Who should be the new head of UNAIDS?

Earlier this week it was reported that a short list of five people is still in the running for the Joint United Nations Programme on HIV/AIDS (UNAIDS) top job. They are South African Professor Salim Abdool Karim, Winnie Byanyima, Professor Chris Beyrer, Dr Bernard Haufiku, and Dr Sani Aliyu.

The appointment of a new Executive Director comes at a difficult time for UNAIDS. In December last year an independent inquiry was deeply critical of leadership at the UN agency, and particularly of the way in which allegations of sexual harassment was handled. As a result, the previous head of UNAIDS Michel Sidibé had to step down. Currently Gunilla Carlsson is acting in the role.

Questions have also increasingly been asked about whether we still need a UN agency focussed on HIV and AIDS. Spotlight previously reported on alleged covert plans to collapse the agency into the World Health Organisation. Whatever may or may not have become of those plans, real questions can and should be asked about what role UNAIDS should play in future, if any. The answer to this question should then inform the choice of the Executive Director, UNAIDS’ third one (excluding the acting ED). Professor Peter Piot was the first UNAIDS Executive Director, followed by Sidibé.

At a most fundamental level, UNAIDS should be an internationalist entity aimed at ensuring that HIV is eliminated as a public health threat as soon as possible. This implies a role in coordination, fundraising and diplomacy, but maybe most fundamentally in the framing of the global AIDS response.

One of the biggest blunders of the Sidibé years was the premature rhetoric about the “end of AIDS” – at a time when even UNAIDS’s own modelling suggested that we were not nearly on a trajectory to end AIDS by 2030. It seems plausible that the over-optimistic rhetoric contributed to a sense of complacency and a general perception that HIV no longer requires urgent action. The “end of AIDS” rhetoric was eventually scaled down, but not before significant damage was done.

One of the most important tasks for the new UNAIDS Executive Director would be to reframe the discourse on AIDS. This does not mean we need new spin – it means that we need a new sense of realism and seriousness. It means building a new narrative around AIDS that is firmly rooted in scientific evidence, human rights, and common decency and understanding. This will require an Executive Director who knows and understands both the dynamics of the epidemic and that of the AIDS community.

At last year’s international AIDS conference in Amsterdam much was said about what it would take to reinvigorate AIDS activism, something most seem to agree is needed. One lesson from the global AIDS response around the turn of the century is that doctors, researchers, lawyers and policymakers were all part of the AIDS movement. UNAIDS itself started as a uniquely activist UN agency – but over the years the urgency and animation has waned. For UNAIDS to justify its continued existence, as opposed to being collapsed into the WHO, it has to again become an activist agency.

Ideally, the new UNAIDS Executive Director will be someone who can bring the urgency and shared sense of activism back to the HIV response. While it is easy for candidates to say they will do this – actually doing it is another matter. While the head of UNAIDS has to be politically astute, he or she also has to be willing to step on toes when needed and to once again make HIV and AIDS a political crisis (it never stopped being a humanitarian crisis).

The new Executive Director would also have to address the very serious leadership and organisational culture problems identified in the inquiry into how allegations of sexual harassment were handled at the agency. It should go without saying that UNAIDS needs to ensure that all UNAIDS employees can safely report sexual harassment and have their allegations properly and fairly investigated by people who are independent and impartial. Given the links between gender-based violence and HIV, UNAIDS should be setting the example in this regard.

We are not in a position to definitively say which of the five candidates best meet the above criteria – and being based in South Africa we obviously know Karim better than we know the other candidates. That said, we have asked various experts and members of the AIDS community from around the world about their views on the five candidates. We have by no means conducted a scientific  survey, but we have at least some sense of sentiment in the AIDS community. With those caveats out of the way, here are some observations on the five candidates:

  • Winnie Byanyima, an aeronautical engineer, diplomat, freedom fighter and human rights activist, is currently heading up Oxfam and worked previously with the United Nations Development Programme. She  is the only woman on the short list. She handled sexual harassment allegations at Oxfam much better than Sidibé did at UNAIDS. She has no high-level experience in HIV, and is not that well-known in the AIDS world, especially among researchers and scientists. She could potentially be a hard sell to some in the AIDS world, but is a popular choice among activists who feels she is just the person for the job – and in the current atmosphere that makes her a front-runner alongside Karim.
  • Professor Salim Abdool Karim is internationally recognised to be a leading HIV researcher and clearly knows the epidemic and the HIV community well. Less well known is the role he played in strengthening and dramatically increasing funding for the South African Medical Research Council when he headed it from 2012 to 2014. Karim does not specifically have a human rights or gender record, but much of the research conducted at CAPRISA, the research organisation he heads in KwaZulu-Natal, is aimed at finding ways to help young women stay HIV negative. Based on the various conversations we’ve had, he seems to be one of the front-runners for the position.
  • Professor Chris Beyrer comes with excellent HIV pedigree having previously headed up the International AIDS Society and he has both a strong biomedical and human rights background. He is a Professor of Epidemiology and like Karim, he knows and understands the HIV epidemic and AIDS community very well. Beyrer is openly gay, well-liked among most people we spoke to – but fairly or unfairly (unfairly in our view) it will probably count against him that he is North American (he was born in Switzerland to American parents, but grew up in the US). Had it not been for that, his chances would have been very good.
  • Dr Bernard Haufiku, a medical doctor, is a former Minister of Health and Social Services of Namibia. He is currently the health advisor to Namibia’s deputy president. He does not have the international HIV experience and profile that Karim and Beyrer has, but is well-spoken of by those who know him. They specifically mention his record in promoting human rights and is viewed as someone who understands the need for a community-led response to HIV. His lack of experience on an international platform makes him an outsider for the position.
  • Dr Sani Aliyu, a medical doctor and microbiologist, is the director general of Nigeria’s National Agency for the Control of AIDS (NACA). NACA is the country’s agency which leads and co-ordinates the response to HIV. There are estimated to be about 1,9-million people living with HIV in Nigeria. The epidemic is most prevalent among women in Nigeria. Like Bernard Haufiku, he is an outsider for the UNAIDS top job given his relative lack of international HIV experience and his limited profile in the AIDS world.

 

Limpopo to release health workers despite massive shortages

Whistle blowers have alerted the Rural Health Advocacy Project to a decision by Limpopo’s Health Department (LDoH) to release provincial bursary holders from their contractual obligations. RHAP has in its possession a letter circulated to health professionals inviting them to a meeting to discuss the decision which will affect approximately 540 health professionals who have received funding from LDoH. The affected health professionals include medical doctors, professional nurses, pharmacists and allied health professionals (occupational therapists, physiotherapists, speech therapists and audiologists.)

The decision to release the bursary holders from their Bursary Contractual Service Obligations will have severe implications on health service delivery and does not ensure the protection of the core right to health. It will ensure that the reported ratios of 10 pharmacists per 100,000 people will not improve nor will the 3 physiotherapists and occupational therapists, respectively, per 100,000 people, thus underservicing the population in Limpopo and failing to progressively realise the right of access to health care services.

The LDoH has under half (47% – 33,848 of the 63,460 posts) of the personnel it requires to function effectively. To fix the broken provincial health system, LDoH developed a Recruitment and Development Strategy (“Strategy”) to formalise the bursary scheme and ensure that it can attract and retain health professionals. The Strategy is also intended to address some of the factors that result in the high attrition rate, these include a lack of opportunities for career-pathing, inadequate infrastructure, inadequate and non-functional equipment as well as poor working conditions.

