National Health Insurance (NHI) Bill: public hearings day 17

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28 July 2021
Chairperson: Dr S Dhlomo (ANC)
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Meeting Summary

Video          Part 2

NHI: Tracking the bill through Parliament

In this virtual meeting, the Committee held public hearings on the National Health Insurance Bill. Five organisations presented oral submissions. All the organisations welcomed initiatives to improve access to quality healthcare services to all South Africans and proposed a number of amendments to improve the Bill.

The FW de Klerk Foundation highlighted Canada's Supreme Court judgement which found that prohibiting private medical insurance in the face of long wait times violated human rights and freedoms. The submission emphasised the impact of NHI on individual rights to freedom of association. The NHI impact on asylum seekers was noted and it was suggested that there was no justification for the regression in access to healthcare services for that group. Concerns were raised about the Minister's powers under NHI. In the Constitutional Court judgement of United Democratic Movement v Speaker of the National Assembly and Others, the Chief Justice said that for good governance there must be a separation of powers between the legislature, executive and judiciary and that there needed to be appropriate checks and balances to ensure accountability, responsiveness and openness. The Foundation suggested that this applied to the powers of the Minister in the NHI Bill.

Committee members suggested that the Foundation seemed to be most concerned about the potential limitations the Bill posed to the private sector and insured patients. Under the current system only the wealthy had the right to choose. The submission stated a non-political approach should be used to address health inequalities and they asked whose political interests were being advanced by NHI. Clarity was sought about the Foundation’s recommendation for more pilot studies and if it would support NHI if these did not take place. In answer to the complaint about consultation, Members emphasised that consultation had taken place since the NHI Green Paper. Members asked how well the Bill protected the Fund from corruption and maladministration and for recommendations to prevent corruption. It was suggested that the Foundation’s concerns seemed to be ‘swart gevaar.’ The high fees paid to private medical schemes were highlighted.

The Helen Suzman Foundation supported universal health coverage but suggested that it could only be implemented if the existing system was functional. The current reality of South Africa’s healthcare system was outlined. Emphasis was given to the lack of quality healthcare in the public sector, as found by the most recent Office of Health Standards Compliance inspection report. The Health Market Inquiry (HMI) found that the state had failed in its regulation of the private healthcare sector which was neither efficient or competitive. It stated there was a lack of consultation with the private sector about NHI. The essential problem with NHI, as set out in the Bill, was that it was a funding and payment mechanism that would be superimposed on two badly functioning healthcare sectors. The Bill did not adequately explain how NHI would transform these sectors and address the problems. There was no proper analysis of what NHI would cost. A number of recommendations were made to the Bill, including that the healthcare system needed to be functional before NHI was implemented.

Committee members emphasised that extensive consultations had taken place on the Bill since the beginning of the NHI process in 2008. Given the challenges outlined in the submission, they asked if HSF agreed that for these very reasons NHI was needed. Clarity was requested if it was a legitimate HSF concern that the state would not be able to fund NHI as the problem of medical scheme members running out of benefits during the year was highlighted. The parallel reforms indicated in the Memorandum of Objects were noted in response to the HSF suggestion that the health system needed to be fixed before NHI implementation.

The Independent Community Pharmacy Association (ICPA) emphasised its support of NHI and called for the Committee to expedite the promulgation of the NHI Act in light of patients’ needs. The role of community pharmacies was proposed as a first port of call for patients under NHI. The Association recommended that pharmacists be included in the definition of primary healthcare, health worker and healthcare provider. A number of recommendations were made to definitions in the Bill. It was suggested that accreditation of pharmacies be delegated to the regulator, South African Pharmacy Council, by OHSC to improve efficiency. It was suggested that the Medicines and Related Substance Act needed to amend the definition of ‘authorised prescriber.’

Committee members asked why pharmacists needed to be specifically mentioned in the Bill when they were covered already. They asked about the percentage of independent community pharmacy in rural and urban areas. Clarity was sought about the suggested replacement of OHSC by the South African Pharmacy Council, to accredit pharmacies. There was concern about the proposed role and scope of pharmacists under NHI. Members asked about the ICPA role in the fight against antimicrobial resistance; if had linkages with the district health information systems; the number of medico-legal claims in the pharmacy sector and how it mitigated this.

Be@root emphasised an integrated systems approach in primary healthcare and the role that local community healthcare could play. Emphasis was given to maternal and infant care and the challenges of the high caesarean section rate in the country. The systemic challenges in the nursing profession were outlined, these included regulatory challenges and problems in the accreditation and certification process. The role that community midwives could play in communities was emphasised, specifically in addressing some of the systemic healthcare challenges such as the high caesarean section rate as well as gender based violence and education. It suggested a review of natural and traditional medicine practices as well as an accreditation process to recognise existing community midwives and the role they played.

Committee members asked how the submission should be used to guide amendments to the Bill, as there were no specific proposals to clauses in the Bill. Clarity was requested if Be@root had consulted with the South African Nursing Council or Chief Nursing Officer about the reinstatement of community midwives and conducting a review of the nursing system and education in maternal support training. Clarity was requested if home-based midwifery took place currently. Members asked about what control mechanisms should be in place to ensure accountability of community midwives. They asked about the risk of medico-legal claims for community based midwifery. More information was requested about the training of traditional birth attendants; if they were regulated after training; and how community midwifery fitted into basic and advanced midwifery programmes.

Rare Diseases South Africa (RDSA) focused on rare diseases and the challenges faced in the healthcare system when it came to such diseases. It was suggested that the Bill was not clear if rare disease would receive funding - as it was currently insufficient due to a limited classification system. RDSA asked if the NHI Bill would cover rare diseases, as it represented a significant burden of disease. Challenges in obtaining medication were outlined - particularly given the low number of cases per specific rare disease. The data deficit was emphasised which limited tracking and dealing with rare diseases strategically. It requested ring fencing funding for rare diseases.

Committee members asked what bottlenecks had been identified in its engagements with the Health Department. They asked about the number of diagnostic categories of rare diseases in South Africa and the costs for providing medical care to persons with rare diseases. Members welcomed suggestions about addressing rare diseases under NHI. Members asked if there were preventative measures for rare diseases; international examples of UHC countries ring-fencing funding for rare diseases and RDSA reach in servicing rural, poor and uninsured populations.

Meeting report

FW de Klerk Foundation submission
Adv Jacques du Preez, Foundation CEO, said the Preamble provides that the Bill aims to make progress “towards achieving universal health coverage” (UHC) through the establishment of a NHI Fund as a health financing system. Clause 2 provides that the NHI will serve as the “single purchaser and single payer of health care services” to ensure the equitable and fair distribution of healthcare services. In a 2005 judgment by the Supreme Court in Canada in Chaoulli v Quebec, these issues were specifically at stake. The judgment found that legislation prohibiting residents from taking out insurance to obtain private sector healthcare services already available under Quebec’s Public Healthcare Plan was an undue limitation of the rights to life and personal inviolability protected in the Quebec Charter of Human Rights and Freedoms.

Potential impact on individual’s right to freedom of association and interrelated rights:
• Clause 33 of the NHI Bill provides that the role of Medical Schemes will be restricted to only “complementary cover to services not reimbursable by the Fund” once the NHI has been fully implemented. We submit this clause could be read as compelling a member of a Medical Scheme to register in terms of NHI Act so that they could use the healthcare services provided by the NHI, as their Medical Scheme will not be allowed to provide coverage for these services.
• In clause 8(2)(b) of the Bill, a person will be obliged to pay for the healthcare services if they “fail to comply with referral pathways prescribed by a health care service provider or health establishment”. It appears that if a person refuses to use the NHI referral pathway to see a specialist (as one cannot directly approach a specialist) the Medical Scheme may cover these costs. However, this arguably does not appear to be (at least) the case with primary healthcare services.
• Members of Medical Schemes will indirectly be forced to register in terms of the NHI Act to access these services. As no detail is provided on the meaning of “complementary cover”, it is not possible to say which level of healthcare services will be restricted. However, on our understanding, this at a minimum could exclude the cover of primary healthcare services.
• Clause 33 brings into question the potential infringement on the right of a person to freedom of association, guaranteed in section 18 of the Bill of Rights in the Constitution.
• The South African legal scholars Ian Currie and Johan de Waal have held that there are four “fundamental justifications” for the right to freedom of association. One of the relevant justification grounds is that the right to freedom of association “prevents the state and other powerful social actors from determining the most basic contours of our lives through coercion”.
• The state, by potentially forcing mandatory registration of people to become NHI Fund users, as their Medical Schemes are denied from providing coverage for these healthcare services, is potentially infringing on “the most basic contours” of a person’s life “through coercion”.
• One would need to determine if the means adopted to achieve UHC to give effect to section 27 of the Constitution justify the limitation of the rights to freedom of association and to a degree, to a person’s right to bodily integrity, by weighing up the different factors in the section 36 limitation analysis of the Constitution.
• Currently it is factually impossible to do the section 36 limitation analysis as no detail has been provided on “complementary cover” or the type of healthcare service benefits the NHI Fund will cover. Information on this is critical to determine “the nature and extent of the limitation” and “the relation between the limitation and its purpose” in section 36(1)(c) and (d) of the Constitution.
• Further, the limitation can only be properly analysed if information has been provided on alternatives to achieve UHC. One would then be able to determine if “less restrictive means” are available in section 36(1)(e) of the Constitution to achieve this purpose.
• Currently the vagueness of the provisions and lack of detail potentially reflect an overbroad limitation on the rights to freedom of association and bodily integrity.

