NHI Bill: Welcome but flawed

By David Sanders & Louis Reynolds, People’s Health Movement South Africa

The People’s Health Movement South Africa (PHM-SA) welcomes the National Health Insurance (NHI) Bill in that it confirms Universal Health Coverage (UHC) through a single payer system as the platform for the delivery of health care. The goal of UHC is to realise the right to comprehensive health care of good quality for everyone on the basis of need, while ensuring that no one experiences financial hardship in accessing the care they need.  Comprehensive care includes promotive, preventative, curative, rehabilitative and palliative health services regardless of people’s socio-economic or health status.  The NHI should be funded through a solidarity mechanism where there is a cross-subsidy from the rich to the poor via taxation.

Although we are supportive of the principles that underpin the NHI, PHM has several reservations about whether the Bill can deliver UHC. More broadly, we remain deeply concerned about government’s ability to steer this ambitious project in the context of South Africa’s deep-seated and multi-pronged health crisis.

Administration of the NHI Fund

The Bill makes clear that the NHI Fund will be overseen by a Board of ten persons appointed or approved by the Minister. It will be the only purchaser of health services from accredited providers – public and private – and will ensure equity and efficiency in health care. A unitary system with the National Health Insurance Fund (NHIF) as the single purchaser of services allows for strategic purchasing of those services that are necessary to reach defined health goals. .

A justifiable concern, expressed by a number of analysts and based on experience of state-owned enterprises, is the potential that exists for this enormous fund to be looted.

Services free at the point of use will be provided to permanent residents while documented refugees and asylum seekers will be eligible for free emergency services, care for conditions of public health importance (presumably TB, HIV and other infectious diseases) and services for paediatric and maternal conditions.

Services not reimbursed by the fund (i.e. not part of the defined ‘package’) can be paid for through medical schemes or out-of-pocket. All users are required to be registered with a primary care provider (presumably a clinic, health centre or general practitioner) and will have to attend such a provider before being eligible for specialist care.

Services provided under NHI

The details of what services are to be funded (the benefit package) are not provided. It is hoped that the benefits package will be identical for all users of NHI-funded providers. However, the Government Gazette of July 2017 titled ‘NHI Implementation: Institutions, bodies and commissions that must be established’ describes the proposed funding arrangements for five different groups: the unemployed, the informal sector (such as taxi industry; hawkers, domestic workers), those in formal sector employment (bigger business), those in formal sector employment (small and medium size business), civil servants (including SOEs, Intelligence Agencies, Defence, Police Service). This is a concern, since it implies that there will be different packages for different groups. Although this arrangement is said to be ‘transitional’, experience from other countries shows that it is very difficult to change such benefits packages once they have been in place for any length of time. It is likely that the poorest and sickest in our country will receive the most limited package of services. If this occurs it will increase already existing inequality.

A ‘Benefits Advisory Committee’ will decide what the content of these packages will be. This important body has representation from all medical schools, provinces, private hospitals, medical schemes and the World Health Organisation (WHO) but none from civil society or labour. This will be supported by a Health Benefits Pricing Committee which also has only technocrats.

There is no room in these committees for meaningful public participation. This will bias their work and decisions towards hospital-centred specialist care and a narrow biomedical approach. It is essential to include civil society and labour on these committees.

Their proceedings should also be open and transparent, and accountable to the Minister and Parliament. In particular, they must be accountable for the reasonableness of their choices of the benefits they include in the package. The reasoning behind their choices should be open to public scrutiny, including the evidence upon which they are based and how they apply in local contexts.

Only the Stakeholder Advisory Committee, a large body that merely advises the Minister, has representation from indigenous practitioners, NGOs and civil society, although they are greatly outnumbered by representatives from professional and statutory bodies.

How will NHI purchase services?

Purchasing of services is intended to be devolved to provincial and district level hospitals and at sub-district level to contracting units for primary health care. District Health Management Offices are intended to play a coordinating role.

Justifiable concern has been expressed about whether these sub-district and district entities will have the capacity to undertake such detailed and complex activities. The mechanisms for payment of accredited service providers are vague in the Bill and it is strongly rumoured that medical schemes may be enrolled to perform this function. PHM-SA is concerned that the greater likelihood of urban and private providers being accredited than public and (especially) rural providers, holds the danger of aggravating already existing urban/rural inequity. For example, the great majority of medical specialists and therapists of various kinds are overwhelmingly located in large metros, especially in Gauteng and Western Cape. This effectively means that public tax money will be used to fund a service that will likely cater preferentially for the better-off living in urban areas.

Transitional arrangements

The Bill specifies transitional arrangements that consist of three phases extending to 2026. The current second phase will focus on establishing institutions that will form the basis for the Fund, as well as on interim purchasing of personal health care services. Phase 3, from 2022 to 2026, will establish the necessary structures and be guided by two committees – the National Tertiary Health Services Committee and the National Governing Body on Training and Development. These will be responsible for a Human Resources for Health (HRH) development plan.

PHM has two concerns about these arrangements: Firstly, an HRH plan is required urgently to ensure the development of a robust public health sector, especially at district level and below, so that the NHI can operate effectively and efficiently in formerly underserved areas. Secondly, given their unimpressive record to date in transforming health sciences education and training, it is unlikely that these structures, whose composition has been proposed to include mainly hospital-based clinicians and educators, will implement an appropriate HRH plan.

The Ministerial Advisory Committee on Health Care Benefits will be a precursor to the Benefits Advisory Committee which will advise the Minister on priority setting. Although the composition of this structure is not specified in the Bill, the 2017 gazette discussed above proposed a composition in which senior government officials and medical scheme representatives predominated. This structure too creates a concern that the emphasis will be on facility-based clinical medicine and that primary and community-level care will be marginalized, as will prevention activities.

The context: the national health crisis

While the crisis in the public health sector is front-line news today, the private sector is in a crisis of its own — a crisis of growing medical scheme unaffordability,  shrinking benefits and static or declining  membership.

The roots of the crisis lie in the systematic underdevelopment and structural inequality enforced by apartheid. Its more immediate cause is the neoliberal Growth, Employment and Redistribution (GEAR) macroeconomic policy adopted by the ANC-led government in 1996.  GEAR follows the free market fundamentalist mantra of public sector austerity, privatisation of public services and goods, trade deregulation and low corporate tax. It is failing in all 3 of its components: growth is poor, unemployment rampant, and we remain one of the most unequal countries in the world.

More than 2 decades of austerity, combined with a deepening culture of corruption, have aggravated both facets of the national health crisis. Firstly, the state has failed to address inequity in access to the social determinants of health (SDH) such as sufficient quality food, water, sanitation etc through poor service delivery and growing unemployment and income inequality, thus aggravating the burden of disease. Secondly, the tight financial constraints imposed on the public health sector by austerity, together with a growing and increasingly pervasive culture of corruption, has led to loss of posts and skills, deteriorating infrastructure, and demoralisation of staff at all levels of the system. The fact that rigid austerity was forced on the public sector in the face of the burgeoning and badly-managed HIV-AIDS pandemic of the 1990s made it all the more devastating.

Strengthening the public health sector

Before the public health sector can participate in the NHI it will need to be strengthened substantially, especially in terms of its physical infrastructure, human resource base and their skills, especially in leadership and governance. These imperatives will require strong political will and significant funds. Government has little option but to provide such funding, since the current health crisis is untenable. Although the upfront financial commitment will be large, the returns on investment are potentially even greater – as a result of savings on long-term health care, improved economic productivity of a healthier workforce, and the multiplier effect in the economy of having a larger number of employed people, especially rural women.

Financing the NHI

The Bill says very little about possible sources of funding for the NHIF, but there are no real options other than through taxation and an end to austerity budgets. PHMSA believes that progressive income tax — a surcharge added to the normal income tax at an increasing percentage — would be the best option. The principle that those who can afford it pay more, while those who need more health care receive more care, also builds social solidarity. The retrogressive recent increase in VAT adds to the tax burden of poor and working class people and exacerbates inequity in access to the social determinants of health through increased prices on some essential commodities.

