Humans in the Age of HIV

We turn the spotlight on people living or working on the margins in South Africa. Referred to some as key populations, these folk – sex workers, trans people, MSMs, injecting drug users, LGBTQIA+ people – are at more risk of HIV and are often forgotten. Read about them here and then go to our website to read the longer stories.

New dawn in TB prevention therapy

It is estimated that around 1.7 billion people on earth are infected with tuberculosis (TB). In these so-called latent infections, people have TB in their bodies, but they have the bacteria well enough under control so as not to get sick. The risk to these people is that the TB might “activate” and make them ill should their immune system become weak, which could for example happen due to HIV infection.

Without a broadly effective vaccine that could give protection for TB to either prevent TB infection, or prevent infection from activating into TB disease, currently, the best option for TB prevention is to treat such TB infections with medicine.

The benefits of using isoniazid, one of the oldest and most powerful anti-TB medicines, to prevent TB infection from activating have been known for years. Studies published recently have provided very compelling evidence showing that providing people living with HIV with isoniazid substantially reduces their risk of TB and of dying. Yet, uptake of isoniazid preventative therapy around the world has been very slow – with recent scale-up in South Africa being a notable exception.

Isoniazid can prevent TB disease when given daily for anywhere from six to 36 months, with nine months being most common. These days isoniazid is also available in a single tablet along with cotrimoxazole (an important medicine for preventing other kinds of infections in people with advanced HIV) and vitamin B6 (which must be given along with isoniazid to prevent isoniazid’d from damaging nerves).

The long duration of treatment with isoniazid might be one reason why uptake has been poor. Another is that people taking preventative therapy are by definition not ill with TB and might thus lack motivation to take the pills, especially when they come with potential side effects such as liver damage.

New shorter regimens

In recent months and years, three new options for TB preventative therapy have done well in clinical trials. The two common factors in these trials are that (a) the length of treatment is reduced and that (b) they all make use of a class of drugs called the rifamycins.

The most well-studied, and at this stage the most likely new regimen to reach public sector clinics in South Africa, is called 3HP. The 3HP regimen consists of three months during which two medicines are taken just once a week. The two medicines are isoniazid (often abbreviated as H) and rifapentine (abbreviated as P). Like with isoniazid alone, these must also be given with vitamin B6. This regimen is relatively well studied and is already included in the treatment guidelines of the United States Centres for Disease Control and the World Health Organization. Its use is recommended in both people with and without HIV infection, including children age 2 years and older. South Africa’s National Strategic Plan for HIV, TB and STIs 2017 – 2022 specifically mentions 3HP and commits to making this regimen available should further evidence support it.

The 3HP regimen has significant advantages over isoniazid alone. It has much less effect on the liver than the daily isoniazid regimen. Because it is so much shorter—just 12 weeks compared to months or even years of isoniazid—people may prefer it. Indeed, trials have shown that participants complete the 3HP regimen much more often than a longer isoniazid-based regimen.

One concern with the 3HP regimen is that rifapentine may have an interaction with a critical new HIV medicine called dolutegravir. We expect to learn in early 2019 about findings from a study designed to give a definitive answer on whether it is safe to use rifapentine with dolutegravir, and whether dosing changes to dolutegravir will be needed when using the two medicines together.

The other concern with 3HP is that rifapentine is still quite expensive, at USD $45 for the rifapentine portion of the 3HP regimen (this does not include the isoniazid or vitamin B6). The good news, however, is that rifapentine is off patent and more companies are expected to bring rifapentine products to market in the coming years – thus pushing the price down through competition. And even before then, this cost of preventing TB cases is far less than the economic and social costs of allowing the TB infection to progress to active disease and infect others.

A second new option is the so-called 1HP regimen. This regimen requires taking two medicines plus vitamin B6 a day for only one month. This is even shorter than the 3HP regimen, and the daily rather than weekly dosing may be preferred by people with HIV who are taking daily antiretrovirals anyway. The two drugs used in 1HP are the same as in 3HP – rifapentine and isoniazid – accordingly, the same pricing and drug interaction concerns seen with 3HP are also concerns with 1HP. A study reported in March 2018 found that 1HP was non-inferior to nine months of isoniazid in people living with HIV and resulted in fewer adverse events. 1HP is however less well studied than 3HP, and has not yet been studied in people without HIV – something that makes it unlikely that the regimen will beat 3HP to clinics.