A key aspect in the Canadian judgement was based on the unreasonable waiting time for certain surgical procedures under the Public Healthcare Plan, which made the limitation of private healthcare for these procedures unreasonable. Although the Quebec judgment is foreign law, which the Committee is not obliged to consider but “may consider” in section 39 of the Bill of Rights, it does raise important considerations for the South African context, when analysing the potential impact of the NHI Bill on the rights to bodily integrity, freedom of association and inevitably, Medical Scheme members’ right to access healthcare services in section 27(1) of the Constitution.

Potential impact of Bill on asylum-seekers right to access healthcare services:
In clause 4(2) of the NHI Bill, an asylum-seeker is only entitled to “emergency medical services” and
“services for notifiable conditions of public concern”. In the 2018 NHI Bill, asylum-seekers were specifically granted the right to “paediatric and maternal services at primary healthcare level.” There has been no justification provided for the regression in access to healthcare services for asylum-seekers

Governance Concerns: Minister of Health’s Unfettered Power
• In the Constitutional Court judgment of United Democratic Movement v Speaker of the National Assembly and Others, the Chief Justice emphasised that - “South Africa is a constitutional democracy - a government of the people, by the people and for the people through the instrumentality of the Constitution. It is a system of governance that ‘we the people’ consciously and purposefully opted for to create a truly free, just and united nation. Central to this vision is the improvement of the quality of life of all citizens and the optimisation of the potential of each through good governance.” The Chief Justice reiterated that for good governance there must be a separation of powers between the legislature, executive and judiciary, and that there must be “appropriate checks and balances to ensure accountability, responsiveness and openness.”
• Central to the evaluation of the feasibility of the NHI Fund is the question of good governance and if enough checks and balances are built into the NHI Bill to limit abuse of power and to ensure “accountability, responsiveness and openness”. It is also important to realistically take stock of the mammoth task the NHI Fund has been assigned as it will be responsible for purchasing all healthcare services.

The Chairperson stated that the Committee had asked the State Law Advisor if the NHI Bill from the National Department of Health (NDoH) had gone through legal scrutiny and for the views of legal professionals on the Bill. As with all professions, there were differences of opinion on the Bill.

Ms A Gela (ANC) stated that the Foundation seemed to be more interested in what would happen to the private healthcare sector and insured patients, specifically how these patients would be impacted by the provisions of the Bill. Medical scheme members did experience financial challenges under the current medical aid system – which the Foundation seemed to believe was alright. Should the country continue with the current system despite these challenges? What were its proposals for the Bill, given that most of what was contained in the Bill was ‘unacceptable’ to it? Did everyone have the right to choose in the current two-tier system or did the wealthy only have the right to choose? Did it think that Chapter 5 of the Constitution should be amended to reduce the powers of the Minister?

Dr X Havard (ANC) stated that the Foundation had stated that an non-political approach should be adopted to address health inequalities in South Africa. This statement appeared to insinuate that NHI policies were advancing political interests. She requested clarity and whose political interests were being referred to.

Dr K Jacobs (ANC) said the impression he got was that until there were satisfactory results from NHI pilot studies, the Foundation was suggesting that government should not pursue measures for equitable access to quality healthcare services for South Africans. Was that its position? The Foundation had suggested that there should be consultation. The process of developing the Bill started with Green and White Papers and later the Bill. Those documents were being consulted during the present process in Parliament. Was there any policy that should have had more consultation? Did it think the processes so far were adequate? Its request that the pilot projects should be included in the Bill was quite unusual. When legislation was drafted was this what was done? It was interesting that it had quoted the Constitution on many occasions but Section 27 was not quoted. Did it think that the rights of those who could not support themselves were disregarded? What did it think of those covered by Section 27(1)(a) of the Constitution? The Committee had heard critics of the NHI, such as it, saying that there was no money to implement the programmes and from where the money would come. The Foundation mentioned examples of NHI in other countries. What was its view on the British government implementing the National Health Service (NHS) immediately after the Second World War, when there were no resources or money?

Ms H Ismail (DA) asked the Foundation how well the Bill protected the Fund against corruption, theft and/or maladministration. Did it think that adequate processes had been put in place to prevent corruption? If not, what additional recommendations would it propose? The Foundation highlighted the considerable power given to the Minister in the Bill. Would it recommend a public parliamentary process for appointing the Board? What risks did it foresee with the current method of appointing the Board? The Foundation mentioned pilot projects and their outcomes – would it suggest that the Department conduct pilot projects to test the legal and operational feasibility of NHI? How important did it think a pilot study was to the success of the NHI project? Was it something that could be bypassed?

Would the Foundation support NHI in its present form, without any additions? What was its view on the impacts of the single purchaser model? The Foundation had mentioned that the funding model was unclear and the sustainability of the NHI was unclear. Assuming there was insufficient funding in a few years – how did it think this would impact access to quality healthcare or the economy in the long run? It stated that the Office of Health Standards Compliance (OHSC) and the Ombudsman must be strengthened. Currently the OHSC was unable to monitor even 20% of healthcare facilities. Government currently monitored 7% of healthcare facilities. Would it suggest that these be strengthened prior to the implementation of NHI?

Mr T Munyai (ANC) said that the Foundation made reference to a number of rights in the Constitution. However, its argument seemed to imply that those rights were absolute and could not be positioned in the interests of the greater good of society? NHI was intended to benefit the entire population by reconfiguring the structure of the healthcare system. Where in the NHI Bill did it refer to ‘citizens rights to choose their trade, occupation and profession?’ Was Section 22 of the Constitution ‘prohibited?’ It believed that health matters should be delegated to Parliament instead of making the Minister of Health the custodian to provide oversight of healthcare matters. He wanted clarity on this. This structure was an outcome of the constitutional arrangement and of the democratic order.

The Foundation seemed to be against use of referral systems, as proposed by clause 7(2)(d) and clause 8(2) of the Bill. The HMI had found that the high costs of healthcare resulted from supplier induced over-servicing. Many conditions could have been treated at a lower level of care. Such treatments got escalated to higher levels of care, such as to specialists or tertiary care. Should that not be a compelling reason to put in place mechanisms that mitigate that problem. Should the use of treatment guidelines be used to guide health professionals on how cases should be treated? Under NHI, why should South Africa pursue inefficient approaches to provision of healthcare services? This had contributed to the current challenges in the healthcare system.

To argue that there was not broader consultation was misleading. In the case of the Green and White Papers as well as the Bill, there were public processes where organisations made submissions to argue against the NHI. It was disturbing that in when the Bill was close to the end of processing, it argued that there had been no consultation, when it had participated in all the consultation processes.

The Foundation had made reference to Canadian Law. He asked if this was similar to the South African Constitution. South Africa depended on the Constitution. To argue that it would not work and would not be sustainable as pilot projects had been carried out. The weakness observed in the pilot projects would be addressed.

Mr M Sokatsha (ANC) said that the Foundation mentioned the Davis Tax Committee Report. Had it made any effort to investigate the source of those figures and if they were based on healthcare costs in the public sector or the private sector? Was it aware that the figures quoted, would look different depending on which sector the researchers sourced the data that informed their calculations? Was there enabling legislation that it was aware of that included information on costing and actuarial figures?

Section 22 of the Constitution provided for individual rights to freedom of trade, occupation and profession. The Bill provided for the components required to establish a functional Fund that properly performed strategic purchasing to realise value for money and the best healthcare outcomes for the entire population. There was no provision that said it was mandatory for all suppliers and providers to participate in the NHI system, except that if they chose to, they needed to meet certain requirements. This was a norm even in the current environment. Why was it opposed to this?

Ms N Chirwa (EFF) was very concerned about the submission, in particular the insinuation that NHI would destabilise the private sector and that people using private care would be compromised. If the NHI was realised it would mean that more people would have access to healthcare. It was ironic that the public sector funded the private sector even though it catered only for 10% of the population. Over R200 billion went to the private health sector and R250 billion plus went to the public health sector. The ratio was already in favour of the private sector. There was already a ‘favouritism’ shown by the state historically and at present. The NHI idealistically sought to correct this. The people who were most compromised by the NHI, were not those who live in ‘cosmopolitan areas or urban areas.’ People who lived in rural areas were the ones who would be subjected to the referral system, as the NHI did not speak to fixing the infrastructure in the public healthcare sector. If there was anyone who should be concerned about accessing services under NHI, it was the people in townships and rural areas. The Foundation’s concern seemed to be of ‘swart gevaar.’ If the concern was access to quality healthcare, why was it not concerned about people accessing healthcare from rural and township areas? Why was its focus on users of private healthcare services?

Ms M Hlengwa (IFP) said that there was the Rule of Law, but there was no equality when it came to access to healthcare. If one went back to the drafting of the Constitution, it would be found that the Rule of Law was included to prevent abuse of power, such as under Apartheid. It seemed that today the country had the Rule of Law but there was no equality in healthcare. When it came to NHI, did the Rule of Law prevent Parliament from bringing in equality in healthcare or would it be correct to use the Rule of Law to ‘block’ the NHI?

The Chairperson said that when the Bill was brought before the Committee, they had asked the Department of Health if they had received legal advice on the Bill. DoH provided the advice of the State Law Advisor. That had to be juxtaposed with what was presented by the Foundation. He emphasised that the Bill was not a product of Parliament and they were not necessarily defending the Bill, the Committee was listening to the views of the various presenters.

