AIDS2018: Humans in the Age of HIV-There’s no one influencing me anymore

By Nomatter Ndebele

Gloria. Pic by Joyrene Kramer

Gloria lives in Vrededorp, Johannesburg with her partner and her 2-year-old son. She has been on drugs since 2013. Gloria started with Marajuana and then graduated onto harder drugs. She currently smokes Crystal Meth, which Is available in her neighborhood for R50 a hit (less than U$4).

“I used to smoke rocks (Crack cocaine), but it’s very expensive, so I settled for crystal meth, from one bag, I get twenty pulls,” she explains.

Like most people who inject drugs (PWID) Gloria is unemployed and depends on doing odd jobs around the community so she can make some money to feed her habit. “I do people’s laundry or even clean people’s houses to make some money.”

Gloria’s son is perfectly healthy. When Gloria discovered that she was pregnant she decided to quit smoking as she knew it wouldn’t be healthy for the child. When her son was born, Gloria went back to smoking Crystal Meth.

She refuses to smoke in front of her son, when she needs to take a hit, she ensures that her son is outside or otherwise preoccupied. “It’s just not right for my son to see this, and I don’t ever want him to see,” she says. Before she takes a hit in front of us, she asks someone to take her son out of the room.

While Crystal Meth is her drug of choice, she has changed the manner in which she takes it, before she would inject it, but now she has resigned herself to just smoking it.

“When I was spiking, I realized that I was becoming much slower, like my brain was slow, I was slow to respond to things and I didn’t like that.” So far, that is the only bad experience she has had with drugs.

When asked what message she would like to share with the youth, Gloria does not skip a beat. She immediately says “I want to tell the youth not to do drugs, its bad, you cause yourself and your family problems and you’ll end up on the streets.”

When her son was born, Gloria broke away from her group of friends. She felt as though the group was pressuring her into doing more drugs. “I left them, I feel lonely sometimes, but its better like this, there’s no one influencing me anymore.”

Gloria has not thought about quitting at all, for now she is content to smoke her Crystal Meth and go about her life as she does.

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-It’s the living that can hurt you

By Nomatter Ndebele

Marthinus Barnard. Pic by Joyrene Kramer

There are an estimated 75000 people living in South Africa who inject drugs. According to local NGO, Jab Smart, 1653 of these users, are located within Sub-region F in Johannesburg. Sub-region F covers the Johannesburg CBD, Braamfontein, Rossetenville, Mayfair, Hillbrow and Yeoville. 42-yeard-old, Marthinus Barnard, is just one of them.

It is a bitterly cold morning in Vrededorp, Johannesburg. Marthinus walks ahead of us with a limp that came back a few days ago, after stealing a municipal bin for his friend. We move silently and steadily along, until he turns around with a cheeky smile, opens his arms and announces “welcome to my office”.

His office is one of Johannesburg’s oldest cemeteries, the Brixton Cemetery which is adjacent to Vrededorp. We weave in and out of tombstones, trying to find a spot to settle. Eventually we come to an area that has many horizontal tombstones. Here, the trees part just enough to allow the struggling  sunlight to illuminate a piece of a broken tombstone that reads “Moeder” (A formal Afrikaans reference to Mother).

“My mother told me, dead people can’t do anything, it’s the living that can hurt you,” says Marthinus.

He settles on an abandoned piece of a tombstone and turns his striking blue eyes to mine, ask me anything,” he invites.

“Thinus” has spent more than half his life on drugs. Pic by Joyrene Kramer

Marthinus, who goes by  “Thinus” has spent more than half his life on drugs. He has come a long way since he first smoked marijuana, with a group of school friends in an attempt to beat his depression.  In these twenty years, this once handsome blue eyed boy has lost all his front teeth, his skin is patchy, he is covered in grime as washing himself is no longer a priority. His wrists are decorated with thin lines acquired from self-harm, and his arms are covered in tattoo’s, some from boyhood and others from prison stints.

Thinus spends five to six hours in his “office” every day. In this space, he has had countless “hits” and a track record of 400 clients during the time he was a sex worker. Thinus no longer engages in sex work, he does odd jobs where he can to make enough money to support his habit. Fortunately or unfortunately, Thinus quips.

A bag of heroin costs anything between R18 and R40. (around $1.20 to $3)

A bag of heroin in Vrededorp typically contains about 3% heroine, and is mixed with rat poison, ant poison and antiretrovirals.  The crook of Thinus’ left arm is decorated with a red rash, that’s the “Rattex” (rat poison) he says matter-of-factly. The high from this heroin lasts three to four hours, before Thinus needs his next fix. He goes through six or seven bags every day.

Key populations?

The term key populations draws a blank from Thinus. Despite knowing all there is to know about the history of Vrededorp. It seems this is one term he doesn’t know about.

Although he no longer engages in sex work, Thinus is still an in injecting drug user, and is at high risk of contracting HIV. He admits having been ignorant about HIV in the early days. “I always used to tell people that there was no such thing, that if you just cleaned the needles nicely, you wouldn’t catch it, what a mistake that was,” he says while letting out a belly laugh.

A month ago Thinus learnt that he had tested positive for HIV. He knows for a fact that he contracted the virus through the sharing of needles. “There is only one guy I share needles with, and he is also HIV positive, I’m sure I got it from him.”

A local NGO and mobile clinic called Jab Smart, has started operating in Mayfair which is a few blocks away from Vrederdorp. Jab smart is currently the only organization that provides harm reduction packs (HRP) to People who inject drugs (PWID). The harm reduction packs consist of new needles, alcohol swabs and condoms. These packs are made available to people who inject drugs at least once a week. People simply have to remember when the mobile clinic is coming to the neighborhood, so they can access a HRP.

At the mobile clinic people are encouraged to take HIV tests. This is part of Jab mart’s comprehensive care package. Where they encounter users who are HIV positive, they refer them to a clinic or a doctor to try and get them on treatment as soon as possible. It was through this service that Thinus discovered that he was living with HIV.

Jab Smart is currently the only service assisting injecting drug users  in the area. The programme seeks to ensure that if users cannot quit the habit, they at least continue in a safe manner or that they try to lessen their intake of drugs. The same programme independently provides OST (Opiod substitution therapy) to eligible candidates. OST therapy provides people who inject drugs with monitored dosages of Methadone – which provides relief to the severe drug withdrawal symptoms which could otherwise drive people to again use drugs.

A mobile population

Despite the fact that this service is just a stone’s throw away from Vrededorp (about 7 kilometres), it is an impossible feat for the average drug user to access it.  “We can’t go there every day, it’s easier for us to make up the money to get a hit than to get together the money to travel to Yeoville,” says Thinus.

While Thinus’ problem is that he is  somewhat  immobile, most users face the problem of being too mobile.

Anthony Manion, project manager of Jab Smart, says that the fact that most drug users are mobile provides the programme with great challenges when it comes to monitoring  and supporting users. “Because people move all over the city, sometimes with all their belongings in tow, it is difficult to trace users.” Despite this challenge, Jab smart has managed to retain many of their first time users who receive HRPs.

In the month from May to June Jab smart saw a total of 1 653 new users. In the same month, they had 5 944 people who returned to use the service.  They managed to test 1 086 users for HIV, of which 504 tested positive, but only 112 of them were successfully referred to a clinic or a doctor.

Despite the fact that Thinus was referred to a clinic through this programme, he has not yet gone. “I still feel healthy, but also my life is already fucked up, what is there left to do,” he says.

