Weight gain with new antiretrovirals: Its complicated

By Professor Francois Venter and Dr Simiso Sokhela

South Africa’s next big shift in our antiretroviral programme is to replace efavirenz with a newish drug called dolutegravir. The last big change was from stavudine (d4T) to tenofovir, and the South African programme has been using a combination of tenofovir, emtricitabine and efavirenz for patients starting antiretrovirals since 2010.

The currently used combination works well in most patients, seems to be safe in pregnancy (most people on treatment are women), and we can use it with tuberculosis (TB) treatment, which can be a problem with other antiretrovirals. Tens of millions of people have been using it now for over a decade across the world. However, all drugs have their warts, and efavirenz is no exception. The drug is easy to “break” – i.e. to develop resistance to it; even a slight let-up in taking treatment, often translating into one or two missed doses a week, may result in it not suppressing the virus to the zero-levels we need for it not to develop resistance. In addition, some patients don’t get over the weird dreams, loss of concentration and other mental side effects that affect many people in the first few days of therapy. Finally, it affects blood cholesterol and sugar, although we don’t know if this effect will translate into long-term problems.

Dolutegravir seems to be a next-to-impossible to break antiretroviral drug (we still are not seeing resistance in first-line patients, after four years of use, mostly in the northern hemisphere but increasingly in the rest of the world), safer in terms of the mental side effects, and does not seem to affect blood parameters as much. The Department of Health is pleased at the prospect of a safer, more robust and, amazingly, cheaper drug, and it is planned for introduction later in 2019 following the award of the new tender in February.

However, as we gain experience with dolutegravir, it is showing its own warts. Late last year, the first reports surfaced that people using it were gaining weight; at the big HIV science conference held in Seattle in March (CROI), an entire session was devoted to weight gain in patients using the class of drugs dolutegravir belongs to, namely integrase inhibitors. The data on aggregate suggest that certain patients, particularly black women and older patients are more affected, with an average weight gain of 2-4 kg more than other regimens after 2 years of treatment (including efavirenz), and as high as 6kg after 5 years. It is important to recognise that these studies were not designed to study weight gain, so the strength of the research is not as high as we would like, but the consistency across studies is disturbing.

For South Africa in particular, any widely used drug that results in excessive weight gain is worrying to public health experts, because we already have high rates of obesity, associated with changing diets. Obesity is also associated with troubling and serious illnesses such as hypertension, diabetes as well as raised risks of stroke, heart attacks, and even some cancers.

It is important to note that gaining weight is not necessarily a bad sign in HIV-positive people, especially as many have lost some weight before they start. As people go on to antiretrovirals, they often feel much better, with improved appetite. Also, most people gain weight, whatever their HIV status, as they get older. In many cultures, being larger is seen as a sign of health (patients may have a very different view of what is a ‘’good weight’’ compared to their health care worker), and self-image is an important part of quality of life. Finally, the data from some studies suggests that black Africans may have less side effects from obesity, and that if you treat the side effects (elevated blood pressure, raised cholesterol and sugar), that you will probably not suffer catastrophic health effects. But obviously, we would prefer people not to get complications, so understanding what is happening is important, in order to make sensible recommendations.

There is a lot we do not know, and we need research to produce information fast. We need to confirm that, indeed, black women are most vulnerable; as with many registration studies for new antiretrovirals, the initial studies on dolutegravir were done predominantly in white men in North America and Europe. The number of black people and women studied was relatively low, although ongoing studies are addressing this data gap. We also need to know the trajectory of the weight gain – does it go up fast and stop, or does the weight gain continue while you are on the drug? How much weight gain is considered problematic – in many studies the weight gain was around 3-4kg, which might be considered acceptable, but what about those gaining more than 10-15kg? Finally, we need to know whether the weight gain may be worse when dolutegravir is combined with other drugs (including a slightly safer and cheaper version of tenofovir, which we are hoping will come into use in a few years). Many of the studies in progress will release their results in 2019 and 2020, so we will hopefully have answers within the next 12-18 months.

Waiting, though, makes life complex for public programmes and for patients, who may be considering starting or switching to dolutegravir later this year. If you are happy on efavirenz, with no issues, why would you switch? It may be better to wait and see what the new studies show regarding safety, especially if you are a woman who may want children as there is also a safety concern for babies conceived while their mother is on dolutegravir; again, we hope to have data on this later in 2019). If you are starting treatment, do you take a chance and see what happens in the next few months? For the Department of Health, this is a huge dilemma: we have close to 5 million people on efavirenz currently, so they are discussing how much they encourage this switch, so we don’t run out of whatever antiretroviral we move to. Their guidelines are forthcoming in the next few weeks, and probably will help both patients and healthcare workers with this decision.

Practically, if you move on to dolutegravir (or stay on efavirenz), it is probably wise to do what we all should be doing, regardless of HIV status: keep an occasional eye on your weight, be active, stay away from processed and fast foods, avoid sugar and other simple carbohydrates, dump the cigarettes and too much alcohol, and watch the news later this year for better data.

 Note: Both Professor WD Francois Venter, FCP (SA) and Dr Simiso Sokhela, MBChB, have extensive experience treating HIV, and are involved in large studies which looks at the side effects of antiretrovirals, funded by USAID, Unitaid, the Bill and Melinda Gates Foundation and SA MRC, with drugs donated by ViiV and Gilead.

 

Doc explains healthcare for transgender people

Dr Anastacia Tomson outlines the barriers to adequate, safe and informed health care for transgender people.

Transgender populations are neglected by a number of areas in society but especially or very prominently the health care system. This is a population group that has very specific needs, not complicated needs, just specific needs, and those needs are underserved. That means it is exceedingly difficult for a trans person to access gender-affirming care.

