Lifesaving programme under threat

By Ntsiki Mpulo, SECTION27

Keiskamma Trust, an Eastern Cape based  health organisation, praised around

Keiskamma Trust which survives on
donor funding is facing a crisis as money dries up for it Community Health Worker programme

the world for its incredible community work which has saved thousands of lives, is in danger after funding cuts. Ntsiki Mpulo spent time with a community worker to give us a glimpse into the important work they do in a province where the health system is unable to deliver.

“The magnitude of the HIV/Aids challenge facing the country calls for a concerted, co-ordinated and co-operative national effort in which government in each of its three spheres and the panoply of resources and skills of civil society are marshalled, inspired and led.”

This was the rallying call of the judgment in Minister of Health vs Treatment Action Campaign, in 2002. Following years of AIDS denialism, the court upheld the constitutional right of all HIV-positive pregnant women to access healthcare services to prevent mother-to-child transmission of HIV (PMTCT).

Dr Carol Hofmeyer, a medical doctor who had settled in the Eastern Cape town of Hamburg, heeded the call, and began administering lifesaving ART (anti-retroviral therapy) to the people surrounding the village. The programme started with a handful of community health workers supporting the AIDS hospice. They now have 80 community health workers who serve 47 villages and 13 clinics in the Amathole District area surrounding Hamburg, including Peddie and Nier Village.

Nontobeko Twane, a community health worker based in Mgababa village, started as a volunteer at Keiskamma Trust in 2006. She received training as a community health worker, and was then employed on a permanent basis. She hasn’t worked elsewhere, and the stipend she receives is her only source of income.

She tested positive for HIV in February 2008, and was initiated on treatment in May 2008. She has steadfastly taken treatment since that day, and continues to do so today. She understands the challenges related to taking chronic medication for the rest of her life, and is thus able to provide the support that her patients need.

She is based largely at Keiskamma Trust, which is the temporary home of Hamburg Clinic. The Trust stepped in and offered its premises as a temporary measure when the 30-year-old Hamburg Clinic building collapsed in 2012. Through this collaboration, the Keiskamma Trust community health workers have developed a close working relationship with the clinic sisters.

The services provided by the Keiskamma community health workers include home-based care visits, regular reporting to nursing staff on critical cases, and monitoring adherence to (but not limited to) ARVs and TB, hypertension and diabetes medication. Now, these services are in jeopardy, as the Keiskamma Trust faces a funding crisis.

Following the termination of a donor-funding agreement, the trust is no longer able to pay the community health workers who are part of the programme, which requires R1.2 million per annum in operational funding. The Eastern Cape Health Department has agreed to provide sufficient funding to pay 10 community health workers per annum. This falls far short of the funds required to pay stipends for the 80 community health workers in the programme.

The Keiskamma community health workers are the cornerstone of the success of the health programme in the area; without them, women such as 27-year-old Zukiswa (name changed) face certain death.

Zukiswa lives in Mgabaga Village with her husband of five years, Moses (name changed), and her two children – a three-year-old daughter and a one-year-old, son Her husband works as a mechanic, fixing cars in the yard of their small home. Zukiswa does not work, and the family’s only other source of income is the child grant received from the state. However, this is insufficient to feed the entire family; it covers formula and nappies for the youngest child, and a modest amount of food. Zukiswa’s emaciated frame is testament to this fact.

She says that she has always been slight in build; but what is clear is that Zukiswa is wasting away. She tested positive for HIV in 2015. She was initiated on treatment, but has since stopped taking her medication. Her reason for not taking her medication is that there is no food in the house.

Zukiswa cowers on the corner of the couch, the only piece of furniture in the lounge, while Nontobeko perches on a bench opposite her. Though it is not stated openly, it is clear that Zukiswa is afraid of her husband. Moses has also tested positive, but has opted not to start ARV treatment. This increases the chances that Zukiswa a will become re-infected if she does not resume her treatment.

On numerous occasions, Nontobeko has explained to Zukiswa that taking her medication means that she will increase her life expectancy, so can she raise her children. She has on occasion requested support from the Department of Social Development, to provide food parcels; however, this has only been a stopgap measure. And as Zukiswa continues not to adhere to her treatment, Nontobeko is fearful that this young mother will not survive the year.

Nontobeko, like the other 80 community health workers employed by Keiskamma Trust, provides a lifeline for the women she looks after. Without her, many would be unable to access health care at all.

 

Which countries invest most in TB research?

By Marcus Low, Spotlight

Investment in TB research can be measured in many ways. The most obvious way is simply to look at who gives the most money for TB research. The country that gives the most, by far, is the United States – which gives more money than all other countries combined.

Of the $726 million invested in TB research and development (R&D) in 2016, 66% was invested by governments, 20% by philanthropic organisations, 11% by industry, and 3% by multilateral entities. Together, the United States National Institutes for Health (NIH) and the Gates Foundation contributed half of global investment in TB R&D. Many pharmaceutical companies do not invest in TB at all; and the few that do, invest relatively small amounts.

The top 10 countries in terms of absolute investment in TB R&D were:

  1. United States $316 471 566
  2. United Kingdom $27 575 390
  3. European Union $23 575 253
  4. Canada $16 898 180
  5. Germany $14 820 938
  6. India $14 768 283
  7. South Korea $12 359 135
  8. The Netherlands $9 858 859
  9. Australia $9 489 424
  10. South Africa $6 465 746

While a new BRICS TB Research Network was announced recently, of the five BRICS countries, only India and South Africa are in the top 10 in terms of absolute investment in TB R&D. Large developing economies such as China, Russia, Indonesia and Brazil make only very modest investments in TB R&D. Among wealthy countries, the very low investment made by France, Japan, Italy and Spain is notable.

SA top on two important measures

In the latest TAG R&D report, South Africa is ranked number one on two important measures of investment in TB R&D: percentage of GDP and percentage of GERD (explained below). In terms of the absolute investment in TB R&D, South Africa ranked 10th, with $6.5 million (around R90 million) invested in 2016. Whichever measure you use, South Africa invests more than most other countries with high TB burdens.

Yet, even with South Africa’s relatively high levels of investment in TB R&D, many of our researchers are still dependent on funding from the United States government to do their research. The United States invests almost 50 times as much as South Africa in TB R&D.

“South Africa ranks first when its spending on TB R&D is judged relative to its GDP and GERD; however, this is largely a function of South Africa’s lower GDP and R&D expenditures, compared to other countries that report data. The absolute amount of money South Africa gives to TB research is still low – only $6.5 million last year – and most goes to a handful of universities and academic medical centres.

“Given the burden of TB in South Africa, its significant clinical trials capacity, and the depth of its scientific talent, there is ample room for South Africa to increase its contributions to TB research. In addition to supporting domestic researchers through grant funding, South Africa should explore innovative ways to finance and incentivise TB research, including co-financing for regional and global initiatives such as The Life Prize or the BRICS TB Research Network.” – Mike Frick, author of the TAG TB R&D Report

Percentage of GDP

Because countries have different-sized economies and different levels of development, simply looking at who gives the most money is not always a fair comparison. One alternative is to see what percentage of a country’s GDP is spent on TB R&D. GDP, or Gross Domestic Product, is the total value of everything produced by all the people and companies in a country.

The top 10 countries in terms of percentage of GDP invested in TB R&D are:

CountryTB R&D Funding 2016GDP 2016 (USD Millions)TB R&D Expenditure as % of GDP Rank Order
South Africa$6 465 746$294 8411
United States$316 471 566$18 569 1002
Norway$5 503 497$370 5573
The Netherlands$9 858 859$770 8454
Canada$16 898 180$1 529 7605
United Kingdom$27 575 390$2 618 8866
Switzerland$5 938 196$659 8277
South Korea$12 359 135$1 411 2468
Australia$9 489 424$1 204 6169
India$14 768 283$2 263 52310

Percentage of GERD

Another option is to look at what percentage of all the money invested in R&D in a country is invested specifically in TB R&D. This total investment in R&D in a country is called GERD, or Gross Domestic Expenditure on R&D.

