Life Esidimeni Arbitration: Testimonies

Testimony – Rev. Joseph Maboe (Hendrik ‘Billy’ Maboe)

Rev. Joseph Maboe (80) testified that during the Marathon Project, his oldest child Billy had been transferred from Life Esidimeni to Bophelong, a Non-Governmental Organisation (NGO) in Hammanskraal. This had happened despite the Reverend’s explicit resistance through joining the association of concerned Family Residents of Life Esidimeni in 2015, as well as being a part of the legal proceedings against the Gauteng Department of Health.

In his 2015 affidavit, Rev. Maboe stated that Billy had not stabilised at any of four different hospitals until he went to Life Esidimeni, and asked that he not be moved from there. Rev. Maboe was not contacted when Billy was moved, or told to where he had been moved. Billy was only located after he called Rev. Maboe on his (Billy’s) birthday.

When the Reverend saw his son, he was “dehydrated; he was hungry; he was filthy; he was smelly”; Rev. Maboe could see “death in his (son’s) face”. One staff member said that they did not give him water, because they did not want him to wet himself. Billy was so hungry that he ate the plastic packet the chips brought by his father had come in. He was worryingly weak, and could only be taken to the Jubilee hospital two days later, during the week, because a doctor was not on hand to provide a permission note.

Billy died on 22 July 2016, six days after reuniting with his father. The cause of death was indicated to be the result of a lower respiratory tract infection, and therefore ‘natural’. This was not sufficient for his father, who felt that the Gauteng Department of Health had been complicit in his son’s death.

Testimony – Ntombifuthi Olga Dhladhla (Joseph Gumede)

Ntombifuthi Dhladhla (53) testified concerning the circumstances surrounding the untimely demise of her older brother, Joseph Gumede. When she went to visit him in April 2016, Ntombifuthi was shocked to find that Life Esidimeni was closed, as she had not received any communication to this effect. No-one could tell her the whereabouts of her brother.

After traversing different NGOs housing Life Esidimeni patients to no avail, and having engaged with the Gauteng Department of Health (GDoH) for months, she was finally told that they would contact her shortly. According to his death certificate, Joseph had died on 24 July 2016 at Cullinan Care & Rehabilitation Centre (CCRC) in Pretoria. His death was only communicated to his family on 10 February 2017, almost seven months afterwards, when Daphney Ndhlovu, a social worker from CCRC, visited Ntombifuthi to inform them – this despite the fact that CCRC had her details readily available.

Joseph’s body had been deposited at a State mortuary in Mamelodi for that time. Unfortunately, according to Ntombifuthi, the State mortuary was not in good working order, resulting in the decomposition of her brother’s body.

It was so badly decomposed, Ntombifuthi could hardly identify him. It smelled terribly, and his eyes were not in their sockets. To add insult to injury, the undertaker’s car – a minibus taxi – had no trailer in which to put the body. They had to put it across a seat, resulting in flies collecting around it whenever the vehicle stopped at a traffic light. The body was so decomposed, it had maggots spewing out of it, resulting in the undertaker saying that they could not bury him with clothes. His funeral clothes were subsequently placed next to him, and his body wrapped in a blanket.

For Ntombifuthi, her brother did not have dignity in life (post-Life Esidimeni), or in death. She states that moving her brother without essential documents such as his medical records was part of the reason he passed away.

 

Life Esidimeni Arbitration: 143+ and counting?

By Ngqabutho Nceku Mpofu, SECTION27

After two years, and countless attempts at compelling the Gauteng Department of Health (GDoH) to act in the best interests of Mental Health Care Users (MCHUs), significant headway is finally being made in the ‘Marathon Project’ saga, which saw 1 441 MCHUs rapidly moved from Life Esidimeni – to their detriment. It is an indictment of the GDoH and other powers that be that this is happening a little too late for at least 143 mental

An angry Lucas Mogwerane lost his brother Christopher (pictured) as a result of the Marathon Project. He spoke of how his request for a timeous post-mortem was ignored.

health patients, reliant on the public health system, who lost their lives; for their bereaved families; and quite possibly for the 59 patients whose whereabouts are still unknown.

On 9 October 2017, the Life Esidimeni arbitration began. This dispute resolution process, led by former Deputy Chief Justice Dikgang Moseneke, has been geared towards considering adequate compensation, further alternative redress, appropriate psycho-social support, the provision of essential information, and – importantly – closure, where necessary, for families of deceased or affected MCHUs as well as surviving MCHUs.

This process is occurring almost two years after the GDoH announced that it was terminating its long-standing relationship with Life Esidimeni. The need to deinstitutionalise (which is cautiously highlighted in the National Mental Health Policy) and a lack of adequate resources were cited as the primary reasons for the Project. During the arbitration process, both of these reasons have since been debunked.

Life Esidimeni, a private health institution with multiple facilities in Gauteng, had a relationship with the State dating back three decades – to before the dawn of democracy – providing it with services for MCHUs.

Monomong Welheminah Thejane told the arbitration that she firmly believes that her brother Daniel Charles Josiah died as a result of negligence. She stated that he had not been moved with his medical file or his identity document.

The arbitration process has been undertaken as per the recommendations of the Health Ombud, Professor Malegapuru Makgoba, in his report, titled ‘The Response into the Circumstances Surrounding the Deaths of Mentally Ill Patients- NO GUNS: 94+ SILENT DEATHS AND STILL COUNTING[1]’. Prof Makgoba found that despite multiple attempts – by experts, civil society, family members and other concerned community members – to dissuade the GDoH from conducting the Marathon Project, the Department proceeded; resulting in the deaths of MCHUs, which may partly be attributed to the abysmal conditions at the Non-Governmental Organisations (NGOs) to which most of the MCHUs were moved. Parties that attempted to ensure that this did not occur include SECTION27, the South African Depression and Anxiety Group (SADAG), the South African Society of Psychiatrists (SASOP), and the Life Esidimeni Family Committee.

The Ombudsman

According to Prof Makgoba, Life Esidimeni was responsible for 1 711 MCHUs. Of those, 270 were discharged to their homes, in line with the policy of deinstitutionalisation; leaving 1 441 MCHUs, most of whom were transferred

to 27 NGOs. During the arbitration, the Health Ombud revised his initial provisional number of 94 deaths as a result of the Marathon Project, bringing the total to 143 deaths (139 of which took place during the arbitration’s Terms of Reference). Of these, 29 occurred at Cullinan Care and Rehabilitation Centre (CCRC) facilities (Anchor Ward and Siyabadinga), 38 at Takalani (both complexes), 20 at Precious Angels, and 12 at Tshepong. This translates to a ratio of eight times more than the national average.

Family members and expert witnesses

Anso Thom of S27 comforts a family member: On multiple occasions, the intensity of the family testimonies brought other affected family members, legal representatives and members of the media to tears.

SECTION27 is representing 66 families whose loved ones passed away as a result of the Marathon Project. The arbitration heard heartbreaking testimony from family members – represented separately by SECTION27, The Legal Aid Clinic and Solidarity – about the state in which they found their loved ones. Rev. Joseph Maboe (80) highlighted the nature of the suffering by relating the story of his son Billy, who was so emaciated when found that he ate the plastic packet from the chips they brought him[2]. Billy passed away days later. Ntombifuthi Dladla related the harrowing story of finding her brother’s body in a decomposed state, several months later[3]. In both instances, the families – like many others – had been looking for their loved ones for months, as a result of bureaucratic bungling and lack of rational processes.