Thinus has been through Rehabilitation twice and relapsed each time. Despite having had the opportunity to be in a private rehabilitation facility, Thinus was unable to stay away from the drugs. He blames this on the fact that despite getting clean, he came back to the very same environment that fostered his habit for so many years. “If there is nothing to occupy your mind or something for you to do, you’ll go back, there just isn’t enough support for us when we come out from rehab.”

He isn’t lying. The lack of resources and support for people who inject drugs in Vrededorp, is glaringly obvious. The flats are all dark, most have cracked windows and are decorated with crude graffiti. The streets are deserted and there is no life, other than on a few corners where groups of boys loiter around. The community has one soup kitchen, which also operates as a crèche, for smaller children. Other than that, you’d be hard pressed to find a library or a community resource center. Leaving is hardly an option for anyone in Vrededorp.

Apart from Jab Smart, there isn’t any other programme that offers such comprehensive care to users. Even at state hospitals, where people have been specifically trained to work with people who inject drugs, not enough is done to assist this vulnerable key population group. “Often nurses will turn away drug users asking them to return when they are clean”, says Mourbadin. “In most instances, people are turned away from facilities, either because of the way they look, or how they smell.”

The threat of being mistreated or turned away from healthcare facilities has thus become a major deterrent to people looking for care services. This has caused many people who might otherwise have accessed life-saving care, to fall by the wayside. There simply seems to be no way back for people like Thinus.

Six years ago Thinus and his friends were travelling from Krugersdorp to Johannesburg. One moment Thinus was chasing a glass of Vodka with a cocktail of crystal meth, Mandrax and marijuana, the next moment he opened his eyes and a doctor was standing over him in the Intensive Care Unit, telling him that he had flat lined for a minute and 20 seconds. Thinus was clinically dead. “ Doing drugs is never enough, the only way you can win is by dying,”says Thinus.

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

AIDS2018: Why the conference still matters at this point in the HIV Epidemic

There are many reasons why the end of the AIDS epidemic is not yet in sight and why the International AIDS Conference still matters, writes IAS President Linda-Gail Bekker.

The 22nd International AIDS conference is to be held in Amsterdam this year, as we move through the 37th year of the AIDS epidemic. The first AIDS conference was held in 1985 in Atlanta, United States at a time when the world was still grappling with what this virus is, what its impact might be, and how to even begin helping those affected. The immense strength of the HIV response has meant that in quite a short period of time the HIV/AIDS community has moved leaps and bounds to achieve both treatment and prevention. Some are even suggesting that we are near to the end – however, there are many reasons why the end is not yet in sight and why this conference still matters.

  • The AIDS conference remains an anomaly in the health world, being both the first and one of the only health conferences to cater to the full range of people involved and affected: basic scientists, doctors, programme implementers, social scientists, lawyers, policy makers, activists and the patients themselves. All coming together in one place to hear each other and share their ideas.

This is a manifestation of what the AIDS epidemic has driven home to the world: nothing can be done or achieved without involving everyone, including those who are often isolated, stigmatised, or voiceless. In a slogan this is “nothing about us without us”, but in practise this is what the AIDS conference enables. It works to connect people and form networks across tracks, population groups, and country borders. At every point in the HIV epidemic this has mattered, but potentially now as we face an ever more hostile and nationalist world, this is critical.

  • HIV/AIDS is not over – nor are we fast approaching an end. In terms of new infections, while some generalised epidemics have seen success, infections in key populations such as people who inject drugs and sex workers in Eastern Europe and Central Asia are increasing and in South Africa alone 2000 young women are infected every week. A primary prevention revolution is desperately needed. In terms of mortality, we have also had huge success; however, we now have an aging population of people living with HIV who will need to combat a range of co-morbidities. There is much work still needed to prepare for this.

Ultimately, until we have a vaccine or a cure, until we can reach all marginalised populations affected, until we prevent all new infections and know how to best support those living with HIV, we need to keep this conversation going.

  • We are reaching a new era in the HIV response where considerations need to be made on how to integrate HIV care and prevention programmes with other disease programmes and within a universal healthcare model.

HIV/AIDS has benefited as a favoured child of global health that receives a high level of funding, focus and pooling of global resources. How do we now continue to sustain these gains while also integrating HIV/AIDS with other global health issues? The IAS-Lancet commission (to be released just before the AIDS conference) will aim to tackle these questions and lay out some recommendations. The AIDS conference provides an ideal opportunity to launch this and other new conversations and allow everyone to hit the ground running.

  • The baton needs to be handed to the younger generation.

The AIDS epidemic broke in 1981. Many of the researchers, activists and movers leading the response were there to witness it and thus strategically placed to lead the response. However, as time as passed the baton needs to be handed to the younger generation. We need them to lead, we need their passion and new ideas, and we need them to make it relevant and accessible for generations to come. The AIDS conference with its youth focus, scholarship programmes and inclusive agenda provides the platform to achieve this. The conference coordinating committee includes a youth representative, the global village hosts many youth-lead organisations, and at AIDS 2018 an entire plenary session is to be dedicated to the youth.

The AIDS conference still matters as long as it provides an opportunity for everyone involved and affected by this epidemic to congregate, feel included, get involved and be inspired to move the HIV response forward – because we are not there yet!

  • Professor Linda-Gail Bekker is President of the International AIDS Society and Deputy Director of the Desmond Tutu HIV Centre at the University of Cape Town.

 

DREAMS and She Conquers

Amy Green, Health-e News

An estimated 2 000 new HIV infections occur in young women and girls every week in South Africa. Two high-profile programmes are aiming to address this crisis. In this joint Spotlight/Health-e News Service special investigation, we go beyond the bells and whistles and ask what difference these programmes are really making.

Roughly 40km outside Durban lies the small town of Molweni. This is where a young woman, Nontokozo Zakwe – now 26 – grew up.

“One of the things I noticed growing up was that gender-based violence (GBV) was the norm,” she says. “And the mentality was: if it happens to you, get over it. If it didn’t kill you, you’re going to be okay.”

The first time ‘it’ happened to Zakwe, she was just 11 years old.

“We had two options on our walk back home from school: the road, or the short cut past the river,” she says. Most days she took the road; but one day, after staying late after school, she decided to use the short cut, because it was getting dark.

“Then this man, he raped me.”

Zakwe survived the attack and made her way home, where she lived with a number of cousins and siblings. Her mother worked in another province, she didn’t know her father at that point, and her grandmother could only afford to come home one weekend a month from her job as a domestic worker on the other side of the country.

“But being from the kind of community I was from, when I got home I decided to sleep. I cried myself to sleep,” she remembers.

A visiting aunt woke Zakwe up that evening, pulled back the covers, noticed blood, and asked the young girl what had happened.

“When I told her, she told me everything was going to be okay. I could tell in her eyes she was sorry for me and wished it hadn’t happened, but that she felt there was nothing she could do except tell me I was going to be okay,” Zakwe says.

“We were forced not to talk about things. Talking that could help us heal. One can imagine, these experiences – experienced by many young girls, around the country – can leave you vulnerable to HIV, teen pregnancy and other problems.”

At the age of 11, not even a teenager yet, Zakwe was expected to overcome the trauma of that violent experience, stay in school, and avoid early pregnancy, without any support – psycho-social, financial or otherwise – jn becoming a successful HIV-negative adult.

2 000 infections a week

It is against this backdrop of the lived experiences of many young women in South Africa that a staggering 2 000 new HIV infections occur in young women and girls every week. Over 70 per cent of new HIV infections in people aged 12 to 24 in sub-Saharan Africa occur in young women and girls, who overwhelmingly bear the burden of the epidemic, according to research done by Professor Ayesha Kharsany from the Centre for the AIDS Programme of Research in South Africa.