There is no doubt that increases in revenue from tax are necessary to strengthen the public sector and finance the NHI. This may be difficult politically, but we believe there is room for such increases. Forslund notes that, because tax brackets have increased faster than inflation, the tax burden on the middle class and the rich has decreased substantially over the past decades. He points out that if the government had merely kept personal income tax stable since 2005/06 – by raising tax brackets strictly at the rate of inflation – personal income tax would have added more than R150 billion to the present budget. This would have made financing the NHI easier even before raising additional tax.

The alternative to tax is to borrow, which means eventually paying more and more government income towards debt servicing and away from delivering services.

Corruption

It is also essential to root out corruption. Corruption weakens the state, delegitimises taxation, destroys public services, and ruins the social fabric. Corruption thrives in dark spaces where the public and private sectors meet. Forslund argues that “as long as the public sector isn’t strong enough to provide basic services, but relies on “partnerships” and tenders, corruption will remain rampant”.

Conclusion

There have been many responses to the NHI Bill, most of them negative, many containing uncomfortable truths about the state of the health system and the extreme difficulty of fixing it. But this strengthens the case for the NHI and an equitable health system based on UHC and the principles of Primary Health Care. The state, at present, does not have the capacity to deliver it. Nor can the corporate private sector, as is shown by abundant empirical evidence in the public health literature. This places a major responsibility on civil society to give the state critical support and mobilise the public around health. It underpins PHMSA’s campaign for a “People’s NHI”.

The People’s Health Movement South Africa calls upon all citizens of South Africa and civil society to unite behind a People’s NHI to ensure that the principles of the Right to Health, Universality and Social Solidarity are adhered to throughout the implementation process. 

To join the People’s NHI Campaign, please do one of the following:

  • Dial *134*1994*333# (it’s free)
  • SMS ‘NHI’ to 31660 (standard cost SMS)
  • Visit http://bit.ly/2r22Tnl
  • Or send a PCM to 066 040 9017

Contact Person: AnneleenDeKeukelaere@secretariat@phm-sa.org

 

 

Opinion: Dear Deputy President Ramaphosa

I am writing this letter to you in your capacity as the Chairperson of the South African National AIDS Council (SANAC), as it reaches a crucial stage in the development of the next National Strategic Plan (NSP) on HIV, TB and STDs.

‘Deputy President, AIDS is not over’ – Mark Heywood

Deputy President, a few days ago I received the following text message from a friend:

‘Two funerals today of family/friends that died of AIDS. One kept it secret from the family; found CD4 results under mattress of 34. She attended a church that preaches believers don’t take ARVs. In the other case, he defaulted on treatment and died. Late 40s/early 50s. Free State and Limpopo.’

This sad message probably indicates something we would rather not consider, that there are a growing number of people dying from AIDS and TB again – despite the availability of antiretrovirals. Statistics reveal to us that a high proportion of adolescents are dying of TB and HIV, both diseases that can be prevented and either cured or managed. I hear that the rates of vertical HIV infection (mother to child transmission during and after birth via breastfeeding) are higher than we admit. These facts point to the heart of the challenges we face, challenges that must be brought to the fore as SANAC, under your leadership, finalises a new strategic plan on HIV for the next five years.

This will be our country’s fifth national AIDS plan since democracy. It is certainly the most critical. This is the do-or-die plan. Literally. I’ve been involved in all five so please allow me to reflect on why this one is so important.

The first plan, drawn up by the National AIDS Convention of SA (and known as the NACOSA plan), covered the years 1994-1999. It was drafted with the full involvement of civil society and in close cooperation with ANC leaders. It was strong on human rights, but did not include ARV treatment because in 1994 treatment was unproven. It failed not because it was not a good plan, but because, tragically, it coincided with the first years of our liberation. Our nation had other pressing priorities. There was little political will to implement it.

The second 2000-2005 plan was a poor plan. It was largely ignored; that was the period of AIDS denialism, the period of Manto Tshabalala-Msimang and Thabo Mbeki, a time when SANAC was chaired by a disinterested then Deputy President Zuma. SANAC was so dysfunctional we didn’t even bother with it.

The third NSP, 2007-2011, was the plan that broke the back of AIDS denialism. It was ambitious and expansive, it set a target of ‘appropriate packages of treatment, care and support to 80 percent of HIV positive people and their families by 2011’, it strengthened programmes to prevent mother-to-child transmission, it introduced the idea of a programme of voluntary male circumcision. NSP 2007-2011 was an omnibus, a bumper edition. It had to be. It was strategically necessary to pack it with every programme we knew had some efficacy because AIDS denialism had placed us seven years behind the AIDS epidemic and there was total disarray in the national response.

However, to be honest, NSP 2007-2011 wasn’t very strategic. The strategic focus came from something that is not even mentioned in the plan; it was the Treatment Action Campaign’s (TAC) mobilisation to popularise the plan and to focus the government to continually expand access to ARV treatment that made sure it remained relevant to the national discourse. It was the health workers who were desperate to start saving lives again.

The fourth plan, 2012 to 2016, is about to expire. Nobody will miss it. Very few people knew about it in the first place. It was too complex, too unfocused. It came out of a process, much like the one going on at the moment, that allowed everyone to throw in their pet project and didn’t distinguish clearly enough what were the priority projects. It dodged the difficult issues. Cabinet’s only contribution before it approved it in late 2011 was to delete a firm commitment to decriminalise sex work from the plan. Are you therefore surprised we have such high rates of HIV among sex-workers?

In recent months an extensive consultation has taken place again about the next NSP. However, I would strongly recommend to you that now you entrust the development of the plan to an expert team. Their job is to distill the ideas, insights and learnings they have heard, into a strategy. They must do what they must do – but my unsolicited advice to them would be as follows:

Keep it short and simple

We can’t afford another 500-point strategy that’s read only by experts and which is unintelligible to the people who need to know the plan.

Avoid jargon

Avoid reference to UNAIDS’ confusing jargon that means nothing to an ordinary person – and actually causes confusion. ‘Test and Treat’, ‘Treatment as Prevention’, ‘Decanting’, ‘90-90-90’, ‘Getting to Zero’, ‘KPs’, ‘VPs’ and ‘MSM’, and so on…

Keep it focused 

Leave things out rather than stuff everything in. In my view a strategic Strategic Plan should now focus all its efforts (or rather our efforts) around two keys questions:

How to massively cut the number of new infections, particularly in young women and among what AIDS experts call ‘key populations’. It is scary, outrageous, shocking that 2,000 young women are infected with HIV every week. If we could cut this by 75 percent – and we have to believe that we can – we would be on a winning streak.

How to improve the quality of care for the 3.5 million people now on ARV treatment and how to find our way to the missing 3.5 million who need to be on HIV and TB treatment.

To address these two challenges, DP, you have been entrusted to provide leadership. You must force us to square up to the things that can’t be said. You must help us to do the things ‘that can’t be done’. They can.

We must throw the kitchen sink at these two critical challenges and leave the rest to take care of itself. We can do this because many of the other necessary programmes and activities of the AIDS response are now reasonably well entrenched. The message is that they must continue.

So what could we do about prevention? There are 25,741 schools in our country. These should be the sites where we concentrate the struggle against HIV. We should say that within six months every school should offer continuous quality sexuality education, especially about gender and sex, voluntary male circumcision, male and female condoms, Pre Exposure Prophylaxis (PreP, but please don’t call it that), HIV and TB testing, access to HIV and TB treatment and support for adherence. If we did this, we would win.

So what could we do about treatment? There are 3,182 clinics and 331 Community Health Centres (CHCs) in our country. These need to be the sites of our struggle against AIDS and TB, co-ordinating salvoes into schools, shebeens, churches, football clubs, burial societies. But to do that they need better management, empowered clinic committees, resources, and properly employed, paid and supervised community health workers as the backbone of ward-based outreach teams.

Is this impossible? No it is not. Would it make a difference? Yes, it would.

And finally a word of warning, or rather exhortation. There are a number of risks that we must counter.