The top 10 countries in terms of percentage of GERD invested in TB R&D are:

CountryTB R&D Funding 2016Average Annual GERD 2010–2015GERD calculationTB R&D Expenditure as Percentage of GERD Rank Order
South Africa
$6 465 746
$4 718 475 774
0,14%
1
Norway$5 503 497$5 441 716 1000,10%2
United States$316 471 566$452 804 833 3330,07%3
United Kingdom$27 575 390$41 157 956 4650,07%4
Canada$16 898 180
$25 773 702 491
0,07%
5
The Netherlands$9 858 859$15 342 022 2200,06%6
Australia$9 489 424$21 554 008 7150,04%7
Switzerland$5 938 196$13 669 878 7100,04%8
The Philippines$302 178$762 079 5320,04%9
New Zealand$679 649$1 811 948 5690,04%10

TAG calculated that in order to meet the WHO End TB Plan’s target of $2 billion per year for TB R&D, all high-burden and G20 countries must invest 0.1% of GERD in TB R&D. Currently, the only two countries to meet this target are South Africa and Norway.

 

  • The figures in this article are taken from the Treatment Action Group report ‘The Ascent Begins: Tuberculosis Research Funding Trends, 2005-2016’, published in November 2017. Find the full report at TreatmentActionGroup.org/TB

Spotlight Issue 4 is out today!

In this issue: A profile of Free State MEC for Health Butana Khompela; A guide to making AIDS councils work; TAC on the state of our  hospitals; Doctors blow the whistle on orthopaedic nightmare; A special focus section on healthcare in the Eastern Cape; Linda-Gail Bekker, Peter Piot and other experts on the state of the HIV and TB response on WAD 2017; Mark Heywood on state capture and the right to health; The latest TB stats; A close look at who is funding TB research; An inside look at PrEP at tertiary education facilities; and more.

Download here

 

What is the state of the global HIV and TB response in December 2017?

credit: istock

“I am tired – to the point of despair – of all the congratulatory public raptures about the progress against HIV and AIDS. How could we not have made progress? It’s been thirty-six years, for heaven’s sake: we were bound to move forward. Instead indulging in an orgy of self-hypnotic success, we should be demanding to know how it’s possible that up to 19 million people still don’t have treatment; that women and adolescent girls continue to bear the brunt of the pandemic’s assault; that key populations are demonised by fossilised governments, so that prevention and treatment are never available; and that we’re in a staggering funding crisis, the sure outcome of which is even greater morbidity and mortality. Where is the political and multilateral leadership that can decisively and forever turn the tide? We should all be raging against the profusion of fatuous voices.” – Stephen Lewis, co-director, AIDS-Free World

 

“The world has made great strides in tackling HIV/AIDS, but we are in danger of coming to a standstill. Progress has slowed, for a variety of reasons; but a major roadblock is our failure to listen to young people. The largest-ever generation of adolescents in sub-Saharan Africa is at risk of HIV – in 2015, nearly 7 500 young women aged 15 to 24 years acquired the infection each week. Stigma, poor education, and services that are out of touch. We must understand what young people are going through, and react quickly and effectively, if we are to end HIV/AIDS.” – Professor Peter Piot, Director of the London School of Hygiene & Tropical Medicine and former Executive Director of UNAIDS

 

“In 2008, when the global economic crisis hit, funding for HIV and TB first plateaued and now is slowly declining. If the 2000s offered the promise of ‘the end of AIDS’ and new strides against TB, in the next few years we may be trying to figure out how to ‘do less harm’, and limit the damage that funding cuts will cause after promises made by donors have been broken and allocations curtailed. I can’t offer you false hopes about us getting to 90-90-90 anytime soon, but perhaps the brutal facts will spur us to action once again; they are surely better than spooning out comforting – and ultimately, untrue – platitudes for World AIDS Day.” – Gregg Gonsalves, long-time AIDS activist and Assistant Professor, Yale School of Public Health

 

 

“A bittersweet trajectory – We are in an epoch in which the HIV epidemic continues in an unremitting manner, eradicating the promise of a better tomorrow from our families and communities. In our country, more than seven million people are HIV-infected; and it is estimated that there are 1 000 new infections every day. Science continues to push the boundaries: progress new HIV treatment and care interventions, movements to control paediatric HIV by reducing maternal-foetal HIV transmission. These have translated into reductions in infant and under-five mortality rates, and increased life expectancy. In the HIV-prevention arena, progress in long-acting antiretrovirals for use in pre-exposure prophylaxis may translate into a powerful prevention intervention. As we advance three HIV vaccine concepts into efficacy studies, we start to think that we may have the kind of tools that have the potential to curb the HIV epidemic globally. However, the biggest hurdle to overcome in our fight against HIV is the stigma and discrimination that HIV-infected people face every day of their lives. The true test of beating this epidemic will be whether we as a people have the ability to overcome our prejudices against people living with HIV. While we have at our disposal a series of proven prevention tools to afford us safer sexual choices, it is evident that science and biomedical interventions alone will not help heal our communities and families. Structural factors such as poverty and unemployment, in addition to biological factors such as genital inflammation and viral load, and behavioural factors such as lack of condom use and age-disparate relationships, have combined to make our battle against HIV all the more challenging. If we are to grow the momentum of our battle strategy against HIV, then we must not define people by their living with HIV; but rather, by the lives they fulfil.” – Professor Glenda E. Gray, President of the South African Medical Research Council

 

“HIV and TB continue to be major global public-health issues, with an estimated 37 million people living with HIV and an estimated 10.4 million with TB. The vast majority of people living with HIV and TB are from the low and middle-income countries, and the majority of them are public healthcare users. We can’t afford to lose this battle; political rhetoric without action won’t win this battle. The only revolutionary step towards ending HIV and AIDS is to invest more resources in public health care, and have the political commitment and will required to overhaul public healthcare systems. Only a functional, well-maintained, well-resourced public healthcare system that will serve the people – irrespective of their class, sexual orientation, financial status and of other discriminatory laws – can take us to where we want to see ourselves with our global response to HIV and TB.” – Anele Yawa, General Secretary, Treatment Action Campaign

 

“In 2017, it is very encouraging to see expansion of life-saving antiretrovirals

to 21 million individuals worldwide; however, in order to get the full impact of this treatment expansion, we also need to ensure that all 21 million stay on their treatment and become virally suppressed. Sadly, we are not doing well in tuberculosis and without a doubt more emphasis is needed worldwide on improving primary prevention of both HIV and tuberculosis. This will require that we also address structural determinants of universal health: a much harder challenge to meet.” – Professor Linda-Gail Bekker is the President of the International AIDS Society and Deputy Director and Chief Operating Officer of the Desmond Tutu HIV Foundation at the University of Cape Town

 

“South Africa has the largest HIV treatment programme in the world with 4.2-million patients on treatment. This has been achieved through a combination of factors including high levels of activism by civil society formations, political leadership from Minister Aaron Motsoaledi, funding from national Treasury in the form of a conditional grant, training of nurses to initiate patients on first line treatment (NIMART) and support from development partners. However with an estimated 270 000 new HIV infections in 2016 as well as 7.1-million living with HIV and AIDS, it is clear that we have much more to do in both preventing new HIV infections as well as reaching the 90-90-90 targets by 2020. The recently launched Global HIV Prevention Coalition’s HIV Prevention Roadmap proposes a target of no more than 88 000 new HIV infections by 2020. In addition, reaching the 90-90-90 targets means that we should have 6.2-million patients on ART by 2020 as well. To meet these targets we will require that all stakeholders fully commit to them, find additional resources as well as work collaboratively.  It will also require changes to how we provide services to reach the treatment targets and how we support patients to ensure high levels of viral suppression. We also need to more rapidly decrease new HIV infections by being more creative and fully implementing combination prevention strategies. Our strategies must include dealing decisively with the TB epidemic as well – preventing new TB infections, finding those that have TB and successfully treating them. We have the political will, the motivation, and the means to reach epidemic control by 2020!” – Dr Yogan Pillay, Deputy Director General, South Africa, National Department of Health

