The Committee held another meeting with the Department of Health so that Members could ask further questions on the Green Paper on National Health Insurance(NHI), which was presented in the previous week. Members asked if the NHI Information System would share a common database with the Department of Home Affairs, South African Revenue Service and South African Social Security Agency. They wondered how illegal immigrants claiming free treatment would impact on NHI; how the Department of Health planned to deal with the situation if more than one hospital of the same category was in a particular district, whether doctors were likely to be asked to relocate, and what would happen to the existing Government medical scheme. They also asked who would facilitate and monitor provincial funding, whether it was possible to have the required personnel to cover the wards. They enquired whether the human resources strategy had also investigated the financing model, how NHI would be administered, and what percentage of funds would go towards paying for administration of the NHI.
Members also asked what interaction had taken place between the private and public healthcare providers, how pilot projects were budgeted for and monitored, and how the Department of Health would ensure that there was not overcrowding at private hospitals. They wondered if the Department of Health had capacity and skills to deal with the public health institution problems. Members further asked what the NHI service package would cover and include, and if the Department of Health was on track with regard to the time frame for the drafting of legislation. Certain of the questions asked related to policy, and here the Department of Health indicated that it was not possible to deal with them as yet, because wider consultation was required. Comments from stakeholders including service providers and users, would enrich the content and policy issues in the document.
The CHOC Childhood Cancer Foundation of South Africa gave a presentation on its history and background, noting that it was formed of parents of children who suffered from cancer, and was thus mainly made up of volunteers. Some of the challenges and solutions for childhood cancer were presented. CHOC believed in treating the child and not the illness. It was aiming to have a presence in all provinces, although it was not represented in all as yet. It owned seven houses around the country for parent/s and their child during the treatment years. It also supported child-friendly wards at the hospitals, offered information and handbooks for parents and children in various languages, offered psychosocial and emotional support to families, and funded transport for those who would otherwise be forced to abandon treatment. It was noted that although South Africa had world class treatment centres and used international protocols, it struggled with limited resources. The primary funding focus for CHOC was on public sector hospital, and funding paediatric doctors and nurses to attend conferences, improvement of treatment centres; and funding for the Childhood Cancer Registry 2000. It needed to develop stronger relationships with the Departments of Health and Education. It had implemented a “Warning Signs Project”, in conjunction with the South African Children’s Cancer Study Group (SACCSG) which had resulted in more children being diagnosed and treated earlier. Although survival for childhood cancer sufferers tended to be better than adult cancers, this rate, in South Africa, was lower because of lack of awareness and late diagnosis. CHOC urged that children, even up to their twenties, should be treated in paediatric oncology units, by specialist paediatric oncologists using paediatric protocols, as this improved their recovery prognosis, and was pushing for children at least up to the age of 15 still to be treated in these wards, instead of being moved at age 12. It was prioritizing the production of a coherent plan and National Childhood Cancer Policy, and urged that childhood cancer should be included in an Integrated Management of Childhood Illness Policy. It was also critical to establish Hospital Schools. Models for treatment were being proposed. Tertiary grants were not always reaching childhood cancer, although this would be a focus at the UN Summit in September 2011. A strong relationship between the National Childhood Registry and Children’s Cancer Registry was needed, to collect reliable data.
Members asked if there was a genetic predisposition to childhood cancer, if CHOC was involved in the rehabilitation of these children, what the symptoms of childhood cancer were, and what the most common types of childhood cancer were. They called for more information on the Children’s Cancer Registry. Members also asked how rural areas in the North West could hear about CHOC, asked if CHOC was working with other charities and how it generated funding.
The Department of Health finally updated the Committee on progress made on the Directorate on Radiation Control. The Ministerial Task Team on Regulatory Function Related to Radioactive Sources had established six working groups, would shortly be holding interviews of medical physicists, and would shortly be presenting their reports to the Minister. The reports of the first three working groups, whose focus areas were defined in the briefing, would determine how the other three groups would work. Basically, the groups were working on how to address lost radioactive sources (including those used for road, soil and medical testing) and a strategy for public awareness. These sources were categorised on the International Atomic Energy Agency (IAEA) guidelines, and it was reported that only one lost source in South Africa was identified as dangerous, and this was mapped and buried underground, with no further investigation deemed necessary, whilst the remained fell into the category of unlikely, or most unlikely, to be dangerous. Members were not pleased to hear that the Department would not search for these latter sources, asked if the IAEA knew about them, and what its reaction had been, and expressed their concern that it was possible to combine sources and create war weapons. They enquired why the Hawks had paid the DoH a visit, and called for quarterly update reports.
