A window on the healing ministry of the Church in South Africa
The Antiretroviral Treatment Programme: A Window on the Healing Ministry of the Church in South Africa
A True Story
The young doctor climbs into the old white van with the care workers. He works for the US agency that funds HIV Care and Treatment projects and has come to see how this Catholic health programme utilizes these resources. Earlier in the morning Sister Christine had walked him through the clinics, the community gardens, and the buildings that house the many other services the Sisters provide in this impoverished area—adult education, skills training, and orphan care. Now he wants to see first hand how the sick and dying are cared for in their homes..
The old white van sputters its way through the arid, inhospitable terrain of the Winterveldt, a semi-rural area north of Pretoria. This community is home to about 600,000 people, many of whom are immigrants and refugees who were dumped there by the apartheid government since they did not fit into one of the other ethnic “home lands.” The inhabitants have long endured inadequate public services, including lack of healthcare, water supply, electricity, transport, and telephone lines, and its residents suffer from high rates of HIV and TB.
The van rolls up alongside a shack and the doctor follows the two caregivers down the steps onto the dry rocky ground and into the windowless one-room dwelling where he is greeted with the strong smell of urine. On the floor lies the patient, a withered looking woman almost hidden under a bundle of soiled blankets. He stands in the corner and watches one of the care workers kneel down and cradle the woman’s head in her arms. In a low raspy voice, the woman explains that she is hungry and thirsty, but that it hurts to swallow. She doesn’t know where her husband has gone or when he will return and there is nothing in the house that is soft enough for her to eat. Even if there was, she would be too weak to prepare it.
The doctor is overwhelmed. Despite his medical training, despite his big job, he feels helpless. But the care workers, women with little formal education, get right to work and make a plan. One will stay to bathe the woman, air the blankets and clean the house. The other one will go back to the clinic with the doctor to collect medicine and food that they can feed her.
As the doctor stands outside the shack waiting to leave, he shakes his head thoughtfully and says, “I wouldn’t have known what to do, how to help that poor woman.” And just as he reflects on this, he sees another member of the community run up to the van and report to the caregivers, “There’s a woman alone in that shack across the field who is so sick she can’t get out of bed. We don’t know what to do for her. Can you come and help?” The care givers agree to assist,
Now the young doctor knows how the aid funds are being spent. Now he knows what to write in his official report to the US Government: the resources are well spent. The Catholic Church is bringing life-saving health services to the needy in the forgotten corners of South African society.
A true story, but not a new story
What the young doctor experienced in 2008 when he visited the Winterveldt is a window on the health services that the Catholic Church has provided in poor areas of South Africa for many years, long before the HIV epidemic and long before the infusion of international donor funds. This healing ministry began in the mid-1800s when Catholic religious orders began to arrive in South Africa. Most orders initially focused on teaching, but the health needs in the poor rural communities were so compelling that many of the religious began to provide nursing care as well. These Sisters opened emergency hospitals and developed permanent health services. By 1914 Church workers provided healthcare in many of the “black areas” where there existed no government hospitals or clinics. Beginning in 1935 the South African government began to subsidize mission hospitals and clinics in outlying areas. Many of these health facilities developed into educational institutions that provided training programs for large numbers of health workers. In 1951 alone, 500 nurses were trained at 22 recognized mission nursing schools.
But in 1973 the Government’s Comprehensive Health Service scheme for government-aided hospitals and clinics came into force, and the South African Government took over nearly all Catholic hospitals. This was a devastating blow to Catholic healthcare. The only rural mission hospital that survived the purge was St. Mary’s Hospital in Mariannhill.
To meet the many unmet needs of the impoverished communities they served, nursing Sisters established primary health care programmes and provided basic health services in small clinics and in the patients’ homes. Thus, in the 1990’s, from the very first days of the HIV epidemic, the Catholic health network already in place immediately began to provide palliative and supportive care for the people affected by that scourge. In addition, individual parishes began to respond to the needs of the sick and dying and to care for the orphans they left behind.
A Coordinated Response
Toward the end of the 1990’s, as the HIV epidemic gained momentum, the Southern African Catholic Bishops’ Conference (SACBC) decided there was a need for a coordinated response to the HIV epidemic that was causing such suffering in the country and established the AIDS Office to provide training in best practices to the many HIV Church service programmes and to pursue funding resources. In 2000, the Director of the AIDS Office, Sister Alison Munro, applied for and was awarded a large grant from Catholic Relief Services (CRS) to support many of the small Catholic HIV projects scattered throughout the country. She was also successful in raising funds from numerous other sources, including Catholic Medical Mission Board (CMMB), Cordaid, the Catholic Dutch development organization, and its British counterpart, CAFOD.