The first is that many of those who represent ‘civil society’ in SANAC and Provincial AIDS Councils are pretenders; they are out of touch and disconnected from real people, they are their own insular civil society, they have formed a world in a parasitic eco-system that feeds and flies them. If these people continue to guard the gates of the AIDS response, we are in trouble. You, DP, need to once more insist on accountability and evidence, volunteerism and sacrifice.

Measure people by their actions not their words.

Finally, DP, a special appeal. We can’t implement the NSP outside of the public health system. And here’s the rub: At the moment the NSP is being developed without any reference to the desperate state of our clinics and hospitals, or the exploitation of our health workforce. This might seem odd, but my guess is that hardly any of the people busy making proposals about the NSP, or being consulted about it, either have HIV or have HIV and use the public health system. This means that they do not appreciate the obstacles created by drug-stockouts, poor quality information, rushed HIV testing, and treatment illiteracy from the treaters. It is half-true that AIDS ‘is not a health issue’. But without a solid health system, the response has no backbone. At the moment that backbone is broken.

It does not need to be part of the NSP, DP, but it is critical that we empower Health Minister Motsoaledi to fix the health system in the provinces.

Deputy President, AIDS is not over. Millions of lives depend on your leadership of this process. Please get it right.

Mark Heywood
Activist
Former deputy Chairperson of SANAC

 

The madness and evil of Manto and Thabo meets the madness and evil of Bathabile and Jacob

By Anso Thom

Having reported with many journalist colleagues on the darkest days on former President Thabo Mbeki and his health minister Dr Manto Tshabalala-Msimang’s distressing, fatal and quite mad HIV-denialism, the latest saga around social grants did bring back a sense of déjà vu. The denialism of the very real crisis and potentially devastating impact on the poor, spearheaded by President Zuma and his Social Development Minister Bathabile Dlamini, brought back some painful memories.

Once you start joining the dots and making the links, the similarities in some instances are remarkable.

Under Mbeki and Tshabalala-Msimang we had the following:

  • A President in denial and gone rogue on science, medicine, the Constitution and human rights.
  • A morally corrupt Minister who for various reasons allowed herself to become the President’s henchwoman
  • A President who not only denied that lifesaving drugs needed to be made available, but also denied that these medicines were actually efficacious.
  • A Minister who with great zeal not only became the President’s denialist spokesperson, but took his denialist rambling to the next level, by adding garlic, lemon, beetroot and olive oil to the mix.
  • Bewildering press conferences where the health minster even resorted to speaking Russian and chastised the media when she did not feel like dealing with tough questions.
  • Corrupt individuals and companies circling like salivating hyenas, desperate to make a quick buck with all kinds of untested quack potions as a replacement for anti-retrovirals. Some unethical like Virodene, others shady charlatans like Matthias Rath.
  • A Cabinet who failed to hold either the President or the Minister accountable, or not until many had died or suffered.
  • A President happy to sit in the shadows and let the Minister take the body blows.
  • Showing a middle-finger to the Constitution by failing to honour the Right to Healthcare.
  • Tacit support of views that harmed mostly poor people.

We ended up with a poisonous concoction which not only made us the laughing stock of the world (a quick google of the 2006 Toronto AIDS conference will offer enough evidence), but also spread terror, confusion and heartache among poor people who could not afford the lifesaving medicine. These vulnerable people were on the receiving end of so many conflicting messages from their leaders, people who they looked up to for guidance.

Fast forward a couple of years to 2017 and again we have a similar recipe albeit with slightly different ingredients.

  • A President in denial and gone rogue on administrative procedure, social good, the Constitution, his responsibilities as a custodian and human rights.
  • A morally corrupt Minister who becomes the President’s henchwoman.
  • A President who denied there was a crisis (no crisis until there is a crisis, he told Parliament).
  • A Minister who with great zeal spread the message of confusion and stubborn denial with no thought for the poor who deal with the uncertainty of not knowing whether or not their grants will come.
  • Bewildering press conferences where the Minister and her spokesperson at times refused to speak English, take legitimate questions from the media, opting to rather chastise them for doing their jobs.
  • Corrupt individuals circling like hyenas, knowing that the social grants contract in this country is worth Billions.
  • A Cabinet who failed to hold either the President or the Minister accountable.
  • A President happy to sit in the shadows and let the Minister take the body blows.
  • Showing a middle-finger to the Constitution by failing to implement a Constitutional Court order to stop Cash Paymaster’s contract.

But perhaps that is where the similarities end. Many have tried to understand how Mbeki, by all accounts an intelligent man, became so swayed by the denialist theories that he was willing to risk his legacy, to reject science, science that actually saves people’s lives. Tshabalala-Msimang, a medical doctor by training, went from a poster child of good health to a pariah who did not miss an opportunity to promote her vegetable remedies. Whatever motivated their deadly denialism, it seems unlikely that corruption had much to do with it.

In this regard Jacob Zuma and and Bathabile Dlamini are not quite the same as their earlier Comrades in that one cannot but think that the absolute chaotic handling of the social grants matter, has a stench of corruption. A stink of lining the pockets of friends and ensuring that money, lots of it, ends up in the right or wrong places, depending on which team you back.

But corrupt or not, the past and present again converge when both the Mbeki and the Zuma teams, chose then and again choose now, to turn their backs on the cries of the poor. To block their ears and continue to operate in a “lala-land” where there is “no crisis” and we live in a “funny” democracy.

But now, as then, there is nothing funny when a President turns his back on the poor. There is nothing funny when Ministers, heading up Departments which  exists to serve the poor, are prepared to laugh off legitimate concerns and play silly buggers with semantics.

How galling it was to receive a graphic on Whatsapp last week, Minister Dlamini grinning in the one corner. A massive hashtag in bold, red letters #SASSACARES screaming at the receiver.

A line which reads” All social grants will be paid out from the 01 April 2017 as promised by our caring Government”.

“Caring” Government? Not then, not now. Now as then, government has lost touch with the reality faced by poor people in South Africa. For this, Zuma and Dlamini will pay the price as Mbeki and Tshabalala-Msimang did – only this time, another decade further into ANC rule, they will also likely drag the party down with them.

South Africa: Sexual violence in Platinum Mining Belt a major driver of HIV

Press Release

By Medecins Sans Frontieres

Seattle/Rustenburg – New analysis of data detailing the extent of sexual violence in the Rustenburg area indicates that one in five HIV infections (approximately 6,765 of all female cases) and one in three cases of depression among women (5,022 cases) are attributable to rape and intimate-partner violence (IPV), while one in three women inducing abortion (1,296 cases) was pregnant as a result of sexual violence.

These startling findings, presented at in Seattle at the annual Conference on Retroviruses and Opportunistic Infections, follow from an in-depth 2015 survey conducted by MSF among more than 800 women living in communities along the mining belt where the health consequences of sexual violence remain largely unaddressed and demand urgent action.

Much additional suffering could have been prevented if survivors had been able to access a basic package of healthcare services, but according to MSF epidemiologist Sarah-Jane Steele, “Opportunities are missed each day to prevent HIV infection, psychological trauma, and unwanted pregnancy for victims of sexual violence in on the platinum mining belt, because there are too few health facilities with the capacity to provide essential care.”

As South Africa finalizes its next five-year National Strategic Plan (NSP) on HIV, TB and STIs (2017-2022), MSF is calling for the inclusion of ambitious targets for increasing sexual violence survivors’ access to medical and psychosocial services at health facilities. Key interventions include providing post-exposure prophylaxis (PEP) to prevent HIV and other sexually transmitted infections, psychosocial support including trauma counselling,emergency contraception, other basic medical services (e.g. first aid), and the option of forensic examination.

“It is not unrealistic to expect, at a minimum, that every sub-district in the country has a health centre that can provide an essential package of care to mitigate the consequences of rape and other sexual violence,” Steele says.

Alongside increased access to services there is also a need for health promotion within communities, as half of the women MSF surveyed in 2015 did not know that HIV can be prevented after rape if PEP is received within 72 hours. The situation could be helped by a two-pronged approach of establishing more health facilities as points of entry for sexual violence care services, while raising awareness in communities about the benefits of accessing care.