A third new option is called 4R and involves four months of daily rifampicin pills. Rifampicin is of the same drug family as rifapentine but has been much more widely used given that, like isoniazid, it forms part of the standard four-drug treatment for active TB. A large study published in August 2018 found that this four-month rifampicin regimen is non-inferior to nine months of isoniazid. Like rifapentine, rifampicin does interact with some HIV medicines and can require dosing adjustments of antiretrovirals. Additionally, there were few people living with HIV in this trial, so it is not yet certain how well 4R works in this population.

One advantage of 4R is that Rifampicin is much less expensive than rifapentine. Another advantage is that this regimen could be good for people who cannot tolerate isoniazid. At four months, 4R is however longer than the rifapentine-based regimens.

In any case, it seems likely the days of isoniazid-only TB prevention are over, with shorter options that may help people start, and finish, therapy to prevent TB. For now, its most likely replacement is 3HP.

 

 

 

AIDS2018: Reduction in price of bedaquiline welcome, but is it enough?

This week the price of bedaquiline in the public sector in South Africa was cut in half. What does this mean for the increased uptake of this critically important TB drug across the world?

This week at the International AIDS Conference South Africa’s Minister of Health Dr Aaron Motsoaledi announced that the South African government had negotiated a much-reduced price for the multi-drug resistant tuberculosis (MDR-TB) drug bedaquiline.

Bedaquiline is something of a break-through drug being one of only two new TB drugs approved in the last half-a-century. The South African government recently announced that bedaquiline will replace kanamycin injections in the country’s standard treatment for MDR-TB. This decision has been widely welcomed given the serious side-effects, such as irreversible hearing-loss, related to the painful injections. It is expected that the World Health Organization and other high-TB-burden countries will follow South Africa’s lead.

The new price announced by Minister Motsoaledi is $400 (around R5400) for a six-month treatment course. This is down from a price of $750 according to Motsoaledi. The figure quoted to Spotlight by the Department of Health last month was $820. Either way, the South African government has managed to negotiate a price drop of around 50%. For this they deserve credit.

More good news is that the new price will also be available to countries purchasing bedaquiline through the Global Drug Facility and to countries that benefited from the soon-to-end bedaquiline donation programme. It is now up to these countries to update their MDR-TB treatment guidelines and to ensure that all people who can benefit from the drug has access to it. So far, uptake of bedaquiline outside of South Africa has been depressingly poor and many people are still being exposed to hearing-loss causing injections of doubtful efficacy.

And yet, even the $400 price is far from ideal. Researchers from the University of Liverpool have estimated that bedaquline could be produced and sold at a profit for under $100. The researchers did however assume much larger volumes than current demand – so that price might not be realistic right away. It is with this in mind that activists recently demanded that bedaquiline should be priced no higher than $200 for a six-month course. Whether this demand played a role in the price-cut is not known.

For some perspective, a year’s supply of first line antiretrovirals costs the South African government about $100. Six months of drug susceptible TB treatment (a full course) costs less than $30. It should also be kept in mind that bedaquiline is just one of multiple drugs used for MDR-TB and the entire MDR-TB drug regimen will thus cost much more than $400.

It seems likely that for bedaquline to become available to all people who need it across the world the price will have to be dropped further. Then said, this week’s price-cuts is a firm step in the right direction. It is now up to countries to start scaling up use of this drug and over time to negotiate further price cuts.

Low is both an editor of Spotlight and a member of the Global TB Community Advisory Board, one of the organisations that demanded a reduction in the price of bedaquiline. The views expressed in this article are his own.

AIDS2018: Time to make AIDS political again

By Anele Yawa

Two years ago, we welcomed the world to the International AIDS Conference

Anele Yawa at the Durban2016 march

in Durban, South Africa. At a march of ten thousand people we held up banners proclaiming that 20 million people still need treatment. At that conference we said to the world that AIDS is not over – and indeed, the misguided rhetoric about the end of AIDS have now given way to more sober, more realistic assessments. The reality is that we are still in the thick of it.

In South Africa, as in many other countries, the first phase of the global AIDS response was a fight for policy. It was a fight for the idea that governments have a responsibility to do whatever they need to do to get HIV treatment to the people who need it. In our country it involved various court cases and a fight against AIDS denialism. Around the world it required a massive effort by activists, researchers, diplomats, progressive business persons and willing governments. Our shared success is something to be celebrated.

That said, the victories of this first phase of our struggle against HIV has to be won again and again. We cannot take the recognition of the human rights of all people for granted nor can we take the affordability of medicines for granted. As we hear reports of plans to shut down UNAIDS without any public consultation, we can’t take even United Nations support for granted. As we know too well, we can’t take continued political will or funding from our governments for the AIDS response for granted either. All this work from the first phase of the AIDS response must continue and we must support each other in it.