Treatment Becomes Available
The Church service programmes gave care and comfort, but they could not save the lives of the people they served; that would require the provision of costly antiretroviral drugs, completely beyond the budget of the HIV projects. But Sister Alison and her team in the AIDS Office wanted to do more than provide palliative care; they wanted to keep people alive so they could return to work and raise their children. Against all odds, they wrote a grant proposal that in 2004 was incorporated into a nine country AIDSRelief grant that CRS was awarded from PEPFAR, the fund supported by US President Bush to provide antiretroviral treatment in fifteen countries, including South Africa. In 2009 the AIDS Office was given leadership of the grant, with the CRS role limited to the provision of monitoring and evaluation technical support. This transition from CRS to the SACBC was the first transition of PEPFAR funds from an international organization to the local partner and has become the much publicized model for future US development aid.
Over the next decade in the PEPFAR programme alone over 45,000 people were placed on antiretroviral treatment, over 78,000 received HIV and TB care, and 29,000 orphans and vulnerable children. Many lives were saved. But something else happened as well. Like the young doctor who visited the Winterveldt, many people learned about the historic role of the Church in providing services to poor communities.
Ministry versus Project
South Africa is the country with the most people living with HIV, and South Africa was the country that received the greatest amount of international donor funds to combat the epidemic. And while the SACBC/CRS AIDSRelief grant was one of the largest awarded in South Africa, it was only one of around a hundred recipients of PEPFAR funds. Since many of those infected but unable to afford treatment lived in poor townships and in far flung rural communities, many grant recipients established HIV treatment projects in these areas. But most of the aid workers had neither lived in nor visited these disadvantaged communities, and they found it an uphill battle to adjust to the new environment, to develop activities acceptable and appropriate to the culture, and to earn the trust of the people. This process was made more challenging by the historic separation of communities under apartheid, the stigma attached to HIV, and the fear of antiretroviral treatment—a fear fed by government denial of the problem and resistance to antiretroviral treatment programmes. As a result, the implementation of drug therapy in some projects was delayed until “community assessments” were conducted and “community mobilization” completed. The Catholic Church programmes, on the other hand, didn’t have these challenges. The Church was already present in the community and already providing care to people living with HIV. The antiretroviral treatment programme was not a project; it was just another arm of its healing ministry.
One of the first Church service programmes to provide drug treatment was the St Joseph Community Care Centre in Sizanani Village, situated in Bronkhorstspruit, a periurban area, fifty kilometres from Pretoria. St Joseph’s had long provided service to the community, including health care, income generating activities, child care, and a hospice. On the first morning St Joseph’s scheduled a treatment clinic, the staff feared that the stigma associated with AIDS would keep most people away. There was no way that patients could slip in and out of St Joseph’s unseen. But the staff need not have worried. On Day One when they opened the doors, they found a crowd patients on the lawn outside, holding up the results of their HIV tests, anxious to receive treatment.
Myths and Misconceptions
In the early years of the antiretroviral treatment programme, the US Government sponsored many conferences for the treatment partners funded by PEPFAR. There were many objectives for these conferences—to present clinical updates; to explain the reporting methods and formats; to discuss grant requirements; and to promote an exchange of best practices among the partners. Generally each of the large treatment partners, including the SACBC AIDS Office, would give a presentation on their activities. A question and answer period followed. In these sessions, the CRS/SACBC presenter would typically be asked two questions. The first would be some variation of “What about condoms?” The second would be, “Do you treat only Catholics?”
The question on condoms I expected, even though probably everyone in the room knew the Church’s position on the subject. The answer would be something like, “As you know, the Catholic Church does not promote condoms as the answer to the epidemic…” followed by a description of what the Church does do—give patients correct information, provide services in the home, care for orphans, provide treatment, etc. After the first year, people seemed to lose interest in this issue and stopped asking about it. The occasional statement that the Catholic Church was “killing people” by not distributing condoms was no longer heard. Perhaps this was because in South Africa there were condoms under every rock; yet the epidemic raged on.
