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.

 

Deepening crisis at Pelonomi hospital

Last week whistleblowers told Spotlight that patients with broken legs, arms and other serious orthopaedic conditions are being sent home in the  Free State  because the buckling health system is simply unable to cope with the numbers. Now the Free State Department of Health has responded insisting that orthopaedic services and surgery in the province is not collapsing. The Department did however admit to a long waiting list at Pelonomi hospital.

“The orthopaedic backlog for today stands at 72 hospitalised patients and 110 patients outside the hospital. On average 1 200 patients are admitted per month,” says Mondli Mvambi, Spokesperson and Head of Communications of the Free State Department of Health.

The hospital does not send anybody home despite our lack of resources at times,” claims Mvambi. “Patients are being sent to Botshabelo hospital on Mondays to the orthopaedic clinic and Tuesdays for surgical interventions. There is currently less than seventy patients awaiting elective surgery at Pelonomi, emergency procedures are done on the emergency list on the day of admission or within a few days of admission.

A healthcare worker whistleblower however told Spotlight that the Orthopaedic  department does in fact send patients home without surgery. “On admission it was decided that they will undergo surgery.  But due to the long waiting lists for emergency cases it is then decided to treat conservatively,” says the whistleblower, who also questioned how one could allow a waiting list of 70 people. The whistleblower also said that outreach activities are generally not nearly as good as claimed. Photographs sent to Spotlight this week show overcrowded waiting rooms in the hospital with patients sitting on chairs and lying on the floor.

No airconditioning in theatre

In addition to the long waiting list for orthopaedic procedures, Pelonomi appears to be facing a number of additional crises. “Cancer patients who need biopsies are put on a waiting list and reconstructive cases are warned that they may wait up to 5 years for their arthroplasty work,” a well-placed source told Spotlight.

Our sources (who have asked not to be identified) claim that there is a general pattern of poor maintenance and of sub-standard equipment being acquired. This is potentially most harmful in theatre, where sub-standard operating tables and theatre lighting have allegedly been acquired and where new sub-standard and incomplete anaesthetic machines remain unused.

“Chances are excellent that the emergency activities will be completely stopped at Pelonomi due to the air conditioning not working,” a source told Spotlight. “Theatre temperature during day time is 30 degrees and it is unlikely that they will be able to repair it within days.   The anaesthetic risks for patients with overheating during anaesthesia is high and sepsis rates are also then very high.”

A critically important hospital

That emergency activities at Pelonomi are of critical importance is not disputed by the Department.

“Pelonomi is a Tertiary Hospital receiving referrals from four Regional hospitals in the Free State,” says Mvambi. “We also receive patients from Lesotho and neighbouring provinces as we are a province at the heart of South Africa and many of the national roads criss-cross our province thus making us vulnerable to many trauma cases. Pelonomi Hospital is also a Trauma Centre for the entire FS Province, also receiving trauma patients from the N1, N3, N5, N6 and N8 including many regional roads. Kimberly and Lesotho do not have a Spinal Surgeon therefore Lesotho and Kimberly patients are referred to Pelonomi. There is a high demand on the system during weekends, month end, holidays and when there are festivals in neighbouring towns as well as casual road users who are passing by. However there are systems that are put into place to manage the challenges, for example we are expanding orthopaedic services to Botshabelo and we also do outreach to regional hospitals in the Province, as well as conducting Blitz on Tuesdays, weekends and public holidays with the help of additional capacity.”

According to Mvambi there are seven specialists and eighteen doctors rotating between Universitas Academic Hospital and Pelonomi as the two function as a hospital complex.

“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,” says Mvambi. “We also conduct Outreach to Regional hospitals in the province and the procurement of agency services. The hospital is looking forward to expanding services to Xhariep District and an increased utilisation of the newly opened state of the art Albert Nzula hospital.”

 

 

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.