Almost everyone agrees today that we need to provide prevention, treatment and care to all who need it. The wide adoption of the 90-90-90 targets are testimony to that consensus. We have reached a point in the AIDS response where the question is not so much what to do, but rather how to actually get it done given the state of our healthcare systems.

We now know that policy victories and innovative technical interventions can only take us so far. In South Africa, and in many other countries, the AIDS response has come up against a wall. This wall is the widespread dysfunction in our healthcare systems. It doesn’t matter how good our donor-written policies are if they are never implemented. It is no use if we have medicines in depots, but the medicines never reach the people in the clinics. Beautiful guidelines for treatment and care mean little if we refuse to employ healthcare workers to actually provide the treatment and care.

As TAC we we are very clear: Our struggle against HIV is now in a new phase, a phase where our fundamental struggle is against dysfunction, mismanagement and corruption in our public healthcare system.

This new phase of our struggle is, in its way, much harder than the struggles against AIDS denialism and profiteering pharmaceutical companies. There are fewer victories to be had in laws or in policies. The problems we face are much more diffuse and harder to influence. Meetings in board rooms in Geneva, New York or Amsterdam matter less in this phase of our struggle, while community meetings in Lusikisiki and Khayelitsha matter more and more.

As TAC we have in recent years attempted to create accountability across the public healthcare system in South Africa. Our 200 branches spread across the country have each adopted a clinic – where our members, all users of the public healthcare system, both monitor and provide support where possible. Where issues persist, we escalate them to district or provincial level, and if needs be to the National Department of Health. Let me be clear, the more we monitor, and the more systematically we monitor, the more disturbed we get about the near collapse of our public healthcare system.

Our recent monitoring reports on seven of South Africa’s nine provinces paint a very bleak picture. In these and in our previous reports, it has become clear that TB infection control measures are grossly deficient in many facilities – turning many clinic waiting areas into likely transmission areas. Our diagnosis of widespread dysfunction in public sector facilities is confirmed by devastating reports from the Office of Health Standards Compliance (a statutory health inspection body that reports to parliament).

The crisis in many of our public facilities does not come from nowhere. Over the last decade, on the watch of former President Jacob Zuma, corruption has flourished in South Africa and the public service has been systematically hollowed out. This has directly impacted the healthcare system and the AIDS response.

It is worth recounting some details. Recently in emerged that millions ear-marked for HIV in the North West province was looted to pay overinflated prices to a controversial ambulance company that is now the subject of police investigations. This is while over 200 000 HIV treatment eligible people in that province are not yet on treatment.

In the same province strikes resulted in the shutdown of the public healthcare system, a shutdown that meant medicines distribution had stopped completely for weeks on end. Some shared treatment with others, others paid high prices in private pharmacies, many simply defaulted. These strikes, and a similarly disruptive strike at a Gauteng hospital, suggest that more healthcare workers are now prepared to strike in ways that place patients at risk. It tells us that the ethos of public service has dangerously eroded.

Of course, there are still many good people trying to do their best within a failing system. The tragedy though is that there is so little help for them. While some politicians come when there is a strike or a protest, they generally show little interest in fixing the underlying problems plaguing the system. Indeed, many officials in provincial departments of health have been appointed for political reasons or with corrupt motives and have neither the inclination or the ability to start turning the system around. And even with Jacob Zuma gone, the balance of powers in the ANC is such that many corrupt and underperforming persons remain firmly in place.

Part of why Cyril Ramaphosa is now President of South Africa is a deal he made with David Mabuza, the former Premier of Mpumalanga province and now Deputy President of South Africa. Mabuza has generally been associated with some of the more unsavoury characters in the ruling party and on his watch Mpumlanga politics was mired in alleged corruption. As Deputy President Mabuza is also now the new head of the South African National AIDS Council, a body already ridden in controversy over the way it removed its former CEO and its failure to deal decisively with conflicts of interest. While Premier in Mpumlanga and chairing that province’s provincial AIDS council, Mabuza failed completely to address that province’s severe HIV crisis, not to mention the general corruption of that province’s government.

That Mabuza is now making some of the right noises on HIV and TB is of course welcome and we will hold him to his words. That our government has finally approved a progressive new policy on patents and medicines 17 years after the Doha Declaration is also welcome. That our Department of Health has shown urgency in introducing new medicines such as bedaquiline for MDR-TB and dolutegravir for HIV is to be applauded.

But, as Minister Aaron Motsoaledi recently admitted, South Africa’s healthcare system is in crisis. From our national department he has tried to stop the crisis, but in South Africa the healthcare system is run by provinces and Motsoaledi has been powerless to get the provinces into line. The underlying reality is that inside the borders of South Africa, our internationally popular Minister is severely hamstrung by his lack of political power.