He received a call from his medical aid scheme that week, who asked him to increase his premium on the basis that specialists had gone to court and were granted permission to charge as they wished. He brought this to the attention of the Foundation…The Chairperson lost connection [1:03:08].This still had to be regulated by law. Medical professionals should not charge as they wished. This was juxtaposing Section 27 of the Constitution, where it stated that the state must take reasonable measures within its available resources to achieve the progressive realisation of these rights. Everyone had the right to access healthcare services. How did it then deal with that aspect of the Constitution? He noted that the Foundation had not questioned the value of the Benefits Advisory Committee (BAC). The expectations of the BAC was to agree on the comprehensive health services for the country. It was suggested in the Bill that once NHI reached maturity there would be no need for additional services to be offered on a private medical scheme basis. Would the Foundation anticipate that there would come a time when there would be no need for medical aid schemes. The issues highlighted by the Presidential Health Compact still needed to be addressed.

FW de Klerk Foundation response
Adv Jacques du Preez reiterated that he was not an expert in the medical field nor in the economics of the provision of healthcare. The Foundation was fully supportive of implementing Section 27 of the Constitution and ensuring access to healthcare for all South Africans. The Foundation was well-aware of South Africa’s dual system of healthcare delivery as well as the disparities that existed between the public and private healthcare sectors. It was aware that finances played a central role in what one was able to access in the current system and was supportive of access to healthcare for all and universal health coverage. Questioning aspects of the NHI Bill did not mean that it was against the implementation of UHC as envisaged by the NHI Bill. The Foundation was for the advancement and promotion of access to healthcare by way of UHC. It was merely raising some concerns about the Bill and finding constructive answers.

There was no political agenda being advanced in its submission. The Foundation was an apolitical non-profit organization and their core mission was to advocate the Constitution, the Bill of Rights and South Africa’s success story. The Foundation was advocating for the implementation of Section 27 of the Constitution ensuring UHC and better healthcare for South Africans – not just those who could afford private healthcare but those reliant on public healthcare. It was asking if the NHI Bill was the only way to ensure healthcare delivery to South Africans.

On the NHS being setup after WWII and his reference to the Canadian system, he urged the Committee to consider the situation with South African Airways (SAA) and Eskom. In South Africa there was a ‘war’ against mismanagement, corruption and maladministration. Perhaps the British, even though they came from a physical conflict and implemented the NHS, it did not seem as if the British state-owned enterprises were in such a mismanaged position at the time. South Africa’s SOE infrastructure was virtually on the point of breakdown – and the United Kingdom did not have that at the time of setting up the NHS. He said that the Bill both protected against maladministration and corruption and did not.

He stood by the Foundation's submission. On the one hand it was proper that the Minister should be in charge. The Foundation was concerned about the rampant and severe corruption in a number of SOEs – evidenced on the ground presently in South Africa. There needed to be more adequate checks and balances in place to balance out the range of power afforded to such a position. This would not only be in government’s favour – but in the favour of the population. There needed to be a broader, more transparent system that included checks and balances to dissipate that power.

The Foundation saw as a regression the Minister solely appointing the Board. It would be a better if there was parliamentary oversight or a public parliamentary process of appointing the Board. Was the NHI Bill the only way forward in the proper balancing of rights between the public and private sectors?

On the single purchaser model, he noted the positives and negatives associated with the COVID-19 vaccine roll-out in South Africa. Government turned itself effectively into a single purchaser model for the roll-out – this had highlighted the pros and cons of a single purchaser model. If government utilises a single purchaser model under NHI – there needed to be strongly entrenched methods of accountability to avoid the negative implications and effects.

There was a sense that the Foundation viewed certain constitutional rights as absolute – and it was asked why certain rights could not be tampered for the broader good. By all means this should be the case. The Bill of Rights protected the population from inadequate government infringement. Where the enforcement or promotion of one right was at the cost of a different right – it was a balancing act as set out in the Constitution.

South African jurisprudence often drew positively on Canadian and Indian law. Guidance was often drawn from those countries. The Canadian Constitution was similar to the Constitution of South Africa. – both were considered to be very modern and progressive constitutions.

The Foundation was fully aware that South Africa’s dual system of healthcare delivery had progressed to a stage where one’s financial situation dictated the healthcare one could access. This needed to change. That was why it supported the realisation of Section 27 of the Constitution. The Foundation suggested a way that was most conducive for everyone. The rights of everyone should be prioritised.

He noted the concern about the provision of healthcare in urban versus rural areas and agreed with the Member on this. This was exactly why new suggestions and a new plan was needed. The NHI was the framework to address this disparity between the delivery of healthcare services. The Foundation wanted to leave the Committee with the question that although the NHI might be a framework to achieve this - it ought not to be a framework that completely did away with the positive aspects of the existing system.

He suggested that the Committee look at the submissions made about the new Land Court Bill. South Africa had an established land claims court system – but there was a whole new system coming as envisaged in the Land Court Bill. That Bill and the new court system looked at overhauling the system and removing the Land Claims Court and any positive progress it had made.

South Africa had a problem with the healthcare system where not all South Africans could access quality healthcare. This problem needed to be addressed, the question was how. Should the country completely do away with the existing system, including the positive aspects and implement a new untested system which would have fiscal implications if it failed.

Was the NHI Bill the only way? The Foundation suggested that all alternatives be considered. In considering alternatives, there might be a need for further consultation with the healthcare sector and industry. A consultative forum might be necessary before the NHI was implemented. The Foundation made a number of suggestions about strengthening the OHSC as an independent body and the Health Ombudsman. There could be real value in strengthening the capacity of existing infrastructure and structures before overhauling it into a new system where the fiscal implications were unknown.

The Chairperson encouraged the Foundation to engage with the Department of Health so that some of the concerns raised could be attended to.

Helen Suzman Foundation (HSF) submission
Mr Anton van Dalsen, HSF Legal Counsellor, presented.

Universal Health Coverage
• The HSF supports the goal of the World Health Organisation standard of quality, affordable UHC.
• However, UHC as set out in the NHI Bill can only be implemented in an effective manner if the existing, very substantial problems in the SA health sector are first addressed, together with a range of issues which the NHI Bill and government policy have not taken into account.

Reality of SA public healthcare sector
• The quality of health care in the public sector is unacceptable. The OHSC found in its most recent inspection report (2018/19) that of 730 public sector health establishments inspected, only 19% were compliant with required norms and standards.
• In its 2016/17 report, OHSC concluded that in the public health sector: “Leadership and management, including operational management, was poor or lacking, leaving subordinates without the required level of supervision, knowledge, competency and support from senior staff, including clinical professionals. Governance structures in the greater number of health establishments were not available, impacting negatively on leadership. Where governance structures were in place, there was no evidence that they provided oversight to ensure quality care, accountability and good management.”
• The HMI into the private health sector found in 2019 that the state had failed in its duty to regulate that sector in an adequate manner. It found that: the sector is neither efficient nor competitive and
the private healthcare market is characterised by high and rising costs of healthcare and medical scheme cover, and significant overutilization without stakeholders having been able to demonstrate associated improvements in health outcomes.

Lack of consultation with the private sector
• The private health sector will continue to play an important role. It is important that there is a “buy-in” by the private health sector of the NHI principles and operational structure, for it to function properly. It is therefore astounding that minimal consultation has taken place. High profile gatherings under Presidential auspices, which serve the purpose of promoting government’s own views, cannot be regarded as true consultation.

The essential problem with the NHI Bill
• A funding and payment mechanism is to be superimposed on two badly functioning components - the private and public health sectors.
• It is nowhere explained how the NHI will transform these sectors into an efficient set of health care providers.        
• The impression cannot be avoided that the underlying intention of the Bill is only to create a funding and payment mechanism, with little regard to how health care is to be transformed.

What will the NHI cost?
• Government has not provided any estimates and the details in the Memorandum of Objects to the Bill only provides estimates of a few items of preparatory costs.
• The public therefore has to be content with such statements:
• “How long is this going to take? The answer is a long time …. We don’t know all the details of what it will look like in the end. What we do know is we are going to have to be flexible. What is it going to cost? It’s going to cost as much as we can afford.” (Dr Nicholas Crisp, DoH Deputy Director General: NHI) and
“The demand that the NHI Bill should indicate costs is unfair because costs change over time” (Dr Olive Shisana, social policy special adviser to the President).

Absence of a detailed feasibility study
• It is inconceivable that a project of this magnitude would be seriously considered, let alone implemented, in the private sector without a comprehensive feasibility study, including various scenarios to indicate what the associated costs would be for different levels of care.
• It would be logical for estimated costs to be provided for at least three scenarios: 1. if the NHI were to cover only basic services, 2. at an intermediate level of cover and 3. if it were to cover all health costs.
• No such feasibility study has been completed and no cost estimates of this nature are available.

• The NHI Bill makes it clear that all aspects of governance of the NHI depend on the Minister of Health.
• Clause 27 provides for the Minister to appoint a Stakeholder Advisory Committee, comprising representatives of statutory health professions councils, health public entities, organised labour, civil society organisations, associations of health professionals and providers, and patient advocacy groups “in such a manner as may be prescribed”. No clarity is provided as to the duties and responsibility of such a body.
• The proposed governance framework therefore has no independent content of any real substance - this is not acceptable.

The role of private medical schemes
• The NHI Bill and its Memorandum offer no justification on why private medical schemes are to be prohibited from providing cover for services covered by the NHI.
• The NHI is to be funded by taxes, but government clearly intends to prevent taxpayers from exercising freedom to choose if they also wish to insure themselves independently from the NHI for these services. This would be at their election and at their cost.
• In the absence of a justification for such a prohibition, this can only be regarded as irrational conduct by government.