In South Africa, one third of young women and girls experience abuse, 60 per cent of young people do not have a matric qualification, and about 70 000 babies annually are born to girls under the age of 18, according to the South African National Department of Health (DoH).

It is being increasingly acknowledged that the contexts in which young women and girls live, which are often patriarchal and violent in nature, need to be addressed in order to make any meaningful impact on reducing new infections, and ultimately ending AIDS as a public health threat to the world.

Treatment and prevention campaigns alone, located in the health department, cannot by themselves address all the systemic drivers that make young women and girls more vulnerable to HIV than their male counterparts: poverty and gender inequality, as well as biological factors. These affect every facet of a girl’s life: her ability to stay in school, choose when to have children, her economic opportunities and the gendered and sexual violence experienced by women that is endemic in South Africa.

It is in this context that a number of initiatives, backed by billions in international aid, have been launched in South Africa. On the face of it, they aim to address the contexts in which young women and girls live in order to help them reach their full potential, including changing long-held perceptions in communities that leave them unsafe from violence and HIV.

It was only two years ago, when Zakwe joined the DREAMS partnership as an ambassador, that she began to receive the psycho-social support she needed 15 years ago.

DREAMS is a global partnership aimed at improving the lives of young women and girls in 10 African countries – with the ultimate aim of reducing the rate of new HIV infections in this group.

Another prevention campaign for young women and girls looking to tackle the societal problems driving their vulnerability to HIV is She Conquers, led by the DoH, launched by then-Deputy President Cyril Ramaphosa, and most famous for the controversy over a number of billboards commissioned under its name in Gauteng.

A grave historical injustice

In his response to the State of the Nation (SONA) debate on Tuesday 20 February, Ramaphosa, the newly-elected president, said:

“Another grave historical injustice that we need to correct is the economic inequality between men and women.

“It is a task that requires both a deliberate bias in economic policy towards the advancement of women and a fundamental shift in almost every aspect of social life.

“One of the programmes where we have sought to integrate various approaches is the ‘She Conquers’ initiative, which aims to empower adolescent girls and young women to reduce HIV infections, tackle gender-based violence, keep girls in school and increase economic opportunities.

“It recognises how patriarchal attitudes, poverty, social pressures, unemployment and lack of adequate health and other services conspire to reduce the prospects of young women – and then involves these women in overcoming these challenges.

“This is one of the ways we are working to build a nation that is prepared to confront the many different ways in which women are subjugated, marginalised and overlooked – a nation that wages a daily struggle against patriarchy, discrimination and intolerance.”

While Ramaphosa’s words are comforting, as they acknowledge the difficult situations in which young women and girls live, as well as the patriarchal nature of our society, one is left to wonder why so little is known about this important initiative, and how it is working to tackle the multitude of obstacles mentioned.

What is DREAMS?

What are She Conquers and DREAMS exactly? What is happening on the ground to improve the lives of South African girls and young women? Are they reaching their intended audience and achieving their aims? And how can systems of power such as patriarchy, entrenched in society for centuries, be tackled by health-led programmes only in place for a few years?

DREAMS is a global partnership, announced in December 2014, between the United States President’s Emergency Plan for AIDS Relief (PEPFAR), the Bill & Melinda Gates Foundation, Girl Effect, Johnson & Johnson, Gilead Sciences and ViiV Healthcare, aimed at reducing new HIV infections in girls and adolescent women by 40 per cent by 2017. But the South African arm of the project started late, and the target has been shifted to 2019.

PEPFAR’s Caroline Schneider told Spotlight/Health-e that to achieve this, the “ultimate goal is to help girls develop into Determined, Resilient, Empowered, AIDS-free, Mentored and Safe women” – the tenets the DREAMS name stands for.

Backed by U$385 million [about R4.5 billion], the “ambitious” initiative aims to go “beyond the health sector” to address the social factors that drive young women and girls’ particular vulnerability to HIV, including GBV, poverty, school drop-out, and gender inequality in the form of “economic disadvantage” and “discriminatory cultural norms”.

It was launched in 10 sub-Saharan African countries, with South Africa being allocated U$66 million [about R770 million], when it began operating locally in 2016.

“DREAMS uses multiple evidence-based interventions, including post-violence care, parenting/caregiver programmes, and facilitating access to already available cash transfers and education subsidies,” explained Schneider.

It operates in five districts: eThekwini, uMgungundlovu and uMkhanyakude in KwaZulu-Natal, and Johannesburg and Ekurhuleni in Gauteng, and is facilitated through 20 implementing partners.

What is She Conquers?

Also launched in 2016, She Conquers is a government campaign “aimed to reach adolescent girls and young women aged 15-24 in South Africa who have high rates of HIV as well as teen pregnancies”. Like DREAMS, it aims to do this by looking at the problems in society that make this group particularly vulnerable.

This is according to the DoH’s Dr Yogan Pillay, who said that more than R3 billion has been invested in the programme by three major donors: PEPFAR, the Global Fund to Fight AIDS, Tuberculosis and Malaria, and the German Development Bank (KFW).

He added that the campaign is being rolled out in three phases, with the first phase being implemented in the 22 districts with the highest HIV burden, “where the need is the greatest”. Based on what is learned in these areas, the interventions will be rolled out nationally.

The five targets to be achieved in the 22 priority districts for the three-year-long campaign are ambitious:

  1. Decrease new HIV infections in this group by at least 30 per cent, from 90 000 per year to fewer than 60 000 per year;
  2. Decrease teen pregnancies, in particular under-18 deliveries, by at least 30 per cent, from 73 000 to 50 000;
  3. Increase retention of this group in schools by 20 per cent;
  4. Decrease sexual violence and GBV in this group by 10 per cent;
  5. Increase economic opportunities for young people, particularly young women, by increasing youth employment by 10 per cent.

It is unclear whether progress against these targets will be measured and reported in a way that allows the public and independent experts to hold these programmes accountable in a meaningful way.

There is also much confusion in the public domain as to what the campaign is, whether it is a communication and awareness initiative, or if it involves practical interventions; and if it is adequately responding to the needs of girls and young women: the people it aims to benefit.

The confusion extends to how these initiatives are linked.

Health minister Dr Aaron Motsoaledi told Spotlight that “She Conquers became the South African expression of how to implement DREAMS”.

Schneider said the $66 million South African DREAMS funding allocation falls under the She Conquers umbrella, but that the money is not directly funding the local campaign.

“DREAMS is contributing to achieving the objectives of She Conquers. The US PEPFAR programs in the DREAMS focus districts are in line with the She Conquers strategy, and support She Conquers initiatives in those districts. We can’t speak to the overall She Conquers budget, as this is a Government of South Africa initiative,” she said.

Pillay said She Conquers is a “combination of awareness and practical projects”. But many activists have questioned, firstly, if the campaign is adequately raising awareness in a nuanced way that speaks to the myriad societal ills preventing girls and women from staying safe; and secondly, whether the other interventions are reaching those affected.

Billboard controversy

She Conquers has been most visible in its communication campaign – particularly in the controversy surrounding two of the billboards it commissioned.

Social media erupted in September last year when a billboard next to the N1 in Johannesburg was erected with the tagline: ‘Who says girls don’t want to be on top?’ In smaller letters underneath it reads: “Complete your matric, study hard and graduate!”

While the DoH rejected claims that the message contained sexual innuendo and therefore failed to address the context of violence and lack of support in which girls are expected to ‘study hard and graduate’, many on social media felt the message to be insulting.