  • In the first instance, there’s a lot of gatekeeping, a lot ignorance on the part of staff, there are a lot of social factors like being undermined or condescended to, or deadnamed or misgendered. Deadnaming occurs when someone, intentionally or not, refers to a person who’s transgender by the name they used before they transitioned or while they are transitioning.
  • The demand for medications trans men, trans women and non-binary folk use often, is often underestimated. As far as the hormones they need are concerned, these are used by cisgender people too, either cisgender women experiencing menopause or cisgender men who have erectile dysfunction or for androgen decline in aging men (male menopause, basically), but they tend not to use them in the kinds of doses and quantities transgender people require them.
  • The more transgender people we manage to identify and provide access to care for, the more rapidly the demand on pharmaceuticals grows, and that demand needs to be adequately acknowledged and addressed in order to ensure that the supply does not run out. The fact of the matter is that the amount of Depo-Testosterone we have had available until now is probably quite inadequate considering that a large proportion of the population is still not accessing the kind of care that it needs.
  • When it comes to trans women, the forms of estrogen that are available to them are very outdated and very unsafe. Premarin (which is the most used hormone, particularly in the public health sector) has a much higher risk of clot formation which is the most significant side effect associated with feminising hormone replacement therapy than any other medication available.
  • Gender-affirming care is seen by many as elective and cosmetic. This is the reason medical aids will not pay for it.
  • We don’t have national guidelines on how to manage the medical or surgical care — gender-affirming care — for transgender people. That means that care is only available in specialised facilities, commonly Grootte Schuur in the Western Cape and Chris Hani Baragwanath and Steve Biko in Gauteng, outside of which expertise is limited to a handful of practitioners who may or may not be working in public sector clinics — and it’s luck of the draw as to whether you are able to find them — and a few private practitioners.
  • It also means that everyone is doing something different. Government clinics are handing out Premarin because it’s what they have in their pharmacies. Some people get certain blood tests done at regular intervals, some people don’t. Some people are subjected to more rigorous scrutiny and gatekeeping, before getting access to their treatment, while others are treated on an informed consent model, which is much more in line with latest best international practice. But this doesn’t happen everywhere.
  • A transgender person entering the healthcare system does not know what kind of experience they’re going to have before they go in. Are they going to be deadnamed and misgendered? Are they going to be laughed at in front of all the clinic staff and all the other patients? Are they going to get to see a doctor, and if so, when?
  • When they do see a doctor is there going to be doubt cast on who they are? Will they have to prove themselves, meet some antiquated set of standards in order to get access to the care?
  • Once they get access to the care, is it going to be the latest and best care available, or is it going to be outdated medication that carries severe side effects, and is that medication even going to be available or is it going to be out of stock from the pharmaceutical company?
  • In the public sector there is a 25-year waiting list for gender-affirming surgery. Some centres are not doing procedures that are cutting edge, they’re using very old techniques that might have side effects like urinary incontinence or loss of sexual function or sensation, and are completely ignoring the need for allied healthcare, for speech therapists, or for psychology for instance.
  • Pychological assessment might form part of that initial evaluation, in that gatekeeping approach, but it’s not used to support people, it’s used to keep them from accessing the treatment. Psychology should be an adjunct to gender-affirming care, so that trans people have the psychological support they need, not only as a screening tool to stop them from having access to care. This happens in both private and public sector.
  • The requirements to get the gender marker on your ID document changed at Home Affairs is a complex process that can take up to 18 months, because they want you to have had medical or surgery gender reassignment. They don’t define what they mean by that, but Home Affairs uses this as an excuse to reject doctors’ letters out of hand. There have been instances where Home Affairs have said a letter from a psychiatrist doesn’t count because a psychiatrist is not considered to be a medical doctor, which is nonsense. Psychiatrists are medical specialists.
  • It is very difficult to gain access to the medical treatment that you need without an ID. When you go to the clinic, you have to present your ID, but your ID is outdated, and you need the medical treatment in order to update it.
  • For the most part, transgender people have had to be their own doctors, own researchers and their own research subjects. Many people in the healthcare system have very little idea about how to care for us.

“There are so many barriers. You have to have this dynamic, systems-orientated view of it to see that the health system is failing us, but so is home affairs, tertiary education — because our doctors don’t know how to manage trans patients adequately — so is basic education. It all ties in. You have to see the interconnectedness. You can’t fix the healthcare system without fixing the other systems.

“We have a problem now in that we don’t have the masculinising hormone used by so many people, but if and when that problem is sorted out, it doesn’t mean that trans health is sorted out. This might be a catalyst for a bigger movement and a bigger conversation. And that conversation needs to go forward.

“We need to keep our attention focused and mainstream society needs to have this conversation. We need people to understand what the difficulties are and how easily they’re fixed. All it would take is some attention, effort and compassion from the systems and those running them.”

Stockout of Depo-Testosterone is life threatening

A months’-long national shortage of an affordable masculinising hormone has not just adversely affected the health of a number of transgender men but has revealed worrying levels of disregard for the general well-being of a sector of the population already carrying an unusually heavy load of discrimination, stigma and even violence. KARIN SCHIMKE reports.

Depo-Testosterone, an affordable injectable hormone used by cisgender men with testosterone deficiencies, transgender men undergoing gender affirming treatment and non-binary people, has been out of stock in South Africa for more than three months. The shortage has been described as life-threatening.

“When we say life-threatening, we are referring to the fact that suicidality among transgender people is extremely high,” says psychologist and transgender man Elliott Kotze. “Gender dysphoria is extremely unsettling to live with and hormones are the key to translating your body so that others can read it the way it really is. We’re pretty frantic and desperate. This is an emergency for us, but no one except we seem to see it that way.”

GenderDynamiX health advocacy officer Linda Zakiyya Chamane explains that because the medication is chronic, physical manifestations of ceasing to take it are immediately felt, and all these pose not only serious physical health risks, but also have an impact on the mental health.

Lwazi Mbokazi, from KwaZulu-Natal, says he recently phoned his pharmacy to get an update on a restock of T, as the hormone is generally called. “They couldn’t give me date because they are having issues with their supplier. The mentioned middle of March. Nobody has given us a valid reason behind the supplier complications and, we weren’t forewarned in the first place, which is unethical.”

Mbokazi, like many of the trans men Spotlight spoke to, has helplessly had to watch his health decline.

“I’ve been off testosterone for nearly two months now and I have been experiencing severe depressive episodes that make it difficult for me to perform simple task, because of the fatigue and moodiness caused by low T levels. I haven’t been able to sleep much, and I wake up with anxiety every morning, because my hormones are all over the place. But I am relieved that my menses haven’t returned.”

It became clear to users of the injectable Depo-testosterone by February that it was difficult to have their prescriptions filled, though some report that their difficulties began in November last year.

Communication from the suppliers, Pfizer, around the reasons for the stock-out has been terse. It has emerged that a letter was sent by a junior brand manager at Pfizer Laboratories to health care professionals on 3 December 2018, stating that “we continue to experience an out-of-stock situation of Depo-Testosterone 100mg INJ 10ml […] We wish to assure to assure you that every effort is being made to resolve this situation as quickly as possible. We apologise for the inconvenience that this situation may cause you, your customers and/or patients.”

It appears that this message didn’t filter through until the stock-out became evident to users early in February, at which point Pfizer said in a short statement that stocks would be replenished by the end of that month. Two weeks later, as trans men around the country scrabbled around desperately trying to find stock, Pfizer released another short statement, saying that the interruption was out of their control.

Charmaine Motloung, the communications and media manager, said in a statement: “Pfizer recognizes the importance of the consistent availability of Depo-Testosterone … and actively worked with the Regulatory Authority to minimize the impact of the shortage on our customers and patients.”