Ultimately, as with all the issues we faced in the first phase of our struggle, the second phase is also fundamentally political. And as we have to address the patronage networks within our ruling party in South Africa, we call on our international allies to address the distorted values of the current United States administration and to seek out again the international solidarity that made our movement as successful as it once was.

As the world gathers in Amsterdam for the 22nd International AIDS Conference, my appeal to you is to once again make AIDS political. Just like the gag rule and Global Fund withdrawal is political, the failure in my country to act against corrupt individuals is political. The potential shutdown of UNAIDS and the mishandling of sexual harassment at the agency is political. In recent years we have too often played nice with our elected leaders and as a result they have come to believe that AIDS is almost over. We must once again take the gloves off and make AIDS political. We have elected our leaders, we demand that they deliver the AIDS response and the healthcare systems we need.

Anele Yawa is the General Secretary of the Treatment Action Campaign. The TAC is a South African membership-based organisation that advocates for the rights and interests of people living with and affected by HIV and TB.

AIDS2018: Humans in the Age of HIV-Young people & SRHR

By Ngqabutho Mpofu

Nosipho Soga is a 19-year-old learner who hails from Kuyasa, a Khayelitsha township in Cape Town. She can best be described as bubbly, intelligent, engaged and relatively small for her age. It is clear that she is used to people questioning her age, assuming that she is much, much younger. So much so that she carries her Identity Document with her everywhere she goes just to prove that she is above the age of 18.

Nosipho has seen many of her peers fall pregnant and contract Sexually Transmitted Infections and HIV. It is their experiences, as well as the high prevalence of HIV in this group that has fueled her activism. According to South Africa’s National Strategic Plan for HIV, TB and STIs 2017-2022 adolescent girls still face high rates of HIV making up 37% of new infections with around 100, 000 new infections a year[1].

It is such concerns that encouraged Nosipho to join the Treatment Action Campaign (TAC), a membership-based organisation that advocates for the rights and interests of people living with and affected by HIV and TB.

Nosipho’s work is centered around ensuring that adolescent girls understand sexual and reproductive health rights and make sure they access these services.  TAC’s youth groups meet every Wednesday to engage on issues affecting them. These mainly relate to sugar daddies, and knowledge sharing in a context of very little sexuality education.

Nosipho argues  that “sugar daddies that engage in inter-generational relationships are a big part of the problem”. She locates this in South Africa’s socio-economic problems, arguing that many young girls resort to such relationships in order to eke out a more dignified existence in a context of extreme poverty, inequality and unemployment. These relationships typically involve a older man with greater resources and power and a significantly younger woman with no financial resources or social capital. Such distorted power relations have left many young women susceptible to intimate partner violence and less able to negotiate safe sex.

Furthermore, the short-comings of the Department of Basic Education’s Life Orientation programmes in schools, according to her, also further accentuates the problem because it is foundational in nature and does not teach learners much more than they already know.

In many instances learners are unaware of the numerous ways they can protect themselves from HIV and STI infection, as well as from unwanted pregnancies, placing them at great risk, she says.

In 2016, the State introduced the ‘She Conquers’ programme, with the intention of ensuring more economic opportunities for adolescent girls; reducing gender-based violence; significantly reducing teen pregnancies and ensuring access to youth friendly sexual and reproductive health (SRH) services. However, many youths do not know about it, says Nosipho. “we do not have access to youth friendly sexual and reproductive health services because we feel like we cannot talk about sex and sexuality to nurses at the local clinics without being judged.”

This article is part of a Spotlight special series on people who form part of so-called key populations.

[1] SANAC, “National Strategic Plan for HIV, TB and STIs: 2017-2022”, http://sanac.org.za/wp-content/uploads/2017/05/NSP_FullDocument_FINAL.pdf, accessed 16 July 2018.

AIDS2018: Humans in the Age of HIV-All about Love

By Ngqabutho Mpofu

Dressed in a Robert Sobukwe Dashiki and trendy shoes, Thando Jack draws

Thando Jack
by Joyrene Kramer

gazes from the mainly white upper middle-class folk in Cape Town who can afford to be taking a stroll in the Company Gardens during a week day. They obviously try not to but there is something about him that captivates them.

When we start engaging, it becomes clear that it Is a genuine sense of love and concern about members of a community that embraced him that makes Thando do the work he does. It is alarming figures such as those released by UNAIDS that spur him on. According to UNAIDS, Men who have sex with Men (MSM) globally are a staggering 24 times more likely to be living with HIV than the general population[1]. A 2015 study in South Africa found that 33.9% of gay-identified men in a research sample of 378 black MSM in the historic township of Soweto were found to be HIV positive[2]. This is compounded by the finding that between 88% and 94% of MSM in South Africa were reported to not know their HIV status, in a context where high levels of concurrent sexual partners among the Soweto cohort, for instance, was reported by 73% of respondents[3].

