Heloise Emdon, August 2005
The room was filled with the powerful voices of at least 40 women and a few men singing and swaying, stomping and inflecting to the words of their composed songs. They were all on antiretroviral treatment (ART) and their clinic sister Soodie had motivated them to tell their stories. The volume was rising, they included a little step accompanied by the movement of their hands saying in Sotho: “Away with those people who are gossiping about us, we are surviving because of the antiretrovirals (ARVs) and we know that they work!” And again, to the rhythm of the toyi-toyi (the freedom dance that became famous in the struggle against Apartheid) they shout, “Viva ART! Viva!”. It usually is “Viva ANC! Viva!”
We are in the Phomolong clinic, 200kms north of Bloemfontein, in the Northern Free State town of Henneman, part of the once-productive Gold Fields. This is the middle province of South Africa, about the size of Uganda with large commercial farming and mining the mainstay of this economy. But unemployment is at an all time high in this complex of gold mining towns. The strong South African currency (ZAR) has driven down the profits that marginal mines can make on the international gold market. Several of these mines have closed down, leaving economically dormant communities marginalised from South Africa’s otherwise vibrant economy. Migrant workers have left the mines, and social dislocation is evident. The Free State province also has the third highest HIV infection rate in the whole of Africa. Unemployment, poverty and lack of opportunities for generating an income are the calling cards of this community, but they warm us with their welcomes for these are international visitors who are coming to hear their testimonies of how their outlook on life has changed.
Myriam “Stompie” Mhothlo (stompie means short) comes forward to say that she followed the advice of the clinic sister, got herself tested on 19 July 2004 and by 7 Oct she was on anti-retroviral treatment: “I encourage people to come forward and to be tested. Whether you are infected or affected, we are just like every body else, we are affected by this virus which cannot talk. We are fortunate that our government is giving us ART for free. Viva ART! Viva!”
“Our community is afraid to be stigmatised, the older people don’t come forward because they are frightened”. Funerals are held without the cause of death ever being made known. People do not talk, there is a culture of fear, stigma, and then you die!
The trip:
I am travelling with IDRC-ESARO regional director, communications officer, Tosin Oyekanmi from the SA satellite office and we are accompanied by the head of CIDA in South Africa, and the CIDA HIV programme officer in South Africa. Our project partners are the University of Cape Town’s Lung Institute which has focussed interventions into lung health, the largest killer in South Africa, and the Medical Research Council (MRC). The MRC developed a patient profile system, initially using handheld applications software on Palm handheld computers and now the Free State government has implemented a PC-based network which puts a PC into the hands of the data capturers in every remote clinic, referral hospitals and provincial hospitals.
This is a complimentary project of the GEH Palsa (Practical Approach to Lung Health in South Africa) PLUS second phase which has provided colourful guidebooks to assist the professional nurses, the first line of contact with HIV patients, to diagnose the illness and the opportunistic infections.
We spend a day in the field visiting a primary health care facility, the clinic in Phomolong, a typical rural clinic where the initial assessments are made, the blood tests done, the three week counselling to prepare patients for the complex use of these lifelong drugs, the anti-retrovirals and then they are referred to the treatment centres, or regional hospitals, where the patients see a doctor, get their first prescription, after which their contact will be mainly with the local clinic nurse. We visit the regional hospital in the town, Welkom, called Bongani Hospital where doctors explain how they receive referred patients from the Clinics and prescribe the ART drugs, then monitor them six monthly. The drugs are dispatched monthly to the rural clinics.
A patient profile system seems like such an obvious and necessary health management system but we learn that amongst the nine South African provinces, this is the only province that has one. Free State also happens to be a province that maintains an interactive website where the quarterly reports are available online (the ARV portal is available here.) And this has come with a price. Not a word of congratulations for the first province that has been able to give a comprehensive monitoring quarterly report of how many patients have been screened and how many on the system.
Instead, from the single page management report (above) that can be drawn from the relational data warehouse, developed and housed in the Medical Research Council with IDRC (Acacia and CA) funding. Policy makers like Dr Ronald Chapman, Executive Manager Health Support, Free State Department of Health can draw a report for the MEC, deliver it as a quarterly report to national Health Department.
When the MEC Mr. Sakhiwo Belot meets us and talks about the powerful health information management system (HMIS), he has access to his concern is, as he reads down the right hand column of the one pager the number of patients who died since they entered the system (see insert flow chart below and note the the right hand column records the deaths ) from testing through to being on treatment. When meeting in coordinating meetings with provincial peers, this province has to answer the vexed and highly charged political question: “Why did the people on the treatment die?”. He reflects: “did we kill them?”, This challenge is wrapped in the ambiguity of the South African policies towards HIV/AIDS and anti-retroviral treatment. It does not acknowledge that this provincial has created the only electronic central record system, linked to the population data base to validate death registration. It does not acknowledge that the Free State Province is committed to ensuring lifelong treatment and follow-up by name of each patient. It does not acknowledge that the integration of patient information and laboratory reports have enabled the surveillance of drug resistance, which could threaten all efforts of prevention and treatment.