Portia Nkambule, acting chief executive officer of the South African Health Products Regulatory Authority (SAHPRA), responded to a media query about whether the stock-out was the result of a hold-up in the issuing of permits, saying that “the issuing of permit by SAHPRA was sub-optimal between November 2018 and January 2019. This was partly caused by the migration of SAHPRA office to new premises.”

SAHPRA has recently undergone restructuring. It used to be known as the Medicines Control Council.

She said the internal matter of permit issuing had been resolved in February.

Transgender activist, author and general practitioner Dr Anastacia Tomson said not having the permits issued might be valid as an excuse for a period of time but bringing drugs into a country was an operation that had hold-ups all along the way, from lead times, to shipping, to customs to import duties.

“Drug companies know that they can expect delays along the way and there are usually reserves and surplus. You don’t start ordering a widely used drug when the last stock runs out. This problem must have been coming for a while and one cannot help but think that poor planning is an issue here.”

Depo-Testosterone is used by transgender men as a chronic medication, but it is also used by cisgender men with testosterone deficiencies. Demand for hormones is growing exponentially as more and more trans people come out. Canada and France recently experience hormone stock-outs, and Italy is currently also experiencing one. Last year, the feminizing hormone Premarin was unavailable to trans women in South Africa for several months.

“The amounts world-wide don’t seem adequate, especially if you consider how many people who need it don’t even have access to the hormones for a variety of reasons,” says Dr Tomson.

The stock-out, which has caused enormous distress, was widely discussed on social media, with users asking for tips on who might still have stock. Cisgender men who had extra vials of the hormone were offering their supplies to desperate transgender men.

Some people, like Germaine Gabriel de Larch, decided to try black-market hormones, because the only other masculinising hormone available, Nebido, is expensive in comparison to Depo-Testosterone.

“I had to go on to a black-market testosterone as it is the only one I can afford. I have been experiencing exhaustion, nausea, severe light-headedness and dissociation. These symptoms became too unbearable after just two shots and I stopped taking that testosterone a week ago,” they said.

“I’m feeling desperate in medical terms as I struggle with mental health issues. Keeping my body hormonally balanced is essential for my mental health. I also worry about the physical effects of low testosterone, which include exhaustion, insomnia and reduced bone mass. Then there are the symptoms which worry me in terms of my gender dysphoria: loss of muscle mass, redistribution of fat to hips and thighs, and the worst, the return of my period, all things that make me extremely uncomfortable and affect my mental health.

“Once you’ve experienced the relief of the masculinising effects of testosterone and the relief and sense of confidence that that brings, the thought of the loss of these effects is terrifying. Emotionally, I’m feeling despondent, overwhelmed and anxious.”

The stock-out, with its own particular set of frustrations about the lack of communication and the fall-out for individual physical and mental health, has thrown a stark light on much larger issues facing — by some estimations — around one in 200 of our fellow citizens.

De Larch says. “I’m feeling despondent, anxious and let-down by a system that is supposed to provide us with the human right of access to healthcare. The lack of response to this healthcare crisis points to a lack of concern and a lack of awareness of the magnitude of this issue for the trans, non-binary and intersex community.

“What needs to change is the medical and healthcare sectors being more serious about providing healthcare to these minority communities, and being more understanding of how this stockout and the larger apathy towards the concerns of the trans community needs to be analysed in order to cater to the health issues of trans people.

“This lack of understanding and apathy is based on the misapprehension that trans healthcare is elective, rather than a chronic healthcare condition.”

Mbokazi says: “The way the relevant parties have failed to immediately act to resolve the issues around the stock-out has made me realise that trans healthcare isn’t taken seriously in this country. Or anywhere else for that matter. I don’t know if it’s because of underlying transphobia, but the healthcare system doesn’t have any preventative policies or measures in place that could compensate trans people during emergencies like this.”

System-wide neglect of the transgender population

The recent stock-out of a hormone used in gender-affirming treatment for transgender men following soon on the heels of a stock-out last year of the primary hormone used by transgender woman, has revealed a system-wide neglect of a large sector of the South African population. KARIN SCHIMKE reports.

Transgender men, who require testosterone as a chronic medication for gender-affirming treatment, were caught unawares by a stock-out of Depo-Testosterone earlier this year. No one seemed to know, or be prepared to fully communicate, the reasons for the stock-out, when the problem would be resolved properly, and whether it would reoccur.

The shortage of the hormone is described as life-threatening. The transgender population has a high incidence of suicide and the changes wrought by the sudden cessation of treatment has dire effects, not just on the men’s transitioning bodies and their endocrine systems, but on their mental health.

Seth Deacon, a transgender man, said that, as is often the case, the transgender community had been left to seek their own solutions to their unique problems. Information and support are shared on social media.

Psychologist Elliott Kotze, a transgender man, said that some of the problems in the healthcare system, both private and public, was that gender affirming treatment and surgeries were classified elective and cosmetic treatments, rather than life-saving care.

Deacon said transitioning was difficult and financially taxing in numerous ways.

“I grew up in the public health system. I’m lucky enough now to have a good job and private medical aid. But even people like me don’t get the level of care they need, because medical aids don’t pay. Transgender people come from all walks of life and being able to access to healthcare should not be reserved for the privileged few.”

There are currently only three public hospitals that provide care for the transgender community: Steve Biko, in Pretoria, Chris Hani Baragwanath in Johannesburg and Groote Schuur in Cape Town. Last year, due to training done by, among others, GenderDynamiX, Nelson Mandela Hospital in Mthatha did its first gender reassignment surgery.

People who do not live in those provinces, cannot access care from those hospitals’ special units, and those who live in the provinces and do want the surgery, have to add their names to lists so long, they’ll be lucky if they have their surgeries done within 25 years.

Not everyone opts for surgery, but even just getting the correct hormones or any other support services, is extremely hard, including for those people who lives in metropoles.

GenderDynamiX health advocacy officer Linda Zakiyya Chamane says transgender people in rural areas have almost zero hope of getting any support at all for their needs.

Dr Anastacia Tomson said: “Transgender populations are neglected by a number of areas in society, but especially or very prominently by the health care system. This group of people has very specific needs — not complicated needs, just specific needs — and those are underserved.

“We know that the healthcare system is failing all kinds of marginalised groups of people. We know that it is failing women, children, people who are HIV-positive and LGBTQI+ people. And we definitely know that amongst the latter group, it is possibly the most seriously failing transgender and intersex people. And those problems run deep [provide link here to what the failings are ].”

Deacon said: “There are NGO’s and individual doctors in the public and private sectors who are sympathetic and helpful and provide support, but not enough of them. It occurred to me, as I was chatting to friends online, that it is important for us to advocate for ourselves.