 

Two steps forward, three steps back – a tale of the Eastern Cape clinics

By Ntsiki Mpulo, SECTION27

Hamburg Clinic

The shell of the former Hamburg Clinic stands atop a hill overlooking the

The collapsing shell of what used to be Hamburg
Clinic

Keiskamma River. The 30-year-old structure fell down in 2012, as a result of strong winds. In 2017, after five long years, the Eastern Cape Health Department – in partnership with the Coega Development Corporation (CDC) – began the construction of a new clinic. According to the department’s spokesperson, the project is due to be completed in a year’s time.

On the day we visited, the site was abandoned. Our source tells us that construction – which began in July 2017 – has been slow and erratic. When it rains, workers do not come to work. This does not bode well. It is unlikely that the clinic will be completed in the timeframes promised by the department. In the meantime, Hamburg Clinic is housed in the Keiskamma Trust building.

Philani Clinic in Canzibe

The gleaming white floors and the shiny new chairs mask the reality faced by

A hopeful Philani Clinic nurse placed a sign
where the ambulance must park – if and when it ever arrives.

the healthcare users of Philani Clinic, near Ntshilini village. The clinic was overhauled and rebuilt following the publishing of the Death and Dying report in 2013, when Health Minister Aaron Motsoaledi was alerted to among others the dire circumstances under which nurses operated in the clinic.

Asbestos heaters have been removed. New sluice facilities have been built. The clinic has a pharmacy storage unit, replete with chronic medication. But all is not well.

The nurses are forced to use old equipment, which was not replaced during the refurbishment. The newly built staff quarters have no furniture. The clinic, which serves communities from Ntshilini all the way to Canzibe, is staffed by two professional nurses and a couple of community health workers, who are not employed by the department. There is no doctor rostered to visit the clinic.

In a recent case in which a two-year-old was burnt by hot water, the sister on duty did what she could to clean the wound, but had to refer the child to Canzibe Hospital, some 40 kilometres away. This is a daunting journey on any day, because the roads are so poor; and as there is no ambulance in the area, the child’s parents were forced to hire a car, at exorbitant cost.

The enterprising Sister Sylvia, who has worked at the clinic for over 11 years, has placed a sign where the ambulance ought to park – if and when it ever arrives.

Village Clinic

Two years after Eastern Cape Health Crisis Action Coalition (ECHCAC) visited

The Village Clinic, under construction since
2013 – delays have been caused by contractor issues.

the construction proposed for the Village Clinic in Lusikisiki in the Eastern Cape, the clinic is still not open.

This clinic has a long and complicated history. Since 2005, it had been housed in a building formerly occupied by AngloGold Ashanti; which was ideal, as it was located in the centre of town, and had private consultation rooms, a waiting area, bathrooms and a pharmacy.

Bizarrely, in December 2012 the Eastern Cape Health Department (ECDoH) closed the clinic down, and relocated it to a site just outside of town. From then on, two porous tents and a mobile home would serve as the clinic for the people of Lusikisiki.

The Treatment Action Campaign (TAC) and ECHCAC embarked on a series of protests, and enlisted the help of SECTION27 to begin a process of litigation. The TAC filed a lawsuit against the ECDoH on 29 May 2013, in which it named the Minister of Health as respondent. The Minister, on seeing pictures of the tents that comprised the clinic, tabled a plan to put up a temporary structure by July 2013, and to build a large, permanent clinic in the following eight to 12 months.

Since the temporary structure was erected in 2013, the people of Lusikisiki have been without a building for their clinic. They wait in the rain and the cold for their medicines, which are housed in a trailer with no refrigeration; and there are no private consultation rooms. Contractor issues have resulted in endless delays in the construction of the new clinic.

In August 2017, the contractor declared itself ready to hand the clinic over;  however, the Department of Health deemed it incomplete according to its standards. At the time of writing, it was unclear when the clinic would finally be ready to open.