Further evidence was provided by Dr Mvuyiso Talatala, a psychiatrist and former President of the South African Society of Psychiatrists (SASOP), an umbrella body representing psychiatrists in South Africa; and Caroline Trotter, a clinical psychologist and psychoanalyst. The former spoke of numerous attempts undertaken to persuade the Department to rethink its approach, while the latter spoke of the inimical effect of the move – mainly on the families of the deceased MCHUs, but to some extent on the surviving MCHUs and their families.

The NGO representatives

The arbitration also heard from Daphney Ndhlovu, a social worker from CCRC; Dikeledi Manaka, a psychiatric nurse from CCRC; Precious Angels owner Ethel Ncube; Anchor Ward owner Dorothy Franks; and former Siyabadinga CEO Dianne Noyile. While their stories varied, marked inexperience, greed, gross neglect and ill-treatment, and lack of the requisite skills were the leitmotifs of their testimony. For instance, Ethel Ncube, whose Precious Angels facility was particularly notorious – 23 out of the 58 patients she received perished – conceded that she only had a certificate in Early Childhood Development, which is an insufficient qualification for looking after adult long-term mentally ill patients. Dorothy Franks admitted during her testimony to receiving R1 500 in monthly SASSA grant payments for each of the 27 patients. These included patients in her NGO who had long since perished there[4]. She also received R600 000, which she accepted, after her NGO was forced to close[5]. Stories abound of patients arriving with limited medicines, no medical records, in buses and cars, occupying overcrowded premises, and having to endure sharing their abode with people of the opposite sex – accentuated by the disparity between able-bodied and non-able-bodied MCHUs, a situation ripe for sexual violence in a country that already has high rates of sexual violence in general.

Gauteng Health Officials

Mr Mosenogi, Project Manager of the Marathon Project and the Director of Planning, Policy and Research at the GDoH, acknowledged his and the Department’s shortcomings, apologising profusely and admitting that they had “made mistakes[6]”.

At the time of writing, Dr. Manamela – the first of the three senior Department officials identified by the Ombud as having “their fingerprints peppered throughout the project[7]” – was due to testify. The arbitration also looked forward to hearing from other key actors. The former provincial Member of the Executive Council (MEC) for Health, Dr. Qedani Mahlangu; the suspended Head of Department, Dr. Selebano; the Minister of Health, Dr. Aaron Motsoaledi; the Premier of Gauteng province, Mr. David Makhura; and family members representing the surviving MCHUs are expected to testify before the end of the arbitration process on 26 January 2018.

In the final analysis, as powerful an individual story as Life Esidimeni is, it is indicative of a broader malaise affecting the provincial healthcare system. The Gauteng Department of Health has a massive budget deficit, and has not been able to pay major service providers. Nothing short of a full-scale turnaround strategy, in partnership with other stakeholders, is required to ensure the right to health care of public healthcare users in Gauteng.

[1] Prof. Malegapuru Makgoba (2017), ‘The Report into the Circumstances Surrounding the Deaths of Mentally Ill Patients: Gauteng Province. No Guns: 94+ Deaths and Still Counting’, Office of the Health Ombud, https://www.sahrc.org.za/home/21/files/Esidimeni%20full%20report.pdf.

[2] Jan Willem Bornman, ‘”He was hungry” – Dad’s desperate search for Life Esidimeni patient ends in tragedy’, News24, https://www.news24.com/SouthAfrica/News/he-was-hungry-dads-desperate-search-for-life-esidimeni-patient-ends-in-tragedy-20171011, 11 October 2017.

[3] Eye Witness News (EWN), ‘Esidimeni: “My brother’s body was found in advanced stage of decomposition”’, http://ewn.co.za/2017/10/24/esidimeni-my-brother-s-body-was-found-in-advanced-stage-of-decomposition, 24 October 2017.

[4] Eye Witness News (EWN), ‘NGO founder admits to using SASSA money of dead Esidimeni patients’, http://ewn.co.za/2017/10/30/ngo-founder-admits-to-using-sassa-money-of-dead-esidimeni-patients, 30 October 2017.

[5] Katherine Child, ‘”I did it for the money”, says NGO owner who raided dead patients’ accounts’, https://www.timeslive.co.za/news/south-africa/2017-10-31-i-did-it-for-money-says-ngo-owner–who-raided-dead-patients-accounts/, Times Live, 31 October 2017.

[6] Jan Willem Bornman, ‘”We made mistakes” – Life Esidimeni Project Head’, https://www.news24.com/SouthAfrica/News/we-made-mistakes-life-esidimeni-project-head-20171010, 10 October 2017.

[7] Prof. Malegapuru Makgoba (2017), ‘The Report into the Circumstances Surrounding the Deaths of Mentally Ill Patients: Gauteng Province. No Guns: 94+ Deaths and Still Counting’, Office of the Health Ombud, https://www.sahrc.org.za/home/21/files/Esidimeni%20full%20report.pdf, page 1.

Steps to consider when proving PrEP in higher-education institutions

By Thuthukile Mbatha, SECTION27

1 October is set to become a memorable day in some higher-education institutions. It marks the day in 2017 that Pre-Exposure Prophylaxis (PrEP) was first rolled out at select campus health clinics as a new, highly effective HIV-prevention method. PrEP is an ARV drug combination taken to prevent infection by HIV-negative people who are at a greater risk of acquiring HIV. The two drugs in the only registered PrEP pill in South Africa are tenofovir and emptricitabine – also known under the brandname Truvada.

The provision of PrEP in South Africa occurs through various sites, these include the national health system, demonstration projects, large scale implementation initiatives (i.e. Dreams project) and the private sector. The Department of Health (NDoH) has identified seven higher education institutions that will form part of the above sites in rolling out PrEP to young people.

These institutions are the University of Free State, the University of Venda, Rhodes University, Nelson Mandela University, the University of Zululand, the University of Limpopo and Vaal University. Not all of them began rolling out PrEP on the set date; however, all these institutions were selected because they met the criteria set by the National Department of Health to assess their state of readiness to provide primary healthcare services to students.

A number of factors must be considered when determining whether an institution is fit for PrEP roll-out. These include staffing, qualification of nurses, dispensing licences and adequate storage, to name a few. The seven institutions currently providing PrEP are already dispensing antiretroviral treatment (ART) to students living with HIV, as well as other primary healthcare services, which was another prerequisite for PrEP provision. Many institutions do not offer this service for the reasons listed above, among others.

It is important for professional nurses to have a primary healthcare qualification, and also to acquire a dispensing licence. This enables them to deliver primary healthcare services, including ART and PrEP initiation. The provision of such services is usually supported by the District Department of Health office. Only the institutions that pass the assessment are considered as PrEP roll-out sites. In the institutions listed above, extensive training of clinic health personnel and peer educators was done to ensure readiness for PrEP provision and demand creation in these institutions. However, students have not yet been properly engaged, as the roll-out was introduced at what was a very busy time for students, who were preparing for exams. These institutions aim to intensify their demand-creation campaigns in the new year.

Most institutions fund the operation of their own campus health clinics; however, the Department of Health supplies them with family-planning and STI medicines. “We had to sign a memorandum of understanding with the Department of Health in order for them to supply us with PrEP,” said a health professional at one of the institutions.

“We do not have a set target number of students to provide PrEP to – every student who comes to our clinic and requests it is given it, after doing an HIV test and establishing that the student is HIV-negative,” she added.

The seven higher-education institutions that have started rolling out PrEP are an addition to the 17 demonstration sites providing PrEP that were established from June 2016. These demonstration sites include clinics for sex workers and for men who have sex with men (MSM). South Africa’s approach to PrEP roll out is focusing on targeting these ‘key population’ groups. For groups of people considered to be key populations, see www.avert.org/professionals/hiv-social-issues/key-affected-populations

Truvada (or any other tenofovir-based regimen) as PrEP is still not included in the South African Essential Drugs List (EDL). Its inclusion in the EDL would bring down the costs of PrEP, which would make it cheaper for the National Department of Health to provide sustainably to people who need it.