National Health Insurance (NHI) Green Paper: Further meeting with Department of Health (DoH)
Chairperson’s opening remarks
The Chairperson reminded Members that in the previous week, the Green Paper on the National Health Insurance (NHI) had been presented by the Department of Health (DoH). Public hearings would be conducted by the DoH, and Members had strongly expressed their view that these hearings should be held widely, in both rural and urban areas. Members also felt that they had not received enough information on the NHI, nor on how health insurance systems in other countries were funded. The DoH had subsequently compiled documentation setting out the position in other countries and this was currently available. The purpose of engaging with the Department at today’s meeting was again so that Members could ask questions of clarity. The Committee, in its oversight over the DoH, had agreed that the state of the health systems in the country left much to be desired. The Green Paper would be discussed, but it must not necessarily be assumed that it was the best way forward, and the Committee must be open to ideas. The problem with regulation in the past was linked to the then-government policies. The current approach focused on engagement through hearings, debate and understanding of concerns, in an attempt to find solutions that would ultimately ensure that all citizens benefited from the country’s taxes for health care.
Mr M Waters (DA) said that he was concerned that having deliberations on the Green Paper, which was a substantial document, would take time away from the other items on the agenda for this meeting, and he felt that this very important document justified a meeting of its own.
The Chairperson said that unlimited questions had been permitted the previous week, and the purpose of this meeting was that Members should be able to seek clarity on issues. The Committee could not go beyond the three months afforded for their deliberations on the Green Paper. However, a final decision on the time period would be guided by what transpired during the current deliberations.
Mr M Hoosen (ID) said that the NHI issue had been a long time coming, and expected that there would be a number of public hearings and questions for debate. He also wished, on behalf of his party, that the questions he had posed previously were aimed at ensuring that people really would benefit from the NHI, and at trying to improve weaknesses in the current system. He had understood that every citizen would be issued with a card, and asked how illegal immigrants would be accommodated within the NHI plan,
Mr D Kganare (COPE) asked whether NHI Information System would share a common database with the Department of Home Affairs (DHA), the South African Revenue Service (SARS) and the South African Social Security Agency (SASSA).
Ms Precious Matsoso, Director-General, Department of Health, replied that DoH had engaged with the Departments of Home Affairs, Social Development (on social grants), Science and Technology, and with the Centre for Scientific and Industrial Research (CSIR) and that preliminary scoping work had been done on a one-card system. This was based on the system in France, where one card was used for social services, pension and health. Results of the scoping work would determine when and how the system would be implemented.
Mr Hoosen said that although the Green Paper was still in the design phase, his concern was that the country had a problem with the large number of illegal immigrants. This would have an impact on how NHI would be rolled out and how effective it became.
Mr Kganare believed that it would be a mistake not to budget for illegal cross-border beneficiaries. The reality was that as long as foreigners had access to the country, they would access the health service.
Ms Matsoso replied that ‘cross-border beneficiaries’ specifically made reference to political asylum seekers and refugees who had a legal status. There were also illegal immigrants with no official legal status. DoH was exploring the option of contingency funds and was learning from other countries who had had similar experiences. The design was not yet final.
Mr Hoosen said that he understood that hospitals would be designated into different categories. He asked how the DoH planned to deal with the situation when more than one hospital of the same category was in a particular district, such as more than one specialist hospital. Similarly, he asked if doctors would have to relocate if there was an oversupply of medical practitioners.
Dr A Pillay, Acting Deputy Director-General, Department of Health, replied that in each district there would be facilities and district hospitals but tertiary and quaternary level hospitals would always be placed in one of the districts. NHI did not expect that private health care providers would be forced to move as their work would be market-related and they would be contracted to the district health authorities and work as part of the NHI in those particular areas.
Mr Hoosen believed that the NHI success would depend on how well the public healthcare system was upgraded, so that it could offer the same level of healthcare services as the private sector. Unless there was a turnaround in the public healthcare system, there would be more people wanting to be treated at the better equipped private healthcare institutions, and a number of the public healthcare institutions would not be supporting the number of patients that they were currently supporting.
Mr Hoosen asked what would happen to the existing government medical scheme once the NHI was in operation. He could not foresee that government would continue to support the existing medical scheme.
Ms Matsoso replied that the role of the medical schemes was referred to and described in the policy document and further consultation with the stakeholders should make it clearer.
Dr Pillay added that NHI was still in the planning phase and it was premature to discuss the state medical scheme and how it would be rolled out.
Mr Waters read out questions conveyed from Ms E More (DA) who was ill and could not attend the meeting.
Ms More had commented that the DA welcomed universal health coverage. However, she commented that the NHI would serve more than 50 million people and the scale of administrative services required would be huge. She noted that Discovery Health employed more than 3 000 people to serve 2.5 million members. Given the failure of state-owned entities, she questioned whether it was likely that the intended objectives would be achieved.
Ms More had further asked how the NHI would be administered, who would be responsible for the administration, and if the NHI would have the capacity, infrastructure and skills to administer NHI effectively, efficiently and economically.
Ms More asked if the DoH had the capacity and skills to deal with the public health institution problems while simultaneously piloting the NHI, given that it had so far been unable to fix the current ailing health care system.