Sexual and Reproductive Justice Coalition founder Marion Stevens said that instead of trying to address the circumstances in which young women remain vulnerable, this kind of messaging only perpetuates the status quo: expecting girls themselves to rise above their trying circumstances, be resilient, and somehow succeed.

“With the black girl emoji attached to it and the sexual innuendo, it reinforces the harmful tropes of black women as hyper-sexualised, and places the burden on young black women to overcome obstacles that are out of their control. How can a young woman stay in school when she has to choose to buy food for herself and others in the household instead of paying school fees? Girls drop out because of a range of factors, such as food, security and transport,” she said.

In this type of messaging, Stevens said, there is no mention of the challenges affecting their ability to stay in school or protect themselves from HIV.

Nicknaming the campaign #HeDecides, Stevens questioned who is actually responsible for constructing the She Conquers messaging, because the voices of young women themselves have been left out.

Long-standing HIV activist Yvette Raphael was involved in the initial conceptualisation of the She Conquers campaign, and said that the initial “consultations went well”.

“It looked like it was going to be an overarching campaign that would support very successful campaigns on the ground already working with women. But that is not the reality now. I don’t even know what to make of it – it’s very confusing,” she said.

Young women left out?

While the campaign was initially conceived as being youth-led, Raphael said that young women have been left out of campaign decisions on more than one occasion.

“I don’t think enough engaging of the target audience is happening and that’s why we are getting messages that are insulting to young women. Girls want to be on top – which young person would say that, outside of a relationship? Which young person can own that tagline?”

Raphael said that young women were asked to vote on a campaign name, but that name was never used; instead, ‘She Conquers’ was chosen, without an explanation as to why the name chosen by the young women was ignored.

Motsoaledi said a young woman from Limpopo was responsible for the She Conquers name, and suggested it to the DoH through social media.

Raphael said the problem is that “old people are thinking they can think like young women”. “She Conquers can only serve its purpose if it’s led by young people, and comes from them.”

She Conquers has set up a youth advisory committee located within the South African National AIDS Council (SANAC), consisting of nine young woman representatives who were elected at a She Conquers bootcamp.

But members of this committee told Spotlight that they do not have much decision-making power.

The executive secretary for the committee, 23-year-old Koketso Rathumbu, said the committee was not involved in formulating the messaging for the communications campaign, including the controversial billboards.

“The DoH is the one who facilitates and decides on the communication plan; and unfortunately, this was not shared with us, and there no clear reasons as to why – we have made a request,” she said.

While Rathumbu had positive things to say about the campaign – for example, that it is getting people talking about these issues, and is reaching some young women with beneficial interventions – she said that it is failing in other areas.

“We are advocating for the visibility of the campaign, over and above the media campaigns and billboards. We are fighting for more engagement and inclusivity at grassroots level, but it has been a challenge; many people in rural areas, for example, are not being reached.”

She also said that if every stakeholder, including various government departments, were “synchronised”, then “She Conquers would be a success”.

“The biggest challenge we’ve had is getting different departments to play a role, not just Health – for example, the Department of Basic Education to go into schools with the She Conquers plan. What we need and don’t have is a synchronised system that integrates all stakeholders.”

This could be why She Conquers is so confusing to the public, and even to the people involved in it. Conceived of and led by the DoH, so far it has failed to adequately integrate all sectors.

Who is in charge?

The Medical Research Council’s Dr Fareed Abdullah (a former SANAC CEO) said that SANAC – as a body designed to facilitate multi-sectoral collaboration between various government departments, civil society and other stakeholders – should be responsible for the running of the She Conquers campaign. It should also be the seat responsible for the coordination of various partners working on HIV prevention in young women under the She Conquers banner, including the DREAMS partnership and others.

Pillay admitted that She Conquers is “supposed to be a programme that links various initiatives under one banner”, but that “coordination is not an easy thing to do”. While Ramaphosa was deputy president, he asked that SANAC take on this role – indirectly acknowledging that the DoH cannot fulfil the mandate on its own.

But the confusion around the programme continues. While Pillay said that handing over the running of She Conquers to SANAC had been done as early as last year, SANAC spokesperson Kanya Ndaki told Spotlight a different story.

“SANAC is not responsible for the overall running of the She Conquers campaign, but this is something we are working towards. We are hosting a summit on young women and girls in March, and will be bringing all the partners involved to reflect on what has worked, so that we can coordinate the response better,” she said.

Ndaki said that the She Conquers campaign has been led by the DoH, but “we want to change that. We want it to be a multi-sectoral response, and SANAC is best placed to provide that multi-sectoral coordination.”

She added that while locating the running of She Conquers has been discussed on various platforms, it has not been finalised; but it is expected to be at the March summit.

Moreover, according to Schneider, DREAMS and its funding “was intended to spark investment globally in adolescent girls and young women programming, with biomedical, structural, and behavioural interventions, using multi-sectoral approaches”.

But when asked if there has been any domestic investment in She Conquers on top of the international aid, Pillay said no – “just the money we have. We have already made it clear from the beginning, from government, the funding will be a reprioritisation of existing funding,” he said.

But Abdullah made the point that the programme – should any impact it makes be sustained – “cannot only be funded by donors, and the South African Government also needs to make significant investments in this programme”.

Will young women have access to PrEP?

Abdullah also said that “one of the key weaknesses of the programme is the very limited offering of pre-exposure prophylaxis (PrEP)”. PrEP consists of a daily dose of antiretroviral medication to prevent HIV infection, and has been shown to be highly effective if taken as indicated.

The World Health Organisation recommends PrEP for young women in areas where the rate of new HIV infections is high; but according to Abdullah, even though this is “one of the most effective interventions” in existence for HIV prevention, “South Africa has limited PrEP to a few pilot sites”.

This is despite the fact that the latest National Strategic Plan (NSP) for HIV, tuberculosis and sexually transmitted infections makes provision for the implementation of PrEP for populations at a high risk of acquiring HIV.

Abdullah has been critical of the NSP, saying it limits PrEP access. The Plan’s targets are that between 2018 and 2022, there should be just over 104 000 new PrEP users. PrEP will be offered to young women, female sex workers, men who have sex with men, and people who inject drugs.

According to Pillay, through She Conquers, PrEP is slowly being rolled out: it was made available to young women at nine university campuses in October 2017. Only 26 people were initiated on PrEP during the first month; after that, the programme was stalled, because universities were closing for the end-of-year holidays. Those who had started PrEP were given a supply for the holidays.

Since February, two more university campus clinics have begun offering PrEP, bringing the total to 11; but the DoH does not have data on new uptake at these sites for 2018.

Pillay said: “During the next six months, PrEP will be made available at some 20 primary healthcare clinics in the 22 She Conquers priority sub-districts.”

The aim is to offer PrEP to between 5 000 and 8 000 young women over the next year.

There are multiple programmes running under the She Conquers banner that are doing important and effective work. But the success of any HIV-prevention campaign that seeks to solve systemic issues in society such as violence and gender inequality will rely on the successful integration of every actor on every level.

To truly help young women and girls in South Africa, programmes will need to put them and their views, voices and suggestions at the epicentre of decision-making. ‘She’ can only ‘conquer’ when ‘she’ is actively engaged and listened to.

In this context, it is important to remember Ramaphosa’s final words on the epidemic of GBV in South Africa during his SONA response:

“It is a social issue that must engage, involve and mobilise the whole of society.We must be prepared, as government, to acknowledge where we have failed our people. Where we have made mistakes, we will correct them.”