 

“The state of the intertwined, global HIV and TB response is characterised by two signature themes. In the first instance, we have a global community unified in strategic intent to achieve epidemic(s) control, as encapsulated by the UNAIDS 90-90-90 strategy. This unified focus needs to be bolstered even further, as the impact of a successful 90-90-90 strategy will be healthy, HIV positive persons living long, productive lives, while transmitting the virus at far lower rates. The second signature theme relates to generalised insecurities globally, and the emerging dominance of more conservative, inward-looking views among donors. This directly affects the HIV/TB programmes that support the poorest and most marginalised of communities. Efforts should be amplified towards lobbying wealthy countries to increase donor support to developing countries, while developing countries should find greater internal resources to support the same. HIV/TB epidemic control requires long-term, global, sustainable support by – and for – all.” – Dr Tim Tucker is CEO of SEAD Consulting and specialist Clinical Virologist

 

“Thanks to anti-retrovirals, AIDS is no longer an inevitably fatal condition, but a chronic, manageable one; rates of infant transmission have been reduced to about 1.5%; and their impact on prevention – directly through viral suppression of infected persons, or through prophylactic use by infected persons – is starting to emerge. Though with nearly 20 million people still to be initiated on treatment globally, a million deaths, and 1.8 million new infections still continuing to occur, we can hardly claim to have turned the corner or the tide! We do have sufficient knowledge to achieve epidemic control, however in sub-Saharan Africa, the HIV and TB epidemics are closely intertwined; failure to integrate HIV and TB services is resulting in continued high mortality rates – as are stigma and discrimination, through creating a barrier to accessing services. Stigma remains a major barrier to access to services. We need to partner with infected and affected communities much earlier, and across all stages of developing, evaluating and implementing new interventions.
Getting to this point has required a lot of teamwork, political commitment, global solidarity and innovation – and the next phase is going to be a lot more challenging. But can we afford to reverse the gains made to date?” – Quarraisha Abdool Karim is the Associate Scientific Director of CAPRISA in South Africa

 

“The political momentum for the fight against TB is now garnering the same type of global attention that HIV achieved in 2000, when the UN General Assembly hosted a Special Session on AIDS, the Global Fund was created, and investments shifted from the millions to the billions. It’s not before time. Still lagging behind is any serious attention being paid to the plight of women and girls. In fact, things are going into reverse: in January 2017, US President Trump used his first days in the White House to expand the Global Gag Rule to all $8.8 billion allocated to US global health – including funds dedicated to HIV and TB. This is likely to have a devastating impact on the lives of girls and women, especially girls and women impacted by these two diseases. NGOs registered outside the US can no longer provide information or advice about safe abortion, even with their own or other people’s funds, if they want to retain funding flows from the US. All of the hard work done so far to address the human rights of girls and women, and to break through silos, has been endangered. Many HIV programmes have worked hard to address the needs and rights of the women and girls they serve, so that they can access the full spectrum of sexual and reproductive health services alongside their HIV and TB services. Given the heavy reliance of HIV and TB programmes on US funding, catastrophic impacts are predicted that will be counted in the lives and well-being of women, girls and their communities. Brave politicians – initially from the Netherlands and other European countries, and now from Canada, Afghanistan and a range of African countries – have mobilised. Around the world, thousands of individuals and organisations are standing together under the banner of SheDecides to fight for a ‘new normal’, in which every girl, every woman, everywhere decides for herself what to do with her body, her life and her future. And you can join them, by signing the manifesto at www.shedecides.com.” Robin Gorna co-leads SheDecides

 

 

 

Moment of truth for global TB response

On Thursday 16 November 2017, Russian president Vladimir Putin told a hall full of health ministers in Moscow that TB is a “serious problem”, and said, “I am confident that the only way we can stand up against this truly global threat is if we join forces.” Over the next day and a half, the meeting at which President Putin was speaking – the first World Health Organisation (WHO) Global Ministerial Conference: Ending Tuberculosis in the Sustainable Development Era – positively resonated with such talk of the “urgency” of the TB crisis, and calls to “work together”.

Yet one of the lessons one learns when working on TB is that whether it concerns financing, health-system reform or political will, the difference between what is said and what is done is often depressingly stark. Even as President Putin was reading his speech, many people in his own country still do not have access to a state-of-the-art diagnostic test that most experts agree should be a critical part of any country’s TB response.

This gap between what is said on the international stage and what is done back home will have to close if meetings such as these are to have any impact on the actual treatment and care received by people with TB. The somewhat toothless declaration coming out of this week’s meeting may generally say the right kind of things, but governments steered clear of making any firm and binding commitments. And without firm and binding commitments, it is hard to see how such declarations can have any real impact in a world of shrinking health budgets and many competing priorities.

Even so, the process heading into the Ministerial Meeting and onward to the September 2018 United Nations (UN) High-Level Meeting (HLM) on TB presents a rare moment of political opportunity to improve the often mediocre global response to TB. There is a kind of weary optimism among people working on TB – weary because of an underlying fatalism that seems to permeate much of the TB world; optimism because at last there is a reason to hope for substantially more political will, together with all the resources that entails.

How will the BRICS fund their plans?

Together with Putin’s appearance, the establishment of a BRICS Research Network is probably the most concrete piece of good news from the meeting. Research cooperation between the BRICS (who together have around 40% of the world’s TB cases) suggests that these governments may be willing to start shouldering more responsibility and investing in domestic research capacity. It is also indirect evidence of the failure of such research cooperation processes that have come through the WHO – where wealthy countries such as the United States have managed to scupper good ideas such as a binding R&D treaty. That the BRICS nations are taking the initiative is great news.

One concern is that the deliberations behind the BRICS TB Research Network to date have been relatively insular. As a next step, the negotiators – now involving the foreign ministries of each country – should reach out to civil society, and make the work of the network as transparent as possible. One of the network’s priorities will be to “develop innovative mechanisms for R&D”, guided by “principles of affordability, efficiency, equity, and effectiveness”. Given the potential influence of industry lobbies, civil-society input may be needed to ensure these values are not lost along the way.

As with R&D more broadly, the true test of this network will be whether or not governments will put up the money. An unfunded network will offer only marginal benefits, and not the major innovations we need for TB. Extracting money from already stretched austerity budgets will be difficult, which means it will probably have to be found elsewhere. The idea of approaching the BRICS Bank was mentioned – other possibilities include sin taxes, or even financial-transaction taxes.

TB research grossly underfunded

That money for TB research is a problem is borne out by a recent report showing that total global investment in TB research was only around $726 million in 2016. The report, published by the Treatment Action Group (TAG), showed an increase over 2015 levels, but emphasised that it is still only around a third of the annual $2bn in total global investment that the WHO’s End TB Plan estimates is needed per year. For some context, the United States military budget alone is set to rise by $54 billion in 2018, to around $600 billion.

The power of TB R&D as a critical indicator, when compared to the long laundry list of issues cited in the Moscow Declaration, is that it can be measured precisely. As such, it provides probably the clearest test we have of political will. If all the world’s governments cannot even scrape together $2bn per year for a disease that kills around 1.7 million people a year, then the idealistic language of the ministerial declaration, and the declaration that will come out of next year’s UN HLM on TB, will clearly be empty rhetoric – and perhaps worse than empty rhetoric; a kind of rhetoric that loudly proclaims to help the poor, but when the time comes, does nothing.

How much should countries contribute?

While the WHO’s estimate that we need around $2bn per year for TB research is a good starting point, there are obvious differences regarding who should contribute how much. As with cutting greenhouse gas emissions, countries will differ on who is responsible for what, and on what is fair. It seems likely that a system perceived to be fair will be required if countries are to buy in or to sign up to binding funding commitments.