A note on research methodology:

MSF’s 2015 survey of more than 800 Rustenburg women between the ages of 18-49 established that one in four have been raped in their lifetime, whereas approximately half have experienced some form of sexual or intimate partner violence. Initial findings from this survey were released in the report Untreated Violence in August 2016. Having established the prevalence of sexual violence, MSF aimed to determine the attributable burden of disease. This was achieved by using World Health Organization estimates of disease risk to determine population attributable fractions (PAFs). The PAFs were then applied to the population distribution figures for the area, as well as local disease prevalence estimates obtained through literature review.

About MSF in Rustenburg
MSF has been present in Rustenburg since July 2015, when the organization began supporting the North West Department of Health (DoH) to expand access to care for survivors of sexual violence living in the shadows of the area’s platinum mines. Services offered at primary healthcare facilities called “Kgomotso Care Centres” (KCCs) include PEP to prevent HIV and other sexually transmitted infections, and psychosocial support and counselling for survivors. Patients requiring more advanced medical, psychosocial or legal services are referred to hospitals, other government departments and/or community support structure.

This Press Release was published at MSF

Talking to teens about sex and protection

By Nomatter Ndebele

It was business as usual at the International Aids conference in Durban in July 2016. The South African Minister of Health was about to address a plenary session when two young girls took to the stage. One made a beeline for the Minister and the microphone, while another stood with a placard about the effects of a lack of sanitary towels. Together, the Treatment Action Campaign’s (TAC) Ntombizodwa Maphosa and Tina Power set the agenda for young people at the international aids conference.

It was not a new conversation. For years, health activists have called for condoms and sanitary wear to be available in schools but their pleas have fallen on deaf ears. The only thing that changed were the numbers, and as the saying goes, numbers don’t lie.

The government’s National Strategic Plan (NSP) for 2012-2016 had envisaged an increase in male condom distribution from 492 million in 2010-11 to 1 billion, and 5.1 million female condoms in 2010-2011 to 25 million by 2016. Despite having set these goals four years ago, new infections are still on the rise.

Providing condoms in school has been a contentious issue within South African communities for a long time. Some argue that giving condoms to schoolchildren will only encourage them to become sexually active and therefore put learners at risk of teenage pregnancy as well as the transmission of diseases. Others have argued that creating easier access to condoms while including more in-depth sexual education within the life orientation curriculum, will help to curb the incidence of teenage pregnancy and HIV/AIDS infection rates among the youth.

The TAC has been at the forefront of the call for condoms and a comprehensive sexual education programme in schools. The TAC’s biggest concern, as explained by the National Women’s representative, Portia Serote, is that the law pertaining to the sexual rights of children is so contradictory that it is difficult to implement an effective plan to address the needs of learners for sexual education and access to contraception. One section of the Constitution, for example, defines a minor as being anyone under the age of 18, but another section states that having any sexual relations with anyone under the age of 16 is statutory rape.

The policy on condoms in schools gives power to school governing bodies (SGBs) to decide on whether or not they want condoms to be made accessible to learners. St Enda’s Secondary School in Johannesburg is one of those that has decided not to do so.

When interviewed by Spotlight, the principal, Moti, is somewhat dismissive of the idea, believing that it would be inappropriate, and should not even be promoted to children under the age of 18: ‛We wouldn’t want that,’ he says. ‛We are already dealing with a lot of external factors.’ The school is situated in the heart of Hillbrow and students and teachers are surrounded by drug dens and easy access to alcohol. For the principal, the last thing they want to do as a school is add to the long list of issues they battle with daily.

Although this is the official policy of the school, there are teachers who think providing access to condoms to pupils would not be a bad idea. One such educator is Afrikaans teacher Lenshur Abdul, who has also become the unofficial life orientation teacher.

‛At grade 11, there is no sexual education covered in the curriculum,’ she says. When students come knocking on her door, Abdul does her best to answer questions around sexuality, and sometimes refers them to the biology teacher.

According to Moti, the school also has the services of counsellors who engage with the learners in a general forum, to identify any issues that they may have. If necessary, children are referred to a social worker. The principal points out that although these programmes are available, he is not always privy to the information due to patient/counsellor confidentiality.

This year, reportedly, four girls have had babies, and two are currently pregnant. These numbers are, however, disputed by Moti, who believes that two girls fell pregnant this year and that one is currently pregnant. The principal confirms that learners who become pregnant are allowed to return to school.

‛How can we not talk to the children about these issues?’ asks Abdul. ‛In school we are trying to prepare them for the world ,which has HIV/AIDS, accidents and cancer,’ says Abdul.

Although debates continue about the morality and in some instances the feasibility of providing condoms in schools, the statistics continue to paint a worrying a picture. In South Africa, 2,000 schoolgirl pregnancies a week are reported – there is clearly a problem.

The MEC of Education, Panyaza Lesufi, says that recent statistics are enough to convince him that it is time to overhaul the entire approach to sexual education and access to contraceptives in schools. ‛We need to radically change whatever policy we had before, the statistics show that we are losing the battle, if 2,000 girls are newly impregnated, we cannot glorify such a policy,’ he says.

‛Pregnancy is not a scary thing anymore’

Sanele Zwane and his grade 11 friends, Lerato Ndlovu and Eva Malie, speak freely about pregnancy. Earlier this year a classmate of theirs fell pregnant. Zwane tells us, when she discovered she was pregnant, she started telling all the people in her grade not to be surprised if they didn’t see her later in the year, as she was going to having a baby. ‛She literally told everyone, even people she isn’t close to,’ Zwane recalls.

It is a reality they all face, and they are well aware of the various forms of contraception. ‛I think the Government just wants to cut down on the levels of teenage pregnancy, all they are really worried about is getting pregnant, but there is no counselling around sex,’ says Ndlovu.

‛Not talking about it (sex) is not helping us,’ adds Malie.

For these learners, what matters most is counselling that will provide them with emotional support, to prepare them to engage in sexual intercourse.

‛Nobody speaks to us about what it actually means [to have sex] with someone,’ says Ndlovu. Her beliefs around sex and abstinence are anchored in her religion. She believes that sex is sacred: ‛You can’t just go around giving everyone a piece of your soul,’ she explains.

Despite having different reasons for wanting to abstain from sex, the group is united in their view that a lot more should be done to provide social and emotional support about sex and teenage pregnancy. For most children, it is not easy to have a conversation about sex with their parents, there are questions that cannot be asked.

‛You know how our parents are, if you even try and bring these issues up, you are shut down immediately,’ says Zwane.

The generational gap between youngsters and parents is also evident between learners and the creators of the educational curriculum. ‛Our ministers and the MEC are from the 80s – they actually need to connect more with the youth,’ says Zwane.

‛I feel like the people who create these textbooks don’t even consult the youth,’ Malie adds.

Although Zwane and his peers are well aware of contraceptive methods, they have not thought as far ahead as the prevention of HIV/AIDS. For these 16-year-olds, pregnancy is a bigger scandal and an even bigger shame. ‛People can see your tummy, but nobody will ever know you have HIV/AIDS.’

A focus on HIV/AIDS advocacy is an issue that Health MEC Panyaza Lesufi has also identified. ‛We cannot wait until the 1st of December to start talking about HIV/AIDS; no schools should go without having posters about HIV/AIDS,’ he observes.

For Lesufi, the question of condoms in schools is not a moral question. ‛This has nothing to do with morals, it’s about taking collective responsibility,’ he says. We need to discuss the use of alcohol, we need to discuss drugs and sexual intercourse as being channels through which our children find themselves faced with issues of teenage pregnancy and being infected with HIV/AIDS.

 

Return of the quacks

By Anso Thom

For a long time, South Africa has been a country where charlatans are able to flourish and peddle dangerous remedies for all kinds of ailments.

Take a trip on a public train or a walk down a road in our city centres and you will easily find pamphlets marketing remedies for anything, from enlarging penises to bringing back lost lovers. Even more seriously, the city lamp poles are plastered in posters offering cheap pregnancy termination services. Poor people stand on street corners for hours offering pamphlets and directions to the closest ‛doctor’. All illegal, all dangerous, but almost all operating with impunity.