Ms More asked what the NHI service package would cover and include.
Ms More pointed out that procurement problems facing the hospitals would make it difficult for the poor to get service at public hospitals. Currently government hospitals did not offer quality service to the poor and this was why quality service tended to be associated with the private sector. Her opinion was that everyone would try to use private healthcare institutions, as opposed to public healthcare institutions. She asked how the DoH would ensure that there was not overcrowding at private hospitals.
Ms More also questioned how DoH would ensure that people crossing the border illegally would not abuse the system by presenting themselves for health care and then disappearing without paying.
Ms More pointed out that since 2009, most of the public facilities had the same complaints and challenges that were raised during the Committee’s oversight visits. The MECs of Health promised to fix problems but little changed.
Ms More recommended that, rather than trying to introduce new systems, the government should rather concentrate on mainstreaming, addressing staff shortages and promoting better and friendly staff attitudes towards patients. It should improve the ailing procurement system, infrastructure development, primary health care facility infrastructure and working systems. It must also address Pre-Departure Medical Screening (PDMS) and Occupational Health, fully establish the hospital standards and compliance, determine the Chief Executive Officers’ qualifications and performance, and determine level of qualifications and skills performance required to run each facility. It should also deal with shortage of consumables and quality equipment, and deal with HIV/AIDS programmes.
Some of these questions were answered in response to other Members’ questions.
Ms Matsoso said that the Minister of Health had requested that 15 million South Africans should be tested for HIV in one year. Between June 2010 and June 2011, 13.9 million South Africans were tested. If this was not evidence of meeting the resolve to improving the health status in SA, then Members were welcome to offer additional alternative suggestions.
In the first year of the three-phased approach over 14 years, with the assistance of the National Treasury Technical Unit, DoH had received 400 proposals from experts who were willing to assist with problems of the public health facilities. It was hoped that by 1 October, most of the experts would be available to work in all the audited public facilities for which data had been validated.
She noted that infrastructure had been delivered, while access to health care in the broader sense had been neglected. DoH was currently assessing how to improve access to facilities and services. The four-fold approach included therapeutic, physical, financial and quality access.
Mr G Lekgetho (ANC) said that he was happy that there would soon be public hearings across the country. He hoped that there would be an emphasis on reaching the rural people. NHI was intended to bring health services to the poor, both black and white, by removing obstructive legislation which benefited the few in the past. The NHI was long overdue and was doing what the DA failed to do until 1994.
Mr Waters objected to this comment by pointing out that the DA had never been in power.
The Chairperson called Members to order and requested that Members should not refer to other parties but rather direct questions to the DoH.
Ms M Segale-Diswai (ANC) said that she understood that the NHI would offer decent healthcare to both the poor as well as those who had been privileged, and it would be a cornerstone to universal coverage. She agreed with Mr Hoosen that there was a political battle in the meeting the previous week, and yet it was important that everyone raised their concerns about the introduction of the NHI. In her opinion, there had been poor delivery of health in the past and Members needed to understand each others’ concerns and move forward on the same wavelength. Health care for the people was a right which was not negotiable.
Ms B Ngcobe (ANC) said she looked forward to the DoH, through its public hearings, addressing the broad strata of society, which could be done by making information available in as simple a form as possible, involving role players, using the home language of the people in their area, and mobilising people to buy in to the NHI.
Mr Kganare said that NHI was more about financing health care than providing health care. The financial model should be linked to the quality of care that could be provided. He asked who would facilitate and monitor provincial funding cuts, whether the impact of inter-provincial funding had been addressed. He pointed out that at the moment, Limpopo was spending some of its funding on individuals receiving services in hospitals in Gauteng. He also wondered what interaction there might have been with DHA in this regard.
Ms Matsoso replied that DoH worked closely with National Treasury and had met with the Appropriations Committee on the previous day to address the cost and possible sources for financing NHI. There were three models of financing health globally: a publicly-driven process, such as was used the United Kingdom (UK), or through an NHI which may have a combination of public and private, and through insurance which had a strong private involvement. Public input would assist with deciding what model was most desirable for South Africa.
Mr Kganare asked if the human resources strategy had examined what financing what would be needed to ensure delivery of appropriate personnel to deliver public health care and if NHI had established the required personnel to cover the wards on an annual basis as the process unfolded.
Ms Matsoso replied that in the South African health care system, 80% of health care providers were nurses. The norms and standards for nurses, doctors and other categories would be published. DoH had identified 27 occupational clusters for the rendering of quality services and had made projections achievable over short, medium and long term. DoH was aware that over the past 16 years, the institutions had produced exactly the same number of doctors (1 200 per annum) but the demands and burden of disease had increased. The question was how to drive the Human Resource Strategy. An innovative approach would be to invest in human resources, especially using those from disadvantaged backgrounds. DoH was responding as to whether to recruit health care workers from other countries or produce more of its own, or have a combination of both, and what this meant in terms of investment. She added that South Africa had a lot of skilled people and resources and that the World Health Organisation used South African experts and studies to inform global policy. Thus there was no way that South Africa could be such a resource for the world and not for its own people.