“Very little is ever achieved without a mass movement of people — and I use ‘mass’ in inverted commas when it comes to the transgender community for various reasons, not least of which is that to be openly transgender is hard. People are genuinely afraid to come out. We have this one issue now, the stock-out of Depo-Testosterone, but there are lots of issues.

“So, what if we all got together? We have lots of problems, but we also have lots of skills, contacts and resources, and our numbers together in themselves are worth something.”

Transgender people and their allies — including parents, medical practitioners and representatives of NGO’s — met and formed #Unite4TransRights in February.

The group, endorsed by NGO heavyweights such as Treatment Action Campaign, SECTION27, Be True 2 Me, Triangle Project and GenderDynamiX, sent out a statement to the media outlining their demands.

They called not only for a clearer response from Pfizer, who supplies Depo-Testosterone, about the stock-out and the planned remedies, but also the National Department of Health to respond to the crisis “and put pressure on Pfizer to uphold their commitment to provide healthcare to its clients” and to “ensure that gender affirming hormones can be accessed at all primary healthcare facilities, including in rural areas”.

The statement also asked for national and international LGBTQI+ human rights organisations to show solidarity, and a revision of healthcare policies for transgender, non-binary and intersex communities.

On 19 March, the Psychological Society of South Africa (PSYSSA) had a Western Cape launch of its Practice Guidelines For Psychology Professionals Working With Sexually and Gender-Diverse People which was printed last year.

The only other guide for health professionals that exists is The Adult Trans Gender Patient: A Guide for General Practice: Hormone Transition Therapy, published by GenderDynamiX. That guide is out of date, however, and Dr Tomson, along with Dr Elma de Vries, who compiled the first guide, is currently updating it.

There are no national Department of Health endorsed standard treatment protocols or guidelines, said Kotze.

Dr Tomson said: “We are having these conversations amongst ourselves, but we need mainstream society to have this conversation. We need people to understand what the difficulties are and how easily they’re fixed.

How many people are transgender, non-binary or intersex and in need of treatment?

This is almost impossible to say, even internationally, because of stigma and a real threat to people’s safety if they come out. But, said Dr Tomson, overseas figures indicated that transgender people generally made up about 0,5% of the population.

“That means, that if you have a room of 200 people, there’s at least one trans person in that room,” she said.

“Transgender identity is a normal variant of human development. There have been trans people for millennia. We are not going away. We have always been here, we will always be here. We are not broken, we are not defective. Some of us want access to medication and we should have it.”

#Vote4Health: Still no end in sight to orthopaedic disaster in Free State

An overcrowded Pelonomi hospital has forced patients into cramped quarters. Mattresses on floors are the new normal here. Pic by Khothatso Mokone

Orthopaedic surgery backlogs have become old news at Bloemfontein’s Pelonomi Hospital, but it’s still fresh hell for the patients admitted every day and forced to sleep on chairs, on floors and on stretchers pushed up against corridor walls waiting for beds, often for weeks.

Even when orthopaedic patients at the hospital eventually get a “bed” it may be a mattress on the floor and sometimes men, women and children are forced to sleep in the same room. Patients are also being told that they could wait weeks to get to an operating theatre slot if their surgery isn’t considered a priority. This means patients with fractures considered less serious are simply left to wait.

Delays in surgery puts patients at risk of complications in the future. Improperly treated bone fractures can lead to long-term or permanent nerve damage; deformity and disability; damage, rupturing or stress on the muscles and ligaments; blood clots and sores; infection in the bone and marrow or avascular necrosis – there the bone loses its blood supply and dies. If a neck fracture is left untreated it could result in paralysis or death.

On top of this, patients are also told that if they choose to go home to wait for a surgery date they’ll lose their spot in the queue.

Spotlight already reported in December 2017 on the shocking state of affairs in Pelonomi’s orthopaedic ward. It was a story of long waiting lists and undignified hospital waiting areas. At the time Free State Department of Health spokesperson Mondli Mvambi said “We are constantly making plans to intervene and cutting the backlog of services.  We are appointing professionals especially to the periphery and the sustenance of orthopaedic services to Botshabelo.” Referring patients to Botshabelo has been a common refrain from the Department since Spotlight started covering this story.

When Spotlight returned to Pelonomi earlier this month it appeared as if nothing had changed in the 16 months since we last wrote about the hospital – in fact the waiting times seemed longer, the wards more chaotic and the patients more defeated.

Patients are told to limit the time they spend out of their wards, so nurses don’t have to repeat messages to them. For the patients it’s a torment of boredom, anxiety, frustration and discomfort being confined to a bed (if they lucky) waiting for surgery. The ward is noisy and stuffy with visitors coming and going at all hours and staff smoking inside offices behind closed doors.

Patients speak of long queues for bathroom time, very little privacy and no communication or clarity on when they will get their operations.

Lying on the bare floor

The plastic chairs in the foyer area of the fifth floor orthopaedic ward also double as beds and as dining area for the likes of Mpumelelo Mattroos (seated on the chair), who are left for days without being given a bed. Pic by
Khothatso Mokone.

On a Tuesday morning earlier in March Mpumelelo Mattroos is one of the patients sitting on the zig-zag of plastic chairs in the waiting area of the orthopaedic ward. Mattroos arrived at the hospital two days earlier on the Sunday after being in a car accident that left him with a broken arm, cuts and bruises to his left eye and severe whiplash. He’s arm is bandaged and in a sling but he’s been told there’s no bed, and he must wait. His personal items he’s had to store in an emptied out plastic dustbin pushed into a corner. His coat is folded over the dustbin and he takes sips from a two litre bottle of cooldrink on the floor.

Mattroos switches from sitting on the chairs to lying on the bare floor. He grimaces every time he moves. Another patient who is also sleeping on the chairs, translates for him as he tells Spotlight how frustrated, angry and in pain he is.

“I thought at least I could have the operation today and leave by Friday because I must report at work,” says Mattroos, who works on a mine in Rustenburg. His employer doesn’t know his situation and he’s anxious he’s going to lose his job.

As he talks he daubs at his weeping injured eye with his own handkerchief, he’s still in his own clothes, not hospital pyjamas. Later when the food trolley arrives he’s dished up a plate of food that he must balance on his lap and negotiate with his uninjured arm.

Mattroos does get a bed later that night and his surgery is considered enough of an emergency that he’s operated on two days later. But he misses his deadline to get back to work, his future uncertain.

“It’s the same story”

Bereng Ramosebi is at Pelonomi’s orthopaedic ward for a second time in less than two years and is again being told there’s no certainty when he will get his surgery. Pic by
Khothatso Mokone

Still waiting however, are the likes of Bereng Ishmael Ramosebi. He’s furious because it’s the second time in less than two years that he’s been in Pelonomi Hospital for a broken bone and each time he’s been left waiting.