It is these figures and his own lived experience as an MSM that led 28-year-old Thando Jack to becoming an activist since his late teens. His extreme passion for ensuring that MSM access affordable, quality health care services is clear from the moment he starts engaging.

Working as a data capturer at a prominent men’s health non-governmental organisation (NGO) in Cape Town, South Africa, Thando is at the coalface of clinical consultations focusing on ensuring that data involving HIV tests results, on the treatment programme, including the rate of defaulting, and on the outcomes of TB test results are meticulously captured. The organisation runs programmes in Cape Town and Johannesburg, as a result of the high MSM populations and the corresponding high risk of infections in these two cities.

Despite many gains, including a progressive Constitution and law reform that allows the LGBTI+ community to enjoy the same rights as heterosexual people, Thando is worried about numerous factors that continue to affect MSM’s access to healthcare services in South Africa, including stigma. “Many health workers are still not informed or sensitive about MSM issues when providing healthcare despite the numerous interventions of organisations such as Anova Health and Health4Men, who conduct sensitization trainings in health facilities across South Africa”, says Thando. “Just from engaging with a clinician in history taking and explaining how you got anal warts or Gonorrhea, you can see from the reaction that you are being discriminated against. It’s sad. You would hope that someone who has the courage to get out of bed to seek medical health care is not treated that way”, he says.

Sensitisation trainings occur for health practitioners in both public and private practice. The programme has a website that directs MSM to health practitioners who are MSM friendly. These are services that do involve greater awareness, tolerance of others and less stigmatization of health seekers on the basis of their sexual orientation. For Thando, it is imperative that programmes such as these are amplified to reach areas beyond just Johannesburg and Cape Town, as MSM in other areas will be better placed to seek health care services knowing they won’t face the discrimination they often still face. “There is still a need for more public and private health care workers to undergo this MSM sensitization training throughout the country, as only a certain portion have gone through this programme”, he says.

Ivan Toms clinic in Cape Town, which Thando highlights as an essential health care facility in improving the fight against HIV amongst MSM and the site from which they work has about 13 000 patients who leave their own communities and local clinics from areas as far flung as Paarl, Atlantis, Fish Hoek, Wellington, as well as nearby areas such as Khayelitsha, Phillipi, Gugulethu and Kraaifontein in order to access critical health care services from practitioners who are MSM friendly. They acknowledge the importance of the right to food through providing food and/or energy drinks to underweight patients in their road to health[4].

Having been born and raised in Gugulethu, and realizing the continued stigma faced by MSMs in his community when attempting to access healthcare, a critical worry of Thando’s is that safe spaces such as the health facility he works for will have to shut down their doors as a result of potential funding cuts from prominent international donor organisations. This could quite conceivably result in many defaulting and in an increase in avoidable deaths of many people, some of whom make up his close community.

The external stigma; continued fear of help seeking among men and the potential funding crisis form a deadly cocktail that would effectively place the gains made among MSM through the ‘universal test and treat’ policy[5] from the national Department of Health in jeopardy.

For Thando, “when it comes to the needs of the MSM population and significantly reducing the rate of infections, it is important to find innovative ways and systems to help in fighting HIV. We need to keep up with new technologies and knowledge to do so, something we aren’t really doing at the moment.”

This article is part of a Spotlight special series on people who form part of so-called key populations.

[1] UNAIDS (2017), “Blind Spot: Reaching out to Men and Boys – Addressing a Blind Spot in the Response to HIV”, PDF.

[2] Lane T, Raymond HF, Dladla S, Rasethe J, Struthers H, McFarland W, et al. “High HIV prevalence among men who have sex with men in Soweto, South Africa: Results from the Soweto Men’s Study” in AIDS Behav. 2011;15(3):626–634.

[3] Ibid and Burrell E, Mark D, Grant R, Wood R, Bekker LG, “Sexual risk behaviours and HIV-1 prevalence among urban men who have sex with men in Cape Town, South Africa” in Sexual Health. 2010; 7 (2):149–153.

[4] Ivan Toms Clinic (2018), http://search.info4africa.org.za/Organisation?Id=83901., accessed 10 July 2018.

[5] Department of Health, “Re: Implementation of the Universal Test and Treat Strategy for HIV Positive Patients and Differentiated Care for Stable Patients”,  http://www.sahivsoc.org/Files/22%208%2016%20Circular%20UTT%20%20%20Decongestion%20CCMT%20Directorate.pdf, accessed 10 July 2018.