Mr Kganare also asked if there was more information on the comparison between public and private health care, with regard to the cost of medical procedures, such as circumcision. The assumption would be that the public health care providers would be paid by government, but this was not clear. He also asked if implementation of the NHI would mean that there would be a possibility of increased litigation.
These questions were not answered.
Mr Kganare asked what interaction had taken place between the private and public healthcare providers.
Ms Matsoso replied that DoH had compiled a list of all stakeholders who would be consulted and this process had begun. DoH would not only consult with NHI stakeholders but Human Resources for Health Strategy which would impact on NHI. Also, a schedule was in place for road shows in the provinces for direct engagement with communities. Over the 14 year period, each of the three phases would require public input and consultations would continue throughout the process. She added that DoH would consult with private sector stakeholders, civil society, labour and members of the community, and media would be used to reach out to communities so that they understood how NHI would affect them.
Mr Kganare asked what percent of funds would go towards paying for administration of the NHI.
Dr Pillay replied that it was important to understand that private medical scheme administration checked each claim and that the NHI approach would not check each line item but would agree on a tariff for the service. NHI expected administration to cost a maximum of 3% and thereby not expected to consume resources for NHI.
Mr Kganare asked if the DoH was on track with regard to the time frame for the drafting of legislation for the NHI regulations being rolled out.
Ms Matsoso replied that legislative drafting would follow the policy process. Once the Green Paper had been converted to a White Paper and became policy, then DoH could begin the legislative drafting on policy elements. The DoH had agreed on a global approach. The US health services were largely privately driven; services in the UK were publicly driven and other countries had a combination of both. Demands of South Africans would drive the policy that was required and would form the basis on which legislation was drafted.
Mr Kganare asked for clarification on whether pilot projects would be budgeted for and monitored on a national or provincial level.
Ms Matsoso replied that in the following week DOH would submit their request for the pilot projects grant to National Treasury and the outcome would determine the basis for project implementation.
Ms Matsoso also said that since the process was iterative, comments from stakeholders, including service providers and users of services, would enrich the content and policy issues within the document.
She noted that certain questions could not be answered as they were policy positions which required wide consultation.
The Chairperson concluded that the Committee was encouraged that the public and private sector would be heard and would accept the document as an ongoing process. Comments from the Committee would be made in writing. The hope was that re-engineering of the system could improve primary health care, which was currently inadequate.
Childhood Cancer Foundation South Africa: Briefing on Childhood Cancer challenges and solutions in South Africa (CHOC)
Mr Mzwandile Khanya, Chairperson, CHOC Childhood Cancer Foundation of South Africa, tabled a document setting out some of the myths and facts about childhood cancer (see attached document).
Mr Julian Cutland, Former Chairperson, CHOC Childhood Cancer Foundation, said that this organisation (CHOC) started in Johannesburg in 1979, and its membership comprised parents who had been through the trauma of having a child diagnosed with a life threatening illness. It became a national organisation in 2000. There were currently divisions of CHOC in all major centres. CHOC was an acronym for Children's Haematology Oncology Clinics, the cancer treatment clinic at the Johannesburg General Hospital.
In the 1960s, the survival rate of cancer patients was 20%, but as a result of clinical trials, the survival rate had increased to 75%. In South Africa, there were about 1 000 children with cancer who went undiagnosed and untreated, in each year, and the survival rate was lower than in other countries due to non-recognition of signs and late diagnosis. Also, often a child was sent to an adult cancer oncologist only to find that the family would run out of the available medical aid, about six months later. Childhood cancers were different from adult cancers in types, frequency and treatment protocols. They were not lifestyle-related; and they were generally not preventable. It had been accepted worldwide that children had to be treated in paediatric oncology units, by paediatric oncologists, and using paediatric protocols. This was typically at major tertiary/academic hospitals. Teenagers and adolescents treated in paediatric units did better than those treated in adult units, and there was a trend in some countries for specialist teenage cancer units.
Treatment consisted of a combination of chemotherapy, radiation and surgery, depending on the stage and type of cancer, but it was generally intensive and done over a period of one to three years. Regular visits to the treatment centre placed a wide range of demands on the family, in terms of time, financial, emotional, and spiritual needs. These demands were exacerbated when the child was from out of town. CHOC believed in treating the child and not the illness, and this included giving family support. South Africa had world class treatment centres and used international protocols, but struggled with limited resources.