The reasons these quacks proliferate are many. Not so long ago we had a president and health minister who created an enabling environment for them. President Thabo Mbeki questioned the efficacy of lifesaving anti-AIDS medication, told people they were toxic, and dragged his feet when it came to signing into policy the rollout of these medicines for the thousands who were suffering and dying.

His Health Minister, a medical doctor, Dr Manto Tshabalala-Msimang spoke often and passionately about the so-called healing properties of beetroot, garlic, lemon and olive oil. People sniggered, referred to her as Dr Beetroot and shook their heads.

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Take a trip on a public train or a walk down a road in our city centres and you will easily find pamphlets marketing remedies for anything, from enlarging penises to bringing back lost lovers. Photo:Wikipedia

But what Mbeki and Tshabalala-Msimang had done successfully, was to sow seeds of doubt. Many, many people living with HIV, desperate for a remedy not only to control the virus, but to exorcise it from their battered bodies, turned to the quacks, who promised to do so. What was criminal was that these ‛doctors’ were operating with the tacit support of the leaders who had the power to close them down.

They included the likes of German multi-vitamin peddler Matthias Rath, KwaZulu-Natal truck driver and seller of a concoction called uBhejane (the recipe of which he said was revealed to him in a dream by his ancestors) Zeblon Gwala, the likes of Tine van der Maas a barefoot Dutch nurse who pushed lemon, garlic, beetroot and olive oil concoctions at the behest of the health minister, or Belgian eccentric Kim Cools who continues to claim that he had injected himself with the HI virus but remains negative due to his remedies (see previous Spotlight).

Activists told stories and journalists wrote articles of the heartache these people had caused – the undignified deaths of mothers who left families orphaned as they dumped their antiretrovirals for Rath vitamins, the fatal and excruciating suffering of the much-loved DJ Khabzela after the health minister sent Van der Maas to heal him, or the illegal Rath clinical trials conducted on poor people, made to strip, have their photographs taken and give their blood.

And then there was Virodene – a powerful chemical detergent peddled by a bunch of crazy scientists as a cure for AIDS, which had as its cheerleader President Mbeki.

Mbeki and Tshabalala-Msimang were not alone in the rejection of proven treatments. Tshabalala-Msimang’s MECs either turned a blind eye to the fact that people were being used as guinea pigs, or did everything in their power to deny poor people access to lifesaving drugs.

Sibongile Manana was the MEC of Health in Mpumalanga at the height of the denialism years from 1999 to 2003. Now she is a Member of Parliament. As MEC she gave the Greater Rape Intervention Project (GRIP) in Nelspruit hell. She bullied Rob Ferreira Hospital’s Dr Thys von Mollendorff, a gentle caring doctor whose only crime was to try and help rape survivors. He offered them a dignified, safe space in his hospital where they were given the option of accessing legal, tested antiretrovirals to prevent infection. But Manana hounded Von Mollendorff and GRIP out of the hospital and treated them like criminals, dragging them to court and evicting them from the hospital.

Penny Nkonyeni, MEC for Health in KwaZulu-Natal during the Manto years, often rolled out the red carpet for her Minister. She printed quack pamphlets for distribution, hounded doctors who dared to offer pregnant mothers the option of treatment to prevent transmission of HIV to their babies, and she was a willing partner in finding crooked NGOs prepared to run illegal clinical trials using quack concoctions. Nkonyeni was later the speaker in the provincial parliament and Education MEC before being removed in a Cabinet reshuffle earlier this year. She indicated she was joining the private sector.

The examples are many and for those who were there, these memories are painful. Those who were there made a pact saying, never again.

Fast forward to 2016.

Dr Benny Malakoane is a medical doctor and was until recently Health MEC in the Free State. Over a three-and-a-half year period he oversaw the collapse of the public health-care system in the province, and turned the state machinery on elderly community health workers who were asking inconvenient questions, while facing multiple charges of fraud and corruption (these cases are still ongoing due to continued delays).

It now appears that, much like Manana and Nkonyeni, Malakoane has enabled a quack to operate with impunity in a state hospital, using unsuspecting state patients as guinea pigs in an illegal stem cell trial. In fact, this operation had been signed and sealed in a three-year contract which was due to further impoverish the Free State health system and enrich the shareholders of ReGenesis Health with millions of rands.

Questions must be asked over the enthusiasm of the MEC in signing this contract and personally overseeing its implementation. One has to ask how the MEC could be so enthusiastic in rolling out an untested stem cell intervention in the Pelonomi hospital’s orthopaedic department while his health system is collapsing and failing to get basic medicines to clinics and hospitals.

The Medicines Control Council led by Professor Helen Rees intervened within days of health minster Dr Aaron Motsoaledi becoming aware of this contract. It is refreshing and heartening to know and see in action the difference an ethical, incorruptible and no nonsense health minister and medical doctor can make. If only we had someone like Dr Motsoaledi in the early 2000s.

The MCC swiftly closed the ReGenesis operations at Pelonomi and have made it clear that according to the information they have, an illegal trial was being conducted, using an untested intervention.

For now, the operations have been brought to a halt and the Free State Department of Health has cancelled the contract. The MCC has sent ReGenesis a comprehensive list of questions, and Free State Premier Ace Magashule has been left with the task of holding his MEC accountable. Don’t get your hopes up.

Within a day of the information being revealed by Spotlight and the investigative television show, Carte Blanche, Free State premier Ace Magashule shifted his Health MEC to Economic and Small Business Development, Tourism and Environmental Affairs, and installed his former Police, Roads and Transport MEC Butana Kompela as the health custodian.

However, we cannot allow another quack enabler to get away without being held accountable.

The Free State Department of Health and Premier Magashule have to provide answers to some very serious questions. For instance, why did the Free State Department of Health publish a tender for stem cell therapy in the first place? On what basis was ReGenesis appointed in June? Why was Malakoane so closely involved with the project, chairing the board that would provide oversight of the work and research done by ReGenesis?

Simply shifting Malakoane to another post doesn’t make these questions go away. For there to be any accountability we need answers to these questions. The people of the Free State are not guinea pigs. They are not pawns in an alleged scam to enrich charlatans.

Not on our watch. The ball is in your court Premier Magashule

Editorial: Three months to get it right

By Anso Thom and Marcus Low

Delays at the South African National AIDS Council (SANAC) has meant that the new NSP (National Strategic Plan) will now only be ready in March 2017. While the delay itself is not of any great concern, the kind of plan that will be produced by an unsettled SANAC and a weakened, unrepresentative civil society is concerning and brings into question the very idea of SANAC and the NSP. Already we are hearing rumours of a back-track on various things contained in draft zero of the NSP – including a back-track on the recommendation to decriminalize sex work.

There is a risk that over the next three months an NSP will take shape that will lack many of the targets and deadlines it needs to make an impact. It is understandable that government doesn’t want what they see as an external plan to interfere with their internal plans. But civil society should not accept this. We need leaders who can stand up to government, when needed work with them, but ultimately demand we do better on key issues such as sex work, condoms in schools, active case-finding for TB and community healthcare workers. Unfortunately, from what we’re hearing, civil society is capitulating on these issues without much of a fight.

Even though many critical issues will be mentioned in the eventual NSP, mere mentions are not enough. We need plans, timelines and budgets. We need an NSP that is highly focused and concrete. The decriminalization of sex work, for example, has been on the agenda for years – but simply having it on the agenda is not enough. We need to have a roadmap from where we are now to an actual amendment in our laws. Without such a roadmap, we do not in fact have a plan.

Similarly, setting targets for providing more people with HIV treatment and helping people adhere to treatment is all good and well, but targets are not a plan. How do we improve treatment adherence? Do we need to employ more community healthcare workers to provide adherence support and to trace patients who default? We think we should. How do we provide differentiated care through adherence clubs, if we don’t pay people to run those adherence clubs? How do we ensure there are no drug stockouts which endanger trust in the health system. How do we build a Medicines Control Council that can cope with the workload or registering new drugs and investigation unlawful treatment and activities? These are the issues the NSP must map out in detail and force action on. It should make the case so clearly and convincingly that the Department of Health and treasury has no option but to fund it.