South Africa’s policy on antiretroviral treatment was delayed by several years of political positioning around the belief that HIV does not cause AIDS. President Thabo Mbeki, his health ministers and a series of alternative health advisors took this oppositional position. What emerges from the complex of research that is being undertaken by GEH partners is that these views are still variously held by a range of political figures, sending out ambiguous messages about the ART.
What the Free State’s patient profile system has been able to establish in a very systematic way is that when a patient enters the system that they are followed up properly. Drug interactions need to be monitored and the research team has also been able to track through routine blood sampling, adverse drug reactions. These patients become life-long partners with the primary health care nurses who could be the “barefoot” doctors in the affected communities. They stand proxy for the very few and by now overstrained medical officers in the provincial hospitals who need to do diagnose the patients and prescribe and have follow up visits with these patients.
The Free State system, after only 18 months of roll-out has 2800 patients on the drugs and have registered only 6825 (in August 2005, the rollout started in May 2004), and know they are only touching the tip of the iceberg. They believe that there are 30 000 patients that qualify with CD4 counts below 200 and should be entering the drug therapy.
One of Bloemfontein’s largest hospitals, National Hospital, has had to call a halt to seeing new HIV patients referred by the clinics, because they receive 1000 patients a month and have reached the limit of how many patients the three doctors can handle. There are 13 medical officer posts vacant in the hospital and there is only one pharmacist to count the drug supplies that need to be dispatched to the clinics. They are also running out of safe storage space for the drugs. The system is creaking under the regulations that hamper the flow of patients into the referral system to doctors at the hospital level.
In most other provinces the state is simply handing out ART without a monitoring process. The state seems to have interpreted this as too big to handle which is partly responsible for the intransigence on the whole ART issue. Undue influence has also been placed on researcher in this field to withdraw publications in reputable medical journals to appease government.
Post Script April 2006:
I put off sending what I have written in August 2005 as a trip report: Its seems a difficult task to manage a programme where the policy and political statements are at tangents with each other. I am in need of an internal debriefing: I cast around for an understanding of the ambivalence I experience with patients declaring they have claimed their lives back from the dead thanks to the antiretroviral therapy, our support of the programme, and yet the continued ambivalence in the minds of the provincial policy maker as he defends his department to his colleagues. I find the book “Witness to Aids” by Supreme Court of Appeal Judge, Justice Edwin Cameron, who is described by Nelson Mandela as someone ‘living with AIDS himself, his witness and activism has shown the hallmarks of great bravery and principle’. He writes in the chapter “The tragedy of AIDS denialism in South Africa”:
Cameron recounts through a personal history, his public stance on being gay and HIV positive, how ART changed his life expectancy and quality of life and how he continues to work. His book describes the struggles in South Africa that other Africans, in particular the Treatment Action Campaign took, on the issue of Antiretrovirals including court action against the State. “The denialist shadow seemed to loom large behind the government’s resistance. In court papers and in arguments before the courts, the government justified its refusal by claiming the drugs were toxic – a tenet central to the entire conspiratorialist theory of the AIDS denialists.” P 116
“President Mbeki has never publicly stated that this view is that HIV does not cause AIDS. What he had done is to ask how a virus can cause a syndrome……and regards the syndrome of immune collapse afflicting central and southern Africa as a disease ‘of poverty and underdevelopment’, rather than a viral syndrome for which the first line treatment must be antiretroviral medication.” P117
“The object of those casting doubt on the conventional causal theory of AIDS may have been to save African from the supposedly stigmatising effect of a Western disease model that seemed to imply that African’s sexual conduct led to distinctive disease patterns on this continent. Yet the effect of their dissident stance was to re-stigmatise the disease.” P 118
22-24 October 2006
Follow-up visit with Industry Canada and theCanada Fund for Africa programme officer who came to monitor the Connectivity Africa funding, and on invitation, Councillor CIDA South Africa and I also invited the Meraka Institute and Meraka Open Source programme and centre.
This project visit is directed by Chris Seebregts of the Medical Research Council (MRC) of South Africa who is the project leader that developed a central data repository to collate data from the start of the Free State Department of Health’s treatment program. This included patient profile data of every patient testing and entering the treatment program in the Free State. In addition, the MRC also developed an innovative handheld application (PDA) to ensure that data was captured into the system from paper records before a comprehensive medical record system was implemented. Of the 26 000 patients registered on this system, approximately 5 500 are being treated. The province estimates it has 400 000 infected citizens. According to the data collected in the Free State, of those that started the treatment 75% are alive and in care and testify to these “Lazarus” drugs literally raising people from their deathbeds.. The results show that antri-retrovirals are extremely effective, as effective as in a developed country, but the treatment is not reaching enough people and many patients are dying while waiting for treatment.