What needs to be done:
• Before commencing with the implementation of UHC, the following needs to be achieved:
• a properly functioning public sector health service
• a properly regulated private sector health service
• substantive consultation with the private sector
• acceptance of the principle that individuals must be permitted to subscribe to private medical health insurance, as their tax payments will fund the NHI
• clarity on the cost of the NHI, estimated on the basis of a comprehensive feasibility study
• confirmation that it is affordable by the state
• If not done, the passing of the NHI Bill and its implementation will not only not succeed in its objectives - it will inevitably lead to a further degradation of both the public and private health sectors in the country.
• It is therefore crucial that the NHI Bill be reconsidered against this background.

The Chairperson noted the point made by HSF that ‘extensive consultations should take place.’ He emphasised there had been consultations since the beginning of the NHI process, since the White and Green Papers.

Dr Jacobs said that the NHI process started in 2008 with the Green Paper with extensive consultations across the country. These consultations included academia, the private and public sectors, civil society and national and international health experts. 150 to 168 consultative meetings took place. There were 59 000 attendees over that period. In 2015 the White Paper was published and consultations took place on that. A second White Paper followed those consultations in 2017. Further consultations took place on the second White Paper. From 2019, Parliament embarked on a thorough process starting with the public hearings in the provinces to where they were now with the oral hearings.

HSF highlighted challenges facing the public sector facilities. It was emphasised in previous submissions that there was a tendency for health professionals to migrate to the private health system instead of working in the public sector (due to the higher reimbursements in the private sector). Would HSF acknowledge that the very reason for introducing NHI systems was because of the inequalities and challenges highlighted by HSF in the submission? In the submission it was said that it was inconceivable that for the private sector to take the NHI Bill seriously. Was HSF advocating for the continued fragmentation of the health system. Was HSF lobbying the private sector not to take the reform seriously? It appeared that HSF found it impossible to envision a non-fragmented healthcare system in South Africa.

Ms Hlengwa said that the HSF seemed to doubt that the state would be able to fund NHI, was this a legitimate concern? Did it think Parliament would implement NHI if the state did not have the money for it?

Ms Gela noted the HSF concern about the future of medical schemes. Some stakeholders informed the Committee that over the years the cost of private healthcare had been increasing and that medical scheme members were not well protected. Users were running out of benefits before the end of the year – which was a problem as they then had to rely on public health facilities. There were complaints about serious governance challenges in the industry. This observation was also made by the HMI. In the view of HSF did this not threaten the achievement of UHC? Was HSF aware that the White Paper provided an analysis of different roles that schemes could play based on international best practice? What was its view of people insuring for healthcare costs twice – in the case of duplicate cover? Did this not lead to insufficient health utilisation? Would this not perpetuate the current inequities, thereby threatening achievement of UHC?

The NHI Bill outlined components that were intended to significantly transform the health system into a unified equitable one. Why did HSF assume that the intention was to superimpose a new funding and payment mechanism and continue with the fragmented system? The Memorandum of Objects clearly outlined parallel reforms that needed to streamline the performance of the health system but the Foundation seemed to ignore this entirely.

The HSF must be commended for articulating support for the OHSC. HSF seemed to be well-aware of the state of healthcare in the country – where the allocation of resources between the private sector and the public sector were different. Did HSF not believe that the NHI Bill addressed the imbalances so the public sector would adequately provide access to healthcare to those that did not have access currently.

Mr Munyai noted that HSF had said that the government had failed to regulate the public sector. Was HSF aware that all market failures, investigated or identified by the HMI, in the private sector were attributed to regulatory failure? Over and above the regulatory failures, there was an investigation of the regulatory impact of market power and the distortion of competition within medical schemes, private sector hospitals and doctors. The HMI also investigated barriers to entry and exit – including imperfect information. Some stakeholders complained about over-regulation resulting in barriers to entry and crowding out of innovation. What was HSF’s view on that?

HSF suggested that the government did not consult the private sector and that government was using the NHI Bill to advance its own views. This statement was very confusing. He had thought that a typical South African would be well-aware of the problems experienced in the healthcare system of the country. Why did HSF not see private stakeholders as citizens who had the right to make proposals the same way HSF was doing now? What did HSF expect government to do to ensure that everyone exercised their rights to contribute to the discussion on the Bill?

HSF submitted six prerequisites that they unilaterally determined must be met before the NHI Bill progressed. However, evidence suggested that there was no universally agreed template that the country must implement policies or reforms to achieve UHC. Even countries that had made significant progress –started their journey at a point when their economies and health systems were weak. The UK NHS was a good example of this. Why did HSF think the prerequisites could not be implemented concurrently with NHI implementation? He asked how HSF reached the conclusion that consumer rights to access healthcare at a place of their choice was limited in the NHI Bill. Why did HSF believe that the proposed reform was aimed at creating a financial scheme instead of introducing equitable access to healthcare services for all South Africans. How did HSF position Treasury in mobilizing funding for NHI?

Dr Havard said that the HSF highlighted challenges facing public sector facilities. There was a tendency for health professionals to prefer working in the private sector due to the higher reimbursement received than in the public sector. Would HSF be willing to acknowledge that the very reasons for introducing NHI came from the challenges highlighted by HSF? The Health Market Inquiry (HMI) recommendations were being considered by NDoH, however there was no mention in the HMI recommendations that stated categorically that the NHI Bill must be amended to incorporate every HMI recommendation. Was the HSF position that the NHI Bill must be stopped until NDoH had implemented all HMI recommendations?

Mr Sokatsha noted that HSF made recommendations for the speedy implementation of the HMI recommendations. How far did the HMI panel consider strengthening of risk pooling for the whole population? Did HMI consider the poor or did it just seek to strengthen risk protection and pooling for those who could afford medical scheme cover? The HMI made a recommendation for the establishment of risk adjustment mechanisms. Did HSF think that these mechanisms would benefit the public sector?

What was the HSF view on mandatory participation in the NHI which would benefit the whole population? Clause 2 states that the NHI Fund would be funded through mandatory payments that aim to achieve equity, sustainability and affordability of healthcare services for all. HSF referred to the rights of taxpayers to access private healthcare services. Was ‘healthcare’ understood as an individual right or as a public good? Social solidarity was a main principle of the NHI. Was HSF familiar with the term ‘catastrophic healthcare expenditure?’ This was a phenomenon where people fell into poverty because they used all their resources to pay for healthcare – selling all their assets. NHI aimed to protect people from this phenomenon – what was its comment on this?

The Chairperson echoed the point by Dr Jacobs about the extensive consultation process. The submission had highlighted problems in both private and public healthcare sectors. The Bill outlined principles of solidarity and mandatory payments. Those were some of the things that would transform both healthcare sectors. The Bill spoke about an incremental approach for implementation. There was a desire for the progressive realisation of the right to access quality healthcare through the NHI and promote sustainable health outcomes. Did these principles not cover the concerns raised by HSF?

HSF response
Mr Anton van Dalsen emphasised that HSF was in support of the UHC principle. The problem was that there was a badly functioning public health system and a badly functioning private health system currently. If the NHI was implemented tomorrow as a funding and payment mechanism for the South African health system, it would fund and pay for bad public and private health. Implementing NHI would not solve the problems that existed. One should not confuse the principle of ‘universal healthcare’ proposed in the NHI Bill. The HSF supported universal healthcare. HSF had a problem with trying to superimpose it on a badly functioning health system. NHI implementation would not solve the present problems. One could throw a lot of money at a health system but if the health system was not working, the money would not help that.

Firstly the public health system needed to be fixed. The problems were clear and it was simply a question of management. In the private sector, the HMI highlighted what had to be sorted out. The private healthcare sector was far too expensive and there were many aspects that needed to be dealt with by DoH, mainly regulatory issues. DoH was responsible for both sectors – and these were things the Department had not been doing and there was no indication of when it would get around to it. This was separate to the NHI principle. To use a metaphor, if one had an old car with a problematic engine, one could get a new chassis and the car would look new but the engine was still there – it would not solve the problem. The engine would breakdown even if one had a brand new body on the car. That was the issue. It was not about ‘looking for benefits for the wealthy.’

The NHI funding would come through taxes. There was no other way to fund it. If taxpayers funded the NHI through taxes, why can they not, if they want to, have private healthcare insurance? If one had surplus money – why not – that is what happens in the UK. A lot of reference was made to the UK NHS but it accepts private healthcare. One cannot prevent medical schemes from providing personal cover. Private health schemes would not interfere with the NHI. The NHI would be separately funded and be a separate entity. He could not see how the one would affect the other.

DoH needed to regulate the private sector – it had not done so. Until it did so, the private sector would not work properly and would be too expensive. People did not realise that there would not be enough money to fund all health costs for everyone. The NHI would have to lay down a standard – where it stated that up to a certain level, the Fund paid for everything and if there was anything beyond that the Fund could not cover that. It would be complicated to determine where that level was. It would need a big administrative component which would need to continually decide what the NHI Fund could and could not fund. One needed an efficient administrative framework under the NHI. If one did not have that – forget it, do not even try. That was one of the points government had underestimated – the difficulty in setting up an administrative framework that was effective and efficient.

Whether the state would be able to fund NHI was unknown – as nobody knew how much it would cost. If one could not say how much it would cost – how could one determine if the state would be able to fund it? The NHI would likely only be able to cover certain services – other services would have to be covered separately because there would not be enough money. That was a question that nobody could answer.

Medical aid schemes running out of money for users was one of the effects of a lack of DoH regulation. This had been clearly raised by HMI which said in no uncertain terms that the private healthcare sector had become too expensive and the reason was that it was not being regulated properly. The private sector being so expensive was at least partly due to DoH own failings.

On duplicate NHI and private health cover, there was no reason that once one had contributed toward NHI, one could not take out private cover. Why should people be prevented from going to private schemes if they were tax compliant and contributed to the NHI Fund – HSF did not see why there should be an attempt to prohibit that. It was nonsensical.