In the same way, we can say whatever nice things we wish about active case-finding for TB (possibly the most critical TB intervention we are not implementing), but if we don’t map out what that means in the real world then it will be just an another aspirational target. The NSP has to make it explicit that we can’t do active case-finding without people and that we need to train and pay people to start doing active case-finding. In two words Community Health Workers.

Another critical area on which the new NSP must move the dial is HIV and pregnancy prevention in schools. We need a programme that is explicit about the right to comprehensive sex education and the right to access condoms – the latter being a right in terms of the right to access healthcare services. But again there appears to be no clear plan on the table on how we get from here to there.

If the new NSP doesn’t deliver on these critical issues with detailed timelines and budgets then it will be hard for us to support it. As has become clear in recent issues of Spotlight (previously NSP Review), our HIV and TB response is at code red. Our public healthcare system is in crisis. We need a plan that deals with this emergency seriously and based on the best available evidence. Anything less is not good enough.

A difficult political environment

The development of the new NSP comes at a very difficult time in South Africa’s history. Amid the Public Protector’s State Capture Report, the various scandals relating to the Gupta family, spurious charges against Finance Minister Pravin Gordhan and widespread calls for President Jacob Zuma to stand down, Deputy President and SANAC chair Cyril Ramaphosa has had a lot on his plate. In this fraught political context the new NSP has hardly elicited the national conversation or leadership that is needed – that it is needed is clear from the fact that around seven million people in South Africa now live with HIV and tens of thousands still die of tuberculosis every year.

To some extent, our HIV and TB response is also falling victim to the wider crisis in our politics. It is thus very encouraging that Health Minister Dr Aaron Motsoaledi and deputy Minister Joe Phaahla took a public stand against corruption when late in October they publically declared their support for Minister Gordhan. The spurious charges against Minister Gordhan have since been withdrawn. We trust that these leaders will not lose their jobs or be victimised for having taken this correct and principled stance. We will watch closely.

While the fight against corruption and state capture in South Africa is urgent and critical, the development of the new NSP is also critical. We urge the Deputy President, the Minister of Health, the rest of the national cabinet and all provincial cabinets to engage with both these urgent issues. Just like corruption, HIV and TB impacts the lives of millions of people in this country.

While the big picture politics are deeply concerning, there are also some signs that all is not what it should be at SANAC. The position of SANAC CEO Dr Fareed Abdullah was recently advertised amid rumours of a campaign to replace him with a person more compliant to the whims of some in government. Whether there is any veracity to these rumours we do not know, but it has reached us from various sources.

What is clear though is that in the current political context we need SANAC to be stronger than ever. Abdullah has done well in steering SANAC over the last five years and much of what concerns us at SANAC is beyond his control. Removing him now will threaten operational continuity at SANAC – something we cannot afford.

Civil society leadership crisis

While operational continuity is critical at SANAC, we urgently need new energy and ideas on the political side. This political energy has to come from civil society leaders at SANAC. Many people we have spoken to have expressed their disappointment with the failure of the current civil society representatives to raise critical issues impacting on ordinary people living with HIV and/or TB over the last five years. There is a strong feeling that SANAC needs a civil society sector that is fully representative, that speaks with the voices of the marginalized, speaks with the voices of the poor and that the only way in which this can happen is if the current civil society is disbanded.

The new NSP provides an opportunity to make a clean start where we avoid the pit-falls of the past and ensure that people living with HIV and TB in South Africa feel they are properly represented. One way to avoid these pit-falls is to set some guidelines of what we expect from our civil society representatives.

To start with, we should insist that civil society leaders must represent constituencies and not just themselves (academics and other technical experts can of course contribute in their personal capacities to technical questions). Ideally, we want people who have been elected by affected people and who must account back to those people on what they have or have not done at SANAC.

Secondly, we should insist on transparency regarding the financial affairs of all civil society representatives. Where people represent NGOs, the finances of those NGOs should be open for public scrutiny – as is the case with all NGOs. If people do business with government, then that potential conflict of interest should be disclosed.

Looking back, there is much to be proud of, but what lies ahead is what matters now and what we do in the next three months will set the course of the next five years.

 

No end to AIDS without the beginning of a new world

Open Letter to AIDS Activists across the Globe

By Mark Heywood

Dear Compatriots,

It will soon be six months since the circus of the International AIDS conference left Durban, KwaZulu-Natal, in South Africa. The tents have long been disassembled. In the meantime, a staggering 600,000 more people have died of AIDS, almost all of them in developing countries. In 2015, 1.8 million people died of the ancient and treatable disease of tuberculosis, according to the World Health Organisation (WHO) . That’s way more than the equally horrific almost half-a-million (450,000 people) murdered since 2011 in the Syrian civil war.

Activists tried to say loudly in Durban that we are nowhere near ‘the end of AIDS’ and its associated epidemics. There are still two million new HIV infections a year globally. Twenty million additional people will still need antiretroviral treatment in the next five years if they are to avoid death. But there’s not enough money being provided – and not enough political will to make the money available.

These frightening statistics are not making headline news. In fact, they hardly make any news at all.  After all, who cares? These are mostly the lives of the world’s black and poor people. They are people who weren’t carrying guns, threatening white lives, disrupting the geo-politics of neo-liberalism.

Well you should care, because we are the world’s other power: its civic power.

But we are not being heard. Why?

The world in which AIDS had its infancy in the 1980s and 1990s is not the same world in which it will hopefully experience its old age and demise. There are new political threats, most obviously one soon to be United States President Donald Trump. There are new instabilities and rising authoritarianism. Democratic space is being shut down in many countries of Asia and Africa.

These political changes are of profound importance to determining whether we end AIDS or whether AIDS ends a lot of us. These changes require activists to re-look at our strategy and methods. One of the areas where we have to reconsider is how we tie HIV prevention and AIDS care to human rights and what exactly that requires of us.

The Times are ‘a changing

During the 1980s and 1990s there was a valiant and largely successful struggle to frame AIDS as a human rights issue and to entrench a ‘human rights approach’ to AIDS. ACT-UP and the Treatment Action Campaign (TAC) took AIDS onto the streets. Public health experts and lawyers like Jonathan Mann, Michael Kirby, Edwin Cameron and many many others forced the powers of the world, governments in particular, to understand that risk of being infected with HIV was linked to the degree of one’s marginalization and criminalization by the state.

We pointed out that protecting the non HIV-infected required that you first protect the rights of people who had already been infected. A non-discriminatory environment would create the openness needed to treat AIDS. This was termed the so-called ‘AIDS paradox’.

Fighting for the human rights of people with AIDS required a mighty battle. But in some ways it went with the flow of the times. Neo-liberalism was a new kid on the block and for its own reasons it promoted the protection of some human rights – as long as they didn’t extend too far. For a short time demanding civil and political human rights was seen by developed capitalist countries as a way to prise open markets and allow The Market access to populations of virgin consumers.

Activists seized the time and we were able to develop and have adopted foundational policies like the UNAIDS/UNCHR International Guidelines on HIV/AIDS and Human Rights. However there was never, it must be pointed out, money to invest in systems and structures for the formal implementation of human rights at state level. That is partly why there has been so little measurable progress on improving the rights of what UNAIDS now calls ‘key populations’.

During the first decade of the 2000s, as a result of activists’ struggle for access to treatment, we made some limited progress in curtailing corporate power over pharmaceutical Markets; even forcing the World Trade Organisation (WTO) and rich governments to accept the principle that poor governments had a right and duty to intervene to reduce medicines prices.

Thus the 2000s became the golden age of lip-service to human rights.

On World AIDS Day 2016 AIDS remains a human rights issue. Discrimination(s) against people with AIDS continue. ‘Key populations’, women in particular, are denied equality.

But AIDS is more than just a human rights issue. AIDS is a social justice issue. The two overlap – but they are not the same.