It is therefore counter-productive that the LDoH, which has historically suffered from low healthcare worker figures would opt to let go of 540 health professionals whose services are obviously needed. Typical rhetoric would lay blame on the economic recession and austerity measures taken by state departments. However, we should be wary of austerity being the catch-all net for all decisions that fail to meet the Constitutional standard envisioned in section 27 of the Constitution. The International Covenant on Economic, Social and Cultural Rights (ICESCR) to which South Africa is a signatory is explicit when it comes to austerity. It cites the implementation of austerity measures may only be justified when a) less restrictive measures have been exhausted, b) austerity measures must be temporary and that any other course of action would be more detrimental to the realisation of rights and that c) they cannot be intentionally or unintentionally discriminatory, amongst others.

In late 2018, President Ramaphosa released a Stimulus Package for Health. This constituted a significant boost of 5300 posts (clinical and support staff) into the public health system distributed across all 9 provinces. The LDoH, in particular, received 227 medical officer posts (for post-community service doctors), 68 pharmacist posts, 309 professional nurses’ posts and 57 allied health professional posts. A total complement of 701 new posts were funded, in addition to the number already budgeted for by the LDoH. It is curious that a decision to forego the services of 540 health professionals be implemented with such haste. Surely, the lack of available funding was anticipated earlier in the year. If so, a large portion of the 701 new posts could be used to offset the 540 posts that will be lost. There has been no information on how many of the posts created by the Stimulus Package have been filled.

We are also unsure how the LDoH intends to staff the state-of-the-art central level hospital whilst failing to adequately implement its Strategy and retain 540 skilled and willing health professionals whose studies the LDoH has already funded. The current state of Primary Health Centres (PHC) and district level hospitals also leaves much to be desired and it does not seem that this decision will improve services at these facilities.

Only 25% of Limpopo’s clinics meet ideal clinic status, the second lowest of all provinces, competing for last place with the Eastern Cape; another predominantly rural province. Spending by LDoH shows a strong focus towards district hospitals. Consequently, it would appear that the bulk of health services are provided at this level. Over the 2017/18 period, 51.3% of District Health Services was spent on district hospitals. However, this contrasts starkly with the investment in PHC services with Limpopo being the lowest spender in the country. Over the 2017/18 period, per capita spending on PHC was R352, which is almost R100 less than the national average. And therefore, incongruent decision making and spending is not isolated solely to the 540 health professionals who are soon to lose their jobs but rather is characteristic of Limpopo Department of Health. The investment in the studies of 540 health professionals to improve health services in Limpopo will be lost to other provinces or the private sector.

Due consideration must be given to the inherent challenges that rural provinces, such as Limpopo, face. The government must take into account factors such as low population numbers that are spread across large areas and resultant diseconomies of scale which make providing services to these provinces more expensive, and budget accordingly. The users of the healthcare system will bear the brunt of the loss of personnel most and the figures reported by LDoH will not allow for increased access to health care services.

There is contradicting information on the number of posts in LDoH and the number which has been filled and how many remain vacant. There has been no explanation as to how the LDoH funds bursary holders but fails to ensure that there is funding for their posts in order for them to continue working once after their community service. There are also no reports on the progress in implementing the Strategy.

As a coalition of social justice organisations committed to the protection and advancement of socio-economic rights, we appeal to:

  • the Minister of Health to support the development of costed provincial Human Resources for Health plans that consider the varied implementation contexts in different provinces;
  • the Minister of Finance to consider rural adjustments starting with HRH to be included in Equitable Share Formulas;
  • the Premier of Limpopo to amend the framework that informs how the province distributes its unconditional provincial equitable share allocation in order to increase the portions dedicated to health and education.
  • the MEC for Health and the administrative heads of health to work together to ensure that the decision to release bursary holders is reversed in order to fulfil their Constitutional obligations of ensuring access to health care services so that the wellbeing of the people of Limpopo is placed at the centre of all decisions.

This open letter has been endorsed by the following social justice organisations:

RHAP, SECTION27, the Treatment Action Campaign, People’s Health Movement, Rural Rehab South Africa, Rural Doctors Association of South Africa, Institute for Economic Justice.

KZN’s HIV and TB plan: Good on structure, low on detail

The National Strategic Plan (NSP) for HIV, TB and STIs 2017 – 2022 is supposed to guide South Africa’s response to HIV and TB. While this national plan sets out broad targets and strategies, the implementation of this plan depends on provinces. To this end, each province had to develop a provincial NSP implementation plan (PIP). KwaZulu-Natal’s (KZN) PIP is called the Multi-Sectoral Response Plan for HIV, TB and STIs for KwaZulu- Natal Province 2017-2022 – but in this article we will refer to it just as the KZN PIP.

Broadly speaking, the KZN PIP’s engagement with the governance and consultative structures required to implement a plan like this is refreshingly realistic and shows an awareness of the very real risk that PIPs can become inconsequential processes parallel to existing government planning processes. The plan also does a good job of using data to define the particular problems in the province and flagging, in general terms, the kind of interventions that are required. Unfortunately, the KZN PIP is very low on detail when it comes to implementation – which is deeply disappointing in an implementation plan.

Some context

KZN is at the epicentre of South Africa’s HIV epidemic, if not the world’s. Annual AIDS deaths in the province peaked at 87 000 in 2005 and fell to around 17 000 in 2017. In 2019 there was probably around 15 000 deaths, although there is significant uncertainty regarding the 2019 figures. The decline in AIDS deaths in the province is driven largely by the provision of antiretroviral therapy – in 2005 there were 27 000 people on treatment in the province, today there is around 1.4 million.

One major concern however, is that growth of the HIV treatment programme in the province has slowed significantly in recent years. In 2014 around 230 000 people in the province were newly started on treatment. That number has dropped every year since and is now estimated to be under 100 000.

While AIDS deaths have declined dramatically, the rate of new HIV infections remains stubbornly high in the province. While the estimated 61 500 new infections in 2017 is much better than the 160 000 per year seen around the turn of the century, it is nevertheless high and means that the absolute number of people living with HIV keeps going up. Just over a third of the new infections in 2017 (around 21 000) were in women and girls aged 15 to 24. Around two million people in the province are living with HIV.

The KZN PIP

Probably the most important target in the KZN PIP is to reduce new HIV infections to below 20 000 by 2022 – roughly a third of 2017 levels. Modelling suggests that this very ambitious target will not be met and that by 2022 levels would still be in the high 40 000s. According to the PIP “interventions revolve around expanded and intensified provision of biomedical services, sexual and reproductive health and the provision of pre-exposure prophylaxis to high risk groups.”

While specific mention of PrEP is welcome, the PIP rather confusingly says that PrEP should be provided “as part of a prevention package for the general population and key population groups e.g. sex workers” and elsewhere it refers to providing PrEP to “high risk groups”. Who exactly should be offered PrEP is never made much clearer than this. The plan does not specifically set out to provide PrEP to women and girls aged 15 – 24, as one might expect given the high infection rate in this group. It also doesn’t set any concrete targets or make any meaningful commitments regarding PrEP.