Mr Francois Peenz, Chief Executive Officer, CHOC, said that CHOC offered psychosocial and emotional support to families through other parents, volunteers and social workers, and funded transport for those who would otherwise be forced to abandon treatment for lack of finances. The primary focus was on public sector hospitals, through funding of medical equipment and maintenance of medical units and support for doctors and nurses to attend international and national conferences, where South African doctors presented their research and were world leaders, improvement of treatment centres, and funding for the Childhood Cancer Registry 2000.
CHOC cooperated with government and a number of non government organisations (NGOs) and was part of the International Confederation of Childhood Cancer Parent Organizations (ICCCPO). CHOC owned seven houses around the country (five from the Danone Project) and rented two more, for parent/s and their child during the treatment years, and was currently investigating the option of increasing the number of rooms in the Western Cape. CHOC also supported child-friendly wards and offered information and handbooks for parents and children in the various languages.
The ‘Warning Signs Project’, which was started a few years back in conjunction with South African Children’s Cancer Study Group (SACCSG) had led to more children being diagnosed and treated.
Ms Tiisetso Tshehle, Social Worker, CHOC, described the challenges of culture in oncology, how these challenges could be overcome, and the benefits of cultural competence.
Professor Mariana Kruger, SACCSG, CHOC and Executive Head of the Department of Paediatrics and Child Health, Stellenbosch University and Tygerberg Children’s Hospital, said that currently the worldwide trend was that paediatric oncologists should be looking after children diagnosed with cancer until they reached 27 years old. It was important to note that the South African Constitution defined a “child” as a person under 18 years of age. However, the public hospitals in South Africa had an upper age limit for children’s wards of only 12 years. Children and teenagers reacted differently to disease, when compared to adults, and did much better when treated under paediatric protocols. The SACCSG and South African Paediatric Association (SAPA) put in a strong plea that children up to the age of 18 should ideally be treated in paediatric units. In order to make this practical for public hospitals, they asked that children in South Africa at least be treated in paediatric units until the age of 15 years. A separate space for teenagers in adolescent units was also a goal.
Another problem was that not all provinces had treatment centers and certain specialised treatments could only be done at one centre. A model for satellite centres was being addressed, so that children did not have to attend a tertiary hospital for follow-up treatment. There were tertiary grants paid to provincial hospitals to assist with providing treatment, but in practice the funds did not always reach childhood cancer, which was a relatively rare disease. This was a global problem. HIV/AIDS had been a focus for international funding in Africa. During the United Nations (UN) Summit in New York in September 2011, the issue of more international funding for non-communicable chronic diseases, particularly childhood cancer, would be addressed.
The National Cancer Control Plan had been introduced, as it was important that cancer was a reportable disease, to know the burden of the disease. Currently there were no national statistics available from 2000 onwards. However, the Department of Paediatrics and Child Health and the SACCSG had started a Tumour Registry in 1987, and the data up to 2007 was currently under analysis. It was important that, in the event that the Department of Health did recognise childhood cancer as a ‘Notifiable Disease’, it must then link the Tumour Registry with future planning, according to the statistics and epidemiology of the disease, such as the impact of radiation on diseases.
Professor Kruger then outlined the priorities. Firstly, there was a need to produce a coherent plan and National Childhood Cancer Policy (NCCP), and to ensure that children were treated by paediatric oncologists in paediatric wards. There was further a need to recognise the burden of cancer, and create awareness of the huge number of childhood cancer long-term survivors. Childhood survivors could go on to lead a normal adult life, and would benefit South Africa’s future workforce. Childhood cancer should be included in an Integrated Management of Childhood Illness Policy, to create awareness in medical staff, from primary care level to tertiary and quaternary care, and so that communities could become aware of childhood cancer. Hospital schools were also critical, and in this regard she pointed out that there were still tertiary hospitals without schools. This would require partnering with the Department of Education. Tygerberg Hospital School was one of the best in the country, and she invited Members to visit it.
Mr Khanya concluded that CHOC’s focus was that all children should be diagnosed, treated effectively and have their needs supported. There was a need for concerted and interactive support by all role players and a need to develop a stronger public-private partnership with the Departments of Health and Education, to streamline important issues in the right direction.
The Chairperson said that he was happy that the DoH was present during this presentation, and hoped that when NHI was implemented, there would be support and greater awareness, probably with support from SAPA, for childhood cancer. He asked if there was a genetic predisposition to childhood cancer.
Prof Kruger replied that medical science was continuously addressing genetic predisposition to childhood cancer, as it was always better to prevent rather than have to treat a disease. Genetics did play a role, as cancer was uncontrolled growth of a cell. Something must happen to the control mechanism of growth of the cell, that caused it to go wrong, and if there was something on top of that (a second heat), then a cancer could develop. In acute lymphoblastic leukaemia - the most common cancer - and retinoblastoma, there were clearly genetic abnormalities and sometimes the cancer could be treated. However, some cancers had been identified but treatment was unknown.
