Correspondence
The South African National Cancer Registry: an update We would like to take this opportunity to correct the misconception created by the News piece published in The Lancet Oncology regarding the “demise” of the South African National Cancer Registry (NCR).1 The NCR, a division of the National Health Laboratory Service, is the primary cancer surveillance system and largest repository of cancer data in South Africa. It was established in 1986 as a voluntary, pathologybased cancer surveillance system, and continues to operate; its database contains over 1·2 million cancer records with about 80 000 new cases added each year. The misconception about the NCR referred to above might have come about because the NCR has had difficulties in the past due to changes in leadership, high staff turnover, and a lack of political and financial prioritisation of cancer surveillance caused by competing national health priorities at the peak of the HIV epidemic. As a result of severe resource constraints, the NCR continued to obtain data but was unable to regularly produce reports. Additionally, between 2004 and 2010, some private laboratories withheld data because of concerns about voluntarily submitting confidential patient information to the registry without the protection of government legislation. However, in 2011, Regulation 380 of the National Health Act (Act 61 of 2003)2 formally established the NCR as South Africa’s main cancer surveillance agency; the legislation makes reporting all confirmed cancer diagnoses to the registry obligatory. Additionally, the Regulation mandated the NCR to implement population-based cancer registration in South Africa. With renewed political support, NCR has been revitalised. To expedite www.thelancet.com/oncology Vol 15 August 2014
data processing, the registry has moved to electronic reporting of pathology data from laboratories. Cancer incidence reports for 2000–07 have been published online3 with further reports in progress. After great effort from NCR staff, we aim to soon report cancers within timeframes similar to those of leading international cancer registries. The NCR has developed a 10-year business plan for the implementation of both new population-based and existing pathology-based registration for the country. Fundraising activities have started, and a pilot populationbased registry is operational in one district of the country (Ekurhuleni District, Gauteng), with more to follow. In view of the concern among stakeholders about the decline in reporting from private laboratories in the past, our researchers did a thorough investigation to quantify the effect of withheld reports on national cancer surveillance. We found a marginal effect on overall reporting; NCR will submit these findings for peer-reviewed publication soon. The NCR remains the main source of cancer data for South Africa, with laboratory-based reporting yielding high specificity. With the imminent implementation of national health insurance,4 it is vital for the country to be able to quantify the burden of cancer for national resource planning. Increased investment in the NCR will assist the organisation to improve South African cancer surveillance. MS has received grants from IeDEA Southern Africa (grant number U01AI069924) from the National Institutes of Health for work unrelated to this submission. All other authors declare no competing interests.
*Elvira Singh, Mazvita Sengayi, Margaret Urban, Chantal Babb, Patricia Kellett, Paul Ruff [email protected]
South African National Cancer Registry, National Health Laboratory Service, Braamfontein Johannesburg 2000, South Africa (ES, MS, MU, CB, PK); Faculty of Health Sciences, University of Witwatersrand, Johannesburg, South Africa (ES,
MU, PR); and Charlotte Maxeke Johannebsurg Academic Hospital, Johannesburg, South Africa (PR) 1 2
3
4
Furlow B. Mining pollution: a legacy of contamination. Lancet Oncol 2014; 15: 558. National Department of Health. National Health Act (Act No 61 of 2003): regulations relating to cancer registration. No R 380. Republic of South Africa, 2011. National Health Laboratory Service. National Cancer Registry: cancer in South Africa, full reports: 2000–2007. www.ncr.ac.za (accessed June 17, 2013). Health Systems Trust. Green paper: National Health Insurance in South Africa, National Department of Health, Republic of South Africa. http://www.hst.org.za/publications/ green-paper-national-health-insurance-southafrica (accessed April 25, 2014).