 

Looking back to look forward: the next 21 years of the Constitution

By Mark Heywood

On 10 December 2017 the Constitution Hill Trust marked the 21 years since the signing of our Constitution by holding a lekgotla in the foyer of the Constitutional Court. Present were a rare combination of judges, former judges, lawyers (past present and future), politicians, activists and school children. On a stormy Highveld afternoon, in the shadow of the Johannesburg version of the Arch for the Arch, they debated the achievements and failings of the Constitution, as well as our relationship with it. Below is an edited version of comments made by Mark Heywood, the Director of SECTION27.

December 10th 2017 marks the 21st anniversary of the signing by Nelson Mandela of our Constitution. Today we come of age as a constitutional democracy, and I am grateful to the organisers of this event for creating an opportunity to reflect on the Constitution in a dignified way and in this most appropriate setting. It is a privilege to be part of a panel that includes living heroes like Justice Albie Sachs, whose passion and vision helped shape the Constitution, and Shaeera Kalla, a respected student leader from FeesMustFall, a movement whose demands will test whether the Constitution can live up to its promise “to free the potential of each person.”

My few words today are drawn from my experience as a social justice activist (once upon a time we called ourselves “socialists”) over the last 20 years. They will reflect on two themes that have struck me from my experience of using the Constitution. These are:

  1. The sense of dignity and power that is felt by people who are poor and oppressed when they use the Constitution to assert rights;
  2. The power that is latent within the Constitution and the constitutional scheme to bring about far-reaching change in South Africa; a power we must still recognize and use.

To illustrate what I mean I will talk mainly about the litigation brought by the Treatment Action Campaign (TAC), 17 years ago, to compel the government to provide access to anti-retroviral medicines to prevent mother to child HIV transmission.

I believe that this case, and the campaign that triggered it, is one of the greatest vindications of the Constitution – it is tangible and tested (as opposed to bookish and theorised) evidence of the Constitution’s power to alter lives for the better.

But before I talk about the ‘macro’-power of the Constitution I want to talk about the impact I have observed that it can have on individuals.

THE RESTORATION OF DIGNITY

I came to the Constitution through the HIV/AIDS epidemic.

In the early 1990s, at the very same time as the Constitution’s drafters were fashioning a template for a post-apartheid society based on equality and dignity, HIV had another plan entirely. Silently and unacknowledged this virus was rapidly accelerating its progress through vulnerable and poor people in our country – the same people who had the most to gain from freedom – and laying new foundations for disease, discrimination and death.

In the 1990s and most of the 2000s, before the advent of anti-retroviral treatment, HIV used to announce its presence in the way it stripped people of their dignity. This happened on three levels:

  • Firstly, there was the Internal stigma and loss of self-esteem – people fell into the trap of believing that there was something shameful and aberrant about being infected with HIV. HIV was felt as a stigma, a marker, in the purest sense of the word;
  • Then there was the undignifying experience of prolonged and debilitating ill-health as HIV was left untreated for most people;
  • And finally there was the unfair discrimination, often by big companies.

However, as we began to use the Constitution as a legal counter to acts of discrimination I witnessed how invoking the Constitution often brought about a restoration of dignity for a person. I first witnessed this in case we called “A vs SAA”, which eventually reached the Constitutional Court in 2000 and became known as Hoffman v SAA.

‘A’ was a young black man, flush with our new found freedom. Yet when I first met him, he was broken. His dreams of freedom had been dashed by a senior manager at SAA who had heartlessly stamped “HIV +” — and thus considered unfit for employment — on his otherwise successful application to be a cabin attendant. But as ‘A’ fought back and learnt about his rights under the Constitution, learnt that avenues existed especially for people like him – victims of the abuse of power – I saw the restoration of self-belief.

Eventually the Constitutional Court declared that condemning someone to “economic death” because they had HIV was unlawful. Over the following years tens of thousands more people benefitted from this prohibition on HIV related discrimination.

For the first time the court talked about Ubuntu.

But my most abiding memory of this process of restoration is of one of the activists in the TAC case, Sarah Hlalele.