He said that there was an assumption that once NHI was implemented there would be quality healthcare for everyone. This was a problem. If the NHI funding mechanism was superimposed on a badly functioning healthcare system it would not solve the problems overnight. One could not conflate the NHI principle with the present practical situation on the ground. He appealed to the Committee to raise these concerns with DoH and to ask what was being done about it.

Certain clauses made one question if any meaningful consultation had taken place. Clause 33 stated that once NHI was fully implemented, as determined by the Minister, medical schemes may only offer complementary cover to services not reimbursable by the Fund. This was not logical. If people had paid toward NHI – why should their rights to access private medical cover be limited?

He repeated that HMI had noted that the private sector needed to be regulated properly and it was over to DoH to sort it out. On the statement about healthcare professionals moving to the private sector, he replied that the NHI would prevent this. If one was a health professional working in a badly managed public health entity and one saw more money could be made in the badly regulated private sector with too much money floating about, the attraction was clear. The NHI Bill would not solve the problem. Those problems would remain and needed to be addressed by DoH.

The Chairperson said that the Bill was not suggesting that there would be a ‘perfect’ system the day after NHI was implemented. It spoke about progressive realization. There would be an incremental approach. He encouraged HSF to continue to engage with DoH.

Independent Community Pharmacy Association (ICPA) submission
Mr Kgabo Komape, ICPA Chairman, Mr Mogologolo Phasha, ICPA Director, Mr Nelson Mabusela, President of South African Pharmaceutical Students Federation (SAPSF), Dr Sham Moodley, ICPA Deputy Chair and Ms Jackie Maimin, ICPA CEO, presented to the Committee.

• ICPA supports UHC and the NHI mechanism we hope will achieve it.
• ICPA believes that pharmacists and pharmacies are an essential component of primary health care delivery under a NHI model
• ICPA is a non-profit company which represents one of the largest pools of professionals in the healthcare sector with 1221 pharmacies, about 3500 pharmacists and 20 000 supportive healthcare personnel across metropolitan, urban and rural South Africa.
• All ICPA members are committed to high quality pharmaceutical care and to the restoration and maintenance of the health and well-being of South Africans.
• ICPA, in social solidarity and recognition of the right of all citizens to healthcare, commits all our resources to assist government realise a sustainable and equitable NHI.
• We call on the Committee to expedite the NHI Act promulgation as our patients cannot wait any longer.

Definition of comprehensive healthcare services
• Pharmacists provide comprehensive health care services, as defined in the NHI Bill, through the provision of pharmaceutical care.
• Pharmaceutical care is a patient-centered, outcomes-oriented pharmacy practice that requires the pharmacist to work in concert with the patient and other healthcare providers to promote health, to prevent disease, and to assess, monitor, initiate, and modify medication use to assure that drug therapy is safe and effective. The goal of pharmaceutical care is to optimise the patient's quality of life and achieve positive clinical outcomes, within realistic economic expenditure.

Community pharmacies
• In South Africa, independent community pharmacies are often the first level of contact for health matters as they are trusted as accessible centres of primary healthcare that provide promotive, preventative, curative and rehabilitative services.

• We recommend the inclusion of pharmacist in the definition of primary healthcare.
• As we strive to achieve ONE healthcare system, we recommend the removal of the reference to public health sector and private health sector.

‘primary healthcare’
• means addressing the main health problems in the community through providing promotive, preventive, curative and rehabilitative services and—
• is the first level of contact of individuals, the family and community with the national health system, bringing health care as close as possible to where people live and work, and constitutes the first element of a continuing healthcare process; and
• is represented by primary care health professionals including but not limited to the general practitioner, professional nurse, pharmacist, dentist and allied health professional, through multi-disciplinary practices;

In Clause 11(2)(e):
11. (2) The Fund may enter into a contract for the procurement and supply of specific health care services, medicines, health goods and health related products with an accredited health care service provider, health establishment or supplier, and must—
(e) negotiate the lowest possible price for goods and health care services without compromising the interests of users or violating the provisions of this Act or any other applicable law.

• ICPA would like to add that such negotiation should not compromise the viability and sustainability of independent community pharmacies as these establishments are already heavily regulated by the Single Exit Price of medicines and legislated dispensing fees which leaves them vulnerable to draconian cost cutting measures. Successful NHI implementation needs a wide network of community pharmacies to provide broad and equitable access to the population to ensure a viable pharmaceutical services model.

Chapter 7: Advisory Committees established by Minister
"Benefits Advisory Committee…must consist of persons with technical expertise in medicine, public health, health economics"
• Definition of "medicine" in the NHI Bill is "as defined in section 1 of the Medicines and Related Substances Act, 1965 (Act No. 101 of 1965)".
• ICPA trusts that such expertise includes experts in pharmacy. ICPA assumes that “medicine” pertains to the definition in the Bill and that the “persons with technical expertise in medicine” is a pharmacist or pharmacologist and not a person with a degree in medicine.

Office of Health Products Procurement
38. (3) The Office of Health Products Procurement must—
(a) determine the selection of health-related products to be procured;
(b) develop a national health products list;
• ICPA submits that the selection of health-related products in 38(3)(a) must be done in collaboration with the Contracting Units for Primary Healthcare (CUPS) to ensure that Sub District demographics, disease burden profiles and specific needs are taken into consideration.

Accreditation of service providers
39. (2) To be accredited by the Fund, a health care service provider or health establishment, as the case may be, must—
(a) be in possession of and produce proof of certification by the Office of Health Standards Compliance and proof of registration by a recognized statutory health professional council
• The pharmacy profession is regulated by the South African Pharmacy Council (SAPC) mandated by DoH to ensure quality care and patient safety. This statutory body is responsible for enforcing good pharmacy practice (GPP). Its set of rules is included during the evaluation of pharmacy licence applications. Since this adjudication process is in place, and to prevent duplication of effort, we suggest that the OHSC additional determination be added to the SAPC inspection and OHSC delegate the responsibility to SAPC to improve efficiencies.

Information platform of Fund
40 (2) Health care service providers and health establishments must submit such information as may be prescribed to the Fund, taking into consideration the provisions of the Protection of Personal Information Act, 2013 (Act No. 4 of 2013).
(3) The information in subsection (2) may be used by the Fund to—
(f) determine the payment mechanisms and rates for personal health care services.
• ICPA submits that the payment mechanisms and rates for personal healthcare services must include input from all stakeholders including pharmaceutical sector representatives. This cannot be a unilateral process without such inputs that will inform the Fund on the operational challenges and evolving landscape that must be considered when making decisions.

Definitions of health worker and healthcare provider
• Due to historical professional demarcations pharmacists are often omitted from healthcare provider definitions. The pharmacy has rapidly evolved over the past few decades transforming the old “chemist” to patient-oriented clinical pharmacists who are a highly accessible provider of primary healthcare services. It is critical that pharmacists be included in this definition.

Amend Medicines and Related Substances Act
• ICPA recommends that the Committee amend:
- Section 22A(14)(b) of the Medicines and Related Substances Act to read: “no nurse, pharmacist or a person registered under the Health Professions Act, 1974, or similar Act, other than a medical practitioner or dentist, may prescribe a medicine or scheduled substance unless he or she has been authorised to do so by his or her professional council concerned” as well as:
- Section 22A(17)(a) to read: “authorised prescriber” means a medical practitioner, dentist, veterinarian, practitioner, nurse, pharmacist or other person registered under the Health Professions Act, 1974;
• Pharmacists prescribe unscheduled, Schedule 1 and 2 medicine when treating minor ailments. As seen in other countries with a mature national health service, there is a move to “decant” patients with minor ailments away from overburdened clinics, emergency rooms and the GP down to pharmacy level. SA can “leapfrog” our NHI by taking cognisance of the weaknesses in other systems by including pharmacy as a PHC point of care from the outset.

Mr Sokatsha requested clarity if ICPA was suggesting under the primary healthcare model, pharmacies should be made the first point of call for patients under the NHI. ICPA had explained the importance and relevance of its members. Why was ICPA under the impression that the pharmacy sector was not considered important? Where did the Bill indicate that this category of healthcare professional was ‘trivial?’

Dr Havard asked how ICPA member pharmacies hoped to support and advance the NHI Bill. What proportion of ICPA pharmacies were found in urban metropolitan and rural areas? Did the South African Pharmacy Council not consist of members who had vested interests in the pharmacy profession? She asked this as ICPA suggested that the NHI Bill allow the pharmacy profession to regulate itself rather than the independent OHSC.

Ms Hlengwa said that ICPA complained that the Bill did not fully address concerns about refugees and other foreigners. The NHI would be paid for by South Africans and it was for South Africans. Should the country hold the NHI Bill hostage simply because there were concerns about foreigners? Would this Parliament be acting rationally if it did so?

Dr Jacobs said that the Committee had received submissions from a number of pharmacy associations. He was concerned by the ICPA proposal that the beginning of all patient consultation take place with pharmacists. The Health Professions Council of South Africa (HPCSA) defined the scope of practice of healthcare professionals, their training and the qualifications which put them into particular brackets. He understood that each health profession would want to be mentioned specifically. The personal advancement of particular groups did not sit well with him. ICPA should note that some of its proposed amendments may not relate to the objects of the NHI Bill. Did ICPA want the Medicines and Related Substances Act to be amended to incorporate its proposals? He commended its COVID-19 management service provision proposals. Had they shared their views with those in the private sector?