It is also important to note that the state of readiness for PrEP varies from institution to institution. Institutions such as the Technical and Vocational Education Training (TVET) colleges do not have campus health clinics, therefore they rely on off-campus clinics for sexual and reproductive healthcare services. The future roll-out plans should also consider such cases. A proper audit of all campus and off-campus clinics is required, so that all the issues may be addressed before the scale-up of PrEP roll-out.

Moreover, for PrEP roll-out to be effective, the inclusion of Student Representative Councils is very important, because of the power of influence they possess. It is critical to have student involvement in the entire process, to ensure a more positive uptake.

The state of PrEP access in SA

By Thuthukile Mbatha, SECTION27

Young women between the ages of 15 and 24 years are among the key population groups with the highest risk of contracting HIV. It is estimated that about 2 000 HIV infections occur weekly in South Africa among this group. A number of HIV-prevention campaigns have been targeting the youth out of school. Young women between the ages of 15 and 24 years in higher education institutions are usually the last ones to find out about such initiatives. The assumption that young women in higher education institutions are more knowledgeable about HIV prevention – and therefore more responsible – is false. They are as vulnerable as the young women out of school.

South Africa has a number of HIV-prevention interventions that were introduced to try and curb the increasing number of HIV infections in the country. These include female and male condoms, medical male circumcision, treatment as prevention, Post-Exposure Prophylaxis (PEP), and recently, Pre-Exposure Prophylaxis (PrEP).

PrEP is not yet widely accessible in the public sector South Africa. It can only be accessed through demonstration sites, clinical research institutes, and the private sector. A month’s supply of a daily dose of PrEP costs between R300 and R550 from the private sector. However, not all medical aids will cover the costs.

PrEP is only given to HIV-negative people who self-identify as being at substantial risk of acquiring HIV. The demonstration sites have seen a very low uptake of PrEP by the key population groups. This has raised concerns about providing it to young women, as they too may have a hard time adhering to the dosage regime; in other words, they may not take it as prescribed.

Any introduction of a new prevention product or intervention meets a lot of scepticism from the targeted population to begin with. Many clinical trials have been done that have shown that a lot of interventions work; however, they all experience a low uptake at first. The female condom, for instance, has been around for several years, but has been under-used. There have been many campaigns and initiatives highlighting the importance of medical male circumcision, shown to decrease the chances of contracting HIV among men by 60 per cent; however, we are still seeing only a relatively slow increase in the number of young men being circumcised.

What have we learnt from past experiences? Are we still employing the same strategies that we applied in previous interventions? The US is one of the first countries to roll out PrEP; they also saw a low uptake at first, but it has been improving gradually.

The scepticism seen is fuelled by the failure of PrEP in some clinical trials, such as those for FEM PrEP and VOICE – both of which involved women. These studies were testing the effectiveness of oral PrEP among women at higher risk of contracting HIV. They had to be stopped early when it became clear that the studies would not be able to show whether or not the pill prevented HIV acquisition (due to low treatment adherence in the trials).

However, the main reason for this was found to be low adherence. The women in these two studies were not taking the PrEP as prescribed. This conclusion was supported by evidence of very low drug levels in their systems; another reason is that they did not perceive themselves as being at greater risk of contracting HIV. According to the World Health Organisation (WHO), a person must take the PrEP pill daily for at least seven consecutive days before they are fully protected, and then continue taking it daily.

However, subsequent trials showed that in fact, PrEP does reduce risk in women. The Partners demonstration project was done using serodiscordant heterosexual couples as subjects, and proved effective. These are couples in which one partner is HIV-positive and on treatment, and the other is HIV-negative.

Some people are concerned that providing PrEP to young women will lead to promiscuity. However, there is no evidence of this among those taking PrEP. Furthermore, PrEP itself reduces the risk of HIV very effectively, so sex on PrEP should not be seen as ‘unprotected’. Sex on PrEP is ‘barrier-free’, perhaps, but certainly not unprotected or unsafe.

There’s a need here for a paradigm shift when discussing what is and isn’t ‘safer’ sex. Unlike condoms, which protect the user from pregnancy, STIs and HIV infection, PrEP only protects against contracting HIV. Someone taking PrEP would still need to use a condom or some other form of contraception as part of a combination prevention method.

As women, we value choice. For example, the decision to use Depo-Provera over an Intra-Uterine Device (IUD) as a family planning method lies solely with the individual. Young women in higher education institutions are no exception. They too need to be afforded the opportunity to choose which HIV-prevention option is best for them.

Studies have confirmed that PrEP works if you take it. So why are we not rolling it out to all young women at substantial risk of acquiring HIV? The alarming pregnancy rates in higher education institutions indicates low use of condoms and other family planning methods.

Providing PrEP to only a select group of people is not getting us anywhere. The country continues to see rising HIV infections among young women aged between 15 and 24 years. How many more infections do we have to see before we scale it up? Let’s equip young women with access to the best HIV prevention, and with the knowledge that will enable them to make informed decisions. The inclusion of PrEP into a comprehensive sexual and reproductive health package is the first step. PrEP campaigns should go hand in hand with campaigns to promote HIV testing and other available HIV-prevention tools.

Professor Quarraisha Abdool

One in five people with HIV – or who have newly acquired HIV – lives in South Africa, despite it being home to less than 1% of the global population. The use of phylogenetics to understand the infection of HIV highlights that about 24% of young women under 25 years of age do not know their HIV status; and about 60% are acquiring HIV from male partners who are on average eight or more years older than them, i.e. in the 25 to 40 age group. The majority of men of 25 to 40 years old are unaware of their HIV status and have high viral loads, suggesting recently acquired infection and hence higher transmission rates.

Young men are acquiring HIV from already infected women 25 to 35 years of age; on average, the age difference in these cases is about a year. About 40% of men 25 to 40 years old are having sex with women younger than 25 and women older than 25 concurrently, thus perpetuating these cycles of transmission. Preventing HIV infection in young women under 25 years will require a multi-pronged approach that includes Sexual and Reproductive Health Rights services to young women; finding the missing men (who do not access health services); and treatment of women older than 25.

Preventing HIV infection in adolescent girls and young women could change the course of the epidemic in Africa, and reverse the current poor global progress in HIV prevention. Oral tenofovir, alone or in combination with emtricitabine (PrEP), is the only woman-initiated prevention technology that does not require partner knowledge or co-operation. We cannot afford not to make this prevention option available to young women.

What is PrEP?

PrEP – in full, Pre-Exposure Prophylaxis – is ARV drugs taken by HIV-negative people to protect themselves from getting HIV. The only drug combination registered as PrEP in South Africa is tenofovir and emtricitabine – widely known under the brandname Truvada.

 

Glossary of terms

Adherancerefers to taking any form of treatment as prescribed, without missing a dose

Clinical trialsrefers to research studies involving human subjects

Demonstration sites serve two purposes: 1. They enable the country to learn enough about implementation issues related to PrEP so that the transition is more feasible between research (including demonstration project research) and the wider expansion and institutionalisation entailed in scaling up implementation. 2. They enable the World Health Organisation (WHO) to extract generalisable information for the eventual development of guidelines for PrEP delivery.

Serodiscordant couplesintimate partners, regardless of gender, such that one is living with HIV and the other is HIV-negative

Substantial risk – anyone who engages in regular condom-less sex with persons of unknown HIV status or who are HIV-positive is at greater risk of contracting HIV.