Cancer care for refugees Along with other non-communicable diseases, cancer is now recognised as a major challenge for humanitarian health providers and for those who finance their programmes. The recent Policy Review of cancer treatment requests submitted to UN High Commissioner for Refugees (UNHCR) Exceptional Care Committees (ECC), by Paul Spiegel and colleagues,1 makes a valuable contribution to a sparse evidence base. Although the burden of cancer in refugee populations in low-income and middle-income countries is poorly understood, UNHCR’s Health Information System (HIS) is well placed to track changes in disease epidemiology in refugee populations, and should be better used for this purpose.2 The latest UNHCR HIS reports for the Dadaab refugee camps in northeast Kenya attempt to document cancer morbidity and mortality during the month of March, 2014.3–7 Only one cancer-related death was recorded in Hagadera camp, representing 9% of total mortality for that period.3 In Ifo 2 camp, five people were living with cancer (0·8% of the total chronic disease burden), compared with 22 people in Ifo camp (1·8% of chronic disease burden), of whom 13 were older than 60 years.4,5 Five cancerrelated deaths were recorded in Ifo camp in the same period, representing e363
Correspondence
23% of camp mortality.5 Despite a combined population of 111 963 at the time of data collection, no cases of cancer were recorded in the Kambioos and Dagahaley camps.6,7 Since several of the Dadaab camps have existed for more than 20 years, it is surprising that very little additional information related to cancer and other chronic disease care is available from this context. Even with reliable data collection, the under-reporting of cancer is likely to remain a major problem, particularly in the absence of organised screening and detection programmes. UNHCR’s regional Public Health Strategy for Syrian refugees notes that some refugee-hosting countries have considered introducing breast and cervical cancer screening programmes for refugees. However, the agency asserts that refugee screening should only feature as part of a wider national screening programme, and that the additional cost of investigations and treatment should be established before the rollout of such schemes.8 Underpinning the decisions made by the ECC are the practices of triage, health rationing, and ultimately the interplay between beneficence and utilitarianism. In the context of underfunding and resource constraints, ensuring the greatest good for the greatest number of people is complicated, and clearly raises difficult ethical questions, particularly when dealing with refugees who previously had access to low-cost, high-quality health care in their home countries. Respondents featured in a 2010 UNHCR report on
e364
public health equity in refugee and other displacement settings reported that the need to make individual decisions, within a system guided by population health ethics, were some of the “most painful moments of their professional careers”.9 In 2013, an interagency report documented a rise in the number of Syrian refugees presenting with cancer to Jordanian health clinics, of which many were children with leukaemia. Acknowledging that the cost of treatment exceeded UNHCR’s referral budget at that time, the agency looked to the specialist King Hussein Cancer Centre in Amman Jordan, and its goodwill fund, for assistance.10 Along with the decisions made by the ECC, these financing initiatives play an important role for a small number of people. However, in view of global trends that suggest the incidence of cancer will continue to rise disproportionately in lowincome and middle-income countries, and as protracted refugee situations and demographic changes lead to a rise in age-related health problems among older refugees, it is imperative that leading decision makers and frontline practitioners engage with innovative financing mechanisms that can deliver sustainable cancer services beyond existing, disparate philanthropic models of care. The suggestions proposed by Spiegel and colleagues1 have potential, yet future discussions should seek to frame the denial of cancer care to refugees as not only the collective responsibility of the international donor community, but also the responsibility of industries
that price health technologies and preventative, curative, and palliative treatment out of reach of the patients that need them the most. I declare no competing interests.
James Smith
[email protected] Faculty of Medical Sciences, Newcastle University, Newcastle upon Tyne, NE2 4HH, UK; and Junior Humanitarian Network, London, UK 1
2
3
4
5
6
7
8
9
10
Spiegel P, Khalifa A, Mateen FJ. Cancer in refugees in Jordan and Syria between 2009 and 2012: challenges and the way forward in humanitarian emergencies. Lancet Oncol 2014; 15: e290–97. Haskew C, Spiegel P, Tomczyk B, Cornier N, Hering H. A standardized health information system for refugee settings: rationale, challenges and the way forward. Bull World Health Org 2010; 88: 792–94. UN High Commissioner for Refugees. HIS indicator report, March 2014—Hagadera, Kenya. Geneva: UN High Commissioner for Refugees, 2014. UN High Commissioner for Refugees. HIS indicator report, March 2014—Ifo 2, Kenya. Geneva: UN High Commissioner for Refugees, 2014. UN High Commissioner for Refugees. HIS indicator report, March 2014—Ifo, Kenya. Geneva: UN High Commissioner for Refugees, 2014. UN High Commissioner for Refugees. HIS indicator report, March 2014—Kambioos, Kenya. Geneva: UN High Commissioner for Refugees, 2014. UN High Commissioner for Refugees. HIS indicator report, March 2014—Dagahaley, Kenya. Geneva: UN High Commissioner for Refugees, 2014. UN High Commissioner for Refugees. Regional public health and nutrition strategy for Syrian refugees: Egypt, Iraq, Jordan, Lebanon and Turkey, 2014–2015. Geneva: UN High Commissioner for Refugees, 2014. UN High Commissioner for Refugees. Public health equity in refugee and other displaced persons settings. Geneva: UN High Commissioner for Refugees, 2010. UN High Commissioner for Refugees. Weekly interagency situation report—Jordan. Syrian refugee response update, 22–29 April. https:// data.unhcr.org/syrianrefugees/download. php?id=2551 (accessed June 29, 2014).