“It’s the same story. This is very painful that nothing has changed,” he says.

Back in 2017 Ramosebi, who works as a security guard, broke his hand. It took nearly three months, he says, to get his surgery. In a ground floor ward this time around he’s been given a bed after two nights but he’s not been given a surgery date. In his ward one man with a broken leg has been waiting for more than six weeks unable to return to work. A student has missed two weeks of class waiting for surgery.

Ramosebi is anxious he too has a long wait ahead of him. “The nurses tell us they aren’t in charge, the doctors tell us that they have lists with 45 other patients on it. I have to work so I can pay rent but I can’t go anywhere.”

Ramosebi was injured running from robbers who attacked him for his cellphone and wallet. He hasn’t been able to communicate with family and friends or his employer since he came to the hospital. Five days into his stay he says he’s seen a doctor only once.

Waiting for three weeks

Also among the orthopaedic patients is Treatment Action Campaign (TAC) Free State provincial manager Enoch Moware. The activist broke his arm and was waiting at Pelonomi for a surgery date. He speaks about his experience, nearly three weeks into the wait.

“I feel very bad. We are told stories like this all the time, but now I’m experiencing it for myself,” he says.

Moware has used his hospital stay to push for action and insists on answers from hospital management. Eventually, he was told “contingency” plans would be put in place and efforts to close backlogs would commence.

“Whatever the politicians say, it’s still a crisis, because we are still getting more patients coming in, so there will still be a backlog. One doctor told me that he alone has 45 patients waiting to be operated on,” he says

On Moware’s doctor’s note it says: “Due to the nature of theatre procedures it is difficult to predetermine the duration of his/her hospital stay”.

Earlier this week, after nearly three weeks when he first arrived at Pelonomi, Moware was woken up at 2.30am, loaded in a van and transported to Botshabelo where the surgery was supposed to take place. At Botshabelo they were left till dawn in a waiting area with no clarity on what was about to happen to them.

A history of failings

In October 2016 Spotlight reported on unlawful stem cell research being conducted at the hospital with the support and approval of the then Free State MEC for Health Dr Benny Malakoane. Experimental stem cell therapy was being used to treat musco-skeletetal diseases in orthopaedic knee patients.

As soon as Spotlight alerted authorities the Medicines Control Council (MCC – now SAHPRA) suspended the unlawful stem cell experimentation at the hospital. At the same time the Free State Department of Health cancelled its contract worth a potential R90-million with the company ReGenesis Biotechnologies, the company that was conducting the unlawful trial. What angered doctors is that the department was prepared to spend this money on an unlawful trial, but did not have money to conduct straightforward orthopaedic surgery. Following coordinated exposes by Spotlight and the television programme Carte Blanche, Malakoane was moved out of the health portfolio in the following week.

Even though the Free State department of Health was involved in an unlawful trial and was set to spend tens of millions of Rands on unproven and potentially dangerous stem cell therapies, neither Malakoane or the ReGenesis doctor Wian Stander have been investigated by authorities or the Health Professions Council.

Spotlight also reported in October 2018 on the on-going problem of inferior hospital equipment supplied by a company called Mediquip Hub SA to Free State hospitals, including equipment needed for orthopaedic surgery at Pelonomi. It is a tale of, among others, nepotism, contracts for political allies, unusable x-ray machines, wonky theatre beds and  theatre lights that are too low.

Flood of patients

Mvambi acknowledges that Pelonomi has been under pressure for years. He ascribes it to the “flood of patients” from surrounding areas and also because of high road accident numbers as major national roads cut through Bloemfontein. He claims they had managed to clear a backlog of about 200 orthopaedic surgery cases in 2018 and early 2019. However, he says storm damage in February to Botshabelo Hospital (about an hour from Pelonomi), that had worked with Pelonomi to alleviate the backlog, resulted in Botshabelo’s operating theatres being temporarily put out of commission.

He said operations at Botshabelo would resume by 20 March. He also said several other measures had been put in place to ease congestion at Pelonomi. Some of these, he says, include clearing unused Intensive Care Unit areas to make bed space, instituting 24-hour surgery lists and operating at Albert Nzula Hospital. This facility is over an hour away from Bloemfontein, making it difficult for family and friends to support patients there.

The department didn’t answer Spotlight’s questions regarding what is considered a reasonable waiting time at Pelonomi , the costs involved with accommodating patients for extended waiting periods, and continued allegations of irregularities in procurement of services and equipment including the use of locum agencies.

 

 

New guides to advocating in AIDS councils

Spotlight has developed two new advocacy guides for members of provincial or district AIDS councils. One focuses on TB prevention and the other on retention in care of people living with HIV.

These are practical advocacy guides that we hope will be useful to members of AIDS councils who wish to find district or provincial-level solutions to these two critical problem areas in the HIV and TB response in South Africa.

The guides can be downloaded for free by clicking on the links below. The guides have been designed to be printed on A4 pages that can be folded after printing.

Let’s Make AIDS Councils Work – HIV

Let’s Make AIDS Councils Work – TB

 

Let us know what you think about the guides in the comment section below.

Silicosis: The names in Paragraph 7

By Thom Pierce

I stared at the legal document. It  looked almost identical to the first time I saw it four years ago, except for paragraph 7 which was longer this time, expanded by a jumble of names that were all too familiar to me. I was surprised by the intensity of sadness that I felt as I read the names and looked through the portraits that I had taken back in 2015. A sense of failure overwhelmed me as I added the photographs of 10 miners to the folder on my computer labelled “passed”.

In the legal documents, paragraph 7 contains a list of miners who have died since the silicosis class action was brought against 32 gold mining companies in South Africa. The legal documents lists the 56 applicants who represent thousands of gold miners who have contracted the devastating lung disease from working underground, in poor conditions, under the watchful and knowing eye of a system that prioritised profit over human dignity.

But first a step back on how I came to know some of the miners. In 2015, SECTION27 and the Treatment Action Campaign commissioned me to do what I at first thought was impossible – use my camera to document all 56 of the applicants named as the representatives of the thousands of miners in the historic class action.

SECTION27 was the legal representative of the Treatment Action Campaign and Sonke Gender Justice who had been admitted as amicus in the case to show the impact at community and household level. There was a feeling that these applicants could merely become numbers and that it was important to show the world who they are and where they live, to make those numbers human.

Over 20 days I journeyed through the back roads of South Africa’s Eastern Cape and Free State via the mountains of Lesotho to meet the men and women who were either miners or left behind after the migrant workers contracted silicosis and/or tuberculosis on the gold mines.

On the day the class action kicked off in the Johannesburg High Court, we unveiled the “Price of Gold” exhibition in an underground cellar below the Methodist Church adjacent to the court buildings. The full installation, parts of which have been to Cape Town and the rest of the world, involves the recreation of an underground setting with visitors having to wear hard hats in a dark room, where the images are only visible with the aid of head lights. A soundtrack of the laboured breathing of a miner with silicosis is also played during the exhibition.