We visited the Metsimahalo ART Clinic in Klerksdorp where me met a very animated Dr Grace Khoba who says the patient profile information cuts her time of recording patient data dramatically and gives her more time with the patient.
Pino Rampai is the data capturer and demonstrates how familiar he is with the new Meditech system, a proprietary health management information system bought by the Free State department of health and rolled out more rapidly than initially expected by the MRC project.
Although it is an online system, Meditech relies on real-time communication which are not excellent in this rural province. Any changes to the proprietary systems requires a team of US-based software engineers to adapt the system and this is extremely costly. For instance Meditech did not register deaths because it was considered by its developers to be a medical system to assist with getting sick patients healthy. Writing and linking the system to death registration and clinic records required a whole module development for customisation to the Free State which was extremely expensive.
We then visit Refengkgotso Clinic in Denysville, a small town on the banks of the Vaal Dam. This is one of two clinics that still retain the use of the handhelds initially implemented before the Free State had a wide-area network and Meditech system. The data capturer, Isaac still captures the nurses completed forms on his Palm top and transmits the information regularly throughout the day to the central database where the relational database can run regular reports for management information.
The next day we meet Dr Ralph Nkiwatiwa of the Bongani Hospital in Welkom and his team of head male nurse, locum doctor, nurses and volunteer helper – a young woman from the area who has not found a job since graduating. Dr Nkiwatiwa is one of the key surveillance doctors in this regional hub doing early surveillance of drug resistance, sending the majority of specimens that are being genotyped for sequencing the virus. Here the project is collaborating with Dr Casells doing the genome typing to enable the development of a bank of traceable blood samples that can be tracked when resistance in a single patient is detected. The major concern here is that the C-virus in Africa is already a mutated virus following the A + B viruses prevalent elsewhere in the world.
Dr Nkiwatiwa has also started encouraging nurses who are using the PALSA+ materials to teach patients how to improve their nutrition and health while they await treatment. The nurses are also doing early detection of TB so that the TB drugs can be administered which then delays the introduction of Anti-retrovirals by three to six months, but this is an important progression for the treatment. Dr Nkiwatiwa was part of the team that the Lung Institute consulted during the designing of the form that nurses and doctors complete to develop the patient profile and use it for surveillance says his time with the patient is greatly increased because essential information is already completed on the forms when he gets to see the patient and he need not ask routine questions or search for important information from the laboratories for the patient.
I note from conversations with Chris that Vanessa and Mpume are leaving the MRC, but not lost to the project, as they are going to work respectively for the UCT Lung Institute (to complete her PhD) and Mpume is going to work as a consultant, amongst others, for the consultancy that developed the relational database in this project of the Free State health system, linking the legacy systems through a Data Warehouse..
Our last stop is in Bloemfontein where we meet Dr Ron Champan, Acting Director General and Sr Portia Shaimatu previously head of the nursing college but now the exective manager in the Dept of Health and head of HIV-TB and STI infectious diseases. Chapman points out this is the only province that has attempted to get patient information online, for which they appreciate the research funding the IDRC provided, especially the palm top computers that were used before the department had its own computers in clinics and hospitals.
“It’s taken us time to get the system online, but if you want good data you need a system. It is not easy implementation, it can create backlogs for data capturers and then backlogs in the system.”
But the type of information they get out relates to trends, patients on treatment. This they validate through triangulating with the number of pills dispensed.
“We get bashed by our peers from other provinces. They say our data is lagging behind, but I think we have the foundation now for rapid growth of serving patients. On the other hand our statistics are more accurate. We are the only province that know the outcomes, other provices only put patients on the drugs. We know what is happening to those patients in the system.”
We later meet Prof Cloete van Rensburg, head of infectious diseases at the University of Free State medical school who is also part of the project who points out this is the first database of its kind in the world. It will also have a sustainable future because other researchers (Oxford Group studying immune response types and the WHO) are interested in it. Another important aspect of the data is that it is the only baseline set of data on such a large scale concerning the introduction of particular cocktails of the drugs being delivered across the board. Patients’ responses to the drugs and the surveillance enables a higher level of care.
The next phase of the project is about to be implemented, that is for nurses to get electronic feedback (such as laboratory tests of patients blood samples) for more rapid response and communication with patients. Dr van Rensburg will also be working with the STRETCH project to assist nurses to become initiators of the anti-retroviral treatment.