Mr Munyai asked why ICPA interpreted the Bill as stopping one from employing one's own trade and profession. He referred it to clause 4 of the Bill. Was ICPA concerned about who would pay them, when they consulted with customers or patients that were not covered by clause 4? He noted ICPA’s proposal to include pharmacists in the definition. Some of the proposed amendments may not relate to the objects of the NHI Bill. Did ICPA wish to have the Medicines and Related Substances Act amended to incorporate its proposal? Pharmacies were predominantly in urban areas. That was enough reason to justify the support of NHI as a mechanism to achieve UHC. He suggested that the big pharmaceutical companies tried to influence pharmacies. If this was happening, he requested confirmation of that. It would be unethical.

The Chairperson said that the Committee had received a submission from the South African Pharmacy Council. The South African Pharmacy Council was the overarching regulator for pharmacists in South Africa both in the public and private sectors as well as rural and urban areas.

He asked to understand its role in the fight against antimicrobial resistance, which seemed to be a challenge facing the whole world. The submission noted that ICPA kept track of the extent to which they were prescribing and contributing to health outcomes. Did ICPA have linkages to the district health information systems? Was ICPA familiar with what the South African Pharmacy Council presented to the Committee?

Dr Jacobs referred to payment strategies outlined in its submission. Was ICPA strongly ‘married’ to those proposals being legislated or could they be contained in the regulations? Would ICPA concede that the lowest price possible took into consideration sustainability – service providers needed to be in a position to serve the public. What medico-legal claims had pharmacists faced in the delivery of personal healthcare services – and how did ICPA propose that it should be mitigated under the NHI?

Mr Munyai referred to the proposal that the work of OHSC be delegated to the South African Pharmacy Council to improve efficiency. Had the regulator engaged with OHSC to advance that proposal? Or was ICPA suggesting that this be legislated through the NHI Bill? What medico-legal claim trends had pharmacists faced and how did it propose this be mitigated under NHI?

ICPA response
Mr Mogologolo Phasha, ICPA Director, clarified that in no uncertain terms did ICPA believe that pharmacists were ‘better’ than other health professionals. ICPA was a proponent of not ranking healthcare professionals – health professionals should work in conjunction with one another. ICPA over-emphasised pharmacists as there was a lack of mention of pharmacists in the Bill. ICPA was bringing to the attention of Parliament that pharmacists had been missed out – and if Parliament was aware of this. That was why ICPA had outlined the role of pharmacists in primary healthcare. The ICPA proposed amendments emphasised the need to include pharmacists. ICPA’s intention was to provide more clarity; it was not to suggest that pharmacists could prescribe better.

On refugees, this was not a deal-breaker – NHI did not need to be stopped because of this. ICPA had stated at the start that the country could not wait any longer for NHI – ICPA believed it should be implemented as soon as possible. The OHSC proposal was suggesting that it might be counter-productive to want to have a monitor of a monitor of a particular service. Using OHSC and the Pharmacy Council might be like having two monitors trying to do the same thing. There was a lot of work being done by the regulator. The two bodies could have a Memorandum of Understanding (MoU) so that functions were not duplicated or onerous to the profession.

Dr Sham Moodley, ICPA Deputy Chair, replied about ownership. In 1997 in Parliament, there was a motivation to open ownership to laypersons. The idea was to take community pharmacies to outlying areas. In 2019/20, a few published papers suggested that it had failed. What happened was that the corporate world came in and new licenses were issued to corporates. Existing pharmacies owned by individuals had to close due to the nature of the competition. Therefore ICPA was suggesting that the law needed to be re-evaluated to find out if it needed to be changed and another methodology be found.

On the best possible price, ICPA was in agreement that it should happen. The first thing was the single exit price of medicines – ICPA believed that more could be done to bring down the price of medicines. There was about a 15% margin in the system that could be reduced through better regulations. The regulations were passed in 2004 – they could be reviewed. The other part of the equation was the services that pharmacists provided, which was regulated by the Pricing Committee. That price had gone up to the Constitutional Court and it was decided that the fee needed to be a reasonable fee – that was what the Pricing Committee put out. Corporates were able to offer services at a lower cost – through ownership of the drug supply chain and service. That offered a better price and transformed the market. It moved from a pharmacy market to a corporate market. The pricing regulation was a failure in that it did not take into account all the different elements of pricing that had caused problems in the country.

Ms Jackie Maimin, ICPA CEO, said that ICPA did not see the pharmacy as the only first port of call. Pharmacies worked closely with nurses. Most pharmacies had primary healthcare clinics that were run by professional nurses. The emphasis was that they wanted to be included. There were about 3 500 existing pharmacies that were already the first point of care. These services could be added to the NHI infrastructure. 40% of ICPA members were in rural or under-serviced areas. ICPA had asked to be included in many of the decisions, especially about ‘authorised prescriber’ because it would otherwise limit their existing scope of practice.

On antimicrobial measures , when someone went to the doctor, and they had a cold, they wanted an antibiotic. It was well-established that it was not the right way to deal with colds. Allow those patients to come into the pharmacy and see the nurse. The pharmacist could provide pharmacist-initiated therapy – which was to not use antibiotics for viral infections. Pharmacists could contribute to antimicrobial stewardship through public education on infection control and limiting exposure to antibiotics where they were not necessary. Pharmacists were out there vaccinating; the flu vaccines could be given to reduce secondary infections.

On health outcomes monitoring, pharmacists did not link into the district reporting systems. Part of the different phases of dispensing, in their scope of practice, was to monitor therapeutic outcomes – called ‘treating to target.’ Some chronic patients saw their pharmacist once a month, saw their doctors twice a year and a specialist once a year.

Mr Komape, ICPA Chairman, replied about limiting medico-legal claims. From the pharmacy perspective, its medico-legal claims were lower than other professions in the sector. Pharmacists ensured that records were kept digitally which assisted in this. The industry could contribute to NHI with the current software used for dispensing and monitoring of patients. He offered to share the research papers that Dr Moodley had mentioned on lay-ownership of pharmacies.

Dr Dhlomo asked that any unanswered questions be responded to in writing to the Committee.

Be@root submission
Mr Alan Fowle, Project Manager and Arbitrator at Be@root, presented to the Committee. He opened his submission with a prayer and the submission included video clips.

Integrated systems approach
• Earth – biophysical
• Resources – sustenance
• Health – wellness
• Social- safety and community
• Education – knowledge and skills
• Economy – enterprise and value.

Primary NHI objective
• To achieve universal access to quality health care services in accordance with section 27 of the Constitution for equitable, effective and efficient utilisation of the NHI Fund resources to meet the health needs of the population with strategic purchasing of health care services by the Fund.
• “Primary Health Care’’ means addressing the main health problems in the community through providing promotive, preventive, curative and rehabilitative services and—
(a) Is the first level of contact of individuals, the family and community with the national health system, bringing health care as close as possible to where people live and work, and constitutes the first element of a continuing health care process; and
(b) in the public health sector, it is the clinic, and in the private health sector, it is the general practitioner, primary care nursing professional, primary care dental professional and primary allied health professional, through multi-disciplinary practices;

SA primary health care system must address:
• Crisis in maternal health, gender violence and rights abuse compounded by pandemic, climate impact, food and water scarcity, family safety and security
• Critical role of primary healthcare for women and children as an emergency response to crisis

Community health & wellness perspective: primary health care for communities
• Primary Health Care Service provides safer immediate and community on-site options to provide compassionate and appropriate level of care instead of referring to secondary levels.
• Create a safer healthcare system centred around natural birthing process for mothers and babies in South Africa that will support the health of communities;
• It is here at the community interface that traditional and support health practitioners work and can make significant impact to create a responsive safer healthcare system centred around natural birthing process for mothers and babies that will support the health of their communities

Maternal care concern: caesarean section rate challenges
• preventing unnecessary caesareans for first birth which impacts a mother's childbearing and the child for the rest of her life.
• provide statistically proven safer, less invasive birthing experience for mothers and babies;
• reduce significantly South Africa statistics as one of the highest caesarean rates in the world;
• reduce in-patient impacts on resources and costs for second tier facilities

Nursing profession and care systemic challenges
• Incontestable evidence of a lack of adequate maternal care in system as a result of a systems and protocols breakdown and a lack of compassionate care.
• Current nursing systems education in maternal support training requires comprehensive review and capacity building.
• Levels of education and ability of all healthcare providers: regulation, accreditation and certification process envisaged in the NHI Bill takes into account community health support services such as midwives and traditional birth attendants (TBA), healers and traditional practices where certain healing takes place.

Challenges: maternal health
• Low level of primary conception-to-post-birth support to women and families
• Limited/no counselling support
• Limited/no education of mothers and families
• No nutrition/sexual health/disease management advice
• Late health assessment means slow/none/late risk assessment referrals
In clinical birth:
• Low risk stressful birth experience
• Emotional and sexual abuse
• Nutrition /sexual health/disease management
• Timeous referral
• Community sustainability impact

The case for community midwives and TBAs
• Midwifery is a well-established, well-respected health profession, midwives far outnumber obstetricians, and midwifery and medicine are distinct professions, inherently complementary, and based on overlapping but distinct bodies of knowledge.
• Midwifery is primary health care for women.
• International best practice for women and children.
• World shortage of midwives (WHO) is 900 000

Recommended outcomes
• The Committee and DoH consider the South African Registry of Community Midwives (SARCM) primary health care (PHC) midwives programme for the NHI
• A review of natural medicine practices and traditional practices applying to our population be undertaken to give insight to the needs of mother and babies and their communities
• Insight to the needs of mother and babies about the necessity of caesarean sections
• Accreditation of community healthcare practitioners be reviewed to provide localised registered community midwives/TBAs to provide critical services and limit the need for transfer and referral.
• Integrated strategies for capacity building of care providers

Dr S Thembekwayo (EFF) requested clarity about the alternative/traditional methods such as the use of rooibos tea. How should the Committee use the submission to guide amendments to the NHI Bill? No specific proposals were made about the clauses in the NHI Bill.