 


Why I take PrEP

Nomnotho Ntsele (20) is a second-year student at the Durban University of Technology. She also volunteers as a peer educator.

When I first heard about PrEP, I thought it was meant for promiscuous people – I did not think it was for me at all. The fact that it was only available to sex workers supported my assumptions. I did not understand that anyone could be at substantial risk of contracting HIV, especially young women my age. My opinion changed when I attended the Youth Dialogue in Prevention at SECTION27 in September, where I learnt a lot more about the science of PrEP, and realized that even I am at risk of contracting HIV.

I then started reading more about it, and incorporated the information I learnt in my peer-education work. I started telling other students in my institution about this other option for HIV prevention. Following my residence visits and talks, I was approached by students in serodiscordant relationships (where one partner is HIV-positive and the other HIV-negative) asking about where to access PrEP. I remembered that at the Youth Dialogue, we were told that the Centre for the AIDS Programme of Research in South Africa (CAPRISA) and the Wits Reproductive Health & HIV Institute are currently offering it to young women who are not part of clinical trials. I therefore referred them to CAPRISA.

As I myself am in a long-distance relationship, I realised that I am also at risk of contracting HIV. Moreover, I was curious to know how this PrEP pill works. I wanted to be able to address students’ concerns about side effects and other related questions. And maybe PrEP was for me too?

My decision to take PrEP almost broke my relationship with my boyfriend. He works in the north of KwaZulu-Natal, and we do not see each other often. He felt that my decision to take PrEP was motivated by a lack of trust in him. He wanted to leave me, and also accused me of cheating on him, saying that was the reason I’d decided to take the pill. After several arguments trying to explain to him why I’d decided to take PrEP, he went to a pharmacy to do blood tests, including an HIV test. He told me that he was ‘clean’. I continued to take PrEP.

I must say, it wasn’t easy in the beginning. Taking a pill when you are not sick is not child’s play. It doesn’t help that I suffered mild side effects – nausea, and a bit of dizziness – but they all subsided within a few days. I started taking PrEP during my exam preparations, so I used to take it every day at 21h00. Now that I have finished writing, 21h00 is no longer convenient for me. I take it earlier now.

A lot of my peers at university would benefit from PrEP. Most of them are dating celebrities, or guys who have money. I imagine some of them think they are ‘exclusive’, but this would be a lie. Though if CAPRISA didn’t provide PrEP through its study clinic, and I had to pay for it, I wouldn’t have considered it. I already have competing needs – buying PrEP with my financial aid money would be the last thing on my mind. The government should provide PrEP to everyone who needs it.

 

Overdue IP reform process crucial for healthcare in South Africa

By Luvo Nelani and Zain Rizvi, SECTION27

On 17 November 2017, at the University of the Witwatersrand, Nobel Laureate

Joseph Stiglitz

Joseph Stiglitz gave a lecture to a standing-room-only crowd. The lecture, entitled Intellectual Property and Societal Welfare, came as the Department of Trade and Industry (DTI) moves forward on reforms to South Africa’s intellectual property (IP) regime. In August, the DTI published a draft intellectual-property policy that contains a number of new measures to protect public health.

One of the world’s most influential economists, Stiglitz lauded the proposed IP reforms, noting that they reflected South Africa’s developmental needs. He urged the government to set an important precedent for other countries, and resist pressure to abandon the reforms.

In 2014, the South African media revealed a $600 000 plot by the US and European pharmaceutical industry to interfere with South Africa’s IP reform process. Reportedly, US pressure then delayed the policy.

Stiglitz, who once served as the top economist in the US government, pointed out examples of US hypocrisy. The US government has previously considered using the flexibilities permitted by international law to help its own citizens when necessary, but derails the efforts of other countries to do the same. Stiglitz noted how, at the peak of the anthrax crisis in 2001, the US government threatened to issue compulsory licences to increase access to an antibiotic.

To laughter from the audience, Stiglitz warned that South Africa faced another challenge in the current US President, Donald Trump. His recommendation: “Don’t normalise him – don’t give him concessions you wouldn’t give [another] person.”

Stiglitz also forcefully dispelled the notion that IP drives innovation. He highlighted the considerable evidence that poorly designed IP regimes may in fact hamper innovation, by restricting access to knowledge. In the most memorable anecdote of the night, he recalled a conversation with his fellow Nobel Laureates – acclaimed for their breakthrough advances in science – about the role of IP. Not one of them, he said, was ever motivated by IP.

Designing an appropriate IP regime is vital, Stiglitz noted, because it could have significant consequences for public health. He described how pharmaceutical companies use a range of tactics to exploit the IP system. One example is ‘evergreening’ – a method used by manufacturers to get an additional 20 years of patent protection on existing medicines through minor innovations, effectively blocking generic versions and keeping prices high.

The Professor of Economics was later in the evening in conversation with Dr Malebakeng Forere, an academic from the University, Marumo Nkomo from the DTI, a co-author of his recently published paper Innovation, Intellectual Property and Development, Arjun Jayadev and SECTION27. Umunyana Rugege, an attorney at SECTION27, noted that many of the reforms envisaged by Stiglitz were necessary, given South Africa’s constitutional obligations to increase access to healthcare services.

Since 2011, SECTION27 has been part of a coalition calling for South Africa to reform its patent laws. Known as the ‘Fix the Patent Laws’ campaign, it has been advocating for an IP policy that prioritises public health and increases access to medicines.

On 24 October, Fix the Patent Laws launched a report that analysed patent barriers to cancer treatment access in South Africa. The report found that only seven of 24 important cancer drugs were available in the public health system. Ten medicines unavailable in the public sector – most probably due to their cost – are available in India for a fraction of the private price offered in South Africa.

The report confirmed earlier research showing that South Africa grants large numbers of secondary patents on medicines often rejected in other countries – a critical factor driving the vast price differences between the same medicines in South Africa and India.

The Stiglitz lecture and later discussion served as an important reminder of the urgency of the IP reform process. Now, the DTI must urgently finalise and implement the draft intellectual property policy. Only then will access to medicines become a reality – and not simply a legal promise – for thousands of people in South Africa.

 

Fifteen years without a wheelchair – who pays?

by Elin Hem Stenersen, Volunteer Physiotherapist, Canzibe Hospital

Zukile is a 16-year-old boy with severe cerebral palsy who I met in June 2016,

Private vehicles delivering patients to Canzibe Hospital.

through the volunteer work I was doing at a rural district hospital in the Eastern Cape. He hadn`t seen a therapist since he was a year old and was found to have a developmental delay. He had since been lost to follow-up in the system, as rehabilitation services have been almost non-existent at this hospital for many years. Zukile had spent most of his days lying on a bed in his home, his body gradually growing stiff, asymmetric and skewed, with very limited options for interaction with his surroundings.

He is an intellectually present boy trapped in a body that until recently was unable to move very much; but in September 2017, for the first time, Zukile was able to sit up in a wheelchair. Of course, he is not able to sit in the ‘perfect’ way, because of the years of lying in bed, and not having the proper positioning to stop his body from moving into fixed, asymmetrical positions. His mom now puts him into the wheelchair daily. He especially enjoys sitting outside, watching his brother work in the garden. A basic need such as sitting being met can have a profound impact on the life of a child who has been confined to a bed for so many years.

Zukile’s years of suffering could have been prevented, had he been seen sooner by an occupational therapist. Also, I was told that most of the wheelchairs required for children could not be ordered in this financial year, as there was no more money. This means that several children will not receive a wheelchair this year. Will the wheelchair that has been applied for actually fit the child when it finally arrives?