This problem has now been satisfactorily solved – at least in my view – by a new set of country-specific targets published by TAG. TAG suggests that each of the high-TB-burden countries and the G20 should invest 0.1% of their Gross Domestic Expenditure on R&D (GERD) in TB research. This means, by definition, that less is asked of countries that invest less in R&D, and more of countries that invest more – something that builds a degree of fairness and realism into the targets.

As with any targets, these are imperfect. It may or may not be a good idea to ask more of high-burden countries than is indicated in these targets. Perhaps there should be greater focus on increasing overall R&D spending, rather than shifting existing R&D funds to TB. When one looks at the actual targets, though, most of these criticisms fall away. Most countries will be asked to invest more (currently, only South Africa and Norway meet the targets) – but in almost all cases, the asks are realistic, given the threat and seriousness of TB. The 0.1% of GERD target also has the benefit of being simple. More complicated formulas taking into account TB burden, GDP, and GERD could be developed – but adding such complexity would make the targets more opaque.

Kicking it upstairs

In a rousing speech at the opening of the meeting, South Africa’s Minister of Health, Dr Aaron Motsoaledi, said: “We must come up with innovative research and development models, such as The Life Prize – formerly known as the ‘3P’ project – which delinks the cost of R&D from the final cost of medicines.” It was disappointing that, apart from strong interventions by Motsoaledi and South Africa’s Director General of Health, Precious Matsoso, The Life Prize and delinkage did not get more traction at the conference – given that The Life Prize (in its specificity) and delinkage (with its intellectual framework) are some of the best responses we have to the partial market failure of TB medicines and diagnostics, where patent protection has proven insufficient incentive to drive innovation. In his understanding of how increased R&D can best play out in the real world, Motsoaledi was a step ahead of most other speakers.

He was also clearer than most about the politics of the process, heading toward the UN HLM. He was unequivocal that heads of states must now take responsibility, and give ministers their “marching orders” in the fight against TB. He is correct.

At the opening of the ministerial meeting, President Putin said: “Another important success factor is to step up scientific tuberculosis research and develop effective diagnostic tools, vaccines and medicines, including those aimed at treating resistant forms of tuberculosis. In this regard, I believe that the initiative of the BRICS countries to create a network to study tuberculosis is very important.”

No doubt many similar things will be said by other world leaders in the next 10 months, and at the 2018 UN HLM on TB. Yet, behind the words, hard cash and hard indicators such as investment in R&D will tell us whether our world leaders mean what they say; whether President Putin is serious about TB; whether the emperor is wearing any clothes.

Note: Low is a member of the Life Prize steering committee. The Life Prize is mentioned in this article. Low’s views are his own.

Note: This is an early online access article from the upcoming print edition of Spotlight to be launched on 1 December 2017.

Spotlight on TAC Provinces

The Treatment Action Campaign (TAC) reports for Spotlight on some of
its recent work in the seven provinces where TAC has branches and
provincial structures.

Limpopo

Following heavy rains in May, a malaria outbreak hit Limpopo. Clinics and other primary health facilities did not have enough testing kits or malaria treatment to deal with the outbreak.

Patients were therefore being transferred to Nkhensani Hospital. As there were too few beds, patients at the hospital were being admitted only to be left in an undignified condition on the floors of the wards. Immediately, TAC Limpopo organised a meeting with the CEO and Communications Manager of the hospital to address our concerns. The hospital acknowledged the challenges; in the interim, they erected tents to deal with the influx of patients. TAC Limpopo was not satisfied with this action, and escalated the matter. We wanted to know what the provincial department’s plan would be to resolve this crisis. Soon after engagement with the office of the MEC of Health, Dr Phophi Ramathuba, testing kits and malaria treatment were delivered to most of the facilities that were relieving the burden on the hospital.

In July, Mopani district in Limpopo was facing a shortage of HIV-testing kits. After many calls from members of the public who had been unable to take an HIV test, TAC Limpopo intervened. Following a snap survey, TAC members found that the following health facilities had either very few, or no testing kits at all: 1) Vyeboom Clinic; 2) Basani Clinic; 3) Hlaneki Clinic; 4) Ratanang Clinic; 5) Xivulani Clinic; 6) Mapayeni Clinic; 7) Khujwana Clinic; 8) Giyani Health Centre; 9) Nkhensani Hospital; 10) Thomo Clinic; 11) Dzumeri Health Centre; and 12) Ratanang Clinic. Knowing their HIV status is the most important thing people can do to protect their own health and avoid the spread of HIV, meaning that the shortage was a crisis for the HIV response in the area.

After hearing and validating the complaints, TAC Limpopo escalated the matter to the District Health Department and the Office of the Mayor. The official response from government was that the supplier’s tender had come to an end, and they had failed to calculate the risks and put measures in place to avoid a stockout. Following TAC’s intervention, limited stock was quickly delivered to Giyani Health Centre, Nkhensani Hospital, and Thomo Clinic. Shortly afterwards, TAC Limpopo received a call from Giyani Health Centre extending their gratitude for our intervention in the matter. The situation must be resolved urgently at the other facilities, to ensure that HIV testing can resume.

KwaZulu-Natal

In May, it came to light that KwaZulu-Natal’s healthcare services are in a state of emergency, with shocking details shared by health workers in the province.

Reports reflected a collapsing health system which is in many cases no longer delivering adequate healthcare to the most vulnerable. Hospitals are experiencing shortages of life-saving medicines and equipment, and suffering through departments that are entirely depleted of staff. Major delays for treatment and care continue to be felt in oncology and various other departments. In June, TAC KZN met with MEC of Health Dr Sibongiseni Dhlomo, and raised these issues. In response, the MEC complained of cost cutting and budget cuts by the provincial Treasury. The response of the MEC failed to alleviate the concerns of TAC KZN. A suitable turnaround plan must urgently be put in place by the MEC, or TAC will be forced to escalate our advocacy around this crisis. The Provincial Congress will discuss and resolve a way forward. TAC will work with SECTION27, the South African Medical Association (SAMA), and the South African Human Rights Commission on this matter.

In July, TAC KZN welcomed the announcement that the University of Zululand would provide HIV treatment to students and staff on campus. If implemented effectively, this should provide an easier and quicker system for young people and staff at the university to collect their ARVs, and therefore ensure better treatment adherence. Making medicines more accessible will benefit the health of all people living with HIV on campus. The evidence is clear that earlier treatment reduces serious adverse events, such as TB and various cancers. Adhering properly to HIV treatment is critical to staying healthy. Additionally, this will also help prevent many new HIV infections. Studies show that people who are stable on treatment with undetectable viral loads are highly unlikely to transmit HIV to their sexual partners.

The dysfunction in the public healthcare system creates its own challenges for people to remain adherent. The reality is that our clinics are in crisis. People must wait in long queues for hours to get their HIV treatment. Sometimes medicine stockouts or shortages mean people leave empty-handed. This forces people to default, and puts their health and lives at risk. Students must take the decision to miss classes in order to wait at the clinic; those staying in residence must travel home to collect their treatment. Our rights to health and education are in conflict. Providing medicines on campus will not only promote better adherence for students and staff at the university; it will also relieve the burden on health facilities that are already stretched to capacity. Given the increasing uptake of HIV treatment through ‘Universal Test and Treat’, this burden will only grow.