AIDS2018: Humans in the Age of HIV-Where I work now, I actually feel like a woman

By Nomatter Ndebele

Thirty-seven-year-old Zelda Leonie, has been a sex worker since she was 17 years old. She decided to go into sex work when she realized that she could not depend on her mother to provide them with everything, so she turned to sex work. “I was desperate, I wanted things that my mother couldn’t give me, so I decided to make my own money,” said Zelda.

As she reflects, Zelda admits that in the beginning it worked out well for her, she was able to make her money and pay for everything and anything she wanted. After a few years however, the sex work got more intense, and she started to encounter a lot of abuse.

Some clients, would tie her up, beat her and throw her against the walls.  Zelda starts tearing up, as she shares this information. At one point, she looks into the camera and announces “ I can’t do this.” She bursts into tears and quickly moves out of the frame. After a few moments, she decides she is ready to continue.

Now, Zelda speaks about her new life. She has now become a masseuse, after her friend took her off the streets and tried to get her a new job. “Now I just do massages, and if a client wants a happy ending, he has to pay more.” Zelda is reluctant to say she is still a sex worker, she chooses to focus on being a masseuse more than anything else.

Zelda sees this opportunity of having a job, as a step in the right way in relation to changing her life. “Where I work now, I actually feel like a woman, the clients are respectful and they treat me like a woman,” she says smiling.

Her message for other girls who are involved in sex work is a simple one “I just want everyone who is involved in sex work, to know that if you want to get out, you can. Just like I did.”

This article is part of a Spotlight special series on people who form part of so-called key populations.

 

AIDS2018: Humans in the Age of HIV-Carmen is impossible to miss

By Nomatter Ndebele

Carmen is impossible to miss. She comes sauntering down the road with her luscious  black locks bouncing gently behind her, as she moves closer she casually drops her arms and reveals her toned abdomen, sporting a tattoo that rises to the side of her midriff.

Carmen is a transgender person who does sex work. Yesterday we met her as Clinton.

Pic by Joyrene Kramer

You wouldn’t say this was the same fidgety man we met in the blistering cold yesterday, trying to make his way to the drug dealer to calm his morning nerves. Today, Clinton is no more, and we are greeted by the beautiful Carmen.

Today, her face is softer, she is visibly more gentle and her voice has a softer tone to it. Her face is meticulously done up, highlighted and contoured to absolute perfection. She is a beautiful woman, with piercing  hazel eyes and once they settle on you, she’s got you.

Carmen is about as key population as you can get:  A transgender person who has been taking drugs from the age of 14 and who has been involved in sex work from the age of 18. If all the talk in the HIV world about serving key populations were being implemented, Carmen would have all the support she needs. However, this is not the reality.

Brixton Cemetery next to Vrededorp where we initially met Clinton is a hive of constant activity. While some rest, injecting drug users mill about to find spaces to take their hits. Sex workers look for spaces where they can provide services to their clients. In the evenings the cemetery comes alive with hundreds of destitute night dwellers.

Carmen has been a sex worker for 14 years now.  She has gone from working in surreptitious establishments to picking up clients on the side of the road. Within her first year and a half of doing sex work Carmen calculates that she has provided sexual services to over 100 men. Most of these men are married and straight, she explains, all of them trying to live out their fantasies, in such a way that they never intersect with their daily realities.

Carmen has been dating her partner, Justin, for three years now. Justin has a job as a carpenter, he has dark brown hair, that match his eyes, and he too is addicted to heroin.

Pic by Joyrene Kramer

The two had to figure out how they were going to maintain their relationship, while Carmen continued with her sex work. “It was really hard in the beginning, but I guess I have got used to it by now and it doesn’t bother me as much,” says Justin. Out of respect for her partner, Carmen says she no longer “picks up” men on the side of the road and doesn’t wear feminine clothing as often, despite the fact that she can make a lot more money when she is dressed up.

On evenings where Carmen goes to meet clients, Justin waits patiently at home. “I wait for her and I pray that nothing bad happens to her out there, because you never know what could happen”, says Justin.

When Carmen is working her biggest priority is being safe. She never shares needles, not even with Justin and she never takes a client who refuses to use a condom. All of this however, Carmen had to learn on her own. She had to learn for herself that she did not have to have unprotected sex with anyone. It was her own knowledge of HIV that led to her making the firm decision to not share needles with other users. In Carmen’s case it was not even that services failed her, they simply don’t exist.

This article is part of a Spotlight special series on people who form part of so-called key populations.