A British study in the 1980s and 1990s on the reasons for childhood cancer had made certain findings on the immune response and genetic make-up of children, originating from the embryonic phase. Thus cancer in young children was more aggressive than adult types of cancer, but was more curable than adult cancer. There was much ongoing international research, including research by South Africans, on that particular aspect.
Ms Segale-Diswai asked how rural areas in the North West could hear about CHOC and whether CHOC was working together with the Cancer Association of South Africa (CANSA).
Mr Khanya replied that CHOC had a presence in areas where there were treatment centres. The aim was that it should reach all provinces. It was not yet represented in the North West Province. Although CANSA concentrated on adult cancers, it did reach more people in the country and thus CHOC had signed a Memorandum of Understanding (MOU) with CANSA to partner for utilisation of resources where possible.
Ms Ngcobo asked where the seven CHOC houses were located.
Mr Khanya replied that the houses were near treatment centres. He listed them as Saxonwold, near Charlotte Maxeke Hospital, (previously Johannesburg General), Diepkloof, Soweto (near to Baragwanath Hospital) and Pretoria, in Gauteng, and near Inkosi Albert Luthuli Academic Hospital in KwaZulu Natal. In the Western Cape, it had offices in Plumstead and a lodge at Tygerberg. It was also based in East London in Eastern Cape.
Mr Peenz added that parents had approached CHOC to start a parent group in Limpopo and CHOC had agreed to this request.
Ms Ngcobo asked whether CHOC was involved in the rehabilitation of children with cancer.
Mr Khanya replied that CHOC funded a group of childhood cancer survivors in Johannesburg, who were involved in activities to uplift children with cancer.
Mr Cutland added that physical rehabilitation of survivors would be done primarily through the hospitals. Wheelchairs, crutches and practical needs were supported by CHOC.
Prof Kruger emphasized that physical rehabilitation was being conducted in the hospitals and although this was a focus area for public health, there was a shortage in this service in South Africa.
She emphasised that the success story of paediatric cancer of South Africa was that the majority of survivors contributed to the workforce as teachers, lawyers, and in all other service professions.
Ms T Kenye (ANC) asked if volunteers at CHOC earned a stipend and if they worked on a temporary or permanent basis.
Mr Khanya replied that CHOC was an organisation of parents who were motivated to make a difference, and the majority were volunteers who were not paid. There were different aspects of volunteers, and in some cases, they were paid.
Ms Kenye asked how CHOC would receive funding for renting two additional houses and for paying social workers.
Mr Khanya replied that there were a number of projects for funding. The last house in Diepkloof was funded by the “CHOC Cows”, who were individuals who cycled in events to raise money. They also cycled to sponsor national awareness of the warning signs and symptoms of childhood cancer.
Mr Peenz added that the “Cows” was started three years ago by a parent who had lost a child, and wanted to give back after receiving support from CHOC. In that year, eight “Cows” cycled in the Kfm 94.7 Cycle Event and raised R270 000. The following year, 130 “Cows” cycled, and raised R2.3 million. Last year, 274 “Cows” cycled and R4 million was raised. These funds were raised from the public. Platinum Life donated a percentage of insurance. There were many other initiatives he could describe, which would require more time than the meeting allowed. At the Berg River Marathon, for example, 16 individuals handed out childhood cancer awareness pamphlets to children along the course of the event.
Mr Lekgetho said that CHOC’s participation in the Green Paper on the NHI was important and urgent.
Mr Waters asked if CHOC had engaged with the DoH with regard to updating of the cancer registry and if CHOC had shared its registry with the DoH, so that it could contribute information related to the allocation of funds. If so, he wondered what the DoH response had been. The Registry would be crucial for the DoH to determine childhood cancer requirements and fund allocations to meet those requirements. He asked if CHOC could share, from its Registry, what types of childhood cancers were most prominent.
The Chairperson asked CHOC to elaborate on the impact of CHOC interaction and asked if conclusions could be drawn from analysis of the data on the Registry.
Professor Alan Davidson, SACCSG and Head of Paediatric Oncology, Red Cross Children's Hospital, said that the Children’s Cancer Registry (CCR) had been fully functional since 1987, and information was being contributed by all paediatric oncology centres in South Africa. However, there were challenges when children were treated privately, and surgeons did not report the case to the Registry. Furthermore, the National Cancer Registry (NCR) was a pathology-based registry, and at the turn of the millennium, most private pathologists had stopped submitting data after concerns were raised about patient consent. Recently, legislation initiated by the Working Group had been passed to deal with the issue of cancer as a reportable illness, and this would hopefully allow the Registry to catch up on the missing data and have accurate figures for the future.