Some might argue about the cost effectiveness of PrEP, but even if the cost-effectiveness case is not as strong as that for say medical male circumcision, one could argue that the state has an obligation to nevertheless provide young women and girls at very high risk of contracting HIV with the means to protect themselves. Either way, if ambitious PrEP targets were rejected based on cost-effectiveness grounds, then the PIP should state that explicitly.

Given the high rate of infection in young women and girls, one would also expect a strong focus on the promotion of safe sex and condom use. As is recognised in the PIP: “While the province achieved its condom distribution targets, these were not adequate when calculated at number of condoms per eligible male.” One would expect such an admission to result in ambitious new condom distribution targets. Maybe more importantly, given the high rates of HIV in young women and girls, one would expect an unequivocal commitment to making condoms available at schools. Yet, while the PIP does not prohibit it, it certainly does not make a strong case for increased condom distribution or making condoms available in schools.

DREAMS and various specific interventions are mentioned, but unfortunately the KZN PIP does not break any new ground in plotting how the province will address HIV infection in young women and girls.

Touches on key issues

Though lacking in detailed planning and concrete commitments, the KZN PIP does nevertheless touch on a lot of the key interventions required at this stage of South Africa’s response to HIV and TB and provides useful district by district breakdowns of some key indicators. It is to be welcomed, for example, that HIV self-testing and same day initiation are both endorsed. With some help and guidance from national or the province, these are issues that districts can run with.

While increased testing is relatively easy to do, many other interventions require the province to play a greater role and for districts to be given more guidance. The KZN PIP could, for example, have set targets for how many adherence clubs would be needed in each of the province’s districts and included an estimate of the additional human and financial resources that would entail. Without such guidance and support from a provincial level, many of the good things mentioned in the KZN PIP might not be implemented, or not be implemented with sufficient ambition. It could be that these issues will happen through other channels, but the PIP should at least contain some thinking on it if it is to meaningfully impact implementation.

The PIP identifies some serious problems in the province’s HIV response. For example, it states that “information indicated that only 55.7% of those on ART had viral loads done”. Identifying and admitting problems like this is positive. It is not clear however from the PIP what will be done to address this problem. Ideally, a serious problem like this would have triggered the commissioning of research to understand why viral load testing rates are so low – and that research would then have been used to inform the PIP.

Reduce TB incidence by 50%

The KZN PIP sets a target of reducing TB incidence by 50% by 2022 when compared to 2017 levels. According to the KZN PIP: “Currently TB incidence is way above the World Health Organisation threshold of 200 per 100 000 population. Earmarked interventions relate to increasing the uptake of TB preventive therapy using various strategies including mass screening.”

The PIPs endorsement of interventions like mass TB screening and intensify contact tracing is to be welcomed. But whereas the intent is good, the lack of actual planning here too is concerning. There is no sign in the KZN PIP of serious engagement with the human resource requirements of expanding screening and contact tracing – and without the people to expand these services the expansion simply won’t happen. We had similar concerns with the NSP at a national level. The explanation then was that this kind of grappling with the nitty gritty of implementation would be addressed in the PIPs.

It is true that the KZN PIP does include a matrix of which departments and sectors or organisations would be responsible for various interventions, but it does not go much further than this. The background is good, the general ideas are good, but in the final analysis there is no real plan to implement.

Serious about structure

Some of the short comings with the KZN PIP outlined above might be explained by the disconnect that often exists between AIDS council and Department of Health planning processes. An AIDS council might set laudable goals, but the Department of Health controls most of the relevant resources. For this reason, the NSP and PIPs should ideally be taken into account in departmental planning processes and budgets. The odd thing is that, unlike most provinces, KZN seems actually to have put some real effort into making these various processes talk to each other. In fact, much of the KZN PIP engages with just this kind of structural problem.

The PIP states: “This plan has to the extent possible incorporated issues relating to HIV, TB and STIs as mentioned in other departmental and sector plans to enhance mainstreaming and multi-sector participation. It further presents a platform for participation in the response by departments and sectors that may not have HIV, TB and STIs activities in their current plan. They should use this plan as a reference document to inform their implementation in line with the departmental mandate. The activities can then be incorporated into departmental strategic plans when the opportunity arises.” And, “The PCA through its secretariat will be required to facilitate the process of ensuring that all departmental plans support the goals and objectives of this plan.”

The above should be in every PIP – with a premier using his or her clout both as premier and head of the PCA to enforce it.

In KZN the Premier has for years been chairing the Provincial AIDS Council and Spotlight sources report that the council meets regularly and is functional. In addition to the PCA, the PIP indicates that the province has 11 District AIDS Councils and 43 Local AIDS Councils. It seems however that leadership at PCA level has not filtered down. The PIP itself states: “While functionality of the PCA was impressive, that of AIDS Councils at the other spheres of government was generally poor especially, at local municipality and ward level. In some cases ward AIDS Committees were non-existent. More broadly all AIDS councils face the challenge of effective stakeholder participation with few stakeholders from different departments, organisations and civil society participating in AIDS councils. This affects governance and mutual accountability of the response.”

The problem of ensuring greater functionality at district or local AIDS council level is certainly not unique to KZN. It is also not something that can be solved in a PIP. For it to be flagged and grappled with in a PIP is welcome.

According to the KZN PIP “6 districts and 21 local municipalities had AIDS coordinators that were exclusively assigned to HIV.” Ideally all districts will have such AIDS coordinators, and all district-level councils will be chaired by mayors.

The plan also shows a good understanding for the fact that health crises of the scale of HIV and TB cannot be stopped by the Department of Health alone. It reads: “Government organisations, non-government organisations, civil society, the private sector, development partners, traditional leadership and the religious sector all have individual and complementary roles in implementing this plan and ensuring delivery.” It is arguably at district and local level that these “individual and complementary roles” are most important. More guidance on how to turn these good intentions into actual shared programmes and shared responsibilities may be useful.

 

No costing and no communications strategy

 

One area that the PIP gives a lot of attention to is communications. It goes as far as to commit that a “comprehensive provincial multi-media HIV, TB and STIs communication strategy will be developed”. This strategy is mentioned time and time again in the PIP in different contexts and in relation to various specific interventions.

The idea of a single communications strategy around HIV and TB in the province is not a bad one. While some HIV communications projects in South Africa have had only limited success, that is not to say that a properly conceived and executed strategy might not be more successful in KZN.

Unfortunately, according to Bonolo Pududu of the HIV and AIDS Directorate in the office of the KZN Premier, by mid-2019 this communications strategy has not yet been developed.

Another concern is that by mid-2019 the KZN PIP, which is a 2017 – 2022 plan, has not been costed. According to Pududu, this is not the province’s responsibility. “The costing of the Provincial Implementation Plans (all provinces) is/was the responsibility of national (i.e. SANAC),” says Pududu. “Initial processes commenced to cost the plans, however, the finalisation of this process is yet to be communicated.”

The PIP refers to a monitoring and evaluation framework document. A draft of this framework was shared with Spotlight. According to Pududu, “final consultations” with “provincial stakeholders” have not yet taken place and the PCA has not yet adopted the framework.

The lack of a costing of the PIP, the fact that the communications strategy has not been developed, and the fact that the M&E framework is only now being adopted are all worrying signs.