Health4Sale Part 1: North West blows HIV money on controversial private ambulance service

By Marcus Low and Anso Thom, Spotlight

The North West Department of Health blew over R100-million expressly earmarked for HIV health services on two controversial private ambulance companies, it has emerged from correspondence in Spotlight’s possession. Serious red flags are also raised by some of the invoices submitted by one of these companies.

A letter sent by KA Dibodu in May 2016 from the Head of the North West Department of Health’s office to District Chief Directors states that R36-million from the province’s Comprehensive HIV and AIDS Conditional Grant, were to be channelled to two private ambulance companies, Buthelezi EMS and High Care EMS. While the R36-million referred to in the letter relates to the 2016/2017 financial year, the National Department of Health told Spotlight that R93-million in HIV conditional grant funds was transferred to the North West in the 2017/2018 financial year for the line item in question “inter-facility transport”. This brings the total for the two years to a staggering R129-million.

By law the HIV conditional grant can only be spent on HIV-related expenses. Various experts Spotlight spoke to confirmed that inter-facility transfers fall outside the scope of the HIV conditional grant and the spending would thus be unlawful.

“The Division of Revenue Act and grant framework does not allow that a conditional grant should be used for a purpose that is not intended,” says Popo Maja, spokesperson for the National Department of Health. According to Maja the Department has requested that National Treasury investigate the matter. Maja also indicated that steps had been taken by the National Department of Health to ensure that the North West cannot use HIV conditional grant funds for inter-facility transfers in the current (2018/2019) financial year.

Almost half-a-million people (Around 482 000) in the North West are living with HIV (12.5% of the province’s population). The HIV conditional grant is meant to help the roughly 244 000 people in the province already on HIV treatment to stay healthy and on treatment and to get the 238 000 people who still need treatment onto treatment.

Invoices raise red flags

Spotlight has also seen a number of invoices submitted to the North West Department of Health by Buthelezi EMS. Most of these invoices are from Buthelezi EMS CC. But, the Companies and Intellectual Property Commission (CIPC) registration number on these invoices (2013/06/5417/07) is not that of Buthelezi EMS CC, but that of another company called Buthelezi EMS (PTY) LTD. There is a Buthelezi EMS CC registered on the CIPC database, but its registration number is completely different from that on the invoices.

Spotlight has also seen one invoice where the branding on the invoice is not Buthelezi EMS, but B EMS. There is a company called B EMS CC listed on the CIPC database, but its registration number also does not match that on any of the invoices In Spotlight’s possession. The bank account number on the B EMS invoice also differs by one digit from that on other invoices. Some ambulances in North West have been rebranded as B EMS.

The three Buthelezi companies mentioned above are only three of seven Spotlight found with names that are in some way variations of Buthelezi EMS. Mr Thapelo Samuel Buthelezi, the man behind all these companies, failed to answer a question from Spotlight on why he has registered so many companies with similar names.

One clue might be that Buthelezi EMS (PTY) LTD, the company’s whose registration number appears on the service level agreement with the North West Department of Health and the invoices, seems to have had some trouble filing its annual tax returns. According to CIPC records a process of deregistration was started in April 2017 because the company had not filed tax returns since April 2014. With only a few extraordinary exceptions, companies cannot lawfully be awarded tenders or be paid by government without tax clearance certificates. The service level agreement in question was signed in March 2016 when, according to CIPC records, the company could not have had a valid tax clearance certificate. CIPC records show that a week after deregistration was set in motion in April 2017 the company was suddenly taken out of deregistration and reinstated – we do not know whether this is because valid tax returns were finally filed or because of another reason – either way, it would not impact the lawfulness of the initial award of the tender.

CIPC records also reveal an interesting link between Buthelezi EMS and High Care EMS (PTY) LTD – the two companies who between them were awarded the entire North West inter-facility transfer tender with High Care getting Ganyesa District and Buthelezi the rest of the province. Mr Buthelezi, director of the various Buthelezi EMS companies, and Mogale Clifford Mahlo, director of High Care EMS, are listed as co-directors of companies called Vosloorus Ambulance Services CC and VAS Emergency Medical Services (both companies that have been deregistered because of annual return non-compliance).

Two investigations

In February 2018 City Press reported that North West Premier Supra Mahumapelo had authorised a forensic investigation into procurement at the provincial Department of Health.  In addition to the Gupta-linked Mediosa, Mahumapelo’s spokesperson stated that Buthelezi EMS will also form part of the investigation. City Press also reported on alleged overcharging by Buthelezi EMS, something which Mr Buthelezi denies. Additional questions that Spotlight sent to Mr Buthelezi were not answered.

Meanwhile, Buthelezi EMS continues to be paid by the North West Department of Health. Invoices seen by Spotlight show figures in excess of R20 million a month. (The second article in this Health4Sale series will reveal how Buthelezi EMS appears to be overcharging the North West Department of Health and how their service allegedly falls short.)

In addition to the forensic investigation initiated by Mahumapelo, Buthelezi EMS is also being investigated by the Hawks. Spokesperson for the Hawks in the North West Captain Tlangelani Rikhotso confirmed that they were investigating the contract between Buthelezi EMS and the North West health department, but said, “we cannot divulge any more information in relation to the case”.

The North West Department of Health declined to answer any of a long list of questions sent by Spotlight stating only that: “The management of the Department has looked into all the questions posed. The Department has also considered the fact that Buthelezi EMS and a number of other contracts are a subject of investigation by the Hawks as well as a forensic (sic) initiated by the Premier’s Office.  In the light of these developments, the Department feels that the investigations should carry on and a response will then be issued afterwards.” Spotlight allowed the Department additional time to reconsider this position but did not receive comment by the extended deadline.

More in this series:
NorthWest pays double for dubious private ambulance service

Health4Sale: Mpumalanga department of health broke rules for controversial ambulance company

Health4Sale: Motsoaledi asks treasury to investigate Buthelezi EMS

Health4Sale Part 4: Buthelezi EMS running a taxi service, not an ambulance service – Doctors and nurses

Note: While Spotlight is published by SECTION27 and the Treatment Action Campaign, its editors have full editorial independence – independence that the editors guard jealously. Spotlight is a member of the South African Press Council.

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.

Renewed hope for crypto, a deadly AIDS-defining fungal opportunistic infection

By A/Professor Nelesh Govender, National Institute for Communicable Diseases, Johannesburg

Cryptococcosis (“crypto”) is a common AIDS-defining fungal opportunistic infection worldwide. It has been neglected for many years. This is about to change; two exciting new developments in the fight against crypto will directly contribute to the UNAIDS goal of substantially reducing global AIDS deaths:

  1. A simple screening programme to detect and treat crypto earlier (“crypto screen-and-treat”) was implemented across South Africa in October 2016. Recommendations to screen-and-treat for crypto have now been included in the national HIV guidelines of at least 24 countries.
  2. Shorter, simpler and less toxic antifungal treatment regimens for crypto meningitis (the most severe and deadly form of the disease), which are suitable for resource-limited settings, were proven to be equivalent to the gold standard in the ACTA (Advancing Cryptococcal meningitis Care in Africa) trial, recently reported on at the 2017 International AIDS Society conference in Paris.

Nevertheless, the following barriers need to be overcome before we see a reduction in deaths:

  1. We need to focus on differentiated care for patients with advanced HIV disease who have been “left behind” in HIV programmes and are at high risk for opportunistic infections such as crypto
  2. We need the crypto screen-and-treat policy to be actively implemented in resource-limited countries with a high crypto burden
  3. We need improved access to affordable antifungal medicines, including quality-assured flucytosine. Flucytosine is an off-patent medicine which isn’t registered or available in any sub-Saharan African country

What is the scope of the problem?