Back to the now and Paragraph 7. SECTION27 and their publication Spotlight, were planning another exhibition of the “Price of Gold” portraits as part of the human rights festival at Constitutional Hill, Johannesburg at the end of March. As I prepared the portraits for printing I requested from one of the legal firms an update on the miners that I had photographed.

Paragraph 7 in the legal documents includes the following: “The following class representatives have since passed away and are therefore not cited as representatives of the settlement classes: Mr Zwelendaba Mgidi, Mr Zaneyeza Ntloni, Mr Tekeza Joseph Mdukisa, Mr Tohlang Paolosi Mako, Mr Myekelwa Mkenyane, Mr Patrick Sitwayi, Mr Vuyani Dwadube, Mr Matela Hlabathe, Mr Siqhamo Richard Hoyi and Mr Buzile Nyakaza.”

To be honest, when I requested an update I expected there to be one or two miners who may have passed on by now, if any.

Out of 56 miners, or their families, that I photographed for the project, 10 names had been added to the list of deceased. As I clicked through the photographs I could clearly remember the experience of being with each person, turning up at their homes with only a couple of words of their mother tongue, mostly relying on an interpreter to help me explain what this project entailed. A white man asking to photograph them, to make public the injustice that has been done to them, mostly by other white men. I had to explain to each person that what I was doing would not bring them compensation but that it might help to raise awareness of the injustice, to make the story more public and more accessible. To help more people understand that these are not just names; but people with homes, families and communities.

I was welcomed into every home, without exception, my reasoning accepted; and generously given the time and information that I needed to tell their story.

As the project unfolded I started to see that the injustice was not solely realised in the violent indignity of a labour force, so dehumanised that their health and safety was of no concern to anyone, often not even to themselves; but that it started by being born into a world, a country and an inhumane system that was specifically designed for them to fail. A world where they were denied a proper education, stripped of their humanity and forced to seek unskilled, underpaid work in, what we have known for many years to be, deadly conditions. Then, when they became sick because of this work, they were dismissed and discarded, with little or no compensation, back into a world within which they did not have the means to prosper. Sent back to their rural homes, sick and poor, with no transferrable skills and no support.

I have been around the world to talk about The Price of Gold, to sit on panels and discuss the efficacy of a project that was acknowledged as being instrumental in raising public awareness of this injustice. I have won awards for this project and it has been published and exhibited globally. The court case is ground breaking as a class action, not only because it is the country’s first real class action, but also because of the scale of it.

But we have failed the miners AND their families by allowing this to drag on for as long as it has. Yes, there has been a settlement agreement, but for those on the ground the reality is that there has been no compensation paid, the surviving men and their families still live in the same conditions, still struggle to breathe, struggle to work and struggle just to get by. As they die so does the need for them to be compensated and, perhaps the greatest injustice of all is that their families are left without them, and without the right to compensation. These ten men have died, but they represent thousands more that were not named in the court documents and photographed for the project, thousands who may die before compensation is distributed.

With every miner that dies, we fail them again. As I look at these photographs I remember the resignation in their eyes and the shame in some of their voices. The shame of not being able to support their families anymore, relying on their wives, partners or children to look after them and earn money, in whatever way possible, to put food on the table. As I look at these photographs I remember the families, the children and grandchildren who are left behind; without the right to compensation. As I look at these photographs I think of the miners and I ask myself if those with the power to compensate could speed things up, or if they are happy to drag things out as death will absolve them of responsibility

  • A website has been set up containing all the details of the settlement as well as a guide on how to lodge a claim https://www.silicosissettlement.co.za/
  • Thom Pierce is an award winning photographer based in South Africa. His work focuses on issues of human rights and social justice, through a combination of art, documentary and portrait photography. For more information visit thompierce.com.

New science: Highlights from CROI2019

Last week the Conference for Retroviruses and Opportunistic Infections (CROI) was held in Seattle, USA. Spotlight did not attend this year’s conference, but fortunately all CROI abstracts and presentations are made available online. Below we have picked some highlights of relevance for South Africa.

1.  New TB prevention therapy works well with dolutegravir

From July the antiretroviral drug dolutegravir will become part of the standard first line treatment for HIV in the public sector in South Africa. Also, in 2019, it is expected that South Africa will introduce a new standard therapy called 3HP for the prevention of TB. The 3HP regimen involves taking a weekly pill containing the medicines isoniazid and rifapentine for three months.

A study presented at CROI found that it is safe to take dolutegravir-based antiretroviral therapy together with 3HP without adjusting the dosage of either. This is good news for patients, since it means that they will not have to take extra dolutegravir pills as was feared might be the case. The confirmation of safety also means that 3HP is now likely to be included in TB prevention guidelines in South Africa and made available in the public sector – providing a low enough price can be negotiated. You can read HIV I-base’s coverage of the study here.

2 .  Using two important new tuberculosis treatments together is safe

Bedaquiline and delamanid are the only new TB medicines to be approved in decades – both for the treatment of drug-resistant forms of TB. Drug-resistant forms of TB are treated with anything from three to eight different medicines – typically around five. Yet, until now it was not known whether it is safe to use these two new drugs together – both impact heart rhythms (so-called QT intervals).

A study presented at CROI found that it is indeed safe to use these two drugs together, providing a baseline heart test is done when treatment is started to rule out pre-existing heart risk. The researchers concluded: “The combined effect on the QTcF interval of co-administration of bedaquiline and delamanid is clinically modest and no more than additive. You can read the full abstract here.

This study will likely contribute to updates in both WHO and South African treatment guidelines for drug-resistant TB.

3.  Monthly ARV injections appear to be safe and effective

Two studies presented at CROI explored the use of monthly injections of the two ARVs cabotegravir and rilpivirine for HIV treatment – the one study in people already stable on HIV treatment and the other in patients newly starting treatment. Both studies found the injections to be about as safe and effective as daily pills. For more detail, see HIV I-Base’s write-up of the two studies here.

It now seems likely that, for at least some people, monthly injections will become an alternative treatment option to daily pills in the next few years. The usual issues with price, registration and public sector availability still lie in wait. In addition, whether people will prefer monthly injections to daily pills out in the real world remains to be seen – in these two studies at least patients were very positive about the injections.

4.  New HIV prevention therapy seems as good as current standard

The current gold-standard in HIV prevention treatment is the combination of the medicines tenofovir and FTC in pill form. TAF is a new form of tenofovir that allows for smaller pills and appears to have a slightly better safety profile. A study presented at CROI found that TAF plus FTC was as effective as traditional tenofovir plus FTC in preventing HIV infection while appearing to be better for bone density and the health of the kidneys. The study was conducted in gay men and transgender women, but the findings are likely generalisable to other groups. TAF has been licensed to the Medicines Patent Pool, so affordable generics of this new option for HIV prevention are likely not too far away.