Though the KZN PIP is low on detailed plans, there is also some indication that some of the good things in it are not being implemented. Under goal 4 “Social and structural drivers” the PIP sets out to “implement and scale up a package of harm reduction interventions for alcohol and substance use”. Yet, for much of 2018 a needle-exchange programme in Ethekwini was shut down by the authorities, ostensibly because needles were not being disposed of appropriately.

What is to be done

With a new Premier in the province and a new MEC for Health, there is significant potential for change in KZN. The various good things in the PIP can and should be built on.

Ensuring district and local AIDS councils meet and are given sufficient guidance is one urgent priority. Making this happen will require strong political leadership together with clear thinking on what roles district and local AIDS councils can and should play.

A second urgent priority would be to flesh out some of the ideas in the KZN PIP into fully fledged implementation plans. How should new infections in young women and girls be addressed? Should the province embark on a massive scaling up of PrEP for young women and girls? Should there be a new safe sex and condom distribution campaign? Will these campaigns be funded and who will implement them?

Thirdly, whatever revised plan is made must be costed and, if a communications strategy remains central to the plan, then such a plan must be developed. If the PCA and the Premier is serious about the KZN PIP, then they must show that seriousness by executing the plan and integrating it into government planning and service delivery in the province.

Note: The KZN PIP uses estimates from the Thembisa model version 3.2. In this article we use more recent estimates from Thembisa version 4.1.)

 

 

New HIV estimates shows too many people are still not on treatment

South Africa has made great strides in scaling up HIV testing and increasing HIV suppression in patients receiving antiretroviral treatment (ART), but is still struggling to reach ART coverage targets and is falling short of HIV prevention goals. This is according to new findings from the Thembisa model of HIV in South Africa presented today at the 9th South African AIDS Conference held in Durban.

Overall, the model estimates that in 2018 there were 7.39 million people in South Africa living with HIV – equivalent to 12.9% of the population”, said a press release from the University of Cape Town. Around 4.57 million of these were receiving ART.

Around 80 000 people are estimated to have died of AIDS in South Africa from mid-2017 to mid-2018.

Progress against 90-90-90

The model painted a mixed picture regarding South Africa’s progress against UNAIDS and National Strategic Plan (NSP) targets of diagnosing at least 90% of people with HIV, treating at least 90% of those diagnosed with HIV, and achieving suppression of the virus in 90% of those on treatment (the so-called 90-90-90 targets).

According to the model around 90.5% of people living with HIV in South Africa have received a positive HIV diagnosis, 68.4% of those diagnosed are receiving treatment, and 88.4% of those treated had viral suppression (according to the UNAIDS definition of <1000 RNA copies/ml – <400 RNA copies/ml is also used some times).

Of all people living with HIV in South Africa (including undiagnosed cases and people not on treatment), only around 54.7% are virally suppressed. This figure is important since people with viral suppression do not transmit HIV.

Still too many new infections

Although South Africa has been making progress in reducing the rate of new infections, the statement expressed concern that the progress may be too slow. “Over the period from mid-2017 to mid-2018, Thembisa estimates there were 249 000 new HIV infections in South Africa – a 36% reduction on the 388 000 new infections that occurred between mid-2010 and mid-2011. However, the UNAIDS target is to achieve a 75% reduction in the annual number of new infections between 2010 and 2020. To meet this target, South Africa would need to reduce its annual number of new infections to less than 100 000 within the next year, which appears unlikely given the slow pace of decline to date.”

Dr Leigh Johnson, lead developer of the Thembisa model, identified two factors that were hampering progress towards the HIV incidence reduction target: “Firstly, ART coverage is lower in South Africa than in other southern African countries, and we need to do better in linking HIV-diagnosed individuals to care and retaining them in care. Secondly, there is increasingly strong evidence of reductions in condom use, relative to the levels we would expect in the context of high levels of HIV diagnosis.”

The model estimates that adolescent girls and young women (ages 15-24) account for 31% of all sexually-acquired HIV infections. It is estimated that around 22% of women and girls in this group used condoms the last time they had sex. This percentage appears to have been falling steadily from a high of around 30% in 2005-2007.

Although the rate at which new infections is coming down is too slow, the statement points out some success stories. “KwaZulu-Natal, the province with the most severe HIV epidemic, has succeeded in reducing its total annual number of new infections by 49% over the period from 2010-11 to 2017-18. Thembisa also estimates that the annual number of new infections in children declined from 29 000 in 2010-11 to 13 000 in 2017-18, a reduction of 55%.”

Apart from a variety of other sources, the latest version of the Thembisa model also takes into account data from the 2016 Demographic and Health Survey. Work on the model is funded by UNAIDS and from 2017 Thembisa has been the source on which official UNAIDS estimates for South Africa are based.

Spotlight will in the coming weeks be publishing more in-depth analysis of the new Thembisa estimates.

 

Dear Premier Zamani Saul, the Northern Cape health system is in your hands.

Dear Premier Zamani Saul

You have certainly made a great start to your tenure as the newly minted fifth Premier of the Northern Cape. A country, thirsty for good news and ethical leadership has embraced your messages of activist leadership and people have been sharing posts and article links across social media platforms.

You have among others undertaken to not buy new cars for yourself and your executive, but to rather invest in new ambulances. How can such news not be welcomed!

By accepting your appointment as Premier, you have become the custodian of a rough diamond. It is now in your hands whether it will reach its full potential and become a sparkling gem or remain a dusty stone. For too long your home province has been neglected and discarded, an orphan province that despite its size, beauty, uniqueness and presence was discarded and used as a playground for the corrupt and immoral.

The unique people and the breathtaking nature of this province have for very long suffered under a debilitating drought in big parts and a health system that only exists in name. Your health system is an empty shell of buildings that resemble ghost structures, either with no staff or staff so overworked and overburdened that their hospitals are death traps. Patients have been rejected and failed by a health system that mostly exists in name.

You may rightfully question who we are to make such damning statements. Perhaps a little context with be useful. Last year Spotlight, an editorially independent publication of the Treatment Action Campaign and SECTION27, turned our searchlight on your province. We were keen to understand what the state of your province’s health system was – the good, the bad and the ugly. Our experience in other provinces has been that we often will find deeply disturbing challenges but amidst the collapse or problems, we will find places that buck the trend where health workers are finding innovative ways to deliver health services. In the Northern Cape there is a sense of resignation, pockets of health workers are trying to keep the health system afloat, but far too many who spoke to us had either left, were about to leave or did not know how long they could continue carrying an impossibly heavy burden.

There is no doubt that you have by now been briefed on the state of your province’s healthcare system by all kinds of advisors and officials and you have already indicated that you would be occupying a corner office at Kimberley’s Robert Sobukwe Hospital (did you know the name change has not been officially communicated to staff?) to hear complaints from patients. However, we wish to caution you that there is a very real danger that you will spend your time putting out fires instead of dealing with the deep systemic problems.

Spotlight has for many months, since last year, been researching the health system in the Northern Cape, reading the scant information that is available and trying to speak to as many people as possible. We visited many health facilities in the Northern Cape, in small towns such as Keimoes, Fraserburg and Sutherland and larger epicentres such as Upington and Kimberley.

After five months of trying to engage officials in your health department to afford them an opportunity to respond to our list of questions or simply to understand their challenges, we published a series of articles without them answering one, single question. It is hard to understand if they simply did not have the answers or they have become so arrogant that they do not believe they are accountable to anyone.

