendix, under the Department Of Health Policies/Policy Guidelines.

This is really upsetting and as a Childhood Cancer advocate it befuddles my brain that nothing is really being done by the SA Government as far as Childhood Cancer goes – yes there are various NPOs such as the Little Fighters Cancer Trust doing what they can to educate, spread knowledge and help where we can, but WHERE is our Government?

The South African Paediatric Tumour Registry – 25 years of activity (2012)

Childhood cancer is relatively rare, representing about 1% of cancers in the total population. The cumulative risk of developing cancer below the age of 15 years has been estimated to be between 1 and 2.5 per 1 000.1 Childhood cancer is generally potentially curable, and progress towards cure has been made in developed countries where the overall survival rate for some common malignant tumours is about 80%.2 

In South Africa, where children under 15 years (who constitute the paediatric population) represent 31% of the population, 3 600 – 7 000 new cases of childhood malignancies have been reported yearly for the last 25 years to the South African Children’s Tumour Registry.

figure1-childhood-cancer-registry

Fig. 1 Distribution of the various childhood cancers for 2 x 10-year periods

The Registry is essential for collecting data on malignant disease in the paediatric population. It is a central repository of data provided by individual, hospital-based registries throughout the country. These registries record data on all patients presenting to paediatric oncology services; however, children who die without being seen at a hospital, and those treated by private oncologists and other paediatric subspecialists (e.g. neurosurgeons), might not be recorded. Although a central registry of hospital-based registers cannot be complete, it nevertheless has data that can be used for statistical research in an efficient and sustainable way.

Fig. 1 shows the distribution of the various childhood cancers for 2 x 10-year periods. When these 2 periods are compared, the number of brain tumours decreased by half while epithelial tumours doubled, almost exclusively owing to the rising incidence of Kaposi’s sarcoma.

 

Childhood Cancer Incidence in South Africa, 1987 – 2007 (2015)

Childhood cancer is an emerging problem in Africa. Its extent is hazy because data are scarce, but it should be addressed. This is the first report from the South African Children’s Tumour Registry (SACTR), which covers the whole of South Africa (SA). It provides minimal estimates of cancer incidence and discusses the challenges of cancer surveillance and control in a child population in a middle-income country. Only about 2% of the African population is covered by cancer registries producing comparable incidence data.

Based on the 11 699 cases, the overall age-standardised average annual incidence rate was 45 per million. Threefold differences in the overall incidence rates were observed between the ethnic groups, ranging from 116 for whites to 37 for black Africans, and they differed by diagnostic group. Differences between the nine provinces of SA relate to the ethnic composition and prevailing socioeconomic status. 

time-trends-childhood-cancer-incidenceA set of graphs (Fig. 2) shows the incidence trends for selected tumour groups. Over the 21-year study period, the overall incidence rate (adjusted for age group and gender) was seen to decline by 1.2% per year for the whole country (p<0.01).

However, the decline was not homogeneous during the study period. Overall rates decreased markedly between 1987 and 1994 by 8.1% per year (p<0.001), and increased thereafter by 1.9% per year (p=0.002). Leukaemia dropped by 7.8% per year (p<0.001) to 1995 and increased by 1.7% per year (p=0.082) thereafter. The incidence of lymphomas decreased by 7% per year (p<0.004) until 1995 and then increased by 2.7% per year (p=0.03). The dramatic decline in the incidence of CNS tumours (-28.3; p=0.037) was reversed from 1990, with a sustained increase of 4.7% per year (p<0.001).

The SACTR is the first paediatric population-based cancer registry established in Africa, and it has national coverage. Despite uncertainties inherent in the presented data, the SACTR constitutes an invaluable resource of information for policy planning and research. This report challenges us to improve the diagnosis and notification of childhood cancer to both the NCR and the SACTR, and to tackle the ethnic inequalities in access to appropriate care. Continuous collection of data is indispensable for evaluation of demographic, geographical and temporal variations. Ultimately this will lead to earlier diagnosis, better management, and improved outcomes for children with cancer in SA.

Childhood Cancer is a REALITY in South Africa, and too many children (and their families) are still suffering too much and worst of all too many children are still dying of cancer in South Africa – GOVERNMENT NEEDS TO DO MORE!!!

 

“There can be no keener revelation of a society’s soul than the way in which it treats its children”
~ Nelson Mandela ~

 

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About LFCT

This is a blog about CHILDHOOD CANCER and CHILDHOOD CANCER AWARENESS Little Fighters Cancer Trust is a non-profit organisation that offers support and aid to Children with Cancer and their families. When a child is diagnosed with cancer it affects the whole family. One of the parents, usually the mother, must give up their job to care for the child and this creates financial problems for the family. In South Africa especially the majority of these families are not well-to-do; many of them are rural. A diagnosis of cancer can wipe out any family’s finances, let alone a poor family. The costs of special medications, special diets, hospital stays, transport to and from the hospital or clinic and accommodation and food costs for the mother who spends most of the time at her child’s bedside are astronomical. These are the people and problems that fall through the cracks, and these are the people that Little Fighters Cancer Trust has pledged to help in any way possible. LFCT takes a holistic approach to assisting the Children with Cancer and their Families, with the main aim to be the preservation of individual dignity and pride. Little Fighters Cancer Trust also focuses on promotion and advocacy of National Childhood Cancer Awareness in an effort to increase awareness of Early Warning Signs of Childhood Cancer. This would result in earlier diagnosis, giving the Child with Cancer more of a chance at Treatment and Survival. See "About" for more Background info

Posted on 20 October, 2016, in Blog and tagged , , , , , , , , . Bookmark the permalink. Leave a comment.

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