5.  Integrase inhibitors seem to cause moderate weight gain

Integrase inhibitors, the class of drugs including dolutegravir, appears to be associated with a slight  increase risk of weight gain. There are a number of studies looking at this issue and the findings are not conclusive as to what sub-group of people are most at risk and which integrase inhibitors are most strongly linked, but the general finding of an increased risk seems to be well-founded. As pointed out in a summary of the evidence on the website AIDSMap, the weight gain is fortunately not like that associated with lipodystrophy (a side effect of earlier ARVs such as d4T that lead to abnormal fat distribution that many found stigmatising). Either way, the potential for modest weight gain may or may not turn out to be an issue as dolutegravir becomes available in the public sector in South Africa.

6.  Massive HIV prevention study confirms importance of community healthcare workers

PopART is possibly the largest HIV prevention study ever conducted. The key PopART intervention included annual home-based HIV testing provided by community healthcare workers who also supported linkage to care, treatment adherence and other related services. The study randomised 21 communities in South Africa and Zambia to one of three interventions: universal treatment plus the PopART intervention, treatment according to local guidelines plus PopART, and a control arm with the standard of care in the country without PopART.

The universal coverage plus PopART arm had a 7% lower incidence rate than the control arm – a finding which was not statistically significant. The local guidelines plus PopART arm however had a statistically significant 30% lower incidence than the control arm. The counter-intuitive finding that incidence was higher in the universal treatment group than the local guidelines group is puzzling. Even so, the underlying indication that community healthcare workers working in the PopART model can help bring down incidence is compelling. AIDSMap reports that it emerged in questions after the session where the findings were presented that the two PopART arms together had 20% lower HIV incidence than the control. To what extent government will implement aggressive PopART-style interventions of course remains an open question.

The researchers concluded their abstract: “Community-based HIV testing and linkage is a key component of combination prevention in efforts to achieve effective HIV control.” You can read the abstract here.

7. Food vouchers increases HIV testing in men in KwaZulu-Natal

Getting more men to test for HIV is one of the biggest challenges in South Africa’s HIV response. A study conducted in KwaZulu-Natal tried three different interventions to encourage men to take up home-based HIV testing in different communities – comparing all three interventions to the current standard of care. In one set of communities men were offered R50 food vouchers as an incentive to test, in another the vouchers were offered together with male-targeted counselling provided through an App, and in the third the counselling was offered without the voucher. While the counselling App did not have much impact, the probability that men would test was increased by about 50% in the communities where vouchers were offered. The researchers concluded that: “Micro-incentives significantly increased the uptake of home-based HIV testing among men in rural South Africa and should thus be considered as a policy option where HIV testing rates are low.” You can read the full abstract here.

8. Second man cured of HIV

Much of the headlines from this year’s CROI were dominated by reports of a second man ‘cured’ of HIV following a stem cell transplant. While these cures are important scientific advances, they are of no immediate relevance to almost all people living with HIV given that it involves an extremely dangerous procedure that one would only risk when faced with the serious risk of death. HIV I-Base has written a good summary of the case here and long-time AIDS activist Gregg Gonsalves did a good job of putting it all in perspective here.

 

Gauteng and KwaZulu-Natal Circulars on migrants may be a sign of things to come

Opinion by Sasha Stevenson

The first few days of March 2019 must have been a time of great uncertainty for migrants in South Africa in need of health care services.

On 1 and 6 March, circulars from the Gauteng and KwaZulu-Natal Departments of Health respectively came to light. The Circulars said that all non-South Africans, other than refugees, would from now on have to pay in full for all health care services at public clinics and hospitals. Payment would be due upfront or on discharge. This was a huge change from the current legal position which assures everyone, regardless of citizenship or immigration status, free primary health care services and requires that refugees, asylum-seekers and undocumented migrants from SADC states be treated like South Africans when needing hospital care and means tested to determine their ability to pay. Pregnant and breastfeeding women and children under six are given special protection and assured free services in government facilities.

By 3 March the National Department of Health had said that it had withdrawn the national-level memo on which the Gauteng and KwaZulu-Natal Circulars were based. By the following day, Gauteng too withdrew its Circular. After various requests for clarity KwaZulu-Natal’s Acting Head of Health Dr Musa Gumede confirmed on Thursday night (7 March) that their circular had too been withdrawn (Five weeks after it had been sent).

So the question now is what this flurry of memos and circulars (and failure to clarify) says about what is happening in the National, KwaZulu-Natal and Gauteng Departments of Health. Over-eager junior officials have taken the blame for the distribution of the memo from the National Department but the Gauteng and KwaZulu-Natal Circulars are more or less in line with the approach to migrants in the NHI Bill. The sentiment didn’t come from nowhere.

The NHI Bill repeals the provision of the National Health Act that provides for free health services. It also cuts out entirely undocumented people from NHI and limits services available to refugees and asylum-seekers under NHI to emergency services, services for notifiable conditions of public health concern, and paediatric and maternal services at primary health care level. So if, as a refugee fleeing persecution in the DRC you need to give birth in a hospital or your child is seriously ill or you need ARVs, you will have to pay for them.

In this way, the NHI Bill, like the National memo and Gauteng and KwaZulu-Natal Circulars, envisage a step backwards in access to services for people who aren’t South African. This is the opposite of progressive realisation of rights – a constitutional imperative.

And so while the battle for now seems to have been won, the war is far from over. In a country with limited resources and a strained health system, there will always be pressure to cut spending. We cannot, however, do so in a way that violates constitutional rights.

Read the full SECTION27 statement here

* Sasha Stevenson is an attorney and the head of health at SECTION27

 

 

Vote4Health: Artist colony paints dull picture for rural healthcare

Hamburg is a small rural community in the Eastern Cape. Home to the Keiskamma Trust, an internationally recognised art, music, education and health NGO. The community is filled with talented artists and colourful displays. Photo: Kathryn Cleary

By Kathryn Cleary

Hamburg in the Eastern Cape, sits tucked away between the Keiskamma River and Indian Ocean coastline. About half way between Port Alfred and East London in the Amathole District, the village filled with artists paints a lacklustre picture of primary healthcare in rural areas. With less than 2 000 residents, one small government clinic and the nearest hospital 40 kilometres away, residents are under strain.

In 2013 Spotlight (then NSP Review) published Death & Dying in the Eastern Cape which among others highlighted the dire state of Hamburg Clinic. In 2017 Spotlight reported that the Hamburg Clinic had been in a dismal state since 2012, and after five years of negotiations, the Department of Health agreed to re-build. The project was scheduled to be completed within a year. Spotlight re-visited the community recently.