It was the second question that always came as a surprise. Less than 7% of the South African population is Catholic; most people who receive services in Church service programmes are not Catholic. I had never thought to explain this during my presentations. I didn’t realize thatso many people had the mistaken belief that the Church serves only its members. Other presenters from the SACBC/CRS programmes had the same reaction. The question, “Do you only treat Catholics?” literally jolted one religious Sister back from the podium where she had been speaking. Shocked, she answered, “No, of course not. We treat everyone who comes to us. I don’t know their religion. I’ve never asked.” After the first year, this question too faded away. The antiretroviral treatment programme had exposed many people to the ministry of the Catholic Church and had dispelled a number of misconceptions.
Getting the Science Right
In taking on a complex medical treatment programme, the SACBC and CRS intended to do good and to do it well. In this endeavor the Church was blessed with the participation of highly respected academics from four South African universities: University of the Free State; University of Pretoria; University of the Witwatersrand; and the University of Pretoria. Through their contact with the treatment programme, social science and medical professors conducted research that informed programmatic development; provided lectures at training sessions; evaluated the services the programme provided; and gave access to a number of resources at their respective institutions. Almost all these professors served without compensation, their reward being the opportunity to be part of a dedicated team committed to provide quality care to the poor, despite the limited resources and challenging conditions.
Three of the medical professors are world renowned HIV experts, held leadership positions with the Southern African HIV Clinicians Society, served on international advisory boards, and were widely published in respected medical journals. One of the professors, Professor Robin Wood from the Desmond Tutu HIV Research Center at the University of Cape Town, donated his expertise and resources to evaluate the clinical outcome of tens of thousands of patients in the treatment programme and presented the results in journal articles and international conferences, concluding that this network of Catholic Church programmes, some of which operated out of shacks, freight containers, and from the back of an old car, provide effective and efficient antiretroviral services in a wide variety of poorly serviced areas in South Africa and made a significant contribution to health care in South Africa.
Professor Wood and Professor Van Rensburg from the University of the Free State also offered guidance to the SACBC/CRS Monitoring and Evaluation Manager, Dr Marisa Wilke, in her PhD study, “Models of Care for Antiretroviral Treatment Delivery: A Faith-based Organization’s Response.” In her study of the different models of care at four Church treatment sites, some of the key findings were as follows:
- On average 73% of the patients who received care were not Catholic. These Church service programmes treated all community members who were in need, regardless of their religious affiliation.
- Community-based programmes provide access to the poorest members of society.
- Good care can be provided under the most basic conditions, whether in park homes, in freight containers, in old church buildings, from the back of a car, or under a tree.
- Where human resources for health are limited, many treatment tasks can successfully be shifted to lower level health workers, provided they receive proper training.
- Over 90% of the patients received adherence support and disclosed their HIV+ status to one or more persons, greatly increasing their adherence to the treatment regimen.
- After receiving 2-3 months of ART at these sites, the patients were virally suppressed, indicating that their treatment was successful.
A Flagship Programme
The SACBC/CRS antiretroviral programme has been the subject of professional papers in the South African Medical Journal (2010, 2012)and PLoS One (2012) andhas been presented at numerous national and international conferences, including the International AIDS Society conferences (2010, 2012), the American Public Health Association Conference (2006), and the prestigious CROI (Conference on Retroviruses and Opportunistic Infections) Conference (2010). In addition, numerous papers have been presented at PEPFAR conferences, at South African professional conferences, and at Church-related meetings. All these presentations and journal articles can be found on the SACBC AIDS Office website: www.aidsoffice.sacbc.org.za
As a result, the SACBC/CRS programme attracted many international visitors who were anxious to see how such quality medical care could be delivered in such poor communities. Visitors included the Director of the United States Centers for Disease Control and Prevention, international and local officials from the United States Agency for International Development; and US Health Resources and Services Administration; and numerous local and international academics and clinicians. It is worthy of note that when the Secretary of Health in US President Bush’s Cabinet, Mike Leavitt, came to South Africa in August 2007, the one treatment site that the US Embassy in Pretoria arranged for him to visit was the SACBC/CRS Winterveldt Mercy antiretroviral treatment clinic. In addition, the US Deputy Secretary of State for Management and Resources, Thomas Nides, visited the Nazareth House treatment site in 2011.
These high level visits to SACBC/CRS treatment sites, many of which had operated on a shoestring for decades, not only served to keep the funds flowing, but also served as a witness to the quality health care the Church has provided, without fanfare, over many decades to those most in need.