Since 2016, TAC KZN has been working on a campaign to ‘Help Teens Protect Themselves’. Through our engagements with the MEC of Health and the MEC of Education, and in the KZN Provincial AIDS Council, TAC KZN has been advocating for better access to prevention methods, the roll-out of prevention and treatment literacy training, and easier access to treatment, including on campuses. Both MECs made a clear commitment to improve youth-targeted HIV interventions. Now it is important for TAC KZN to monitor the roll-out. Treatment accessibility must be coupled with counselling and adherence support on campus. We also urge the University of Zululand to provide easy access to preventative measures such as male and female condoms, as well as pre-exposure prophylaxis (PrEP). PrEP aimed at youth and the general population may have an important role to play in reducing new infections. Further, and critically, measures must be put in place to prevent the disclosure of people’s HIV status on campus, which would cause unnecessary stigma and discrimination. For instance, people should not be forced to enter buildings reserved only for collecting HIV medicines, and their clinic files must not be colour-coded or marked to show their status. TAC KZN will monitor the roll-out and advocate for other campuses to adopt this approach.

Mpumalanga

“Police in Ermelo used to assault, insult and arrest us often,” says Boitumelo*, a sex worker from Mpumalanga. 

“They would arrive at our houses, kick stuff, call us names, beat us. They would confiscate our medications (including HIV treatment), destroy our foods, ruin our furniture, even take our condoms. And after they had arrested us, we would spend the entire weekend in the dirty, smelly, and cold cell. Sometimes we would be released on the Monday with R500 each. Then we would appear in court where eventually the charges would be dropped.”

Boitumelo and other sex workers in the Ermelo area have been victimised by the police for years. After a chance meeting in the mall with a member of NAPWA – who happened to be wearing a T-shirt saying ‘sex work is work’ – Boitumelo and other sex workers were soon introduced to TAC Mpumalanga. In late 2015, TAC facilitated a safe-space workshop where an advocate from the Women’s Legal Centre promised to represent the sex workers in case of further arrests.

“It was here that we started to feel safe and confident to talk,” Boitumelo continues. “It wasn’t long before we got arrested again, in December. We were told to be in court on 4 December. The advocate came to represent us and TAC members were there in numbers supporting us. We had done nothing wrong. We were sleeping when the police kicked down the doors. We were just sitting inside the house. The case was withdrawn on the day.”

TAC assisted in mobilising other sex workers and members of the LGBTQIA+ community to support us on 10 December in marching to the police station, to demand an end to the police harassment. “We walked through the township singing and holding placards. We were about 300 in total, wearing our mini- skirts and high heels,” remembers Boitumelo. “Police used to say we were whores because we are dressed in mini-skirts and that is why we wore it on the day. We wanted them to arrest us officially on this day; but instead, police came to escort us – after refusing to give us permission to hold the march.”

After this, the harassment and arrests did not stop.

TAC and partners escalated the matter to the MEC of Health, Gillion Mashego. They wrote to the MEC and the Brigadier of the SAPS to demand a meeting. The police had previously refused to meet, but engaged once the MEC was involved. In the meeting, after hearing the issues, the MEC demanded that the police stop harassing the sex workers and stop taking their condoms and medications. While the police tried to deny all that the sex workers said, photographs of beaten bodies, destroyed homes, and medications thrown on the floor, shocked the attendees of the meeting. The MEC instructed the police to engage with all departments and ensure that the victimisation and harassment would finally end.

“Since October 2016 we have not had problems with police. Since the police vans are no longer coming to our place, even clients come freely, and business has been better. Now I can at least send some money to my kids.”

Since last year, KwaMhlanga Hospital in Mpumalanga has been facing a severe crisis. A shortage of staff meant that doctors in the facility repeatedly went on strike. They were overworked, without the people-power to attend to all those in need of medical care. The maternity ward was overcrowded. Women would deliver their babies, after which they would be moved to a chair to sit for six hours observation, and then be sent home. Bloody and wet sheets would remain, as the next to give birth would occupy them. The nurses had no gloves or gowns; their clothes were dirty from delivering babies. The intensive care unit (ICU) was empty – no furniture, beds, or medical equipment; an abandoned, empty space. Conditions were untenable. At the district People’s Health Assembly organised by TAC in 2016, many complaints of poor service at KwaMhlanga were made, with members of the District Health Department in attendance: reports of people dying unnecessarily; people waiting months for simple procedures. The situation was so bad that even the National Portfolio Committee on Health visited the province and gave a damning report, which lead to the notorious threats made against MP Dr Makhosi Khoza.

TAC Mpumalanga met with the Hospital CEO to raise the various challenges that had been reported to us. The matter was escalated to the District Health Department, and then the Provincial Health Department. A meeting with Gillion Mashego, the MEC of Health, led to the removal of the CEO. An interim CEO was appointed in February 2017, after which the hospital received an injection of two million rand. The maternity ward was extended into a portion of the ICU to relieve the burden on the overcrowded ward, and a new position to manage this maternity ward has been advertised. The interim CEO visited hospitals in the North West to benchmark and gain guidance as to how to turn the crisis around. Some stability has finally been found. TAC will monitor the situation, and continue engaging with the new MEC.

* Not her real name – changed to protect her identity.

Western Cape

For a long time, TAC Western Cape received complaints about Michael Mapongwana Community Health Clinic in Khayelitsha.

Parents with children and babies would be seen in a container at the back of the clinic. They would wait outside for long periods, whatever the weather conditions, to be attended to by health workers. They would have to undress their children outside because of a lack of space on the inside. Children with illnesses shared the same space with those attending post-natal check-ups. Late last year, TAC Western Cape held a picket outside the clinic, and met with the Health Department to address these concerns. Finally, in February 2017, following pressure from TAC, a new structure was opened that could accommodate the children in a dignified and appropriate manner.

Eastern Cape

Since 2016, TAC Eastern Cape had received numerous complaints from the Clinic Committee and community members fearful of accessing health services at Philani Clinic. Mostly this was due to the bad attitude and lack of respect shown to patients by one of the nurses.

This nurse had repeatedly and publicly disclosed people’s HIV status and other health conditions without their consent. The situation had left community members not wanting to use the clinic at all.

While the Mayor had proposed suspending the nurse in question pending a disciplinary hearing, the Sub-District Health Manager undermined this decision. The community were understandably angry at the change. In April 2017 they shut the clinic down in protest, locking its gates until the matter was resolved. According to the community, the clinic would only be reopened given the removal of the nurse. This meant no-one could access services at all. Worryingly, TB and drug-resistant TB patients in the area could not undergo treatment reviews, as their folders were locked inside the clinic. They had no option but to use another facility, given that the nearest TB hospital is 350km away.

TAC Eastern Cape and the Queenstown Council of Churches urgently mobilised the Clinic Committee, community organisations, churches and partners in the area to meet in Queenstown and come up with a strategy to re-open the clinic, to ensure people could access health care. TAC met with MEC of Health Phumza Dyantyi and Clinic Committee members to demand a way forward. After this pressure, the clinic was re-opened in June 2017, and the nurse was removed. While one battle was won, the clinic is now understaffed, with one nurse being dismissed and one more resigning. TAC Eastern Cape will continue to demand that the vacant posts are filled urgently.

Free State

TAC Free State hears many complaints of medical negligence, and endeavours to assist people in getting the healthcare they need and deserve. One incident in Botshabelo involved Samuel Selebedi, who was bleeding profusely after falling onto a glass bottle.

After attending the clinic, he was rushed to Botshabelo Hospital. A painful surgery was conducted to stitch the bleeding arm, but doctors failed to remove the glass that had been lodged inside. No X-ray was taken. Mr Selebedi was sent home. Two months later, he faced complications. When he returned to Botshabelo Hospital, no-one attended to him. He then visited a private health practitioner, who was the first person able to explain what had gone wrong. The doctor advised him to return to the hospital, to demand surgery to remove the glass from his arm. At this point, TAC Free State were contacted for support. TAC Free State accompanied Mr Selebedi to the hospital, supporting him to advocate for his right to health. The matter was escalated to the CEO of the hospital. Finally, a thorough surgery took place, and the glass was removed. TAC Free State will continue to support Mr Selebedi as he raises a case of medical negligence against the hospital, and will hold the CEO to account in ensuring no other cases of negligence occur.