In this new context UNAIDS and many countries in the world have adopted the bold targets of 90- (% of people knowing their HIV status), 90- (% on ARVs) and 90- (% with undetectable viral load) and Zero discrimination. But there is an elephantine truth hiding in the room next door, one that UNAIDS will soon discover. It is that we’ve reached a point in the response to AIDS where we can’t go much further without dealing with the social injustices and inequalities that are the real social determinants of HIV and AIDS.

The modern markers of HIV infection and death from AIDS are poor schooling, poor housing, poor health services, poor access to justice, poor access to employment. Discrimination is not only a state of mind – of homophobes and selective moralists. Discrimination is equally a state of economy.

Discrimination and social injustice are a state of economy

What do I mean by that?

In South Africa per capita expenditure on a child in Limpopo, one of our poorest and most corrupt provinces, is R1,117 per annum (less than $80). In a private school in Johannesburg per capita expenditure is in the region R200,000 ($14,285). In poor schools the incidence of HIV and teenage pregnancy is very high. In the rich schools it barely exists.

The same can be said of gross inequality in access to health care services and gender inequality. The state of many hospitals in South Africa was recently captured in an article by Justice Malala, one of our political journalists and commentators  . On a more scientific basis, facility audits conducted by the Office of Health Standards Compliance (OHSC) have shown that “in the four years to March 31 2016, only 89 of the 1,427 public hospitals and clinics had met the office’s 70% pass mark.” Whilst it is true, as we often say that ‘AIDS is not a health issue alone’, AIDS prevention and treatment depends on a functional public health system.

Women and girls bear the brunt of all this misery. Maternal and child mortality may have gone down – but not by enough. In South Africa there is an epidemic of infant mortality arising from negligence at birth in public hospitals. This takes more infant lives now than HIV. Consequently, when activists and donors proclaim a selective concern with women’s lives, many women will not hear them. Why, they will ask do we want to protect them and their children from HIV but not from death during childbirth?

Good question.

They may also ask whether what happens to women in hospitals or girls in schools is not simply a symptom of what happens to the female sex throughout life?

Good question too.

In June this year I wrote an open letter to South Africa’s Deputy President, Cyril Ramaphosa, in his capacity as Chairperson of the SA National AIDS Council (SANAC) . In it I argued that in view of what we know about the extremely high rates of HIV infection among girls, schools should become the focus of a huge mobilization of information, health services and better quality schooling. I pointed out:

“There are 25 741 schools in our country. These should be the sites where we concentrate the struggle against HIV. We should say that within six months every school should offer continuous quality sexuality education, especially about gender and sex, voluntary male circumcision, male and female condoms, Pre Exposure Prophylaxis, HIV and TB testing, access to HIV and TB treatment and support for adherence. If we did this, we would win.”

Unfortunately, that advice seems to have been lost on the AIDS experts. The National Strategic Plan 2017-2022, whose outlines will be presented in Johannesburg today, is nigh impossible for an ordinary person to decipher or work out its real priorities on HIV prevention and care.

AIDS as a social justice issue – the implications for activism

In conclusion, if we accept that AIDS is a social justice issue, what implications does it have for activism?

In essence it means that fighting for quality basic education for all children regardless of their class must become a primary strategy for HIV prevention. Similarly fighting for quality public health services, properly funded, equipped and staffed healthcare facilities must become a priority strategy for stopping people from dying of AIDS or TB.

Activists also must take some time to look at ourselves and at our own culpability. In the nineteenth century Marx gave the term ‘petit-bourgeois’ to people who had a bit of property but no real power. In return they sided with the rich even though their real interests were with the poor.

In the twenty-first century, the world is being irreversibly damaged and dominated by the one percent, the elites. But are many activists not its petit-elites? We are people who accept certain trappings of privilege, to keep us tame. In return we shut our mouths in the face of outrages. We accustom ourselves to the horrors of the world and although we will rage on AIDS, we will not show the same solidarity with the people of Syria or the migrant populations trying to enter Europe.

We must escape from the hypocrisy of convenience and shake off the mindset of beggars.

For example, we have several million reasons to be thankful for the United States President’s Emergency Fund for AIDS Relief (PEPFAR). These are lives saved. But what the United States government gave through PEPFAR with one hand, it took with the other through an ill-advised and anti-poor foreign policy and through promoting and protecting elites whose reckless disregard of our world deepens inequality and suffering.

Do we understand this? Do we say this?

Finally, we must shout-out about how the roots of social injustice lie in politics.

AIDS activism cannot ignore the great political challenges of our time. BREXIT, the election of Donald Trump, the growing drift towards racism in Europe must all be a wake-up call (). Trump’s election changes the game.  What you see is now what you get. Trump is very different from the Clinton team, who talked left and acted right; who gave with one hand what they had stolen with another and then expected Nobel Prizes for their generosity. His Presidency will mark the end of the age of insincerity.

As a result AIDS activists need urgently to forge an agenda and a programme of action that talks to the world we live in, that is pro-poor, that recognizes our great achievements but also acknowledges our recent demise. People who will campaign the hardest will be the people who have nothing to lose. We need new allies. We need to look for the centres of civic power, such as in the trade unions (the International Trade Union Confederation, for example, has 175 million members worldwide), the environmental justice movements and organisations of faith.

During the 2000s we organized transnationally and developed a transnational agenda on crucial rights questions, particularly access to medicines. Yet today the pharmaceutical companies are running rough-shod over us.

But access to medicines is not just an AIDS issue, it’s a health and equality issue. Ask Tobeka Daki, who you may have seen leading demonstrations at the AIDS Conference in Durban against Roche. Or rather don’t.

Tobeka is dead now . According to TAC, Tobeka needed the anti-cancer drug Trastuzumab but “could never access it due to its high price.” A few months ago her breast cancer spread to her spine. Her doctor previously wanted to put her on Trastuzumab. We do not know if Trastuzumab would have saved her life – but because of the high price she never had the opportunity to try.”

However, international organisation starts at home. It starts with activism in your community, wherever that community is, whatever part of the world you live in. Activism is about building self-reliant communities that know their rights and will confront injustice. It is about solidarity.

Activism promotes constant citizen engagement with political and economic powers to ensure accountability and quality of public services. It builds self-reliant branches of self-reliant people.

And the premise of our renewed struggle must be that that there’s enough money for universal access to health care and AIDS treatment and for quality education and access to sufficient food. As US playwright and activist Larry Kramer said so many years ago at the start of this epidemic It is “political choices” that deny this money to communities. Equality won’t be given to the poor on a plate.

It must be demanded.

In truth there’s no end to AIDS before the beginning of a new world.

Yours sincerely,

Mark Heywood
Activist
South Africa

Spotlight’s top 8 highlights of AIDS 2016

By Marcus Louw

As the dust settles in Durban and the circus moves on, we reflect on a few of the bigger moments of AIDS 2016. Below are some of the highlights we think may turn out to be significant.

 

  1. Ban Ki-Moon in town to talk medicines

For a few hours on Monday 18 July United Nations Secretary-General Ban Ki-Moon was in Durban. He was there to talk about HIV, but also to talk about access to medicines. Late in 2015 he had appointed a High Level Panel (HLP) to consider problems with access to medicines and the lack of innovation in important disease areas. That he chose to travel to Durban on the eve of receiving the HLP’s report on these issues is significant.

On Monday morning Anele Yawa, General Secretary of the Treatment Action Campaign, presented a memorandum to Ban Ki-Moon urging him to take steps to “never again let people die because they cannot access medicines”. If part of Ban Ki-Moon’s mission in Durban was to take the temperature ahead of receiving the HLP report, he would have found it to be scorching hot. Whether that has any influence on what happens with the HLP report and to what extent the report and its recommendations lives or dies within the United Nations remains to be seen.