Over a million people died from AIDS-related illnesses in 2015. Globally, crypto affects hundreds of thousands of the sickest patients with HIV each year and accounts for 15% to 20% of all AIDS deaths, second only to tuberculosis. Crypto is the commonest cause of meningitis in sub-Saharan Africa and South East Asia and disproportionately affects people in low and middle income countries. Without treatment, crypto meningitis is universally fatal. Even with treatment, between 20% and 60% of patients will die. Patients may be disabled by severe headaches which occur weeks before diagnosis or complications such as blindness and deafness which may occur after the severe brain infection. Crypto is a substantial economic burden on patients and their families.

The current gold standard treatment (amphotericin B and flucytosine for 2 weeks followed by fluconazole for many months) is intensive, costly and requires hospital admission for intravenous amphotericin B and laboratory monitoring for toxicities related to this medicine. In addition, flucytosine is neither registered nor available in any sub-Saharan African country.

Diagnostic/ screening tests for crypto, in particular the accurate, quick, simple and cheap antigen detection tests, are unfortunately not available in all countries with a high crypto burden.

We need differentiated care for patients with advanced HIV disease

The World Health Organization (WHO) has recently issued a guideline that strongly recommends that all patients with advanced HIV disease (CD4 <200 or WHO clinical stage 3/4) be offered a package of interventions including opportunistic infection screening, treatment or prophylaxis. It is essential that CD4 testing be offered before or at the time of ART initiation so that patients with advanced disease can be identified. For crypto, the focus is on screening and treatment of patients with CD4 <100 for early crypto. Governments and donor agencies should implement this recommendation.

We need the crypto screen-and-treat policy to be actively implemented by countries

Following South Africa’s lead in rolling out a national crypto screen-and-treat programme (approximately 250 000 people will be screened per year), other resource-limited countries with a high crypto burden should make similar efforts. This may depend on donor-funded access to crypto antigen tests and antifungal medicines. A challenge in many countries is that laboratory screening for early crypto may not be possible with limited laboratory infrastructure.

We need access to quality-assured and affordable antifungal medicines for crypto including flucytosine

The ACTA trial aimed to define antifungal regimens for crypto meningitis that could be more feasibly implemented than the accepted gold standard of 2 weeks of amphotericin B and flucytosine. The trial compared an oral combination of fluconazole and flucytosine for 2 weeks OR short-course (1 week) amphotericin B with either fluconazole or flucytosine to the gold standard. Both oral and 1-week regimens were equivalent to the gold standard based on deaths at 2 weeks. The best performing arm was 1 week of amphotericin B with flucytosine in terms of deaths at 10 weeks. Notably, all the best-performing arms in the trial contained flucytosine which was associated with better clearance of the fungus from patients’ cerebrospinal fluid.

Urgent efforts are required to ensure that affordable and quality-assured antifungal medicines, including flucytosine are made widely available for the treatment of crypto meningitis. Once flucytosine is available, the 1-week amphotericin B regimen with flucytosine should be used preferentially

Future research

The CAST-NET implementation science study will evaluate the effectiveness of South Africa’s national crypto screen-and-treat programme to reduce crypto deaths over the next 4 years. The planned AMBITION trial will explore the efficacy of single high-dose liposomal amphotericin B with oral flucytosine versus the gold standard for the initial treatment of crypto meningitis. Study results are expected in a few years’ time. Liposomal amphotericin B may allow shorter hospital admissions and fewer toxic side effects compared to conventional amphotericin B. Several other planned trials, including REFINE, have been designed to simplify the “treat” arm of the crypto screen-and-treat intervention by defining more efficacious and potentially shorter antifungal regimens for patients with early crypto.

 

 

Mental health and pill-taking: Getting beyond HIV

By Professor Francois Venter

Recently, I took part in a chat show on Radio 702 to discuss how to disclose one’s HIV status to one’s sex partners. Hosted by Eusebius McKaiser, the show was vibrant, entertaining and challenging – made more so by the other guest, Thula Mkhize. Thula is an HIV-positive, heterosexual man in a discordant relationship (his wife is HIV-negative). Thula speaks openly and passionately about his sex life, and we chatted about the ethics of disclosing on the first or second or third date, among other things.

Dating when HIV-positive can be very tricky. When do you disclose your status to a new sex partner? How do antiretrovirals impact on your sex life? Why do we sometimes take risks that don’t seem rational? Relationships are hard, but can be so much harder when you have a background condition that is sexually transmitted.

The show went well; but I found some of the callers talking about their experience of disclosure surprisingly moving and upsetting. People were calling in, talking about the enormous impact of HIV on their sex lives, and of partners slowly pushing them away due to their status. This was not the violent, ignorant stigma that we easily identify and loudly denounce, but a more subtle, much more personal rejection. It reminded me of a good friend who is HIV-positive, who when she is about to engage in sex with a guy, says he often behaves as if he were doing her a huge favour, despite her being completely non-infectious on treatment. These little and not-so-little indignities can be devastating, and can prick holes in your self-esteem. Getting reliable support after disclosure is far from guaranteed.

A few weeks ago we lost Prudence Mbele, a beloved long-time activist living openly with HIV, who died of TB. Prudence was famous for her ‘pill holidays’ – a big no-no in HIV-land, as it leads to further immune damage. The idea of someone stopping their life-saving tablets – even temporarily – boggles the minds of most health providers. Her death triggered an intense media and Facebook/Twitter reaction, filled both with criticism at her choices as well as empathy, as people shared their own hard stories about taking antiretrovirals. Yet this notion of ‘pill fatigue’ affects lots of people in the HIV field and beyond, and generates a lot of chatter on social media.

Pill fatigue is a difficult concept to swallow, as a health professional. The daily tablet we use for HIV is small and getting smaller, has very few side effects, and is becoming safer all the time. Public health guidelines in South Africa recommend that a huge proportion of our population need tablets for diabetes, hypertension and cholesterol, among other ailments, especially as people get older. Pills are a part of normal life for everyone as they get older – so why should HIV-positive people complain of pill fatigue?

Some of those reasons relate to anxiety and depression and stigma, now strongly linked to delayed presentation for treatment, as well as adherence to their meds. Sadly, mental health issues are more associated with medical hot air than with any content; very few resources are allocated specifically to this area in either the public or the private sector, despite tons of data suggesting they are important. We have some very spirited and smart mental health professionals trying to change this, but there is in inertia in the current health system. This is also coupled with harsh societal views around mental health – depressed people are told to pull themselves together, think positive thoughts, be grateful – which are less than helpful to people experiencing sometimes devastating physical symptoms as a result of mental ill health. The truth is that mental ill health is probably just as stigmatised as HIV.

What does all of this mean, for someone with HIV? There are no magic bullets; but this is the best advice I can offer:

Identify your mental health symptoms

It’s a good idea to pay attention to your mental health, as well as your physical health. The first step is noticing whether you are feeling different – do you have feelings of hopelessness, persistent sadness, a lack of energy to get through your normal routine, or disrupted sleep or eating patterns? If so, and if these persist for more than a couple of weeks, you may be becoming depressed.

Do you have persistent and repetitive thoughts, worrying about your life or other problems? Do you notice physical symptoms such as shortness of breath, churning stomach or nausea, dizziness or rapid heartbeat, fear of new situations or people? If so, and these persist for more than a couple of weeks, you may be experiencing anxiety.