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

 

 

The numbers: HIV and TB in South Africa

What are the key numbers regarding the HIV and TB epidemics in South Africa? On this page we keep track of all the latest estimates from a variety of sources. This page is updated from time to time as new information becomes available. It was last updated in October 2018 with new estimates from the Thembisa model, the WHO and UNAIDS.

 1. How many people in South Africa are living with HIV?

According to outputs from the Thembisa model (version 4.1 released in 2018) there were around 7.35-million people living with HIV in South Africa in 2017. This number is likely to keep rising since the rate of new HIV infections is higher than the rate at which people with HIV are dying.

The Thembisa estimate is close to the UNAIDS estimate of 7.2-million people living with HIV in South Africa in 2017.

In his budget vote speech in May 2018 Minister of Health Dr Aaron Motsoaledi said that there are 7.1-million people who are living with HIV in South Africa.

According to the South African National HIV Prevalence, Incidence, Behaviour and Communication Survey 2017 around 7.9-million people were living with HIV in South Africa in 2017 – substantially higher than other estimates.

2.  New infections: How many people are newly infected with HIV in South Africa per year?

According to the Thembisa model there were around 275 000 new HIV infections in South Africa in 2017. The model estimates that this number peaked in 1999 at around 550 000. The model anticipates that this number will continue to fall in the coming years.

The South African National HIV Prevalence, Incidence, Behaviour and Communication Survey 2017 estimated that there was around 231 000 new HIV infections in South Africa in 2017.

The latest UNAIDS figures indicate that there were around 270 000 new HIV infections in South Africa in 2017.

All three estimates above translate to over 600 new HIV infections per day in South Africa.

3.  HIV mortality: How many people die of AIDS-related causes in South Africa per year?

According to the Thembisa model around 89 000 people in South Africa died of AIDS-related causes in 2017. This is down from a peak of around 270 000 in 2005.

The Thembisa estimate is lower than the UNAIDS estimate of around 110 000 AIDS-related deaths in South Africa in 2016. It should however be noted that these estimates have relatively wide confidence intervals and should thus only be considered to be rough estimates.

In March 2018 Statistics SA reported that HIV was indicated as the cause of death on the death notifications of 21 830 people in 2016. This number is an underestimate since death notifications do not allow for multiple causes of death to be indicated – in many cases where TB or pneumonia is written on death notifications HIV would be the underlying cause. In addition, in the Stats SA report over 57 000 deaths are categorised as “Ill-defined and unknown causes of mortality”. It seems likely that at least some of these 57 000 deaths would be because of HIV. The Statistics SA mortality and causes of death report is useful, but studies and models that use its information in combination with other sources of information are likely to produce more reliable estimates of the actual numbers of people who die of HIV and TB.

While the District Health Barometer (2015-2016) focuses on years of life lost rather than deaths per year in its burden of disease chapter, it is clear on the role of HIV in deaths, stating: “In 2000, 2005, 2010 and 2015, the three leading single causes of YLLs (years of life lost) in South Africa were HIV-related conditions, TB and  pneumonia,  with  diarrhoea  ranking  fourth  in  2000  and  sixth  in  2015,  suggesting  that  HIV-related  mortality  remains  the   leading cause of YLLs in the majority of districts in South Africa.” They also address the death reports issue, stating: “It is important to note that a large proportion of HIV deaths has been misattributed to immediate causes of death such as TB,  diarrhoeal diseases and lower respiratory infections.”

4. How many people are receiving antiretroviral therapy in South Africa?

According to the Thembisa model around 4.1-million people were receiving antiretroviral therapy in South Africa in 2017. UNAIDS estimates around 4.35-million in 2017. The South African National HIV Prevalence, Incidence, Behaviour and Communication Survey 2017 estimated that 4.4-million people were receiving HIV treatment in 2017. In Minister Motsoaledi’s 2018 budget vote speech he said that “over 4.2-million” people in South Africa are on treatment.

Whichever source you believe, there are in the region of 3-million people living with HIV in South Africa who are not receiving treatment. According to treatment guidelines all people living with HIV are eligible for treatment. Evidence from the START trial has definitively shown that it is better to start taking HIV treatment earlier rather than waiting for the immune system to weaken.

5. New TB cases: How many people contract or develop active TB in South Africa per year?

According to the 2018 WHO Global TB Report around 322 000 people fell ill with TB in South Africa in 2017. As we have explained elsewhere, in 2018 the WHO made major changes to the methodology used to estimate TB statistics in South Africa which lead to much lower estimates for a number of TB indicators. Put another way, the WHO now believes its previous estimates for South Africa to have been substantial overestimates.