  1. Close to 10 000 people in ‘Treatment for All!’ march

In the moment last week most reminiscent of 2000, close to 10 000 people led by the Treatment

Close to 10 000 people led by the Treatment Action Campaign marched to the Durban Convention Centre
Close to 10 000 people led by the Treatment Action Campaign marched to the Durban Convention Centre

Action Campaign marched to the Durban Convention Centre on Monday to hand memorandums to various high-ranking persons in the AIDS world including UNAIDS chief Michel Sidibe, Pepfar head Deborah Birx and deputy president Cyril Ramaphosa. The march was convened under the banner of “treatment for all now!”. Activists emphasised that 20 million people living with HIV need treatment, but do not have access to it. The march showed that large numbers of people can still be mobilised to demand that leaders do better in the AIDS response. (You can read the march memo here)

 

  1. UNAIDS U-turn on “end of AIDS” language

One of the big stories of AIDS 2016 is the shift away from “end of AIDS” rhetoric from UNAIDS. In a move welcomed by activists, UNAIDS Executive Director Michel Sidibe said that we are not currently heading toward an end to AIDS and TB. Along with a number of other speakers at the conference he highlighted the reduced funding available for the AIDS response and the fact that the rate of new HIV infections is not coming down. But, whether the change of course from UNAIDS together with the show of power on the streets of Durban will be enough to push the global AIDS response back on track is unclear.

 

  1. Disappointing results from TasP trial

There was great hope that the TasP (Treatment as Prevention) trial would show that providing more people with treatment earlier will reduce the rate of new infections in a community. Unfortunately, this important trial failed to show a significant reduction in new infections in communities with early treatment. The problem appears to be to get enough people tested and then to get those people to initiate treatment. In better news, new findings from the Partners trial confirmed that people who are stable on treatment with undetectable viral loads do not transmit HIV to their sexual partners. The sobering message from TasP then is that we’ll need to do a lot more to actually get people tested and on treatment, but Partners confirms that getting it right will have a huge impact on new infections.

 

  1. A potential turning point for community healthcare workers

In another notable statement from UNAIDS, Sidibe said that the world needs to train a million more community healthcare workers (CHWs). He said that South Africa should have 200 000. This is significant since the line from the Minister of Health in South Africa has until now been that 40 000 CHWs are enough for South Africa. It is now up to activists around the world to use Sidibe’s comments to push for the training and employment of many more CHWs.

 

  1. Questions about young women and girls

Much lofty rhetoric at this year’s conference focused on the extremely high infection rates in young women and girls. Much of the rhetoric was of course not from young people. When young people did speak out – interrupting South African Minister of Health Dr Aaron Motsoaledi – it was to say they want access to condoms and sanitary towels in schools.

 

  1. Speech of the conference delivered by Justice Edwin Cameron

On Tuesday morning Justice Edwin Cameron delivered the prestigious Jonathan Mann lecture. Apart from being humorous and moving, the speech had a remarkable moral force and clarity. One of the disappointments of AIDS 2016 was that more people did not name and shame countries for discriminatory laws that undermine both the rights of human beings and the AIDS response.

 

  1. Civil society march against crackdown by Indian government

On the morning of 21 July activists marched from the conference to the Indian Consulate in Durban. The activists were protesting the Indian government’s crackdown on civil society groups such as the Lawyers Collective and India’s yielding to pressure from the United States on intellectual property. The activists say that India’s status as the pharmacy of the developing world is under threat and with it the global supply of quality generic AIDS medicines.  The memorandum was endorsed by current, future and past leaders of the International AIDS Society.

 

  1. New evidence supports new models of care

One of the key themes of the 2016 conference was that we need to change the way healthcare systems deliver services to people living with HIV if we want to provide all people living with HIV with treatment. The evidence is in. It is now up to healthcare systems to start implementing more task-shifting, adherence clubs, and care models requiring fewer clinic visits.  There is also new evidence suggesting that offering people treatment on the same day as testing HIV positive leads to more people starting treatment. Not surprisingly, a community healthcare worker-based programme  helped to improve TB detection rates in a study in Malawi.

While it is hard to change the inertia of old ways of delivering care, we now seem to have reached a critical mass of evidence on what we need to do to make healthcare systems much more effective and efficient. Integrating these new ways of doing things must be a top priority for health departments in high HIV and TB burden countries.

In a show of solidarity with breast cancer patients across the world, activists covered the Roche stand at the conference with hundreds of bras
In a show of solidarity with breast cancer patients across the world, activists covered the Roche stand at the conference with hundreds of bras

 

  1. Breast cancer protest at an AIDS conference

In a show of solidarity with breast cancer patients across the world, activists covered the Roche

stand at the conference with hundreds of bras. The activists were protesting the high prices that Roche is charging for the breast cancer drug trastuzumab in South Africa and other countries.  In South Africa a course of the drug costs a half a million Rand. One of the protestors was a breast cancer patient from South Africa who has not been able to access trastuzumab. Her cancer has recently spread – something taking trastuzumab could potentially have prevented.

 

 

 

Stigma and shame still shrouds HIV amongst key populations

By Ntsiki Mpulo

Key populations including sex workers, men who have sex with men and injecting drug users are still marginalised and suffer the “internal nightmare of shame and stigma” despite the strides that have been made in the response to the AIDS epidemic. This was the message delivered by Constitutional Court Judge Edwin Cameron when he delivered the Jonathan Mann Lecture at the International AIDS Conference today (Tuesday).

Justice Edwin Cameron
Justice Edwin Cameron

Cameron reminded delegates that it had been 35 years since the Western world was alerted to AIDS, and since this first report, 35 million people had died of AIDS-related illnesses. In 2015 alone, 1.1 million people.

“These last 35 years, since then, have been long.  For many of us, it has been an arduous and exhausting and often dismaying journey,” said Cameron, himself openly living with HIV. He referred to the AIDS denialism era in which South Africa saw a reported 300 000 people dying as a result of a tacit refusal by the Mbeki government to treat people living with HIV.

Following a protracted and sustained advocacy campaign and court action led by civil society, South Africa finally introduced anti-retroviral treatment in the public health system in 2004.

Cameron acknowledged that access to life saving treatment had saved the lives of millions globally and that this had been hard won through focused activism.   “We honour the part, in treatment availability and accessibility, of angry, principled and determined activists, in South Africa’s Treatment Action Campaign and elsewhere.  For millions of poor people, their anger brought the gift of life,” he said.

He cautioned the global community against declaring the fight to curb the epidemic won, and made particular reference to South Africa saying that too many people were still denied access to ARVs.

“In South Africa, despite our many successes, well over six million people are living with HIV and globally, of the 36.7 million people living with HIV at the end of 2015, fewer than half had access to ARVs,” he said.

“Most of those still in need of ARVs are poor, marginalised and stigmatised – stigmatised by poverty, sexual orientation, gender identity, by the work they do, by their drug-taking and by being in prison.”

Cameron believes that healthcare for men who have sex with men (MSMs) is insufficient
Cameron believes that healthcare for men who have sex with men (MSMs) is insufficient. photo: avert.org

Cameron paid tribute to Dr Jonathan Mann who pioneered work with HIV in prisons saying that Mann recognised HIV stigma was driven by laws that specifically criminalise transmission of HIV and exposure by another to it. Cameron labelled the laws “vicious” and “ill-considered and explained that by criminalising undefined “exposure”, these legislators ignored the science of AIDS which has demonstrated that HIV is easily transmitted.

Although the South African government has announced that from September 2016 it would roll out a programme which would see people all who test HIV positive receiving treatment regardless of CD4 count, Cameron believes that healthcare for men who have sex with men (MSMs) is insufficient.

“They lack programs in awareness, education, outreach, condom provision and access to ARVs,” he said.  He quoted a study by Professor Chris Beyrer which showed that the means to end HIV infections and AIDS deaths amongst men having sex with men is available however “the world is still failing”.

“For this, there is one reason only – ignorance, prejudice, hatred and fear,” said Cameron. “The world has not yet accepted diversity in gender identity and sexual orientation as a natural and joyful fact of being human.”

Cameron made an impassioned plea for sex workers to be treated with dignity and respect. He called for police protection for sex workers rather than “exploitation and assault and humiliation”.

He invited activists from across Africa and the Caribbean to rise from their seats and join him on stage in solidarity against the stigmatisation of these key populations and called for renewed vigour in tackling the issues that were a barrier to equal treatment.

Read the full speech here