During our work we identified many common themes and challenges and as you chart the course of your term in office, we thought it may be useful to humbly share some of our observations and findings:

  • There are critical doctor and nurse shortages in the province and you are even losing the ones that are still employed. Doctors and nurses who have left told us that the health department made no effort to convince them to stay. Once we published our articles we received several heartbreaking letters from doctors and nurses who told us they had been desperate to work in the Northern Cape, but they were messed around so much they had to give up. One of these doctors, was one of your own who had been selected to go and train in Cuba only to return with no prospect of a job.
  • There are often no ambulances to deal with emergencies with the few vehicles that were still in running order mostly used to ferry patients to Upington and Kimberley. However, many of the ambulances that do respond to trauma or life-threatening situations are not equipped to deal with the emergency, in fact they cannot even stabilize or transport a patient. As you add sparkling new ambulances to the fleet, we do hope that this will be coupled with a serious campaign to recruit intermediate and advanced life support paramedics. Premier, you speak passionately about rooting out corruption. You may want to pose serious questions around the awarding of the aeromedical ambulance service contract in the Northern Cape which has gone to a company that by all accounts failed to conduct outreach services in the province when it had the previous contract. It makes complete sense to bring back the excellent outreach services similar to those that the Red Cross Air Mercy Service offered from 1996 to 2012, in such a vast and sparsely populated province with a dire shortage of specialists.
  • The Northern Cape is a province of ghost “hospitals” with many downgraded to Community Health Centres, which is just a fancy term for hospitals with no doctors. Hospitals are functioning with skeleton staff or no staff. Many family members are forced to care for the sick and dying in your facilities. The story of the Kimberley Mental Health Hospital is well-known. A visit to this facility reveals beautiful, uninhabited buildings with weeds already taking over everywhere, some parts in need of maintenance already. It is utterly heartbreaking to see such a monument to corruption and endless spending still not functional in a province that has such massive mental health challenges and almost no services to meet the need. Key hospital such as Dr Harry Surtie in Upington, De Aar hospital and Robert Sobukwe in Kimberley have severe staff shortages with health workers and patients who spoke to Spotlight claiming the hospitals have high death rates. Patients are fearful of being referred to these hospitals saying too many people return home in coffins.
  • The province has a slew of vacancies and political appointments in the healthcare system with very little evidence that there have been serious attempts to attract qualified people. We have information of administrative appointments made based on political affiliations and people without the proper qualifications being appointed or administrators being appointed at facilities without there being vacancies or communication with facility managers.
  • There are question marks over the appointment of the Head of Department Dr Steven Jonkers. The province failed to produce the advertisement for the job when asked. At the time of his appointment to the health department Jonkers was reportedly facing charges of corruption. Premier Saul, if you are serious about cleaning up, you need to investigate the appointment of this HOD.
  • Basic medical supplies, drugs, food and stationary are often out of stock in facilities.
  • Many primary Health Care clinics are virtually non-operational. Around Kakamas and Keimoes, several primary healthcare clinics such as Augrabies, Alheit, Marchand and Lutzburg had patients sitting outside when we went there, waiting for a nurse to arrive, hours after the clinics were supposed to open. It is undignified.

 

Premier, our experience has been that the Northern Cape government couldn’t care less about accountability. We truly hope this will change as you take office.

Our experience over the last six months is that there was very little effort by those in power in the Northern Cape to show any accountability. For several months, our efforts to elicit any comment, explanation or meetings with the then MEC, her advisor, the head of department or any other people in decision making positions came to nothing. We would continuously try to contact those in the communication positions and despite reading our messages no response was forthcoming. All questions or requests via the media office or the HOD’s office were simply ignored. Almost 70 questions were sent to the MEC, the HOD and the head of Communications at end of 2018. These questions were resent in early 2019 with several follow-ups. There was no effort to engage or answer the questions .

Premier Saul, you have made some truly impressive and heartening statements and commitments and have  already fulfilled some of your promises. It is wonderful to see that some of these actions involved the healthcare system. However, we will be watching you closely.

Your health system is in the Intensive Care Unit on a ventilator. You cannot afford to waste any more time. Delays lead to the deaths of the poor people in your province. The people who look to you to make their lives better, to save their lives.

You quoted a poem titled Courage in your inaugural address.

One part reads:

To map out a course of action

And follow it to the end

Requires of the same courage

That a soldier needs.

Yes, Premier Saul you are going to need a lot of courage to overhaul your broken health system. We wish you much courage. Going forward, you will need to look into the eyes of the desperate in the Northern Cape who have been holding on or working hard with so much courage despite the impossible odds stacked against them.

Yours in the struggle for better health

The Spotlight Team

 

 

 

 

 

 

Uganda’s Constitutional Court hears a Landmark Maternal Health case

By Paul Wasswa

In what many describe as a landmark case, Uganda’s Constitutional Court will tomorrow morning (Thursday, 13 June) hear a case which challenges the government’s failure to stop the high number of women who die while giving birth.

The case of Center for Health, Human Rights and Development (CEHURD) and others vs. Attorney General (Constitutional Petition 16 of 2011) reveals that more than 16 pregnant women die every day in Uganda with many of these tragic deaths preventable.  Research shows that most of the deaths are due to absence of maternal health kits, no midwives, stock outs of essential medicines and the lack of emergency obstetric care. This state of affairs is attributed to the failure of the state to address the problem of maternal mortality.

Genesis of Uganda’s Maternal Health case

CEHURD’s case is based on the fact that Uganda has an extremely high maternal mortality rate – it increased from 418 maternal deaths per 100,000 live births in 2006 to 438 maternal deaths per 100,000 live births in 2011. This was attributed to the absence of enough midwives and doctors attending to expectant women, frequent stock-outs of essential drugs and other basic supplies such as gloves, an absence of maternal health kits and the lack of Emergency Obstetric Care services at Healthcare facilities and hospitals. The shortage of health workers was compounded by poor pay that greatly contributed to absenteeism and poor attitudes of workers towards pregnant women, according to CEHURD. Rhoda Kukiriza and Inziku Valente also submitted affidavits describing the loss of their relatives at child birth with a belief that it was linked to the poor quality of service in the healthcare system.

When the case was heard in 2012 before the Constitutional Court, CEHURD contended that the poor services coupled with inadequate financial resource allocation to the health sector contributed to the high maternal mortality rate which amounted to the violation of Government’s obligation to provide basic maternal health care services in health facilities.

However, the State argued that the court did not have the power to hear the petition because the government had the power and authority to handle issues connected to maternal health and not the Courts. The court agreed and found that it did not have the power to hear the petition as it raised no questions for constitutional interpretation and summarily dismissed the case.

CEHURD appealed the Constitutional Court Judgement in the Supreme Court (Uganda’s highest court) in 2013. The  Supreme Court found that the Constitutional Court was being called upon to determine whether the Government had taken all practical measures to ensure the provision of basic medical services to the population and in this case maternity services.  It thus held that the Constitutional Court had the power to hear the case on its merits and ordered the Constitutional Court to re-hear the case.

Why this case is important

In a country where the Right to Health is not a constitutionally guaranteed human right, this case seeks to question the progressive realisation of the Right to Health and its rightful place within the ambit of the Ugandan Constitution. Though Uganda is a signatory to several international human rights instruments such as the International Covenant on Economic, Social and Cultural Rights and General Comment No. 14 on the Right to the Highest Attainable Standard of physical and mental health, this case demonstrates the fact that not much has been done by the Ugandan government to address the problem of maternal deaths.