Training for Africa
One of the greatest challenges of providing health services in poor rural communities and townships is the limited availability of properly trained personnel. Health workers with good qualifications generally prefer to work in well resourced communities that offer better living and working conditions. This challenge was compounded by the fact that AIDS treatment was new and was not widely available in the public sector when the SACBC/CRS first began the AIDSRelief programme. Most health workers, including medical doctors, lacked the necessary education and clinical experience to provide appropriate HIV care and treatment. Further, the reporting requirements to the funder were stringent and required detailed records of the patients, their treatment regime, their compliance, and their clinical outcomes. This type of patient monitoring was new to most health workers and, as patient numbers increased, required electronic patient data systems. But many of the health workers had never even turned on a computer. This lack of computer skills also made it difficult for the treatment sites to meet the strict requirements for accounting for the funds they received, to keep track of drug supplies, and to fulfill the administrative requirements. For these reasons, training was urgently required.
SACBC/CRS embarked on a massive training programme. Experts from the Southern African HIV Clinicians Society were enlisted to train and mentor the doctors and nurses in the classroom as well as in the field. A hotline was made available for rural clinicians who needed to consult with an expert on one of their patients. Health workers were sponsored to attend clinical conferences. Many of the medical personnel worked part time at the SACBC/CRS treatment sites and part time in government hospitals. The skills they gained through this training benefitted patients in the public sector as well as those at Church treatment sites. Training was also provided for lay counselors, community care workers, site administrators, finance officers, and for staff responsible for record-keeping and data entry.
It has been necessary to offer training to site staff on a continuous basis. As staff at the treatment sites become better qualified and more experienced, some look for opportunities that offer better pay, more comfortable living and working conditions. And as HIV care and treatment becomes more widely available in the public sector, some staff from the SACBC/CRS treatment sites are recruited into government facilities. There is a constant need to train the new staff that are hired to replace them. But there is a positive side to this picture: the staff trained through the SACBC/CRS antiretroviral treatment programme can be found in government institutions in many parts of the country and spread the reach of the Church’s healing ministry. And when there is a need to partner with the local government, they can also serve as ambassadors for the SACBC/CRS treatment sites.
Partnering for Sustainability
PEPFAR, the US president’s emergency fund for AIDS relief, was just that—an emergency fund. In 2003 when the fund was established, the HIV epidemic was out of control and treatment was essentially unavailable to the vast majority of the victims. The massive infusion of US government resources that funded antiretroviral treatment projects, including the SACBC/CRS programme, was intended to save lives in the short term, to prevent new infections, and to support governments to develop their own national response to the epidemic.
Since 2009 the South African government has stepped up its response to HIV and AIDS. Today HIV care and treatment is increasingly available in the public sector, and PEPFAR funding is winding down. Although HIV and the orphans left in its wake still present a huge challenge to the country, stand-alone emergency treatment programmes are no longer considered the most appropriate response. Today the goal of the government health services is to mainstream HIV care and treatment into the primary health care services and to strengthen all aspects of the health care delivery in the public sector. To that end, PEPFAR funding is increasingly being directed to the government health services and will no longer fund HIV treatment provided by nongovernment institutions, such as the SACBC.
The PEPFAR grant to the SACBC AIDS Office ends on 31 May 2013. And while there may be some carry over funds remaining, the grant will not be renewed. The goal now is to ensure that the patients in Church programmes are sustained on treatment. Because these Catholic programmes have become well know known and because the services they offer are highly respected, the AIDS Office is having success in negotiating arrangements between the individual treatment sites and the relevant government entities for the continued care of the patients. These arrangements vary depending on the needs and resources of the Church treatment sites and of respective districts and provinces but can generally be described in terms of two broad categories:
- Where a public health facility in the catchment area is capable of absorbing the patients, those needing antiretroviral drugs are transferred to the government entity. In these cases, stand-alone Church antiretroviral treatment sites may close. Those Church sites that offer other services, such as hospice care, may continue to operate in this more limited role.
- Where the government health services does not have the capacity to absorb all the patients, either because it has no appropriate treatment facility in the area or because government facilities are overloaded, a public-private partnership is formed where government subsidizes the costs of the Church treatment centre, through the provision of drugs and laboratory services and in some cases contributes to operational costs. Depending on the need, the Church site might serve as the district health facility for a certain catchment area. The Church site could also serve as a down-referral site, caring for stable patients or as a treatment initiation that subsequently refers the patients on for long term care at a government facility.
The Legacy of Healing
The antiretroviral treatment programme implemented by the SACBC and its treatment sites opened the eyes of many government officials, medical experts and academics to the work that the Catholic Church has quietly undertaken year after year in the neglected and forgotten corners of society, sometimes with adequate funding but often without. This increased visibility, though neither sought nor expected, has been a witness to God’s love and care for the poor and to the joy of those who work in God’s service.