A new National Tuberculosis Prevalence Survey is expected to report its first findings in 2019. The study is being conducted by the South African Medical Research Council (SAMRC), the Human Sciences Research Council (HSRC) and the National Institute for Communicable Diseases (NICD).

According to the District Health Barometer 2016-2017 only an estimated 72.8% of people in South Africa in 2016 with diagnosed TB were started on TB treatment.

6. New MDR-TB cases: How many people contract or develop MDR-TB in South Africa per year?

According to the 2018 WHO Global TB report, South Africa had around 14 000 cases of MDR- or rifampicin-resistant (RR) TB in 2017. As with other TB indicators, this number is also much lower than expected based on previous WHO estimates.

7. TB mortality: How many people die of TB in South Africa per year?

According to the 2018 WHO Global TB Report roughly 78 000 people died of TB in South Africa in 2017 – of these 56 000 were HIV positive and 22 000 were not. It should be stressed though that there is a lot of uncertainty around these numbers (as indicated by very wide confidence intervals in the WHO report).

In March 2018 Statistics SA reported that TB was indicated as the cause of death on the death notifications of 29 513 people in 2016. As explained in the HIV mortality section above, the death notification numbers reported by Statistics SA is likely an underestimate.

What are the best sources of HIV and TB numbers?

There are a number of regular reports and models that provide information on the HIV and TB epidemics in South Africa. Below we provide a list of sources together with an indication of the kind of information they provide.

  1. The Thembisa Model: The Thembisa model is a sophisticated and comprehensive mathematical model of HIV in South Africa developed by experts at the University of Cape Town. It combines and expands upon a number of earlier models, most notably the Actuarial Society of South Africa (ASSA) AIDS and Demographic model. The model is calibrated using a variety of real-world data sources and in our view provides the most reliable set of estimates relating to the HIV epidemic in South Africa. Detailed model outputs can be downloaded from the website in Excel format. Version 4.1 of the model was released in August 2018.
  2. UNAIDS: UNAIDS publishes a series of regular reports and makes estimates available on their website. They use a different model from that used by Thembisa and often come up with different estimates. Numbers in UNAIDS reports sometimes differ from numbers published on UNAIDS’s country profiles – we use the latter.
  3. HSRC household survey: Every few years the Human Sciences Research Council publishes its “National HIV Prevalence, Incidence and Behaviour Survey”. This report is based on HIV tests and interviews conducted by researchers visiting households across the country.
  4. Antenatal survey: The National Antenatal HIV Prevalence Survey is published annually by the Department of Health. It is a survey of the HIV status of pregnant women attending public health antenatal clinics. Pregnant women are one of the groups of people most likely to visit public sector clinics and as a result this survey provides one of the most complete snapshots we have of HIV prevalence.
  5. WHO Global Tuberculosis Report: Every year the WHO publishes the Global TB Report. The report contains estimates on a number of key TB indicators for South Africa and a range of other countries. Sometimes more up-to-date data is also published on the WHO’s TB site.
  6. Stats SA: Statistics South Africa annually produces its “Mortality and Causes of Death” report. As mentioned above, this report reflects only what is written on death certificates – which, while very useful, should not be interpreted as the last word on causes of death in South Africa.
  7. MRC: The South African Medical Research Council from time to time produces reports on various aspects of HIV and TB in South Africa.
  8. Government: While the South African Department of Health does not often share detailed information with the general public, important statistics are from time to time provided in speeches, press statements and answers to questions posed in parliament. The health budget vote speeches of the Minister and Deputy Minister and the State of the Nation address delivered by the President of the country usually contain some top-line numbers.
  9. SA Health Review: The SA Health Review: This annual publication of the Health Systems Trust does not track a set of indicators from year to year. It is nevertheless worth consulting since the chapters in this publication often contain rich information.
  10. OHSC: The Office for Health Standards Compliance produces reports for parliament on the state of healthcare facilities. While these reports do not specifically deal with HIV and TB, they provide useful information on the healthcare system that is supposed to form the front-line against these co-epidemics.

Provincial and district numbers

Getting reliable statistics about healthcare in provinces and districts is difficult, but there are a few places one can look.

  1. The District Health Barometer published by the Health Systems Trust is the best public source of information about the public healthcare system at district level. The 2016-2017 edition (published in January 2018 is available here.)
  2. The Thembisa Model outputs (mentioned earlier) contains provincial estimates for a wide variety of HIV-related indicators.
  3. There is provincial and district level data held by the Department of Health that is generally not released to the public.

Please let us know in the comments below if you think we’ve missed a key source or if there is a key statistic you think we should add to this page.