Ms Hlengwa said that Be@root had noted that nurses were not properly motivated to provide the best patient care. Was this an issue that should be addressed by the NHI Bill? If it could be addressed before NHI implementation, what was Be@root’s suggestion or proposal on that?

Ms Gela said that Be@root was advocating for the reinstatement of community midwives and the conduct a comprehensive review of the current nursing system and education in maternal support training. She asked if the South African Nursing Council and the Chief Nursing Officer had been consulted about that proposal? Did Be@root make comments on the recently revised Human Resource strategy?

Dr Jacobs appreciated the mention of the old practices where children were delivered at home with midwives. Those deliveries involved limited complications and the burden on the hospital system was much less. He did not know the current situation – were there still home-based midwifery services or traditional birth attendants? The submission and video clips had noted the lack of adequate maternal care comparatively across areas. Was Be@root suggesting that the country should go back to midwives providing maternal and women healthcare services in communities? He suggested the proposed amendment of the Act be communicated directly to DoH.

Poor women in hard-to-reach areas , were less likely to receive healthcare and they carried the burden of maternal and perinatal mortality and complications of childbirth. Did Be@root propose that the community midwives should be practicing in independent practices or that this category be included in public sector facilities, including municipal clinics? What would be the control mechanism to ensure there was accountability in home deliveries and community clinic settings? What were the risks associated with this programme, especially medico-legal risks? This could be a complementary service that could be offered depending on the level of expertise, especially in low resource settings.

Dr Havard asked how Be@root proposed that the primary healthcare midwifery programme be reimbursed under NHI. She asked Be@root to share the reimbursement strategy deployed in the UK, which was given as an example in the submission.

Mr Munyai asked if the people in the videos had given their consent to be shown. It looked like some people were trying to run away from being captured on the footage. There was no video of the person who returned from the UK. He supported an integrated planning approach and its incorporation of community and primary healthcare interventions to reduce pressure on higher levels of care. Did Be@root support the objects of the NHI Bill? Were there aspects of the Bill that it proposed that the Committee should strengthen?

Mr Sokatsha said the Be@root focus on child and maternal healthcare and the need to prioritise them was greatly appreciated. The same approach was known to be successful in health status improvement of countries such as Japan in introducing their UHC programme.

How should the Bill be amended to accommodate the proposals made in the submission? Had the same impact assessment results been presented to DoH? The issues raised in the submission were the real experiences of people on the ground. Did the impact assessment results reveal anything worth retaining in the NHI health system? Were there standards and guidelines for midwives to enhance clause 31(3) of the Bill?

The Chairperson asked for more information about the training of traditional birth attendants and if there was a way of regulating them after training had taken place. Was this programme regulated by the Nursing Council? Be@root made mention of institutionalising midwifery as it had the capacity to reduce the caesarean section rate. From its local and international experience, by what percentage did it anticipate the rate being reduced? There was a basic and advanced midwifery programme – how did community midwifery fit into that?

Mr Alan Fowle offered to package the clips and additional documents in a pack that could be shared with the Committee. There were allopathic and natural medicines which could play a significant role. This had been shown by many studies at universities, laboratories and anecdotal evidence from communities. There were not just natural or support medicines, there were techniques used by community midwives that were vitally important.

The NHI Bill was a framework for medical support for the most vulnerable of communities. The whole system he had highlighted in the graph needed to be looked at – in educating and mitigating risks. What he had outlined was based on low-risk women. The caesarean section rate could be reduced to 15 to 20%, according to WHO, via interventions. Only high-risk patients should get referred. This was what the Bill needed to use to ensure its service providers were providing the right level of service.

Over many years, problems had become systemic in the care system in South Africa. This was echoed across communities and none more so than mothers with experiences where compassionate care did not exist in formal hospital environments. The gap in service and support of birthing mothers was profound – there was enough evidence – and a whole submission could be done on that.

The Green Bar Programme was the interface of community, where midwives were known to ride on their bicycles in communities. The systems put in place for the last 27 years had moved the country away from that to allopathic approaches. The Nursing Council and Chief Nursing Officer needed to be prompted to engage with the structure that could talk their language and could hold these kind of conversations. There was something wrong in the system if there was a 90% caesarean section rate in the private sector just to ensure they covered costs. Midwifery needed to move to being a profession on its own – not a nurse's job. A nurse midwife was someone who graduated. Nurse midwives became midwives after 15 births. Traditional midwives did 100 to 200 births and none of their experience was regulated or checked. This was a vital aspect to put in structures to provide proper risk-free referral systems.

The environment around birthing needed to change – hospital births often did not provide a nurturing space – particularly given the prevalence of gender based violence. If there were midwife units as envisaged in the submission – those were self-funded and supported the system. The one in Pietermaritzburg had the capacity to deal with low-risk babies in a nurturing situation with all the advice that could go with family care. Education of men could take place in such situations.

The functionality of these systems needed to be looked at and improved. Legislation needed to be looked at. Skills development needed to take place. One women had trained for ten years under the Nursing Council community midwife programme – in ten years she was unable to get any recognition for her skills. Those were the things that needed to be looked at – job creation and risk management. Home-based midwifery services had been broken down and were unsupported. The move toward standard medical approaches had marginalised them. There was a wealth of knowledge and cross-sharing that could take place and help communities right across the board.

The reintroduction of this system had been taken up by a group of midwives who wanted to support the Nursing Council training system – which needed support on many things. Maternal care was lacking in some of the formal hospitals – although there were some wonderful caring nurses. There were also a lot of gaps in learning. These midwives only practiced in communities. They were the first port of call in the referral system – where high-risk women or women with complications had to be referred onward. They practiced in midwife operating units, which were semi-clinical settings and in low-risk areas they supported people to birth where they could with their families around them. The regulatory body, South African Registry of Community Midwives, which was in the process of being formed, needed to work together with the current systems in supporting communities.

Be@root supported the objectives of the NHI Bill on condition that the community’s needs were served and evidence-based practice and best practice were applied in maternal health. There were aspects of the Bill that needed to be strengthened and reviewed.

Be@root was established in late 1994 and had built a structure and put in place a system. From 2005 their planning systems were introduced in the Eastern Cape, working with traditional healers on HIV/AIDS mitigation. Be@root worked in six areas of the community – community health being one of them. Be@root focused on child health and maternal issues because that by far had the greatest effect of helping mothers dealing with gender inequity, violence and a lack of familial support. These aspects had a direct impact on children. It was an emergency response that was being proposed.

There were aspects of the health system that were worth retaining, which included some of the legislation. Some of the midwives were certified and had trained overseas – some of them were trained through the Nursing Council. There were issues around assessment and registration and how training should/could take place and be passed on amongst midwives. There were structures in place that had been looked at by the Community Midwives Association – they were looking at different levels – for instance traditional birth attendants. Those levels needed to be assessed and become part of the process. Transfer into hospitals should not be more than 30%.

Mr Alan Fowle closed his submission with a prayer.

Rare Diseases South Africa (RDSA) submission
Dr Helen Malherbe, RDSA Director of Research and Epidemiology, and Ms Kelly du Plessis, RDSA CEO and Lead Patient Advocate, presented.

• RDSA is committed to the improvement of healthcare systems in South Africa and eager to find solutions to better meet the needs and ensure the care of the South Africans who are impacted by rare diseases and congenital disorders.
• RDSA has always been committed to engaging with stakeholders, including NDoH to find solutions to healthcare access for the rare disease and congenital disorder community.
• The complex nature of rare diseases, coupled with limited access to treatment and services, means family members are often the primary source of solidarity, support and care for loved ones.

Estimated 3.7 million South Africans are impacted by rare diseases based on modelled data. 80% of rare diseases are genetic. 50% of people affected by rare diseases are children
Concerns identified about HNI Bill:
• Not clear where rare diseases will receive funding.
• Clarity on how NHI will be funded.
• Prioritization of those most in need – need clarity whether rare diseases are included.
• Definition of quality health services is unclear.
• Discretion of the Benefits Advisory Committee.
• Multi disciplinary, comprehensive and high-cost services may not be included.
• Diagnostic Services – how will lack of current services and infrastructure be addressed.
• Prescribed Minimum Benefit (PMB) – will existing diseases be removed / have less coverage?
• Progressive realisation – not providing treatment / services for rare diseases / congenital disorders is a violation of human rights.
• Congenital disorders and most rare diseases are a non-communicable disease (NCD).
• Represent significant burden of disease.
• Data deficit for rare diseases / congenital disorders.
• Surveillance and monitoring underreporting by >90%
• Essential Drug List/access to appropriate medication.
• The inclusion of civil society and health service users in all decisions and processes.
• Governance under NHI.
• Emergency Medical Services.
• Transparency.
• Financing NHI.
• Competition law and the NHI.
• Implementation of the HMI recommendations in the interests of NHI.

How can we claim to have achieved Universal Health Care, or health equity for all, when we knowingly exclude marginalised and vulnerable patients such as rare disease patients, ultimately leaving them behind?

Mr Sokatsha said Rare Diseases SA said it was in discussions with DoH on policies about rare diseases. What bottlenecks had RDSA identified in their engagements with the Department and what was it advocating for?

Ms Gela said Rare Diseases SA indicated it had a membership base of 5 000 people. At a global level there were over 70 000 diagnostic categories and that South Africa had 3.7 million persons impacted by rare diseases. How many diagnostic categories were there in South Africa? Were there organised professional and clinical associations that had developed guidelines and protocols to manage rare diseases?