Get support

The best thing you can do is ask for support. It is sometimes very hard to reach out, especially when you may be afraid of people’s reactions. My experience though is that families and friends can be remarkably compassionate; and studies have shown that people who are open about their HIV status tend to get more support, have fewer issues with adherence, and generally appear to be happier. In one study, people with HIV who had good social support mechanisms reported the same quality of life, once they were on successful antiretrovirals, as people without HIV. Disclosing your HIV status can be scary, but it can also keep you healthy. Similarly, if you notice your mental health is wobbling, disclosing this to your friends and family can help keep you healthy.

Of course, this does not hold true for everyone. The world can be brutal and violent, families may use stigmatising diseases to play out internal politics, and not every spouse is going to be supportive. Use common sense, and choose your support network carefully. Equally, this does not mean you need to rush out and disclose to everyone the moment you get your diagnosis – I’ve seen quite a lot of people treating this period as a kind of confessional. Learning you are HIV-positive can be a huge shock; give yourself time to think it through, and decide when and who you want to disclose to.

American sex therapist Dan Savage famously says that disclosure on a date (or in any other situation) tells the other person only a small thing about you; whereas their reaction tells you everything you need to know about them. While it can be a shock to hear from a friend or loved one that they have HIV, or depression, or any other scary condition, there is no excuse for casually offensive opinions or hurtful comments. You do not have to stand for it, and you can be clear in deciding whether to continue a relationship with an individual who is rejecting or judgemental about your physical or mental health.

You can often find support groups through local churches, NGOs and community organisations. These don’t work for everyone, but can be of huge benefit. You might find that sharing your experiences and finding out more about HIV will be empowering, and this will help keep you both physically and mentally well. Also, you could talk about your mood; and if you are feeling low or anxious, it can be enormously helpful just to tell someone about it.

So pay attention to your friendship circle, family and community; and invest time and energy in these relationships.

Speak to your health professional

It is likely that you will receive very little clinical help concerning your mental health. Many health professionals are woefully under-trained around mental health, and you might find yourself brushed off if you try to talk to your doctor, nurse or even counsellor about this. If you feel strong enough, you can ask questions and insist that your health worker answer them; or if they can’t, that they do their own research and come back to you.

You have a right to mental health care, even though the reality is that South Africa is very under-resourced in this field. Your raising it could be helpful in transforming your own health worker’s understanding, too, and could contribute towards changes in broader mental health policy for everyone, over time. Also, challenge people on social media and in public, when they post trite messaging on mental health issues (the most annoying I have seen is a meme saying that people with depression don’t need tablets – just a pair of running shoes and a forest). They will be more careful next time.

Take your medication

Taking tablets every day for ‘conditions’ when you’re healthy is fast becoming a fact of life for everyone, for everything from high blood pressure to diabetes. Getting onto antiretrovirals, developing habits around swallowing tablets and staying on treatment, and finding the easiest system possible for getting your tablets, will move this aspect to ‘habit’ rather than being a constant reminder of the virus. If you acknowledge to yourself that pill fatigue might actually be systems fatigue – weariness around a health system that remains largely inefficient and unfriendly, and wastes so much of your time – this might help you to address your own negative thought patterns about taking your meds, and help you to stick to the regime. If you can, try to find a clinic that has good systems and helpful, competent staff. This will help you stay mentally healthy too.

If you are persistently depressed, it might also be possible to obtain anti-depressant medications on prescription. Primary healthcare clinics have access to anti-depressant drugs, and these can be a valuable addition to other counselling support. If you have the means, shop around for a professional you relate to – one who is sympathetic to mental health issues.

There are many similarities between taking anti-depressants and taking antiretrovirals. You need to take your meds consistently, without interruption, in order to achieve the best results. You may experience some side effects; but these can often be mitigated by changing the dose slightly, or just waiting for your body to get used to them. Many people take anti-depressants for months or years in order to keep their mood stable and enhance their mental health. There is nothing to fear from these drugs.

Get activated

Use activism to get behind organisations advocating for better health services, for both HIV and mental health. In a recent study we did on truck drivers (most of whom were HIV-negative), rates of anxiety and depression were very high; we see similar prevalence among carers, low-income families living in poor housing, and inner-city dwellers. If you can, donate money to help them campaign, and to hire good staff. Become a vocal supporter of better mental health initiatives, wherever they exist. Challenge your health provider to take mental health seriously, and be bold about opening conversations with your friends and family about mental health. The World Health Organisation estimates that one out of every four people suffers mental illness at some point in their lives, so you are not alone.

You might find useful mental health information and support through one of the smartphone apps or personalised telephonic support lines that are becoming increasingly available. These may involve a cost, but there have been enough studies to show that they can be valuable. Watch this space to learn more about which ones are reliably effective.

What should HIV-negative people and healthcare workers be doing? I guess trying to avoid the trite ‘support’ statements – from ‘Well, at least you’re alive’, to the hideous ‘We will all die one day’ – would be a start. I have been at dinners in white, middle-class suburbia where someone is loudly opining about morality and its connection with HIV, not knowing that the couple across from me are my patients. The same holds for mental health issues – think before saying some stupid, stigmatising thing. There needs to be much more community awareness about the importance of unconditional acceptance and support of people on any kind of chronic medication.

If you’re a health professional, the best thing you can do is to educate yourself around mental health – and learn, firstly, how to accurately diagnose someone with depression or anxiety; and secondly, how best to work out a treatment plan. Mental ill health is rarely healed only through drugs, but more usually involves a comprehensive strategy encompassing talking therapies, good lifestyle interventions, removing stress, treating other health conditions, and prescription medications. Compassion, empathy and the ability to ask the patient questions about their unique experience of living in their own body are crucial. The last thing you should be doing is adding to stigma by putting your foot in your mouth. It is not a moral failing to suffer mental ill health, just as it is not a moral failing to be HIV-positive, or have any sexually transmitted infection.

As South Africans, there are many things that grind us down: corrupt politics; lack of jobs; increasing living costs; high rates of violent crime; poverty and poor service delivery; alcohol abuse; and family and relationship break-ups. If you also take into account the reality that too many of us experienced trauma because of the brutalising effects of apartheid, it is no wonder that mental ill health is so prevalent in our society. Sadly, we have been slow to acknowledge this and implement adequate policies to help mitigate mental illness.

Just as with HIV, every single one of us knows another person who is experiencing mental ill health. However, this may be hidden – due to stigma, shame, lack of understanding, and lack of adequate treatment. As a country, we achieved a lot when we started taking HIV seriously: through activism, scientific research, transformed health delivery systems and a lot of hard work at all levels, we managed to turn the epidemic around and make HIV a manageable condition. We can do the same with mental health, if we are motivated to do so.

Professor Francois Venter is a medical doctor who has been involved in HIV patient care, as well as guideline development and studies on new HIV treatments, for many years. He had lots of support from work colleagues and friends in editing this article.

For more information and resources on mental health, go to:

* This article was first published in a special print edition of Spotlight published ahead of the Treatment Action Campaign’s 6th National Congress held in August 2017. A PDF of that print publication can be downloaded here.