www.thelancet.com/oncology Vol 15 August 2014
The South African National Cancer Registry: an update We would like to take this opportunity to correct the misconception created by the News piece published in The Lancet Oncology regarding the “demise” of the South African National Cancer Registry (NCR).1 The NCR, a division of the National Health Laboratory Service, is the primary cancer surveillance system and largest repository of cancer data in South Africa. It was established in 1986 as a voluntary, pathologybased cancer surveillance system, and continues to operate; its database contains over 1·2 million cancer records with about 80 000 new cases added each year. The misconception about the NCR referred to above might have come about because the NCR has had difficulties in the past due to changes in leadership, high staff turnover, and a lack of political and financial prioritisation of cancer surveillance caused by competing national health priorities at the peak of the HIV epidemic. As a result of severe resource constraints, the NCR continued to obtain data but was unable to regularly produce reports. Additionally, between 2004 and 2010, some private laboratories withheld data because of concerns about voluntarily submitting confidential patient information to the registry without the protection of government legislation. However, in 2011, Regulation 380 of the National Health Act (Act 61 of 2003)2 formally established the NCR as South Africa’s main cancer surveillance agency; the legislation makes reporting all confirmed cancer diagnoses to the registry obligatory. Additionally, the Regulation mandated the NCR to implement population-based cancer registration in South Africa. With renewed political support, NCR has been revitalised. To expedite www.thelancet.com/oncology Vol 15 August 2014
data processing, the registry has moved to electronic reporting of pathology data from laboratories. Cancer incidence reports for 2000–07 have been published online3 with further reports in progress. After great effort from NCR staff, we aim to soon report cancers within timeframes similar to those of leading international cancer registries. The NCR has developed a 10-year business plan for the implementation of both new population-based and existing pathology-based registration for the country. Fundraising activities have started, and a pilot populationbased registry is operational in one district of the country (Ekurhuleni District, Gauteng), with more to follow. In view of the concern among stakeholders about the decline in reporting from private laboratories in the past, our researchers did a thorough investigation to quantify the effect of withheld reports on national cancer surveillance. We found a marginal effect on overall reporting; NCR will submit these findings for peer-reviewed publication soon. The NCR remains the main source of cancer data for South Africa, with laboratory-based reporting yielding high specificity. With the imminent implementation of national health insurance,4 it is vital for the country to be able to quantify the burden of cancer for national resource planning. Increased investment in the NCR will assist the organisation to improve South African cancer surveillance. MS has received grants from IeDEA Southern Africa (grant number U01AI069924) from the National Institutes of Health for work unrelated to this submission. All other authors declare no competing interests.
*Elvira Singh, Mazvita Sengayi, Margaret Urban, Chantal Babb, Patricia Kellett, Paul Ruff [email protected]
South African National Cancer Registry, National Health Laboratory Service, Braamfontein Johannesburg 2000, South Africa (ES, MS, MU, CB, PK); Faculty of Health Sciences, University of Witwatersrand, Johannesburg, South Africa (ES,
MU, PR); and Charlotte Maxeke Johannebsurg Academic Hospital, Johannesburg, South Africa (PR) 1 2
3
4
Furlow B. Mining pollution: a legacy of contamination. Lancet Oncol 2014; 15: 558. National Department of Health. National Health Act (Act No 61 of 2003): regulations relating to cancer registration. No R 380. Republic of South Africa, 2011. National Health Laboratory Service. National Cancer Registry: cancer in South Africa, full reports: 2000–2007. www.ncr.ac.za (accessed June 17, 2013). Health Systems Trust. Green paper: National Health Insurance in South Africa, National Department of Health, Republic of South Africa. http://www.hst.org.za/publications/ green-paper-national-health-insurance-southafrica (accessed April 25, 2014).