By contrast, South Africa’s constitutional framework, which recognizes the right of access to health care services and the Guidelines on Maternity care in South Africa; which recognize the right to emergency obstetric care, provide the basis on which the public health system has been able to make strides in combating maternal deaths. The maternal death ratio in 2016 in South Africa was 134 per 100 000 live births down from 189 in 2009.

The CEHURD Petition asks the Constitutional Court to take the same progressive approach as South Africa and to breathe the Right to Health into Uganda’s Constitution. It seeks to address the systematic and structural imbalances in society that have led to the death of pregnant women while giving birth in Uganda’s public healthcare facilities. It seeks the recognition that maternal health is a right for all and not a privilege for a few.

Paul Wasswa is a fellow at SECTION27 and Programme Associate at the Center for Health, Human Rights and Development (CEHURD).

 

Minister: We must have communities, especially people living with HIV tell us what is needed

ADDRESS BY THE MINISTER OF HEALTH DR ZWELI MKHIZE AT THE OPENING OF THE 9th SOUTH AFRICAN AIDS CONFERENCE

INKOSI ALBERT LUTHULI INTERNATIONAL CONVENTION CENTRE, DURBAN, KWAZULU-NATAL

11 JUNE 2019

Programme Director

The Conference Chair, Prof Refilwe Phaswana-Mafuya

Premier of the KwaZulu-Natal, Mr Sihle Zikalala,

Ministers, Deputy Ministers and MECs present

The Mayor of eThekwini, Ms Zandile Gumede and other leaders from the local government

The UNAIDS Deputy Executive Director, Dr Shannon Hader,

Representatives of Multilateral and Bilateral Development Partners

SANAC Trust Board members

The Deputy Chair of SANAC and Chair of the Civil Society Forum, Ms Steve Letsike and other Civil Society Leaders

Senior Officials

Scientists, Researchers and Activists

Distinguished guests

Ladies and Gentlemen,

We meet during Youth Month, a few days before June 16th – a historic day in history of our country when thousands of young people took on the might of the apartheid regime. We salute the youth of 1976 and all young people who fought against the evils of oppression and we thank those that paid the ultimate price that they paid for our freedom.
Unfortunately, since then too many young people have succumbed to a preventable disease – HIV and AIDS! Every year for the past 9 years, South Africans gather here in the ICC to discuss ways to prevent HIV transmission as well as how to ensure that we initiate and keep people who are living with HIV on treatment.
The theme of this year’s conference is: Unprecedented Innovations and Technologies: HIV and change. Lest we forget, we have an estimated 7.1 million South Africans who are HIV positive with 4.6 million on treatment. This means that we must move rapidly to ensure that everyone living with HIV is on treatment. Equally we must ensure that those of us who are HIV negative remain negative! This needs innovation and change as the theme of this conference suggests!
For such a conference to succeed in its objectives we must have communities, especially people living with HIV tell us what is needed, researchers and scientists tell us what works and what does not work and government and its implementing partners who are implement with a great sense of compassion, passion and urgency all working together to defeat this epidemic!
This conference epitomises collaborative excellence where science, activism, government, and medicine come together in our responses to the HIV/AIDS epidemic and its twin – tuberculosis. This community has again come together, during this week, to rise to the enormous challenges the response to the epidemic continues to require. These include:
• The eradication of stigma and discrimination around HIV and calling out the prejudice that has fuelled it;
• The hard work of research and of ensuring that the research is relevant, puts the rights of people first and community voices are heard when planning and implementing the research;
• And importantly to ensure that government and its partners are responsive to the epidemic and that programmes are implemented effectively, efficiently and with quality.
This conference is where we dedicate our energy to share innovative plans to end the HIV epidemic. Today, we also pay tribute to the researchers and activists who have devoted their lives to finding solutions to end AIDS as a public health threat. In addition, we are reminded of the bravery and courage of late activists like Gugu Dlamini, Nkosi Johnson, and Prudence Mabele, who fought from the front to ensure that this epidemic does not define our destiny as a country. This day also brings to memory our global icon and the first President of democratic South Africa, Tata Nelson Mandela – who fought against the discrimination of people infected with HIV and TB and rallied behind the campaign for expanding ARV treatment.

Such gatherings remind us that we need to understand the needs of the person who lacks access to information and services so that we can provide them with information and services, including key populations, the LGBTI community, rural communities and people living with disabilities. These gatherings also remind us to harness the huge potential of people living with HIV to guide the response and delivery of services and the campaign against stigma and discrimination. The day also reminds us to create platforms for young people to shape and direct the programmes that are meant to empower them to stay HIV free and for those that are infected to live longer and reach their full potential so as to contribute to the development of the country.

Although our country is applauded globally for having progressive legislation and policies that promotes access to health services, evidence has identified stigma and discrimination, including self-stigma, and the negative attitudes of healthcare workers, as key barriers to accessing HIV and TB services.

The 2014 People living with HIV Stigma Index Survey, conducted by SANAC in partnership with the National Association of People living with HIV and AIDS (NAPWA), the Treatment Action Campaign (TAC and Positive Women’s Network (PWN), found the following:

• Over one-third of respondents (36%) reported experiencing some form of stigma in either their personal or social environments, including being gossiped about, experiencing verbal and physical harassment and assault.
• That over one-third (36%) of respondents reported being teased, insulted or sworn at because of their TB status.
• 27% harboured feelings of uncleanliness or dirtiness in relation to their TB diagnosis.
It is not surprising that people are discriminated against because they have tuberculosis – even though TB is a very old disease and has been around for hundreds of years – because it is airborne and anyone can contract TB.

A more recent survey, in 2018, conducted by the University of KwaZulu-Natal also found that stigma and discrimination affected access to health care services, creating barriers to access to and adherence to ART and deterred individuals with TB from accessing services for fear of breaches of confidentiality.

Let me be clear as the newly appointed Minister of Health, stigma and discrimination has no place in the provision of health services. We will take action against any health professional that discriminates against anyone on the basis of their illness, gender orientation, social status or any other characteristic!

In addition, to address these issues and to give effect to the objectives of goal 5 of our National Strategic Plan for HIV, TB and STI 2017-2022, I am pleased to announce that we have just launched a 3-year Human Rights Plan for HIV and TB, which aims to set out a comprehensive response to human rights and gender-related barriers to HIV and TB services in South Africa for people living with HIV, people living with TB, and vulnerable and key populations. This plan will focus on the following:

1. Stigma and Discrimination reduction
2. Train health and other frontline workers to provide care that is non-discriminatory
3. Sensitize and train Law makers and law enforcement agencies
4. Campaigns that focus on legal literacy and rights
5. Strengthening legal support services
6. Monitoring, reviewing laws and policies
7. Reducing gender inequality and gender based violence

I would like to take this opportunity to thank the SANAC Human Rights and Legal Task team under the leadership of the Deputy Minister of Justice, Mr John Jeffrey for overseeing the development of this plan. In working with the Chairperson of SANAC, I will ensure that the implementation of this plan becomes a standing item in all SANAC InterMinisterial committee meetings and in SANAC plenary meetings.