I understand that wheelchairs are costly – especially the specialised ones; but I have witnessed the crucial impact an appropriate wheelchair has on a person`s function and participation in family and community life. An appropriate wheelchair allows one to be in a supported position for eating and social interaction, and to have a chance to get outside and observe one’s surroundings. It can also prevent complications, such as contractures, pressure ulcers and aspiration pneumonia – complications that would be costly for the health system and the family, and most importantly, for the person’s general health and well-being.

As the sole therapist, on a volunteer basis, for a catchment area of 143 000 people, I am aware that my efforts are a small drop in the ocean. I know my limits, and know that I cannot see and meet all the needs there are; but I can make an impact for one person. I try to see what I can do, rather than what I cannot do. I think that focusing on hope instead of despair and frustration has helped me in many difficult times; because however hard I try, I will sometimes encounter my shortcomings – professionally, administratively, and with regard to time and capacity.

That said, the appreciation and thankfulness I get from the people in the community is heart-warming. Hardly a day goes by without me feeling privileged that I get to be part of something so meaningful and rewarding.

Working in a rural hospital has taught me to value the ‘basics’ – for example, the importance and impact of basic equipment such as a wheelchair or standing frame, and what it can do in the life of a child or adult with a physical disability. My efforts have been concentrated mostly on the elementary – positioning, with a focus on elements such as pressure care, prevention of contractures, and safe feeding for those unable to feed themselves due to sickness or disability. Applying, fitting, issuing and training users and caregivers in the use of basic equipment and assistive devices such as wheelchairs, standing frames and sidelyers has also been essential. I find appropriate positioning to be critical in creating opportunities for function and participation.

I am thankful for good support from NGOs such as Timion and Malamulele Onward, who have given valuable input and equipment to support children with cerebral palsy. Surrounding hospitals such as Zithulele, Madwaleni and Isilimela have also played an important part, giving me personal and professional support.

An issue I would like to raise is my experience with the slow governmental process when it comes to assistive devices, especially wheelchairs. “The right service at the right place at the right time” is often not the practical reality. When I see a patient in need of a wheelchair, that need is now – but the process, from application until the patient receives a wheelchair, can take between one and three years. In the last quarter of 2015 and throughout 2016, I made about 60 wheelchair applications. Between January and November 2014 there had been no wheelchair applications made, as there were no employed therapists to make them. I am not sure how and when people in need of wheelchairs would receive this service, without having therapists in the area.

In September 2017 I received the first special wheelchairs for adults – two of these had been applied for in December 2015. Before then, the only available adult wheelchairs had been the basic folding-frame wheelchairs, which are highly inappropriate in an area in which the environment features gravel roads, paths and fields, with households on steep hills and in deep valleys, at times kilometres away from a basic gravel road. In Detyana community, I visited two young men with paraplegia who are unable to get out into the community without assistance. Getting to town, the hospital or the clinic is a costly affair, as the few local taxis will not pick them up; they must book special transport, at a cost of about R200 one way.

I have attended basic and intermediate wheelchair courses at the Western Cape Rehabilitation Centre, where there is talk of ‘the appropriate wheelchair’, and the human rights of people with disabilities, and that a wheelchair needs to be the right fit with the appropriate function. For me, this has created a dilemma: should I think of cost, and continue to apply for inappropriate, basic folding-frame wheelchairs for the many? Or apply for wheelchairs that have been designed for rural areas? Yes, they cost more – but they allow increased mobility for the user, and they last longer. A basic folding-frame wheelchair can last an active wheelchair-user between six months and a year. A rural, rugged-terrain wheelchair, if looked after well, can last a user between two and three years. Power wheelchairs are even less accessible, as they are quite expensive; but if this is the appropriate wheelchair for someone in a rural area, why should they not have access to it?

I was confronted with this dilemma when I forwarded my special-wheelchair applications to the regional administrator. Do you settle for the basic model, so that more people can get a wheelchair in a shorter time? Or do you apply for the appropriate choice, knowing that fewer people will receive wheelchairs?

I cannot compromise! I will apply for the most appropriate model; because the purpose of a wheelchair is to provide support, facilitate function, and give hope to people like Zukile – who is now no longer confined to a bed, but sits proudly in the sun, part of his family’s daily life.

 

Lifesaving programme under threat

By Ntsiki Mpulo, SECTION27

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Philani Clinic – A timeline of failure

by  Ntiski Mpulo

A few meters from the entrance to Philani Clinic in Queenstown, opposite the

Peeling paint welcomes patients

gate, is a black-walled tavern. On weekdays, it’s as quiet as a church; but on weekends, music bursts out of its dark interior, cars line the street and patrons dance between them, holding beer cans and bottles.

The gates of the clinic are not secured, so anyone from the tavern is free to wander in; there is but one security guard on the premises. This poses a significant risk to the patients and nursing staff of the clinic.

“When we work on weekends, the drunks come and harass us,” says Sister Annelise Koti. “I don’t feel safe at all.”

Traditionally, the clinic opened from 08:00 till 16:30 on weekdays. Since 2013, following a directive from then-MEC for Health Sicelo Gqobana, nurses at Philani Clinic were instructed by the sub-district manager, Nonceba Bhabha to begin working weekends and public holidays.

The nurses have been forced to work on weekends without compensation, and this is taking a toll. Four nurses have resigned or been fired since this unilateral decision was handed down from the district office, leaving only eight nurses rotating shifts to cover weekends. On any given day, there should be three nurses at the clinic; because of staff shortages, only two nurses work on weekends.

The nurses have questioned the decision to operate seven days a week, and have requested written confirmation from the district manager that this was indeed mandated by the department. A memorandum from the district manager to the superintendent-general confirms that the resolution to open the clinic on weekends was never signed.

“We requested the minutes of this meeting,” explains Sister Koti. “We also asked for a policy that we should work extended hours, and we asked that we would be paid for public holidays and weekends.”

empty chairs on the
weekend while nuirses are forced to be on duty without pay

The sub-district manager did not respond to their requests. Instead, according to Sister Koti, pressure was placed on the operational manager.

“She said we must comply, and complain later. She never gave us options for contesting this thing,” says Koti.

“We asked them to give us something in writing to cover us if anything happens,” she says. “For example, there could be a medico-legal claim against one of us, and we wanted to be covered. The department of health will deny you. They will say, ‘You asked to work weekends yourselves.’”

Nurses’ pleas fall on deaf ears 

Nurses at Philani Clinic report being subjected to victimisation from the district office. They have repeatedly asked their union representatives to intervene on their behalf, with little progress in resolving the issue.

“In 2015, when we spoke with the unions, suddenly the minutes emerged,” explains Koti. “But these did not specifically refer to Philani Clinic operating for seven days a week. They said in the minutes that they were preparing for opening 24 hours. But we said, ‘You can’t prepare for 24 hours with such old infrastructure. This is an old clinic.’”

The clinic is over 100 years old, and badly maintained. Paint peels off the wall where damp is creeping up from beneath the ground. The foundation is reportedly sinking. A memorandum from the clinic committee states that there is often no water available; the clinic is equipped with a rainwater tank, which runs empty and is not refilled. The memorandum also cites insufficient equipment, including a fax machine that has been without ink for nearly five years.

The clinic has been the site of contention in the last three years, with residents forcing it to be closed on several occasions. The reasons for the shutdown are numerous; clinic committee member Luyanda Nogemane places the blame squarely on the unresponsive stance taken by the MEC for Health, Phumla Dyantyi. He claims that Dyantyi has placed politically connected individuals at the district office, instead of people who care about the community.

On 30 November 2016 the committee wrote a letter to Dyantyi, accompanied by 68 signatures. However, the matter remains unresolved.