He explained that the rollout of the legislation was not as simple as it appeared. The CCR was written into the draft legislation so that there would be a definite relationship between the NCR and CCR for the future. However, in the final draft, the reference to the CCR was removed, so it was currently not catered for in any legislation. There was still a need to maintain the relationship. From the CCR point of view, the purpose of having data was to enable planning and allocation of resources. It was hoped that the CCR would have access to the data collected on children under the age of 15 years, as there would be reports to the NCR that were not reported to the CCR. At present, paediatric oncologists were double-reporting to both the CCR and NCR. However, the complex history of the CCR would not necessarily affect the future outcome, which was about maintaining relationships. Professor David Stubbs, the Chairperson of SACCSG, was part of the Working Group, and would ensure that this relationship was maintained.
Professor Davidson concluded that he hoped that it was clear that it was important for Members to support the DoH with regards to the registry and collection of data. The mere fact that there was legislation in place did not necessarily ensure that those people in the hospitals would fill out the forms.
Ms H Msweli (IFP) asked what the symptoms of childhood cancer were. She asked who funded CHOC transport, who received the money for transport. She also enquired who monitored the process of treatment; and whether the Department of Education or the DoH were responsible for teaching children about cancer.
Professor Kruger listed some of the warning signs for childhood cancer. These could include an unexplained fever which did not respond to antibiotics, sudden abnormal swelling or mass appearing on the body, continuous pathological pain which wakened a child, after s/he had fallen asleep, a white spot in the eye ball, sudden change of gait, speech, and writing (which tended to be indicative of a brain tumour), fine point bleeding of the skin, or skin that bruised easily, and severe nose and mouth bleeds
She asked the Committee to support CHOC in displaying posters of these danger signs at Primary Healthcare Clinics throughout the country.
Professor Davidson re-emphasised that a checklist of the obvious warning signs for childhood cancer, as a non-communicable disease, should be included in the Integrated Management of Childhood Illness Policy, which was currently being considered. In this way, the primary care physician or nurse could be alert to the signs, and refer up the chain rapidly to cut down on any time delay for treatment.
The Chairperson said that he would have liked to have continued the meeting. What CHOC was doing should have been done by the DoH. This clearly showed the gaps in the health services and Primary HealthCare in the country. It was enlightening to find that there were people volunteering passionately, without payment or any corruption with regard to financial resources. He was sure that all Members would like to see an NGO in every province and hoped that the DoH could invite CHOC to work with it. This Committee would assist wherever possible.
Directorate on Radiation Control: Progress Report
Ms Matsoso said that the Ministerial Task Team on Regulatory Function related to Radioactive Sources had established six working groups (WGs) to streamline the activities and to ensure effective work.
The first three WGs dealt with the focus, and work on these would inform the actions to be taken by the other three WGs. WG 1 focused on the structure and capacity of the unit, based on the audit that was done, and would address the strategic functions, structure and future position of the Directorate of Radiation Control (DRC) and Sub-Directorate of Radio-Nuclides. WG 2 had met more than once to discuss their function to address lost sources, and how to reassure the public about the risk of lost sources. This was the most active group. WG3 was responsible for a Self-Analysis Tool (SAT) Action Plan which would then be used for WG 4 stakeholders involved in the regulatory control of the radio-nuclides mechanism, and the legislation that would be required. WG 5 would address international relations and obligations. WG6 would address anything that may have been overlooked in new developments in National Radiation Monitoring and Control.
WG 1 and WG 2’s preliminary work had been completed, and draft reports had been prepared for the Minister. WG 3 was expected to complete its report by the end of the following week, at which time all three reports would be submitted to the Minister. Based on those reports, the Task Team would then determine the work of WGs 4, 5 and 6.
Members had raised serious concern about the registry of lost sources. A figure given by one member suggested that there were 360 missing sources. The WG 2 had confirmed that there were 267 missing sources, and had categorised them according to their risk.
Dr J (Seppie) Olivier, Director of Radiation Control, Department of Health, explained that the categorisation scale for lost-source danger was in accordance with the International Atomic Energy Agency (IAEA) guidelines. These were in turn based on the Dangerous Principle, which looked at the various actions and possibilities, including whether a source was metal or poisonous, the radiation characteristics, the decay, half-life, and determined certain dangerous values (‘D values’) for various nuclides. Based on this, an interpretation of the danger was then given, ranging from Category 1 - extremely dangerous, to Category 5 -most unlikely to be dangerous.
Of the lost sources currently on the Register, one fell into category 3. This dangerous source was lost underground, and was marked on the national map. No further investigation was deemed necessary. All other sources were category 4 or 5 (unlikely, or most unlikely to be dangerous). 60% of lost sources were in category 5. Lost sources were primarily soil, moisture and asphalt gauges, which were small portable instruments used in road building, agriculture and related industries. Due to their relative portability and the fact that they had to be taken from point to point, they were often orphaned, stolen or lost. WG 2 would make recommendations on what would be done about these lost sources. It was unlikely that a search would be required for sources from category 4 and 5, which had been missing for up to 30 years. Not all countries could provide details on lost sources in category 4 and 5 as they were not included on their control regime, so that they would not know when something was missing.