The response to the HIV and TB epidemics needs resources. We are grateful that our government is the main funder of our responses. In addition, we wish to thank the Global Fund for their support which was recently announced ($369 million over the next three years) and the President’s Emergency Fund for AIDS Relief (PEPFAR) which will provide $730 million in funding in the 2019/20 financial year. I want to encourage everyone that benefits from these funds to ensure that the funds are used as effectively and efficiently as possible. We have to use these scarce resources to reach the target that President Ramaphosa announced in the 2018 State of the Nation Address of 6.1 million people living with HIV on treatment by December 2020! We dare not fail to achieve this target if we wish to reach epidemic control!

In closing, I would like to thank the Conference Planning Committee under the leadership of Prof Refilwe Phaswana-Mafuya for all the hard work of planning such a big conference and wish everyone fruitful deliberation over the next 3 days.

I thank you.

A healthcare system in crisis: The long road ahead

A healthcare system in crisis: The long road ahead
A Speech by Sibongile Tshabalala, TAC National Chairperson, 11 June 2019, SA AIDS Conference Opening Plenary, Durban

Greetings comrades!

I would like to take this moment to acknowledge the Deputy President, DD Mabuza; the Health Minister, Dr. Zweli Mkhize; the Premier of KwaZulu Natal, Sihle Zikalala; MECs for health; the organisers of the SA AIDS Conference; the media; delegates; and importantly, people living with HIV who managed to make it to the conference. We also acknowledge those who could not make it as a result of many factors such as the high cost of conference fees and  the need to work in order to feed their families, amongst others.

Comrades, the ninth SA AIDS Conference occurs during a critical juncture in South Africa’s history.

We meet at a time when AIDS denialism is beginning to recede in the nation’s collective psyche.

A time where South Africa has the world’s largest HIV treatment programme.

And let me pause here to acknowledge the tremendous work of former Minister of Health Dr. Aaron Motsoaledi in building the HIV treatment programme.

But we also meet at a time where corruption is rampant.

While the disgraceful details of state capture are being exposed in commissions of inquiry – much corruption in our provincial departments of health goes unreported and unprosecuted.

Comrades, we are being trampled down into the dirt by the co-epidemics of corruption and mismanagement.

These are the co-epidemics behind the Life Esidimeni tragedy, behind the disgraceful cancer crisis here in KZN, and the looting of the HIV Conditional Grant to pay Buthelezi EMS in the NorthWest.

Honourable Deputy President and Minister of Health, if you have any doubts of the scale of the crisis, I urge you to study the reports of the Office of Health Standards Compliance.

Let me focus on one symptom of these co-epidemics. Stockouts.

Comrades and friends, as some of you know, the Treatment Action Campaign turned 20 in December last year. As one of the foremost social movements in the country, we have been monitoring drug availability in health facilities for much of those two decades.

According to PEPFAR data, in 2018, around 750 thousand people were initiated on treatment but only around 400 thousand additional patients were retained by the last quarter of the year.

What happened to the other 350 thousand people?

Through our ongoing monitoring campaign, which recently focused on the Free State and Gauteng provinces, PLHIV sector members found that many facilities still undergo drug shortages, or worse, stockouts.

As part of the Stop Stockouts Project, 673 facilities were monitored by members of the PLHIV sector and other comrades within the past two months. We found that of the health care facilities monitored, 109 facilities in the two provinces had drug stockouts of Dumiva, a key antiretroviral. 106 overall did not have injectable contraceptives. When our publication Spotlight travelled to the Northern Cape, they found many facilities with no stock of basic medical supplies such as bandages, plasters and intravenous drips.

It is heartbreaking that as we stand here today in 2019, some of the same issues from a decade ago still plague us.

We cannot run away from the fact that the health system that you are inheriting, Honorable Minister, is one that is in dire need of resuscitation.

Often we have stockouts simply because our healthcare system is in such a terrible state that medicines pile up in depots while clinic shelves are empty.

When the problem is with the supplier, it takes months for the news to filter through to clinics and for the department to provide advice on alternatives – as has just been the case.

Honourable Minister, patients are being turned away. Patients are being told to go pay R900 for Dumiva at private clinics.

Stockouts is one thing. But there are also long queues, often demoralized healthcare workers, a lack of confidentiality. These are all symptoms of the mediocrity and dysfunction in our healthcare system.

We do not accept this.

We do not accept that the price we have to pay for accessing healthcare services is to give up our dignity.

So what do we ask?

We as the Treatment Action Campaign, the PLHIV sector and public health care users call for the urgent prioritization of health care through an access to healthcare ‘bailout’ starting with the  during the October budget review.  In real terms our health budgets have been falling while the need for healthcare services has grown. In simple terms, we need money so that we can employ more healthcare workers.

We urge government to root out corruption in our provincial healthcare systems and to ensure only appropriately qualified persons are appointed in these departments. We will hold you responsible if the co-epidemics of corruption and mismanagement are not dealt with.

We urge the new national and provincial administrations to prioritise the welcome back campaign, in order to trace people who are missing and link them back to care and treatment.

Our HIV response is already beginning to unravel.

In order to get it back on track, we have to transform our healthcare system into a place that affirms human dignity rather that degrades it.

Comrades, Deputy President, Minister, Premier, MECs, we are not anti-government.

But please understand that we are a membership-based organizations andour responsibility is to our members and to the poor.

We are guided by this responsibility and by the Constitution of South Africa and the right to access healthcare and the right to dignity.

We will work with government in instances where it is in the best interest of our members and of the poor to do so.

But we will also hold you accountable to the highest standards.

Our lives, our dignity, is not negotiable.

Amandla!

I thank you!

Why SA’s medicines regulator should consider affordability

By Tendai Mafuma and Nomatter Ndebele

Before any medicine can be sold in South Africa, it has to be approved by the South African Health Products Regulatory Authority (SAHPRA), who certify that the medicine is safe, of good quality and is effective. Unless the medicine has gone through these processes, it cannot be on the shelves for sale. In exceptional circumstances, SAHPRA may permit access to unregistered medicines. This exception is permitted by section 21 of the Medicines and Related Substances Act, 101 of 1965 through a process that is commonly referred to as “a section 21 application”.

Section 21 applications are typically used to access an unregistered medicine in circumstances where there is no version of that medicine that has been registered in South Africa. An example of this could be where registration of the medicine is pending but there is a need to urgently access that medicine in order to save lives. This was the case during the height of the HIV/AIDS pandemic, when organisations such as the Treatment Action Campaign used section 21 applications to get access to fluconazole for the treatment of HIV-related opportunistic infections. This provision may also often be relied on where a patient has sufficiently justified why they cannot use the registered product, for example if a patient can show that the unregistered alternative is not only superior in terms of safety and quality standards but will also have superior therapeutic effect on their health.

One of the questions that comes up regularly is whether the fact that a registered medicine is excessively priced is sufficient justification for seeking section 21 access to an unregistered alternative. Over the past decade, individual patients have sought access to unregistered medicines on the basis that the alternatives registered in South Africa are excessively priced, and therefore inaccessible. SAHPRA has routinely declined authorisation of the applications on the basis that cost is not a factor to be considered. Put simply, according to SAHPRA, if there is a registered medicine in South Africa, that would be effective for the diagnosed condition, you cannot request access to an unregistered alternative solely on the basis that you cannot afford the registered medicine. This means that if patients cannot somehow find money for the registered treatment, they will not access any treatment.