The community shut the clinic for a day in March 2017, then again in May and

a rubbish dump right outside the clinic.

June of that year, citing the non-payment of nurses as one of the key issues. “We took our grievances to Bisho, and met with Mr Myezo,” says Koti.

The HR manager called a senior manager at the district office and was told that the nurses had been paid. He advised them to set up a memorandum of understanding between the nurses and the district, but this has not been put in place. Instead, the district office issued notices stating that the nurses were off duty without authorisation, and began withdrawing money from their salaries – amounting to as much as R1 500 – if they did not report for duty on weekends. At that time, Eastern Cape Health Department spokesperson Sizwe Kupelo is reported to have said that payments to the nurses were not completed because the nurses had not submitted claim forms – but Sister Koti tells a different story.

“They targeted us,” says Koti. “In April they withdrew the money. The HR clerk would bring ‘leave without pay’ forms, which we refused to sign.”

Staff morale at the clinic is at an all-time low. Those who remain are burnt out. Between the three nurses on duty, they serve approximately 200 people per day; and on the weekends, when there are only two nurses on duty, there is no clerk to receive patients, so this task must also be performed by the nurses.

“We try not to let our issues affect the clients,” explains Koti. “Although clinic hours are 08:00 to 16:30, it is rare for us to leave at that time. We stay till after 6pm sometimes. We often don’t have time for lunch – forget about tea breaks.

“We want to be treated with dignity,” says Koti. “We have families too.”

 

 

Let’s make AIDS councils work

by Vuyokazi Gonyela, SECTION27

Provincial AIDS Councils (PACs) should be chaired by Premiers, and District AIDS Councils (DACs) by mayors. All councils should meet at least once a quarter – but many do not. If your DAC or PAC is not meeting, write to your Premier or mayor to urge them to organise and chair these meetings. Once we are at the meetings, it is up to us to use them to ensure we get an effective, non-corrupt response to HIV, TB and STIs in our provinces or districts.

Send an e-mail to tell us about your PAC or DAC experiences.

Seven questions to ask at your PAC

Not sure what to say at Provincial AIDS Council meetings? Here are some ideas for questions you could ask

1.    South Africa’s new NSP envisages an ambitious new HIV Counselling and Testing Campaign. When are we starting to implement this HCT campaign in our province.

Here is the relevant part of the NSP, if you want to quote it in the meeting:

“A new national HIV testing effort to find the remaining people who don’t know their status and those who become newly infected will be strategically focused on optimising testing yield. Testing will be decentralised, and expanded testing services will be delivered in and outside health facilities, e.g. in workplaces and community settings. Specific efforts will be made to close testing gaps for men, children, adolescents, young people, key and vulnerable populations, and other groups who are not currently accessing HIV testing at sufficient levels.

“The importance of at least annual HIV testing will be emphasised, especially for young people. Self-screening will be rolled out as part of the strategy to expand HIV testing, and to close testing gaps. A major push will be made to ensure 100% birth-testing of newborns exposed to HIV, and of provider-initiated counselling of mothers and testing for all children up to 18 months to identify those who have acquired HIV through breastfeeding. All children of HIV-positive parents will be tested for HIV. Every person tested for HIV will also be screened for other STIs, as well as for TB.”

2.  The new NSP says that the tracing of TB contacts must be prioritised; and that it envisages intensified TB case-finding in key populations, “including household contacts of people with TB disease, healthcare workers, inmates, and people living in informal settlements.” What are we doing to step up contact tracing and active case-finding in our province?

Here is the relevant part of the NSP, if you want to quote it in the meeting:

“Every person who is tested for HIV must also be screened for TB, as must all TB contacts. Tracing of TB contacts is especially urgent for DR-TB, and will be prioritised. This Plan envisages intensified TB case-finding in key populations, including household contacts of people with TB disease, healthcare workers, inmates, and people living in informal settlements. People with diabetes and every child contact of an adult TB patient will be screened. All patients suspected to have TB will receive appropriate diagnostics, including GeneXpert MTB/RIF as an initial diagnostic, and rapid confirmation of results.”

3.    The NSP sets important national targets. What are our provincial targets relating to reducing new HIV infections and reducing new cases of TB?

Setting provincial targets is essential if we wish to create greater accountability in our province. It also helps focus and direct the work that needs to happen in the province. Yet most provinces do not have targets. Getting your province to set ambitious and concrete targets will be an important achievement.

Some key national targets in the NSP for which we require provincial equivalents are as follows:

  • Reduce new HIV infections to under 100 000 per year by 2022.
  • Reduce TB incidence by at least 30%, from 834/100 000 population in 2015 to fewer than 584/100 000 by 2022.
  • 10 million people should receive an HIV test every year.

4.   Can the Department of Health please provide us with detailed, up-to-date statistics for our province on our progress towards the 90-90-90 targets for HIV and the 90-90-90 targets for TB?

The 90-90-90 targets for HIV and TB are at the centre of the NSP. To create local accountability, and to identify areas that need work, we should track progress against these targets within our provinces, not only at national level. As members of AIDS councils, you have a right to this information.

For HIV, the 90-90-90 targets for provinces are:

  • By 2020, 90% of all people in the province living with HIV will know their HIV status.
  • By 2020, 90% of all people in the province with diagnosed HIV infection will receive sustained antiretroviral therapy.
  • By 2020, 90% of all people in the province receiving antiretroviral therapy will have viral suppression.

For TB, the 90-90-90 targets for provinces are:

  • By 2020, 90% of vulnerable groups in the province will have been screened for TB.
  • By 2020, 90% of people in the province with TB will have been diagnosed and started on treatment.
  • By 2020, 90% of people in the province on treatment will have been successfully treated.

5. What is the status of our provincial implementation plan (PIP)?

The PIPs may sound boring, but they are the plans that must make the goals and broad strategies of the NSP a reality in the communities across our provinces. By engaging in these plans, we can help improve the HIV and TB response in our provinces. Developing these plans is some of the most important work that AIDS councils will do. Once they have been developed, adapting these plans over time and monitoring their implementation will be just as important. In short, if you are on a PAC, part of your responsibility is to know exactly what is going on with your PIP.

In addition to the above question, here are some follow-up questions you could ask:

  • Is the implementation of the PIP in our province fully costed?
  • Where is the money going to come from to implement our PIP?
  • Do we have the human resources to implement our PIP?

6.  Can the Department of Health please provide us with detailed statistics on the best- and worst-performing districts in our province?

‘Best’ and ‘worst’ can be measured in different ways. For that reason, it might be worth asking for more specific indicators of how districts are performing. Here are some examples:

  • What are the viral load coverage rates for each of the districts in our province? (Viral load coverage tells you whether all people on HIV treatment are getting viral load tests, as they are supposed to. If a district has a low viral load coverage rate, then you know there is a problem in that district, because people are not getting the tests that they are supposed to get.)
  • What are the districts in our province with the most medicine stock-outs?
  • What are the TB treatment success rates for each of the districts in our province?

Six questions to ask at your DAC

Not sure what to say at District AIDS Council meetings? Here are some ideas for questions you could ask.

1. South Africa’s new NSP envisages an ambitious new HIV Counselling and Testing Campaign. When are we starting to implement this HCT campaign in our district?

Here is the relevant part of the NSP, if you want to quote it in the meeting:

“A new national HIV testing effort to find the remaining people who don’t know their status and those who become newly infected will be strategically focused on optimising testing yield. Testing will be decentralised, and expanded testing services will be delivered in and outside health facilities, e.g. in workplaces and community settings. Specific efforts will be made to close testing gaps for men, children, adolescents, young people, key and vulnerable populations, and other groups who are not currently accessing HIV testing at sufficient levels.