In a landmark judgment in November 2016, with important implications for the right to protest in South Africa, the Bloemfontein High Court set aside the convictions and sentences of the 94 community healthcare workers (CHWs) known as the #BopheloHouse94. This finally brought to an end the state’s callous and vindictive persecution of this courageous group of mostly elderly women.

The #BopheloHouse94 are CHWs from across the Free State. They were arrested in June 2014 at a peaceful night vigil at Bophelo House, the headquarters of the Free State Health Department. They were protesting the collapse of the Free State public healthcare system, and the April 2014 decision of then MEC of Health, Dr Benny Malakoane, to dismiss without warning or cause approximately 3 000 CHWs in the province. Malakoane has recently been removed as MEC of Health.

Since the judgment, TAC Free State has been engaging with the new MEC of Health, Butana Komphela. Not only have they been advocating for the turnaround of the broken public healthcare system, they also advocated for the reinstatement of the CHWs. A Memorandum of Understanding is in development that will ensure that TAC branches in Free State can work better with clinics to ensure a functioning health system. Furthermore, a plan to reinstate the CHWs is in motion. Phase one will be the re-hiring of those in the case, with phase two seeing a bigger expansion of the programme. TAC Free State will meet with the MEC quarterly, and continue to monitor the state of health care in the province.

Gauteng

In March, community members phoned TAC Gauteng outraged and concerned after watching a white pick-up truck dump medical waste near the taxi rank in Mamelodi. Tablets, capsules, loose powder, syringes, pregnancy tests, HIV tests and office papers were strewn across the ground.

When TAC Gauteng arrived on the scene, a child was playing in the waste. Residents informed them that some of the powder and syringes had been taken by those passing by. A steady stream of people were passing by. It was not safe to leave the waste unattended. TAC Gauteng found business cards among the waste from a company called Jade Pharmaceutical Enterprises. After calling the company they were told it had closed a year earlier – the woman on the phone tried to tell them that the waste was not harmful. When they called back a second time, they were told conflicting information – that the company had closed in 2013. Calls to the police and the local counsellor landed on deaf ears. Messages were sent to the MEC of Health to intervene urgently. The local municipality was contacted. TAC Gauteng remained on the scene from the afternoon until midnight. To protect their own safety they left, returning at 4am when residents would begin to pass by in the morning. Eventually, after pressure from TAC Gauteng, the local municipality made arrangements for someone to take over from TAC in guarding the waste – and another company was hired to remove the waste entirely.

In March, TAC Gauteng was alarmed at the collapse of an entrance to the Charlotte Maxeke Hospital in Johannesburg. A hospital should be a place of safety and shelter, not a place where people are hurt. TAC Gauteng were unequivocal that urgent steps needed to be taken by MEC of Health Gwen Ramokgopa to audit the infrastructure all Gauteng health facilities, and ensure this does not happen again.

TAC Gauteng launched a fact-finding mission into the state of hospitals across the province. Not only are they monitoring the state of the infrastructure but also the state of service delivery. Are there enough doctors, nurses, porters and security guards? Are people sent home without medicines? How long must people wait to be seen in these facilities? Are the facilities clean? Are there enough beds? Do people get the service they need?

On 16 March, TAC Gauteng met with MEC Ramokgopa for the first time. They are committed to engaging with her constructively to bring an end to the crisis in the public healthcare system. In addition to other issues, they raised concerns over the state of facilities. They urged MEC Ramokgopa to undertake an urgent audit of health facilities across the province, the results of which must be made public, together with a plan to address any failings. The department must strengthen the Infrastructure Unit (in conjunction with the Department of Public Works) to address backlog maintenance, routine maintenance and the building of new health facilities – as well as ensuring better monitoring and oversight of material procurement processes – in order to prevent any further disasters in our health facilities.

Since 2012, TAC Gauteng have been raising concerns about the dire state of health facility infrastructure in the province. A report issued by TAC and SECTION27 at the time highlighted issues including the poor condition of buildings, power failures, the lack of safety features, potholes, and the non-functioning lifts; and the impact of these failures on the provision of healthcare. As recently as last September, TAC Gauteng picketed outside Thelle Mogoerane Hospital in Vosloorus, noting – among other issues – cracks and leaks in the hospital building that have yet to be addressed. Another picket took place at Pholosong Hospital in Tsakane, which is also in disrepair.

Especially alarming were reports that doctors at Charlotte Maxeke Hospital have been complaining for years about the structural problems. Even worse is that they felt the need to remain anonymous in making these reports. In our meeting, we urged MEC Ramokgopa to ensure a new era of openness, engagement and accountability from the provincial health department. No healthcare worker should fear victimisation or lack of job security as a result of speaking out. In order to ensure better communication flows, accountability structures such as hospital boards and clinic committees should be fully functional, to ensure the concerns of health workers and community members are addressed effectively. A system should be established to take management teams out of their offices and into the community to listen to the needs of the people on a regular basis.

Proper maintenance of existing infrastructure and the development of more suitable infrastructure is essential to ensure safety, suitability, cleanliness and the proper functioning of facilities across the province. While Treasury may cut the health facility revitalisation grant, the onus is on MEC Ramokgopa to ensure enough money is put towards maintenance projects through the equitable share. National cuts must not impact negatively on the quality of our health facilities.

10 things to know about TB in South Africa

Tuberculosis (TB) is still a crisis in South Africa. Here are 10 quick facts about the state of TB in South Africa.

  1. Tuberculosis (TB) remains a crisis in South Africa. It is the top cause of death indicated on death reports. There are over 400 000 cases of TB in South Africa every year. TB cases are slowly coming down, but it is not happening nearly fast enough.
  2. One of the biggest problems with TB is that we do not diagnose people fast enough and get them on to treatment fast enough. This is bad for the health of people with TB, but also contributes to the spread of TB in our communities. Two potential solutions are active case finding (ACF) and contact tracing. ACF is when healthcare workers or community healthcare workers go out and look for people with TB. Contact tracing is when we trace the family and/or work contacts of someone with TB and then test them for TB as well. Most experts agree that government must invest more in ACF and contact tracing, but unfortunately government has not shown much ambition in this regard. This lack of ambition is probably because government does not want to employ more people.
  3. Another critical problem in our response to TB is the poor infection control measures in most public spaces. In taxis, or in waiting rooms at clinics, or at Home Affairs offices, often the windows are not opened and all the people present breathe the same air. In addition, many prisons are overcrowded and create ideal conditions for the transmission of TB. Here too, government has not shown much ambition in dealing with the problem.

MDR TB

  1. There are over 20 000 cases of drug-resistant TB (DR TB) in South Africa per
    It appears that the rates of DR TB are going up – something which surely constitutes a public health emergency.

    year at the moment. It appears that the rates of DR TB are going up – something which surely constitutes a public health emergency. DR TB is much more difficult and more expensive to treat than normal TB. There is also evidence suggesting that most people with DR TB did not develop the drug resistance while being treated for normal TB, but were infected with TB that was already drug-resistant.

  2. Until recently, treatment for multiple drug-resistant TB (MDR TB) took two years, and often resulted in severe side effects such as deafness. However, the World Health Organisation recently recommended a new nine-month regimen with fewer side effects for the treatment of MDR TB. South Africa is in the process of introducing this new, shorter regimen.
  3. While the new nine-month MDR TB regimen is an improvement on previous regimens, it still entails a large number of pills and injections, and has is associated with substantial side effects. The good news, however, is that a number of trials are under way to test even shorter regimens that will contain no injections, and hopefully will have even fewer side effects. We should start seeing results from these trials in 2019.

XDR TB

  1. Extensively drug resistant TB (XDR TB) is the most difficult form of TB to treat, and over 70% of people with XDR TB in South Africa die within five years. There is good news, however: an ongoing trial in South Africa called Nix-TB is showing much higher cure rates for XDR TB than we’ve ever seen before. In the Nix-TB trial, people are treated with three drugs: bedaquiline, pretomanid and linezolid.
  2. While bedaquiline and linezolid are already registered and available in South Africa, pretomanid is not yet registered. Pretomanid is not being developed by a pharmaceutical company, but by a non-profit called the TB Alliance. Donors should work with the TB Alliance to make pretomanid available under compassionate-use concessions, so that people in South Africa with XDR TB can access the drug.