Veronica Betani, Supervisor Keiskamma Trust
“The clinic was not here at first. It was up the hill, the things affecting people to go there was the distance. For someone like me, who is fresh and walking upright you can spend half an hour. Elderly people you had to hire a care

Veronica Betani has lived in Hamburg since 2000, and works as a seamstress and supervisor at the Keiskamma Trust; an internationally known non-governmental organisation with programmes in art, music, education and health.

Betani estimated that the old government clinic closed down four years ago; as well as an HIV/AIDS hospice centre that was managed by the Keiskamma Trust. There was a big cry from the community when it closed, because we don’t have the money to take to hospital. We don’t have transport.”

While Nompumelelo Hospital in Peddie is 40 kilometres away, Frere and Cecilia Makiwane in East London are just under 100 kilometres.

Currently the Trust has two vehicles that are used for transport to hospitals at no cost to residents. Betani stated that this service has been operating for more than 10 years. Unless residents have a private car or money for a taxi, these vehicles are the only option.

Betani has little faith in provincial emergency medical services (EMS); and with the Eastern Cape reportedly experiencing a shortage of ambulances, the odds of one travelling 15 kilometres off the R-72 on a gravel road to Hamburg, are generally not in the community’s favour.

Carol Hofmeyr, Founder of the Keiskamma Trust and general practitioner, knows the community’s health background well. Starting in 2000 Hofmeyr worked in Hamburg in response to the HIV/AIDS crisis before antiretrovirals (ARVs) were widely available. With funding from the Trust, the organisation was able to purchase ARVs for the community.

“We were the only people with ARVs”, recalled Hofmeyr. “Even Port Elizabeth and East London didn’t have. But when the government system got in place after (then President) Mbeki left, then the government health service started providing everything.”

Two sides to the same story

In 2017, the government clinic relocated to a Keiskamma Trust building, next to the new building.

It is a small space of only a few makeshift examination rooms, meeting room and  a cramped waiting area that might comfortably sit 10 people. At the time Spotlight visited, a small group of school children were waiting patiently, and nursing staff were hurrying off to a meeting.

Cebo Mvubu, Manager of Keiskamma Art Project
“There is hope that when [the clinic] is built it will have more nurses. I would love to see the service, not the building.” Photo: Kathryn Cleary
A source at the clinic spoke briefly to Spotlight under anonymity, stating, that everything was fine at the clinic, something other sources would later contradict.

The source said that the clinic saw about 700 patients with no issues of patient management or the supply of stock. “When we are out of stock, we order”, they said. The source added that TB infections appeared to be on the decline, with only seven reported cases in 2018 and one so far for 2019.

The source said that the new clinic building was to be opened in May.

Eastern Cape Department of Health Spokesperson, Lwandile Sicwetsha, told Spotlight that the new clinic was complete but could not be opened due to outstanding water connections. “Our infrastructure department is working on resolving this matter with the municipality. It will only be opened when the water connection has been done.”, said Sicwetsha.

“We were so happy to know that by 2019 we were going to have a clinic but we are still waiting for them to open.”, said Betani.

Betani added that frequently the clinic was out of certain medications, another resident said the same, with two of her family members in need of medication on a monthly basis.

These two rondavels served as a birth centre from 2017; the only service of it’s kind in Hamburg. Due to water shortages from September 2018 through February of this year, women have not been able to use the centre. As a result, the centre tried to offer door to door services but could not manage due to poor privacy and sanitation conditions in rural homes. A new birth house is currently under construction. Maternal health is one of many gaps in primary healthcare services for rural Eastern Cape communities. Photo: Kathryn Cleary

Marionette Coetzee is a pensioner in Hamburg that lives with her husband and elderly mother; both need chronic medication on a monthly basis that Coetzee can rarely receive from the clinic alone. Coetzee has no transport and often uses a taxi to East London for specialist appointments and additional medication.

One of Marionette Coetzee’s medication lists; the X marks an item she could not get from the Hamburg Clinic. Photo: Kathryn Cleary

Due to her family members’ limited mobility, Coetzee visits the Hamburg Clinic and East London hospitals alone.

“You will be there at (the clinic) seven in the morning and there’s already benches of people. You will not walk out there before half past four in the afternoon. You will sit there the whole day, sometimes it’s just ridiculous.”

Coetzee showed Spotlight a collection of medication lists that she takes to the clinic each month for her family; from month to month there were clear inconsistencies in the availability of each drug. According to Coetzee’s list, on 21 January the clinic was out of drugs including Tramadol, a common narcotic painkiller, Ventolin solution for asthma, and Diazepam for anxiety.

Coetzee also alleged that a nurse at the Hamburg Clinic is often drunk and smells of alcohol, she was not the only resident that expressed this concern.

Zukiswa Nduli* is a mother in Hamburg, and stays in a small home on the hillside with her children. “We’ve got a challenge with the [one] nurse working there, the problem is [they] are always drunk even if [they] come to the clinic.”

Sicwetsha said the department was aware of the incident and the matter had been referred to the internal employee wellness programme.

Nduli* added that although the current clinic’s location was closer, the services had not improved.

“It’s worse”, she urged. “When we are going to the clinic there is no privacy, even if they try to check if you are pregnant or HIV positive, they can’t keep the secret. They talk to everyone about your health.”

Thinking rural for the NHI

With elections quickly approaching, the proposed National Health Insurance (NHI) system remains a hot topic, particularly for rural areas. Nduli* had not even heard of the NHI, and other residents who were questioned on how it would affect them.

Rural Health Advocacy Project Director, Russell Rensburg, told Spotlight that the NHI was an opportunity for reform in the healthcare system. He described the current system as “out of balance”, filled with issues of management and accountability. Though rural residents will not see results immediately, Rensburg believed the NHI was a step in the right direction.

Sicwetsha stated the Eastern Cape’s NHI pilot project has been tested in rural areas of Alfred Nzo and OR Tambo Districts. “The department is leveraging on these lessons to other areas of the Province.”

Looking forward, future plans for development of the Eastern Cape’s rural healthcare system are under wraps. Sicwetsha said that “plans for the year will be unveiled during the tabling of policy speeches and strategic documents (Annual Performance Plans, Operational Plans and Strategic Plans).” In the meantime, Sicwetsha stated that the department had partnered with the Keiskamma Trust to ensure outreach services continue in Hamburg and surrounding areas.

*Names have been changed to protect the identity of the source

**Read more of Rensburg’s critique of the 2019 healthcare budget and NHI here

Kathryn Cleary is a health journalist with Grocott’s Mail in Makhanda, Eastern Cape and was commissioned by Spotlight to write this article.