Modernising ART

By Dr Michelle Moorhouse

South Africa, like many lower and middle-income countries, follows the World Health Organization (WHO) recommended public health approach, using standardised drug regimens to treat HIV. This along with task shifting from doctors to NIMART (Nurse initiation and management of antiretroviral therapy) trained nurses has enabled more than 3.9 million people living with HIV (PLWH) to access life-saving antiretroviral therapy (ART) since 2003. ART is undeniably one of the biggest successes of modern medicine, along with vaccines and antibiotics

While we have some pretty great treatments already, there is still room for

improvement. Current first-line ART is a big pill to swallow, it has some unpleasant side effects, resulting in poor adherence and virological failure, and resistance develops quite easily; it will not get any cheaper over time. From the more logistical aspect, the high dose of the drugs that make up first-line ART means they use more ingredients meaning they cost more, and is the reason the pill is so big, which in turn means the packaging is big, and takes up more space in the pharmacy. Clearly, we need treatments which are easier to take in terms of size and are cheaper. And if you compare first-line ART in lower middle income countries (LMIC), some of the drugs being used are no longer recommended in better resourced settings.

Current first line ART

So, let’s look a little more closely at our current first-line ART. According to our

ART is undeniably one of the biggest successes of modern medicine, along with vaccines and antibiotics

national guidelines, most people living with HIV (PLWH) will receive a combination of efavirenz (EFV), tenofovir (TDF) and emtricitabine (FTC) or lamivudine (3TC) as first-line ART. FTC/3TC, which are structurally almost identical, really contribute very little in the way of toxicity generally and are usually continued through subsequent lines of therapy so I am not going to say much more about them here, and going to confine my deliberations to EFV and TDF.

What is great about this combination is that millions of PLWH around the world have been treated with it for years so there is a wealth of experience with it – a bit like that comfortable T-shirt we like to sleep in, for us as prescribers, but perhaps not so much for PLWH. The regimen has proven virological efficacy, is generally well tolerated, is simple to take as it is dosed once daily and is co-formulated into a single tablet fixed-dose combination (FDC).

What are the problems with EFV? It comes with some unpleasant side effects (abnormal dreams, nightmares, hallucinations even and other neuropsychiatric type symptoms mainly; occasionally rash); has a very low resistance barrier; and requires a high dose. Its safety in pregnancy has been established despite a bumpy start in early development and it plays relatively well with most other drugs, including TB drugs (but not all, for example some contraceptives such as implantables). EFV is an example of one of the first-line drugs which has disappeared from first-line treatment in many wealthier countries.

Alternatives to EFV

So how do we improve on EFV? There are a number of alternatives to EFV to consider which are currently available in South Africa. Rilpivirine (RPV) is one option, from the same class of ARVs as EFV, and is dosed at 25 mg (compared to 600 mg of EFV which contributes significantly to the size of the FDC). RPV is much better tolerated than EFV and is incredibly cheap, which is always good news in a drug which could be potentially be used to treat millions of people. The downside is that it is not yet available in any FDCs in South Africa, can’t be used with rifampicin-based TB treatment or in anyone with a high viral load when starting treatment, and in the public sector we don’t do viral loads at treatment initiation, so it too has its warts. However, it is being studied in some interesting new combinations so let’s not completely set it aside just yet. Certainly as a switch option RPV is a very good choice in patients who don’t tolerate EFV, and there are studies which support this.

Dolutegravir (DTG) is another option already available in South Africa. Again, another low dose drug at 50 mg. In registrational first-line studies no one with virological failure developed any DTG resistance which means this drug is incredibly robust. DTG was also the first drug to ever beat EFV in a head-to-head study, where pretty much all others had previously tried and failed, and this was probably a lot to do with the fact that DTG is more tolerable than EFV. And as the saying goes, if it sounds too good to be true… In fact, there are emerging data suggesting there may be some side effects which include dizziness and anxiety. But this is coming mainly from European cohorts, which do not have the same genetic diversity of African populations. Currently a massive study called ADVANCE that compares DTG to EFV is underway in South Africa and includes screening for these types of symptoms. DTG is also available already co-formulated in SA with abacavir (ABC) and 3TC, but it is not practical to roll out this particular FDC programmatically as ABC is very expensive.

But as DTG requires only a 50 mg dose, if it were to be introduced into the public sector programme, produced by a generic manufacturer with South Africa’s buying power as the largest consumer of generic ART in the world, DTG would be an affordable option for first-line ART, and is currently an alternative option in the WHO guidelines. With regard to DTG and TB drugs there is an interaction, which can be overcome by adjusting the dosing of the DTG, but this might not be necessary – some studies are underway to look into this. One of the current challenges with DTG is at this stage we don’t know a lot about DTG in pregnant women. Botswana made the bold move of introducing DTG into their HIV treatment programme in June 2016, including for pregnant women and it is anticipated that they will present data on the first pregnancies at the IAS conference in Paris in July 2017 which will start to fill this gap. So, we have a very robust drug that is well tolerated and can be co-formulated into a small inexpensive pill – looks promising.

Then there are also other future third-drug options which are not available in South Africa (or indeed anywhere else) as yet. These include doravirine and bictegravir. Doravirine is from the same class of drugs as EFV and RPV. It is still in phase 3 of development (registrational studies) and whether or not it will ever hit our shores is unknown. Bictegravir, also in phase 3, is a drug which is very similar to DTG and is co-formulated with tenofovir alafenamide fumarate (TAF), which I will discuss a little more below, and FTC.

An alternative to TDF

So, moving on to TDF. The problems with TDF are in some ways similar to those with EFV. The high dose means a high active pharmaceutical ingredient requirement which drives the pill size and the cost. And it also has some toxicity associated with it. Currently, we do not have any alternatives available in South Africa  that are any better but there is one which should be available soon, namely TAF (tenofovir alafenamide fumarate). TAF, like the TDF in current first-line ART is a pro-drug of tenofovir. TAF is given at a much lower dose (approximately 10-fold lower) than TDF. TAF is associated with much less kidney and bone toxicity than TDF. The ADVANCE study will also compare TAF and TDF, as most studies of DTG used ABC as the backbone, and also would not have included many African participants. TAF has not been studied with TB drugs or in pregnant women as yet, but these studies are underway. Once we have a better understanding of this, on account of the better safety profile and the lower dose which will result in significant reductions in cost, TAF is set to be a favourable option to replace TDF.

And in fact, if DTG, FTC and TAF are co-formulated potentially we are looking at a future first-line regimen, to quote Prof Francois Venter, “smaller than an aspirin” which is incredibly potent, incredibly robust, incredibly well tolerated, all while being incredibly cheap – incredible isn’t it?

ART does not exist in a vacuum

All of this is very important, while we have such tough targets to chase – the famous 90-90-90. And to achieve that third 90 we need to modernise treatments so that PLWH can adhere to them. When there are so many other challenges to overcome within a healthcare system, optimising ART to be as simple, safe, efficacious and robust as possible facilitates safer task shifting to other cadres of staff which may help alleviate some of the human resource shortages faced within healthcare facilities.

But no matter how good the drugs are, ART does not exist in a vacuum, and ART alone will not achieve the three 90s. ART will not fix the healthcare system. ART will not address stigma. ART will not help us achieve that first 90 – 90% of PLWH knowing their status. ART will not find the missing in action to test them – the men, the key populations, the adolescents, girls and young women – and then link them to care to achieve the second 90. ART will not then retain them in care, and measure their viral load so we can see if we are reaching that third 90.

Massive investment in infrastructure and development of systems backed by political will is critical. Civil society must remain engaged and all of this must be backed by a National Strategic Plan (NSP) that is realistic, detailed, and embodies the principles of equity and access. There is a massive amount of work to be done to conquer HIV in South Africa, but optimised ART is certainly a great step in the right direction.

Dr Michelle Moorhouse – Wits Reproductive Health and HIV Institute and Southern African HIV Clinicians Society