Latent TB

  1. People living with HIV are at higher risk of contracting TB. For this reason, people are given isoniazid preventative therapy (IPT) to prevent the development of TB. For years IPT treatment rates in South Africa were very low, but recent figures suggest that many more people are now receiving IPT and being protected against TB.
  2. IPT works well and can be taken for six months or a year, or even longer. It consists of a pill you must take every day. However, there is a new form of TB-preventative therapy called 3HP, which consists of isoniazid and another drug called rifapentine. The 3HP regimen involves taking pills only once a week, for a period of 12 weeks. If ongoing trials of 3HP in South Africa are successful, 3HP will replace IPT at some point in the next five years.

Nkhensani Mavasa’s speech at the opening of TAC’s sixth National Congress

Treatment Action Campaign (TAC) Chairperson Nkhensani Mavasa delivered the below speech at the opening of the TAC’s sixth National Congress on 23 August 2017. The speech has been lightly edited for publication.

Comrades,

It is my privilege to welcome you to TAC’s 6th National Congress.

Let us make overcoming this crisis central to all our work. – Nkhensani Mavasa, Chairperson of the Treatment Action Campaign (TAC)
Photo: AP

We are gathered here in a critical time in our history – both as members of TAC and as people who live in South Africa.

We have come a very long way since TAC was founded on the steps of St George’s Cathedral in Cape Town in 1998.

We have had many victories.

In 2002, we used the Constitution of this country to force our government to provide PMTCT to pregnant women who are living with HIV.

In the years that followed we kept up the pressure for a treatment programme for all people with HIV who need treatment.

Under the leadership of Health Minister Dr Aaron Motsoaledi, South Africa’s ARV programme has become the largest ARV programme in the world.

Comrades, together we won the battle for AIDS treatment. We helped save many thousands and thousands of lives.

We are still winning important victories in the courts – from our intervention in the case of Dudley Lee who contracted TB while in prison, to our intervention in the large silicosis and TB class action case last year, and most recently, the case of the Bophelo House 94 who stayed determined until their unjust convictions were overturned, and who in the process affirmed the right of all people in this country to protest.

Comrades, there are many heroes in TAC, but few more courageous than the brave and determined Bophelo House 94. Let us pause for a moment to applaud them.

Comrades, we also had many victories outside of the court room. Through our sustained and committed activism we have in recent years unseated under-performing MECs for Health like Benny Malakoane, Sicelo Gqobana and Qedani Mahlangu. This is hard work, but holding those in power to account is now needed more than ever given the crisis in our healthcare system. We must continue this work.

But maybe most important, are not the court victories or the holding accountable of MECs for health, but the clinic-level victories that are won on a day to day basis by our branches. These victories do not make the front pages, but they directly change the lives of our members and the people in our communities.

To all our branches, leadership, and staff across the country, we recognise you. You are the beating heart of TAC.

We also recognise our partners and allies in the struggle for social justice, many who are in the room here with us.

But even while we have had important victories, there is still a long and difficult road ahead.

I will speak about three crises we have to overcome on this road: gender discrimination, poverty, and our broken healthcare system.

Firstly, let me say this clearly, comrades, we have a serious gender discrimination crisis.

This is a crisis throughout our society and our various cultures. It is a crisis of men who hit or rape women, but also of everyday discrimination – a crisis of men who listen when other men speak, but who do not listen when women speak.

Comrades, this is not just a crisis out there, but also in here, inside TAC.

And even worse than the discrimination against women, is the discrimination against our LGBTQIA comrades.

Let us be clear, TAC has, and will always stand for the full equality of all people irrespective of gender or sexuality. There will be no room for discrimination at this Congress, and there should be no room for discrimination in any TAC branch or in any of our communities.

Let us make overcoming this crisis central to all our work.

Secondly, we continue to have a crisis of poverty in this country. Many of us are poor. Our friends and families are poor. And when you are poor, you can’t always buy food, you can’t afford transport, you can’t afford private healthcare.

Comrades, the crisis of poverty and inequality is at the root of so many of the problems in our country – be it healthcare, education, housing, or sanitation.

As TAC, we must strive for a more equal and a more fair world. This is why it is obvious that we should support National Health Insurance. It will take many years, but ultimately NHI will make us more equal and will bring quality healthcare to more people in this country.

Poverty is also the reason why we must insist on good governance. We cannot afford for the state’s money to be wasted while the people are suffering. We should never turn a blind eye to corruption – whether it be in the public sector or in the private sector, at district, provincial or national level. It is always the poorest of the poor who pay the highest price for corruption and mismanagement.

Thirdly comrades, our clinics are in crisis – and with it much of the public healthcare system.

Posts are being frozen, provinces are running out of money, the National Health Laboratory Service only has enough money until December.

I do not have to tell you about the poor TB infection control, the understaffing, or the medicine stockouts at our clinics or hospitals. We, we the TAC branches, we see these things every day. Our branches are on the frontlines – and it is our branches who can help turn things around. Every branch must hold its local clinic, hospital and school accountable. We must be on the clinic committees, on the hospital boards and on the local and district AIDS Councils.

We must monitor our clinics, as we did with our recent TB infection control survey.

We must tell the stories of our people who are struggling to access decent healthcare.

We must know our rights and we must know the science and treatment of HIV and TB.

Armed with this knowledge, we must hold those in power to account.

Comrades, we won the battle for ARVs, but at the moment we are losing the battle for quality healthcare for all.

At this Congress, we are tasked with making the decisions and electing the leaders who will help us overcome the three crises I have described – of gender discrimination, of poverty, and of our broken healthcare system.

Comrades, we are all part of one TAC. And because we are part of TAC we share certain common values.

  • We all want to see an end to all forms of discrimination – be it based on gender, on disability, on how much money you earn, or on your race.
  • We all want to see a healthcare system that provides quality healthcare to all who live and work in this country.
  • We all want to see a public service that is free of corruption and mismanagement.
  • We all know the power and the value of the Constitution and the importance of using it strategically.

There will be disagreements this week. I urge you, let us disagree constructively.

Let us respect all our comrades, and let us listen to the arguments of those who disagree with us.

Let us not be lazy in our thinking, but let us respectfully interrogate both each other and ourselves.

Let us be serious about our task – for lives will depend on the decisions we make this week.

And let us respect TAC’s democratic processes and give the new leadership we will elect this week our full support.

Above all, let us be drawn together by our common purpose.

  • Comrades, we know poverty.
  • We know the stigma of HIV.
  • We know what it feels like to lose a loved one to illness.
  • We know what it is like to wait for hours at the clinic, just to be told there are no medicines.
  • We know what it feels to have our dignity trampled on.

Let this common knowledge draw us together.

But comrades, in TAC we also know our rights – and our rights continue to be violated every day.

Let this be the congress where we come together and say “NO MORE!”

No more.

I thank you.

You can follow @SpotlightNSP and @TAC on twitter for updates from the TAC National Congress.

 

Treatment Action Campaign: Special Edition

We have prepared a special print edition of Spotlight to coincide with
the Treatment Action Campaign’s 6th National Congress taking place
from 23 to 25 August 2017. Amongst others it contains updates from all
seven TAC provinces and articles on treatment adherence and the future
of ART – as well as short briefings on the state of the TB response,
the state of SANAC and analysis of South Africa’s National Strategic
Plan for HIV, TB and STIs 2017-2022.

Read more here: Spotlight Special Edition

Opinion: Will we get the NSP right this time?