“The importance of at least annual HIV testing will be emphasised, especially for young people. Self-screening will be rolled out as part of the strategy to expand HIV testing, and to close testing gaps. A major push will be made to ensure 100% birth-testing of newborns exposed to HIV, and of provider-initiated counselling of mothers and testing for all children up to 18 months, to identify those who have acquired HIV through breastfeeding. All children of HIV-positive parents will be tested for HIV. Every person tested for HIV will also be screened for other STIs, as well as for TB.”

2.  The new NSP says that the tracing of TB contacts must be prioritised; it envisages intensified TB case-finding in key populations, “including household contacts of people with TB disease, healthcare workers, inmates, and people living in informal settlements.” What are we doing to step up contact tracing and active case-finding in our province?

Here is the relevant part of the NSP, if you want to quote it in the meeting:

“Every person who is tested for HIV must also be screened for TB, as must all TB contacts. Tracing of TB contacts is especially urgent for DR-TB, and will be prioritised. This Plan envisages intensified TB case-finding in key populations, including household contacts of people with TB disease, healthcare workers, inmates, and people living in informal settlements. People with diabetes and every child contact of an adult TB patient will be screened. All patients suspected to have TB will receive appropriate diagnostics, including GeneXpert MTB/RIF as an initial diagnostic, and rapid confirmation of results.”

3.  The NSP sets important national targets. What are our district targets relating to reducing new HIV infections and reducing new cases of TB?

Setting district and provincial targets is essential if we wish to create greater accountability in our districts and provinces. It also helps focus and direct the work that needs to happen at district level. Yet most districts do not have targets. Getting your district to set ambitious and concrete targets will be an important achievement.

Some key national targets in the NSP for which we require district and provincial equivalents are as follows:

  • Reduce new HIV infections to under 100 000 per year by 2022.
  • Reduce TB incidence by at least 30%, from 834/100 000 population in 2015 to fewer than 584/100 000 by 2022.
  • 10 million people should receive an HIV test every year.

4.  Can the Department of Health please provide us with detailed, up-to-date statistics on our progress towards the 90-90-90 targets for HIV and the 90-90-90 targets for TB in our district?

The 90-90-90 targets for HIV and TB are at the centre of the NSP. To create local accountability, and to identify areas that need work, we must track progress against these targets within our districts and provinces, and not only at national level. As members of AIDS councils, you have a right to this information.

For HIV, the 90-90-90 targets for districts are:

  • By 2020, 90% of all people in the district living with HIV will know their HIV status.
  • By 2020, 90% of all people in the district with diagnosed HIV infection will receive sustained antiretroviral therapy.
  • By 2020, 90% of all people in the district receiving antiretroviral therapy will have viral suppression.

For TB, the 90-90-90 targets for districts are:

  • By 2020, 90% of vulnerable groups in the district will have been screened for TB.
  • By 2020, 90% of people in the district with TB will have been diagnosed and started on treatment.
  • By 2020, 90% of people in the district on treatment will have been successfully treated.

5.  What is the status of our provincial implementation plan (PIP)? And if we have a District Implementation Plan (DIP), what is the status of that?

The PIPs and DIPs may sound boring, but they are the plans that must make the goals and broad strategies of the NSP a reality in our communities. By engaging in these plans, we can help improve the HIV and TB response. Developing these plans is some of the most important work that AIDS councils will do. Once they have been developed, adapting these plans over time and monitoring their implementation will be just as important. In short, if you are on a DAC or PAC, part of your responsibility is to know exactly what is going on with your DIP and/or PIP.

In addition to the above question, here are some follow-up questions you could ask:

  • Is the implementation of the PIP and DIP in our district fully costed?
  • Where is the money going to come from to implement our PIP (or DIP)?
  • Do we have the human resources to implement the PIP (Or DIP)?

6.  Can the Department of Health please provide us with detailed statistics on the best- and worst-performing clinics in our district?

‘Best’ and ‘worst’ can be measured in different ways. For that reason, it might be worth asking for more specific indicators of how clinics are performing. Here are some examples :

  • What are the five clinics in our district with the lowest viral load coverage rate? (Viral load coverage tells you whether all people on HIV treatment are getting viral load tests, as they are supposed to. If a clinic has a low viral load coverage rate, then you know there is a problem at that clinic, because people are not getting the tests that they are supposed to get.)
  • What are the five clinics in our district with the most medicine stock-outs?
  • What are the five clinics in our district with the worst TB treatment success rates?

 

Funding by Faith

By Ufrieda Ho, Spotlight

Even for a woman of faith, breaking bad news is never an easy thing to do.

When Sister Krystyna Ciarcińska called a meeting for the 30 caregivers of the

Sporting their blue golf shirts are some of the Koinonia Orphans caregivers who have
changed the lives of at least 900 children in 13 villages in Uzimkhulu. From left are
Ntombovuyo Langa, Bongekile Dlamini and Gloria Tsezi. In front is Lodiwe Ndzimande.

Koinoina Orphans Project in rural Umzimkhulu, KwaZulu-Natal at the end of winter this year, she did so with a heavy heart.

“I was so sad and I didn’t know what I was going to say to them,” she says, remembering that day. In her hand was the letter from the South African Catholics Bishops Conferences (SACBC) notifying the Lourdes Mission, where Sr Krystyna is a consecrated sister of the Koinonia John the Baptist community, that funding for the two-year-old Koinonia Orphans Project she headed up, would run out by the end of September.

“Sometimes when we call special meetings it’s because we have been given unexpected donations of blankets, mattresses or something, so the caregivers were very excited. But instead I had bad news to tell them; it was terrible,” she says.

That official funding has dried up and it has been a blow. But the Lourdes Mission has fought to continue with the project even though for the past few months paying the R35 000 a month bill it costs to run the project has never been a certainty

“Prayers and providence,” says the irrepressible Sr Krystyna with a smile, at how donations have materialised. Still, she’s only too aware that the long-term sustainability of the project is in jeopardy.

The Koinonia Orphans Project has over the last two years become a vital lifeline for over 900 children registered in the project and their families from the 13 villages that surround the mission station. The 30 caregivers who receive a stipend for their service also rely heavily on this source of income.

The project that started in October 2015 focuses on supporting children in vulnerable households, many are AIDS orphans. It’s part of the Catholic Church’s response to HIV/ Aids that was officially started in the country in 2000.

Withdrawal of PEPFAR funds

The SACBC has been a beneficiary of the United States’ Pepfar (President’s Emergency Plan for Aids Relief) funding since the fund came into being officially in 2004. The shift in foreign policy under the Trump administration has however, sparked concern for critical long-term financial support from Pepfar.

According to Mrudula Smithson, director of the SACBC AIDS Office, Pepfar funding to the SACBC has been reduced by around half for the next financial year. While Smithson says they don’t disclose the actual amounts, she says their projects have been hit badly.

“We receive three streams of Pepfar funding for our projects that all focus on

The home headed by Christina
Mtolo (far right), her daughter Gloria
Mbhele (far left) and with them
Gloria’s children Anelisiwe Mbhele,
their friend Thembalethu Tshabalala,
and Gloria’s other child Senelweko.
They are one of the families that are
part of Koinonia Orphans Project.

orphaned and vulnerable children – all three have been severely affected while our target of the number of children we want to reach has increased significantly,” she says.

Smithson adds that the SACBC Aids Office programmes currently reaches 45 000 children. “We are very concerned that the small projects around the country especially now have to find their own way to fund their programmes or they’ll have to shut them down,” she says.