People with chronic health conditions such as cancer are particularly affected by this. We use cancer as an example because due to the astronomical costs of cancer medicines, very few patients are able to gather the money required for new cancer medicines.

Take for instance Hayley Stols who was diagnosed with stage 4 malignant metastatic myeloma. Her oncologist recommended treatment with Opdivo, a drug that was not registered in South Africa. At the time, there was a registered drug, Pembrolizumab which would have cost R1,8 million per year. Opdivo, on the other hand, would have cost R770 000 per year if purchased from the Netherlands. Whichever option Hayley chose, it would have had to be self-funded as neither medicine was covered by her medical aid scheme. It is difficult to imagine anyone in South Africa who has R1,8 million per year for one course of treatment. R770 000 is still a lot of money, but it is significantly less than R1,8 million.

Hayley made two section 21 applications to SAHPRA to request permission to access Opdivo. In both applications, she clearly stated that the reason for this request was that Opdivo was more affordable. Both applications were rejected.

There are a few exceptional cases where SAHPRA has approved section 21 applications on the basis of cost, for example applications by MSF for access to the TB medicine linezolid, but the fact is most of these applications are rejected. Patient advocacy groups have been trying to engage SAHPRA on this issue with little success.

In the past, SAHPRA has argued that the law does not empower it to make decisions based on cost and that its only mandate is to consider the “safety, quality, and therapeutic efficacy” of medications. This, in our view cannot be the only consideration.

Firstly, the Constitution doesn’t only guarantee the right to access to health care services, it also requires the State to take reasonable measures, within available resources, to achieve progressive realisation of the right. It also places an obligation on organs of state such as SAHPRA, to respect, protect, promote and fulfil fundamental rights. Moreover, the Constitution states that legislation must be given an interpretation that promotes the spirit, purport and objects of the Bill of Rights. This means that laws must be interpreted in a manner that will allow the enjoyment of rights to the fullest possible extent. As an organ of state responsible for ensuring that consumers have access to safe, quality and effective medicines, SAHPRA’s interpretation of the law should not be one that effectively hinders access to healthcare.

It also means that SAHPRA must develop and implement policies that do not undermine access to medicines. At the most basic level, access to medicines refers to the ability of all persons to receive the medicines necessary for the treatment of any condition affecting them. It entails physical, informational and economic access (i.e. affordability). This interpretation of access to medicines has been laid out by the courts. If SAHPRA does not concern itself with practical concerns about whether patients can afford medicines, that is tantamount to a failure of its duty to respect, protect, promote and fulfil the constitutional right to have access to medicines.

Considering affordability does not mean that SAHPRA must turn a blind eye to considerations of safety, quality and efficacy. Neither will it open the flood gates of section 21 applications as patients seek access to unregistered medicines even where the price difference is marginal. Rather, it requires an acknowledgement that there can be no access if the medicines are priced excessively and beyond the means of those who need them.

SAHPRA recently published a guideline aimed at ensuring that section 21 applications are received, processed effectively and consistently, and decided timeously. Despite SAHPRA already having dealt with several section 21 applications based solely on cost, the guideline makes no mention of how the entity intends to resolve such applications. Given the constitutional obligations, we think that it is about time SAHPRA begins to concern itself with matters of affordability of medicines. Failing to do so would be a failure to ensure access to medicines and a violation of the right to access health care services.

ARV stockouts putting lives at risk, says SSP

By Anso Thom and Marcus Low

LATEST NEWS! Updated circular on Lamivudine can be seen here

Stockouts of several critical medicines have been reported at healthcare facilities in five provinces, according to a statement from the Stop Stockouts Project (SSP). This includes stockouts of the antiretroviral (ARV) combination of Abacavir and Lamivudine and of various oral and injectable contraceptives. The Abacavir and Lamivudine combination is prescribed in the public sector to tens of thousands of patients who have become resistant to first line ARVs.

Following up on initial reports from users of the public healthcare system, Treatment Action Campaign (TAC) members are currently visiting healthcare facilities in the Free State and Gauteng to assess the situation. They are reporting stockouts of ARVs, paracetamol, flu medication, contraceptives, some antibiotics and HIV test kits. The TAC, together with various other civil society organisations, is a member of the SSP.

National Department of Health Director-General Precious Matsoso said they had sent technical teams to work with the TAC in an effort to identify affected facilities and patients. She said a circular was being prepared and will be sent to doctors with guidance on how to switch patients to alternative drugs.

The SSP says that several stockouts have been unresolved since the second half of 2018 and “the situation has now escalated into a crisis”.

They warned that scores of lives are at risk.

SSP’s Kopano Klaas said they had received stockout reports of second-line ARVs from the Free State, Gauteng, Mpumalanga, Limpopo and KwaZulu-Natal.

A list of stockouts supplied by the Treatment Action Campaign in the Free State reveals that since March there has been stockouts of the Abacavir/Lamivudine combination in at least 15 health facilities.

In the Mangaung Metro district it includes Mafane, Thaba-Nchu, Freedom Square, Bloemspruit and Gabriel Dichabe.

In the Lejweleputswa district the TAC reported stockouts at Rheederspark, Bophelong, Tshepong, Welkom, Leratong, Phomolong, Boithusong and Welkom.

In the Thabo Mofutsanyane districts stockouts were reported at Intabzwe and Qholaqhwe. The stockouts at Qholaghwe were understood to be mainly due to a break-in at the clinic.

Information from a TAC visit to Gabriel Dichabe Clinic in Bloemfontein suggests that there has been a breakdown between the provincial depot, the pharmacy, the clinic and patients. In cases where the clinic does not have stock, patients are given scripts so that they can purchase medicines at private pharmacies. The Medicines Price Registry lists a price of R921 for a month’s supply of the Abacavir and Lamivudine combination – likely out of reach for most public sector patients.

SSP also said that there had been repeated stockouts of injectables and oral contraceptives. Klaas said according to their information only one company was contracted to supply the oral contraceptive and because they were given very short notice they have been unable to keep up with the demand. Klaas also claimed that alternative companies were not interested in supplying the contraceptives as they were paid late or not at all.

The only alternative, an implantable device, is ineffective in women on ARV regimens containing Efavirenz, contained in most first line combinations provided in the public healthcare system.

“The SSP reports in to District, Provincial and National Departments of Health staff on a daily basis, but they seem to know as much or as little as we do. Surely someone needs to account to the scores of patients, who are travelling long distances to collect their medication, having to take a day off work to do so, only to be turned away when they get there?” Klaas said.

Deputy Director General in the NDOH Dr Anban Pillay said that there was a shortage of  Lamivudine globally and that the pharmaceutical company Mylan was unable to supply full order quantities.

He said they had secured a section 21 approval so that they can get stock from another source. Pillay advised facilities to manage the shortage by providing lesser quantities than usual for each patient.

On the contraceptives, Pillay said there should be no stockout but a shortage of the injectable nuristerate. “This is due to the only supplier Bayer being unable to produce sufficient quantities relative to demand. SA is one of a few countries using nuristerate,” he said.

Note: Spotlight is published by SECTION27 and the TAC – both of which are members of the SSP. Spotlight is editorially independent and a member of the Press Council.