By Marcus Low, Spotlight Editor

At the end of this year South Africa’s big plan to fight HIV and tuberculosis (TB) comes to an end. The National Strategic Plan (NSP) for HIV, TB and STIs 2012-2016 will be replaced by the 2017-2021 NSP. It is vital that the new NSP avoids the mistakes of the past and fully incorporates new scientific evidence. It is also critical that it sets an ambitious and realistic course that all of South Africa can get behind, not just people working in health care.

What went wrong with the previous NSP?

While there was a lot that was good in the previous NSP, we need to be honest about the problems with the Plan and how we implement it. A great plan on paper is of little use if we do not have the systems or political will to use it effectively. Looking back over the past five years, two problems stand out.

Firstly, there was so little effective tracking of our progress against NSP targets that we only occasionally got an idea of how we were performing against the targets. The NSP would have been of much more value if every single district or provincial AIDS council meeting had up-to-date data on a series of key indicators for their area. In the absence of such data, much of the work relating to the current NSP was done in a vacuum. This contributed to a lack of focus and direction.

Secondly, the lack of coordination between government and AIDS councils meant that the NSP often ended up feeling irrelevant when it came to the actual implementation of TB and HIV programmes. Few people seem to understand that at all levels, the NSP and the work of AIDS councils are supposed to set the course for our collective AIDS response. Instead, government, local and national, appeared to do what it wished irrespective of the work done in AIDS councils, KwaZulu-Natal at times being a notable exception. This tendency of government to forge ahead with little regard to AIDS councils undermined the vision of a wider societal AIDS response drawn together by the NSP and AIDS councils.

Top six priorities in the next NSP

To deal with these problems and to provide for a more focused and effective NSP, the following should be considered for the NSP 2017-2021:

  • We need real-time monitoring of the health-care system

Rather than creating long lists of targets, the NSP must set fewer targets that we know we can track. It is essential that these indicators must regularly be shared with AIDS councils at all levels. When a district AIDS council meets, it must have fresh stats for the entire district as well as for each facility in the district. This will help focus our response in the areas where it is most needed. Often this data is already available to the Department of Health or the National Health Laboratory System, but is not shared timeously with AIDS councils or the wider public. If the new NSP is to revitalise society’s response to TB and HIV, the Department of Health will have to start sharing more data with society.

  • We need a roadmap to treatment for all

The landmark START (Strategic Timing of AntiRetroviral Treatment) trial showed us that all people living with HIV should be offered antiretroviral treatment. In line with these findings and with World Health Organisation guidelines, all people living with HIV in South Africa will be eligible for treatment from September this year. But merely making more people eligible is not enough. As shown by the recent TasP (Treatment as Prevention) trial, much of the challenge will be to test people and then to get people who test positive to start treatment. Making a success of such a campaign will require a very ambitious new test-and-treat campaign – as well as employing the thousands of community health workers and lay counsellors required to make such a campaign work. All this must be carefully planned, budgeted and coordinated through SANAC. The document that must bring all that planning together in one place is the new NSP.

  • We need an ambitious plan for TB

While the new NSP will undoubtedly have good and aspirational targets for TB, it should also provide clear guidance on how those targets could be reached. For example, it should set South Africa on a course for dramatically scaled-up contact tracing and active case-finding. Since these are human resource-intensive activities, government has shied away from them; the NSP has to break this impasse. Similarly, the NSP should show the way toward addressing infection control both in the public and private sector so that we can reduce TB transmission in schools, correctional facilities, taxis, hostels, shops, the mines, and all other places where TB is transmitted. As with HIV testing and linking to care, the TB response will not succeed if we can’t grow it outside of the health-care system.

  • We need to implement an ambitious and evidence-based HIV prevention plan

All indications are that the rate of new HIV infections in South Africa is still very high (around 280,000 per year). Rightly, much of the talk at the recent International AIDS Conference in Durban focused on prevention, especially prevention in women and girls aged 15 to 24. It is clear that we urgently need to ensure that all young people in this age group have easy access to condoms, and comprehensive sex education. Yet, between the Department of Health and the Department of Basic Education, government seems incapable of getting its act together in any meaningful way. The new NSP must help break this deadlock. It must launch a serious, focused, sustained, HIV prevention campaign, driven and endorssed by the Presidency, targeting schools and children of school-going age.

The NSP must also ensure that proven HIV prevention interventions, like condom provision and voluntary medical male circumcision, are scaled up aggressively. Promising initiatives such as the provision of pre-exposure prophylaxes to sex workers must be continued and expanded to other groups of people who are at high risk of HIV infection.

  • We need concrete plans to bring in business and labour

Ensuring more people are tested and then started on treatment will require taking our AIDS response beyond the health-care system. Many people, especially men, simply never go near a clinic and we have to find other ways of reaching them. The solution, however, is not to hold talk shops in Sandton every six months. Instead, the NSP must outline concrete ways in which business and labour can play a part in the HIV and TB response by, for example, facilitating HIV testing in the workplace. It must be a key part of the work of district AIDS councils to invite and involve local business and labour to be part of our TB and HIV response in concrete ways. There are already good examples out there. We must learn from them and replicate them.

  • We need to reform SANAC

One of the elephants in the room is the severe dysfunction in many SANAC sectors. Unfortunately, these sectors are often little more than talk shops. Where it matters, for example in relation to medicine stockouts and the ongoing crisis in the Free State public health-care system, SANAC leadership is often missing. Leaders should be keeping government on its toes and pushing a progressive agenda if SANAC is to have any relevance going forward and if SANAC is to help mobilise wider civil society in our collective TB and HIV response.

Part of the change will have to be in leadership, but a large part of it will have to be in the way SANAC is structured. Unpopular as such a move might be, all SANAC sectors should be disbanded. It is deeply disappointing, but for various reasons they simply haven’t delivered as many of us hoped they would. Instead, a single SANAC task force of no more than 15 people, including the Minister of Health and the Deputy President, should be established and should meet at least once a quarter. Business, labour, health-care worker groups and membership-based civil society organisations must all be represented in this task force. Critically, no individuals who are not accountable to substantial constituencies should be on this task force. In addition to the task force, SANAC should also convene a technical task team made up of appropriately qualified experts to consider technical scientific issues and to provide advice to the SANAC task force and the Minister and the Presidency.

Top eight indicators for the new NSP

It is critical that we monitor our TB and HIV response in as close to real-time as we can. It is also essential that we get data sliced up by district and facility so that we can see where the trouble spots are and respond to them effectively. Ideally, all of the indicators below should be available to every ward, district, and provincial AIDS council in the country. This data should also be available to all members of the public. (Note, these suggested indicators include monitoring against the UNAIDS 90-90-90 targets – By 2020, 90 percent of all people living with HIV will know their HIV status, 90 percent of all people with diagnosed HIV will receive sustained antiretroviral therapy, 90 percent of all people receiving antiretroviral therapy will have suppressed viral load.)

  1. Number of people tested for HIV in the last three months by facility, district, province, and nationally.
  2. This statistic should also be expressed as the percentage of HIV-positive people who know their status (the first 90) if possible. Number of people on antiretroviral treatment by facility, district, province, and nationally. Ideally, this statistic should also be expressed as the percentage of people who know their status that are on treatment (the second 90).
  3. Viral load coverage by facility, district, province, and nationally. Viral load coverage must be expressed as the percentage of people on treatment who have received at least one viral load test in the last 12 months.
  4. Viral load suppression rate by facility, district, province, and nationally. This should be expressed as the percentage of people on antiretroviral treatment who are virally suppressed (the third 90).
  5. Number of people with a confirmed diagnosis of Drug-Sensitive-TB and Drug-resistant TB by facility, district, province, and nationally.
  6. Percentage of people with DS-TB or DR-TB who have started TB treatment by facility, district, province, and nationally.
  7. DS-TB and DR-TB cure rate by facility, district, province, and nationally.
  8. HIV vertical (mother-to-child) transmission rate at six weeks and 18 months by facility, district, province, and nationally.