Cancer care for refugees Along with other non-communicable diseases, cancer is now recognised as a major challenge for humanitarian health providers and for those who finance their programmes. The recent Policy Review of cancer treatment requests submitted to UN High Commissioner for Refugees (UNHCR) Exceptional Care Committees (ECC), by Paul Spiegel and colleagues,1 makes a valuable contribution to a sparse evidence base. Although the burden of cancer in refugee populations in low-income and middle-income countries is poorly understood, UNHCR’s Health Information System (HIS) is well placed to track changes in disease epidemiology in refugee populations, and should be better used for this purpose.2 The latest UNHCR HIS reports for the Dadaab refugee camps in northeast Kenya attempt to document cancer morbidity and mortality during the month of March, 2014.3–7 Only one cancer-related death was recorded in Hagadera camp, representing 9% of total mortality for that period.3 In Ifo 2 camp, five people were living with cancer (0·8% of the total chronic disease burden), compared with 22 people in Ifo camp (1·8% of chronic disease burden), of whom 13 were older than 60 years.4,5 Five cancerrelated deaths were recorded in Ifo camp in the same period, representing e363
Correspondence
23% of camp mortality.5 Despite a combined population of 111 963 at the time of data collection, no cases of cancer were recorded in the Kambioos and Dagahaley camps.6,7 Since several of the Dadaab camps have existed for more than 20 years, it is surprising that very little additional information related to cancer and other chronic disease care is available from this context. Even with reliable data collection, the under-reporting of cancer is likely to remain a major problem, particularly in the absence of organised screening and detection programmes. UNHCR’s regional Public Health Strategy for Syrian refugees notes that some refugee-hosting countries have considered introducing breast and cervical cancer screening programmes for refugees. However, the agency asserts that refugee screening should only feature as part of a wider national screening programme, and that the additional cost of investigations and treatment should be established before the rollout of such schemes.8 Underpinning the decisions made by the ECC are the practices of triage, health rationing, and ultimately the interplay between beneficence and utilitarianism. In the context of underfunding and resource constraints, ensuring the greatest good for the greatest number of people is complicated, and clearly raises difficult ethical questions, particularly when dealing with refugees who previously had access to low-cost, high-quality health care in their home countries. Respondents featured in a 2010 UNHCR report on
e364
public health equity in refugee and other displacement settings reported that the need to make individual decisions, within a system guided by population health ethics, were some of the “most painful moments of their professional careers”.9 In 2013, an interagency report documented a rise in the number of Syrian refugees presenting with cancer to Jordanian health clinics, of which many were children with leukaemia. Acknowledging that the cost of treatment exceeded UNHCR’s referral budget at that time, the agency looked to the specialist King Hussein Cancer Centre in Amman Jordan, and its goodwill fund, for assistance.10 Along with the decisions made by the ECC, these financing initiatives play an important role for a small number of people. However, in view of global trends that suggest the incidence of cancer will continue to rise disproportionately in lowincome and middle-income countries, and as protracted refugee situations and demographic changes lead to a rise in age-related health problems among older refugees, it is imperative that leading decision makers and frontline practitioners engage with innovative financing mechanisms that can deliver sustainable cancer services beyond existing, disparate philanthropic models of care. The suggestions proposed by Spiegel and colleagues1 have potential, yet future discussions should seek to frame the denial of cancer care to refugees as not only the collective responsibility of the international donor community, but also the responsibility of industries
that price health technologies and preventative, curative, and palliative treatment out of reach of the patients that need them the most. I declare no competing interests.
James Smith
[email protected] Faculty of Medical Sciences, Newcastle University, Newcastle upon Tyne, NE2 4HH, UK; and Junior Humanitarian Network, London, UK 1
2
3
4
5
6
7
8
9
10
Spiegel P, Khalifa A, Mateen FJ. Cancer in refugees in Jordan and Syria between 2009 and 2012: challenges and the way forward in humanitarian emergencies. Lancet Oncol 2014; 15: e290–97. Haskew C, Spiegel P, Tomczyk B, Cornier N, Hering H. A standardized health information system for refugee settings: rationale, challenges and the way forward. Bull World Health Org 2010; 88: 792–94. UN High Commissioner for Refugees. HIS indicator report, March 2014—Hagadera, Kenya. Geneva: UN High Commissioner for Refugees, 2014. UN High Commissioner for Refugees. HIS indicator report, March 2014—Ifo 2, Kenya. Geneva: UN High Commissioner for Refugees, 2014. UN High Commissioner for Refugees. HIS indicator report, March 2014—Ifo, Kenya. Geneva: UN High Commissioner for Refugees, 2014. UN High Commissioner for Refugees. HIS indicator report, March 2014—Kambioos, Kenya. Geneva: UN High Commissioner for Refugees, 2014. UN High Commissioner for Refugees. HIS indicator report, March 2014—Dagahaley, Kenya. Geneva: UN High Commissioner for Refugees, 2014. UN High Commissioner for Refugees. Regional public health and nutrition strategy for Syrian refugees: Egypt, Iraq, Jordan, Lebanon and Turkey, 2014–2015. Geneva: UN High Commissioner for Refugees, 2014. UN High Commissioner for Refugees. Public health equity in refugee and other displaced persons settings. Geneva: UN High Commissioner for Refugees, 2010. UN High Commissioner for Refugees. Weekly interagency situation report—Jordan. Syrian refugee response update, 22–29 April. https:// data.unhcr.org/syrianrefugees/download. php?id=2551 (accessed June 29, 2014).
www.thelancet.com/oncology Vol 15 August 2014