Ms Hlengwa said that the submission was an eye-opener. The Committee needed more time with the submission. What was the annual cost of providing medical care to persons with rare diseases in South Africa? What was Rare Diseases SA’s suggestion to address this problem under NHI? Were there any prevention measures for these diseases?

Mr Munyai said that Rare Diseases SA seemed to be interested in specific rare diseases, such as congenital diseases, instead of all the diseases that fell into the broad spectrum of ‘rare diseases.’ Was it suggesting that under NHI certain rare diseases needed to be prioritised over others? What was the reach of Rare Diseases SA for poor, uninsured and rural groups?

Dr Jacobs said that the submission highlighted that every person was important. The four criteria mentioned were extremely important – such as access rights, equity and fair outcome. That should be applicable for every person anywhere in the world. He appreciated Rare Diseases SA’s contributions. Such rare diseases contributed to the infant mortality rates. He was concerned about the fact that it seemed that Rare Diseases SA was saying that the NHI Bill was destined to exclude rare diseases from the package of services. He was not aware that it was mentioned anywhere in the Bill. Was Rare Diseases SA basing this on their current experiences of rare diseases? Or did the submission seek to highlight challenges faced by people suffering from rare diseases? What was Rare Diseases SA’s proposal to the Committee – to acknowledge the plight faced by those who fell in that group of patients?

Dr Havard said that her question had been covered. What was the reach of Rare Diseases SA to service rural, poor and uninsured populations? What was the coverage and access for those populations?

The Chairperson noted that Rare Diseases SA had suggested that there was a need for ring-fenced funding for the management of rare diseases. Did it know of international examples of UHC countries that had gone this way? Some of the challenges it raised were daily occurrences – such as primary diabetes which could be congenital that would need the support of a dietician, counsellors etc. Some of the things did not need to wait for NHI to be implemented. Those should be attended to going forward as part of the health system. Had Rare Diseases SA engaged any other sector, DoH, or people with disabilities about services earmarked for them? Was this its first time engaging? The Committee mainly conducted oversight and did not deal with the provision of services.

Rare Diseases SA response
Ms Kelly du Plessis replied that Rare Diseases SA was in discussions with DoH and was involved in re-writing existing guidelines and protocols and it was always available to assist and advocate to the best of its ability. From a National Department perspective, there was a lack of urgency about rare diseases. There was a sense that the problem was almost too big and ‘where would one even start.’ There was good legislation in the country; the issue came down to accountability. The implementation of legislation was where the country was falling short. If patients understood the legislation and referral pathways they would be able to advocate a lot better. Very little had been done about rare diseases since 2001 from a national perspective.

Rare Diseases SA saw just under 650 prominent conditions occurring regularly. 10 to 15 cases were considered to be a ‘large amount’ when it came to rare diseases. There were outlying conditions, where there might only be one patient identified in the country. Where there were commercial treatments available, such as a molecule or product, it got registered through SAHPRA and was brought into the country. This in itself was a significant challenge. There was a desire, and there were the healthcare professionals available, to write up those protocols. The problem came in where the number of users was so low that it did not get the urgency required. It was much easier to treat those patients on a patient by patient basis than to take the time out to write protocols. There were guidelines and protocols in place for some of the diseases and those might be funded in the state sector. There was limited funding of these diseases generally though. There was limited data about the cost of providing care. Rare Diseases SA was not being included in surveillance.

There was under-reporting of congenital disorders of approximately 98% according to a paper published in 2016. As a result the necessary data was not available. There was no way to track expenditure due to this. From an International Classification of Diseases (ICD) and coding perspective in the private sector, one needed a confirmation of diagnosis to be able to pull up a list and associated costs. Due to the diagnostic services being so low, as well as the lack of genetic infrastructure and counselling, those patients were simply told that they had something rare, but they had not established what it was. Due to not having a confirmed diagnosis and ICD code – it was difficult to understand or allocate the costs involved. Rare Diseases SA had worked closely with the Council for Medical Schemes and they were looking at avenues through rare disease initiatives to alleviate that so that they could get some data together – even if it was just from the private sector – because they were set up and resources were easily available to track that.

Knowledge was very important in the genetic counselling process on how the child or patient was impacted and born with that particular condition. Parents and family members had the opportunity to take the necessary measures to assist with family planning under a consent and knowledge based approach. Rare Diseases SA had seen cases of a family where three children were born with the same condition, as a result of that knowledge gap. Prevention of disease was possible but it required a fair amount of counselling and input from the professional side.

Rare Diseases SA did not want to prioritise certain diseases - it was asking for the inclusion of rare diseases in their entirety. However, there was the perception in the healthcare system that because a rare condition might not have a commercial molecule available for it - that nothing could be done – that was what Rare Diseases SA wanted to change. There was always something that could be done to improve the life of a patient – if it be improved pain medication or improved counselling and mental health support. When there was no dedicated treatment plan – those patients were lost for follow-up. That was what it was trying to address.

The reach of Rare Diseases SA was low in the rural areas. It had started and was implemented largely in a technological space using access to digital media to raise awareness about the organisation. However, they were strengthening their relationships with tertiary hospitals to try and improve service delivery to that percentage of the population. The referral upstream to tertiary centres did not happen very often in the rural areas. As a result, those patients were not appropriately identified. That was why genetic counselling and services was vital. Even if a community healthcare worker or community nurse had the ability to simply identify that there was a problem and know what the referral process was for those patients, it would allow for improved outcomes for those who were otherwise lost to the system.

The NHI Bill did not specifically exclude rare diseases but did not specifically include them either. In the current system, access to rare disease treatments and supportive care was not a certainty. Every single patient was treated on a patient by patient basis. With almost every condition, Rare Diseases SA had to make specific applications to a provincial government to fund patients. Their assumptions and assessments were based on their personal experiences. This was not something that was better in the private sector. The private sector decision-making ability about Prescribed Minimum Benefits was largely based on what was available in the state sector. It was not a case of the private sector getting more – patients sometimes got more physiotherapy and supportive care. In accessing lifesaving treatments, the access was not good enough in either sector.

Rare Diseases SA was proposing the recognition of rare diseases be acknowledged in the NHI context and ensure and give certainty to its inclusion. They knew they would not solve the world’s problems in one piece of legislation but they had to start somewhere. Rare Diseases SA’s second proposal was to assist in bringing together the necessary awareness about rare conditions to ensure that improved data could be sourced, understanding where the patients were and what their needs were. The need for ring-fencing was seen in the international space. The National Institute for Health and Care Excellence (NICE) in the UK was where specific conditions were put on a list and were evaluated based on value. If one had a condition where that particular product was necessary – it came from a specific budget. That would be an ideal scenario. A risk equalisation fund would also be ideal. There needed to be a definition in place before that was implemented. It could not be said that there was a box of funding without understanding who would benefit from the box. The problem was that without a defined legislated definition there would be no way for them to determine who and what. What services would be included, would it only be for molecules and drugs or would it include everything from diagnostics to supportive care? These things would obviously change the budget. Rare Diseases SA would like to see a set budget and exit and entry criteria to ensure access for patients.

Multi-systemic care was definitely important – it required a multi-disciplinary approach. This was why it was so important to have the improved referral system in place and defined treatment available. Currently, there was nothing that could be done for that patient – which made it very difficult. One needed to know what a patient had, to treat them appropriately. The current diagnostic and genetic services did not support that. Diagnostics needed to be improved as a starting point.

Dr Helen Malherbe replied that 80% of rare diseases were congenital disorders. That meant that a child was born with an abnormality in structure or function that was present from birth. In genetic services there was primary care, which prevented pregnancy. There was secondary prevention, which was the prevention of affected births and there was tertiary prevention or care which was the early diagnosis and intervention of affected births. Care was the absolute and prevention was the ideal. Pre-natal diagnosis was available but limited in South Africa. There was no newborn screening available in the public sector at all.

In other countries they screened 50 or 60 conditions that significantly helped reduce the burden of disease. In South Africa there was an issue with antenatal care. While the number of first antenatal care visits had increased – there was still about 30% that occurred after 20 weeks gestation. There were some accessing scans. There were not enough skilled ultrasonographers to provide in-depth and high resolution scans required to identify early on rare diseases in pregnancy. This then left it late for the option of termination of pregnancy. Since the country had instituted fortification of folate in stable crops, which became law in 2000s, there was a 30% drop in neural tube defects. That showed such a significant impact for widespread preventative measures. One needed to look at such opportunities in primary, secondary and tertiary prevention to see a further drop.

Rare Diseases SA did not know what it cost to treat a rare disease patient. At the moment, there were a lot of patients who were not diagnosed – so they did not know what care was required. Rare Diseases SA had focused on quantifying the burden of disease. The next step would be to cost specific components. That was a huge job that would take a significant amount of time to do.

Closing remarks
The Chairperson hoped that Rare Diseases SA would remain advocates for rare diseases in the country. He suggested they engage with other bodies and continue knocking at the NDoH door. People focused on diseases that were apparent. The submission was an eye-opener to the Committee, and they would consider it when processing the NHI Bill.

Ms S Gwarube (DA) said there were urgent matters the Committee needed to attend to. One of these was the Special Investigating Unit (SIU) engagement it had wanted to have on the Digital Vibes report. She proposed that this needed to be scheduled quite quickly.

The Chairperson said that he was to have a meeting with the House Chairperson that afternoon on that. The SIU Report was commissioned by the President. He needed to find out if the Committee could look at it.

The meeting was adjourned.

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