My first meeting with Sarah was at her uncle’s small matchbox house in Sharpeville. I had been told her sad story by a member of a support group and drove out to enlist her to the TAC case. When I was ushered into the house I found her sobbing, huddled against the wall in a corner of a room, eating out of a pot (because the family would not allow her to use the normal kitchen utensils). Sarah was afraid of herself and the people around her.

Over the next year though Sarah joined TAC and many other young women with HIV to assert their constitutional rights on marches, in meetings and in the courts. By December 2001, when we won our first judgment, she was a different woman: dressed smartly, in her “HIV positive T-shirt”, openly living with HIV. Talking to the media.

Proud.

Unbowed.

I have seen mobilization for the rights in the constitutional and litigation (in that order) take many, many other people along the same journey. I have seen how the Constitution, without fail, once explained, invests oppressed people with a feeling of dignity, autonomy and then agency.

I have seen this in transformation in thousands of people with HIV; amongst people with disabilities in the far corners of the Umkhanyakude district in KZN; in the mother and father of Michael Komape; and most recently in the bereaved families of the victims of the Life Esidimeni disaster.

That is why I insist that one of the greatest powers of the Constitution is the sense of dignity and worth it should bestow on “everyone” –  that poverty and inequality is not our lot.

We have rights.

We are entitled to something better.

THE POWER LATENT WITHIN THE CONSTITUTION

I believe the Constitution gives us each power. If we do not use that power it is not the fault of the Constitution, but our own fault.

For me, the clearest example that there is a causal relationship between the tangible advance of rights and a mobilization to demand rights that culminates in litigation remains the TAC case.

The facts speak for themselves: when we commenced litigation in August 2001 25% of mothers with HIV gave birth to HIV+ children; 70,000 infants died of AIDS every year. Cruel preventable deaths.

16 years later, as a result of a nationwide roll-out of anti-retroviral medicines ordered by the Court and enforced by TAC on the ground, less than 2% of pregnancies of HIV positive mums lead to infection of the baby and there are less that 5,000 deaths of infants per annum!

But the TAC case was not just about the many thousands of lives saved. It created immeasurable hope. The momentum garnered by that started mobilisation led to a huge infusion of resources into the health system. Although TAC never had need to come back to the Constitutional Court on the question of access to treatment it used its victory to inspire and animate every campaign it has conducted since then.

Every TAC activist is a constitutional rights activist.

Today access to treatment for HIV is the only issue in our country where social justice and equality can be said to exist; the over four million people receiving ARVs and care through the public health system can attest to that.

In this regard, I must say a special thank you to Albie Sachs and the judges of the Constitutional Court for your principle and bravery in that case. As is happening again now, as you are compelled to enunciate and protect constitutional principles related to the NPA and other crucial organs of state, you were under extreme political pressure and sometimes threat, but you did the right thing.

THE FUTURE OF THE CONSTITUTION

I am bound, unfortunately, to end on a more somber note. It is a pity that in the annals of jurisprudence the TAC case is as isolated as it is. It’s a proof of concept, but it’s a slender and vulnerable one.

The problem is that tangible evidence of the transformative power of the Constitution can be found in only a few areas of life; very rarely do the people who most need the Constitution as a shield or a sword feel its power. There are vast areas of public life that need the Constitution blown through them. I think of

  • The crisis in basic education that is condemning another generation of young people to failure and marginalization;
  • The stunted malnourished children and the 12 million people who feel hunger daily;
  • The inequality that persists in race.

So, as we celebrate the Constitution we must never forget that it is people-made….so it’s not eternal. It wasn’t easily created … but it can be swept aside easily.

In my view its ability to age and survive another 21 years depends on two things in particular:

  1. Mass, meaningful campaigns to create constitutional literacy amongst ordinary people;
  2. Much much wider access to affordable and quality legal services than exists now, so that people are able to challenge rights violations and insist that the state fulfills its mandate to bring about equality and social justice.

Both can be achieved, and I have ideas about how, but that’s a discussion for another day.