Ms Matsoso said that recommendations from WG 1, 2 and 3 would be shared with the Committee after they had been approved by the Minister. WG 1 had seriously reviewed the capacity recruitment strategy.
Mr Kganare asked what progress had been made with regard to attracting qualified human resources since 22 June 2011.
Mr Hoosen said that he felt that the issue of lost radioactive sources was a “time bomb” and that the DoH was not taking the issues as seriously as they deserved. There appeared to have been little progress since the previous meeting on the 22 June 2011.
Ms Matsoso said that the first meeting of the Task Team was in February 2011, and as an immediate response, the Task Team had established the six working groups and a Chairperson had been appointed. Four CV’s of competent medical physicists, who had been head-hunted, were received, and interviews would be held in the following few weeks. The DoH had not been able, to date, to recruit appropriate experts in the field because it was trying to attract them at Level 9. Experts were included in the Task Team and some were leading the Working Groups, and working with the DoH on a continual basis, but the capacity of the Secretariat was a concern. The immediate response was to attract qualified people who could work in the Secretariat.
WG 2 had made information on the lost resources available, and the recommendations of the WG 1, 2 and 3 reports would be shared with the Committee in the next two weeks.
Mr Hoosen asked for clarification as to whether the DoH would issue a search for category 4 and 5 lost sources, and how long it would take for the lost sources to be found.
Mr Waters commented that he was absolutely amazed at how little progress had been made. He asked for clarity as to whether the lost sources had a low risk of radioactivity, and for assurance that they did not pose any health impact on the public. He asked when the sources were likely to be found, and how the DoH could justify not searching for all lost sources when it was under an international obligation to know where each source was located.
Mr Waters asked if the IAEA had been informed about the lost sources. If so, he wanted to know when this was done, and what the response of the IAEA was. He also asked if the IAEA had offered to give assistance and what the DoH believed the role of the IAEA should be with regard to lost sources.
Dr Olivier replied that there was nothing strange about the number of lost sources. This was a natural occurrence around the world. It was practically impossible to trace some of them and many on them were on the database only because final documentation of disposal records had not been submitted to the DoH. Those that were lost through malicious actions were reported to the Registry through security agencies but had not been found. Some of the lost sources had been lost for many years. There was an option of using experts physically searching for them with instrumentation, but rather than saying that it would not happen, he preferred to say that the recommendations of the report would guide the Task Team on exactly what to do. Indeed, there was the option of asking the IAEA to assist. Dr Olivier said that that if sources were removed from their containers or swallowed, they would have effects on health, but misuse of those on the lower end of the scale would not threaten life. The report would elaborate categorically on the risks per item and event.
The IAEA had a number of bodies to whom lost sources were reported. In the past, the DoH had made use of the Illicit Trafficking Database, through the Nuclear Energy Corporation of South Africa, but now had a contact in its own office through which the sources were reported. DoH did not expect a response from the IAEA, as what had been described was regarded as a usual occurrence throughout the world. If there were any higher-risk sources lost, the DoH would contact the IAEA.
The Chairperson asked if the lost sources could be used as a type of war weapon.
Dr Olivier replied that they could be used for malicious purposes. A number of them, together with an explosive, would cause widespread economic problems and limited health effects. Over the past ten years the IAEA had upgraded its approach to securing of sources, so that were unlikely to be lost in any way. The DoH had also secured enormous cooperation with the IAEA leading up to the World Cup 2010. IEAE provided for safeguarding of category 1 and 2 sources, which included cobalt units at hospitals, three operational irradiation plants and two facilities that made use of radiation processes for developmental research, and which were actively involved in sterile insects projects for safeguarding of orchards. These processes were not implemented by the DoH, due to lack of staff.
The DoH, as the regulator of Radiation Control, would, however, implement a range of measures to enhance its capability to safeguard the loss of sources, within national and international capability. IEAE guided these regulations, and was in agreement that it would never be possible to prevent all theft. If someone really wanted to get to a source, they would.
Dr Emma Snyman, Deputy Director: Radiation Control, Sub-Directorate: Radio-Nuclides thanked Ms Matsoso for her insight and personal support to the capacity problem. Problems had to be addressed over a period of six years. Lost sources would be addressed in the report. However, the real issues were not the lost sources, but the capacity and structural problem of the Sub-Directorate. The WG 3 report would include all the deficiencies identified by the Self-Assessment Regulator Tool (SAT), which was guided by the IAEA.
Mr Waters asked for the reason why the Hawks had visited the DoH around the issue of lost sources.
Ms Matsoso replied that the Task Team required support from the stakeholders, which could strengthen regulator capability. The Hawks had visited to discuss how it could support regulatory functions of Radiation Control.
The Chairperson was happy that the DoH had given support to the Task Team, but said that there was clearly much work still to be done. The fact that the lost sources could be used to cause harm was of concern. He requested quarterly reports on the status of the lost sources.
The meeting was adjourned.
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