At this point, Pepfar will continue to fund projects in South Africa till September next year. In May, the US Embassy in Pretoria announced that Pepfar would support South Africa’s HIV/AIDS and TB programmes till September next year and would support the National Strategic Plan (NSP)’s 2017-2022 programmes for HIV, TB and Sexually Transmitted Infections. An additional U$51-million in funding was approved to support South Africa’s voluntary male medical circumcision programme. Since 2004, Pepfar has invested over U$5.6-billion in South Africa.

A million realities away from decisions made in boardrooms in capital cities, Koinonia Orphans Project caregivers must still get on with visiting families under their care.

Giving care

With basic training in nutrition, hygiene and counselling, caregivers help make sure people adhere to their medicine regimes and have food to eat, often they share from their own meagre provisions. They cook and clean, fix homesteads, and help plant food gardens. They also help register children for birth certificates and identity documents. They do school monitoring, help with homework and ensure that children have school uniforms, without which they’re not allowed to attend school.

Another prong of the Koinonia Orphans Project has been twice yearly voluntary HIV/AIDS testing and counselling days targeted at children but also reaching adults who live in communities surrounding the Lourdes Mission.

In their last testing campaign held in August they were able to test 400 people, working in collaboration with local clinics that provided the pin-prick test kits.

“Knowing their status early is important so that they can start treatment early,” says Gloria Tsezi, one of the Koinonia caregivers in the village of Moyeni.

Tsezi visit homes where the burdens facing families is heavy. At the home of Busisiwe Khambula and her three children, Tsezi looks on as Khambula cradles in her lap the head of her eldest of three children, Olwethu (18). He is severely disabled and often suffers from uncontrollable fits.

“Sometimes the clinic tells me there are no medicines for his fits, then I have to go to Rietvlei Hospital. Sometimes I just lie him down flat and wait till the fit is finished – it hurts my heart too much,” Khambula says. Transport to get to the hospital costs her R200.

Tsezi and Khambula also tell of Khambula’s allegedly abusive relationship with the mostly absent father of her children. Abuse is another load that women in this remote district of KZN must carry.

Tsezi says: “He threw away all her pots and burnt all the children’s documents so I had to help get new identity documents for the children.

“I come to look after Olwethu and the two smaller children, Jabulile and Simthanda, when Busisiwe must go out. I give Olwethu soft porridge and milk, it’s the only thing he can eat – he likes it,” she says, proudly wearing the sky-blue Koinonia golf shirts that have become the uniform of the projects’ caregivers.

A difficult life

A few villages away in Riverside, a mother tells of her trials of living with HIV and the devastation of some years ago when she found out that one of her children, an 11-year-old girl, is also HIV positive. The child has also suffered from TB, she says.

They have a vegetable garden but sometimes there isn’t enough food for a square meal – essential for those taking ARVs. Riverside was also without water for nine months this year.

In another village Tryphina Mkalane is grieving for her daughter who died just months ago. It’s added two more grandchildren under her care, bringing to five the number of young ones who live in her rondavel.

One of the children turns 18 soon. Mkalane worries she will not find a paying job. At the same time it will mean she’ll lose a social grant that goes towards paying for groceries, transport and school supplies.

“One of my other daughters is in Durban. She’s been trying to find a job for over a year now. We send her the grant money so she can pay rent in Durban,” says Mkalane, speaking through her caregiver, Lucinda Dlamini.

For Sr Krystyna, who grew up in Poland and arrived in South Africa from Spain first in 2013 then permanently since April 2014, helping to lighten people’s challenges bought on by the collision of multiple miseries has become part of her life’s work.

Every sad story breaks her heart, but not her faith. Her childhood fascination with Africa has turned into the place she now calls home. In return the community has embraced her as their own, there are even little girls bearing her name – spelt the Polish way – the mothers and the nun say with a laugh.

It was in 2010 that the arduous process of rebuilding the Lourdes Mission and their cathedral first started under invitation by the local bishop to Father Michal Wojciechowski, who now heads the Koinonia John the Baptist community in Lourdes.

The mission station and cathedral date back to 1895. They were built by Trappist monks but had been given over to neglect and abandon for decades. Brick by brick the community has worked to rebuild the twin-towered cathedral and the living quarters for the handful of nuns and brothers who keep the mission alive.

There’s still a mountain of work to be done, like restoring a burnt out convent and an adjoining boarding school.

Every day there are new needs that present at the Lourdes Mission’s doors. The sisters, brothers and Father Michal open their arms to it all: a woman and her children who have gone three days without a meal; the shattering news of a teenage suicide; someone needing help with homework or just seeking out comfort and a prayer – and of course, the on-going question of how to fund the Koinonia Orphans Project for the the long-term.

But the cathedral is a beacon of joy and spiritual light. It’s packed to capacity for Mass each Sunday, the mission’s food garden and orchards now thrive as a symbol of new hope. Funding is sorely needed here; faith in action though, grows with abundance.

BURDEN OF THE GENERATIONS

When the rain sweeps in over the hills of Umzimkhulu and the winds follow, the rolling hills turn to mud and muck. Mist and chill wrap around rondavels with little forgiveness.

Gogo Alexsia Njilo (95) calls this remote part of southern KwaZulu-Natal

95-year old Alexsia Njilo can barely look after herself and says here two teenage grandsons don’t give her much assistance.

home. On a soggy, cold afternoon, the nonagenarian tends a steel teapot warmed on burning firewood in the centre of her rondavel. In-between she shoos away chickens pecking on the dung-mud floor, also seeking the mercy of warmth. Njilo lives with two teenage grandsons here that she mumbles are no good and no help to her. They come and go as they please, she says.

“I won’t cook tonight because they will just eat all my food,” she says in Zulu, I will drink tea for my dinner, she says.

So much adds to Njilo’s hardships: maladies of old age; few opportunities or hope for young people in this remote village and little infrastructure and resources to make life easier for a family living in poverty in the Harry Gwala district. The district has been in the news of late for political killings, cases of corruption and municipal mismanagement, also lack of infrastructure and pressing needs for basic services.

Njilo’s is one of the vulnerable households under the care of the Koinonia Orphans Project, run by the small community of consecrated sisters and brothers from the Catholic Church’s Koinonia John the Baptist community, based at the Lourdes Mission in a neighbouring village.

The 95-year-old’s Koinonia caregiver is the newest and youngest in the project: 19-year-old Thembile Dzanibe, who joined them in the middle of November.

Dzanibe finished her matric in 2016 and had been looking for work ever since.

“Many young people are in the same situation as me. Here in the rural areas there are no jobs or opportunities, nobody has work, they just have to sit at home. I applied for bursaries to study but I wasn’t accepted,” she says.

Added to this she says there’s a growing drug problem and a deep-rooted crisis of alcohol abuse that often leads to violence and criminality. Teenage pregnancy is also common and HIV/AIDS continue to ravage the community.

As a born-free, Dzanibe had hopes of studying to become a teacher. She says: “Actually my dream is to open a crèche, I love children.”

But both dreams have stalled.

“I’m happy to be a caregiver this year, I think I will be able to look after Gogo and the two boys, even though I don’t know if they’ll listen to me,” she says, sitting inside Njilo’s hut.

Gogo’s face does light up to greet her young caregiver but she’s also lost to tiredness and her own thoughts.

For Bertha Mia, the co-ordinator of the Koinonia caregivers, the role that Dzanibe has committed to is a big one.

“You need patience to do this job; you also need to treat every person with dignity. You have to work hard and be honest,” says Mia.

Dzanibe nods as Mia passes on this advice.

Community caregivers take on an intimate, sometimes almost impossible task. They’re a pillar that props up the most vulnerable in society, yet as in the case of the Koinonia Orphans Project they’re also first to fall when funding dries up.