God, AIDS, Africa & HOPE

Reflections / Gedanken

20.08.2009 Positive clergy

Whether it is because people have read some postings or otherwise heard about it, it is amazing that there are people out there believing that a normal priest, a normal religious can not be HIV positive. Why not – I ask back. Also clergy, religious and seminarians, even nuns are only human beings, having a life before entering the state of religious life or being ordained. They continue to be human beings with all what comes with it, they can fail and raise again, and not only once.

Being a priest, religious or seminarian means to be called to holiness, but humanity remains – holiness without humanity, mistakes, errors and a life with ups and downs is not existing. There is nobody being born, raised and then lived a life without falter in this world. And when it comes to the official saints of the church, their holiness can only shine against the humanity, they have shown and experienced in their lives.

Only knowing to be weak, to make mistakes, to go wrong ways – and accepting that, can lead to maturity and to show compassion to others as I am able to show compassion to myself.

Writing this, I also feel, that even to think in the categories of “right” or “wrong” in connection with HIV is wrong. It is not even up to me to judge anybody in this matter. Decisions, we humans make and have to make every day leads to all sort of consequences. The main thing is to accept the consequences and to live your life to the fullest. Leave the judgment to God…

Filed under: HIV and AIDS, Reflection, , , , , , , , , , , , , , , ,

03.08.2009 positive blogging…

It is amazing to find out more and more people blogging about their positive lifestyles and it is encouraging to read about it.  Most of them are doing it anonymously and it is understandable amidst the fear of stigmatisation and the often neurotic way, people react to a positive person. Why is that so? Because amazingly I have the impression, that it is always the others, who would be vulnerable to catch the virus. I have had discussions with people having multiple unprotected sex, but they were still convinced that they carefully selected their partners and that the risk of contracting the virus was almost zero. Isn’t that amazing?
An unforgettable moment in my life was last year visiting a friend in Thailand, who obviously was quite sick when I arrived. Knowing his lifestyle I spend days to convince him to visit a clinic and to let him test himself. On a Saturday evening at 10pm I got him into Silom community clinic and pushed my way with him through the staff trying to close down. Three rapid tests confirmed my suspicion and reflecting with him on what was happening, it was amazing for me to understand that he – deep inside himself – knew, what was wrong with him, but simply refused to face the reality of a test. God knows alone how many infections could have been avoided if he would have gone earlier. But the fear of stigma, of getting sick, of being rejected prevented him for a long time to go for the test. Understandable, but it showed me again how stigma adds to more infections and to early death as one starts treatment consequently sometimes too late.

Making things worse in this case, his CD 4 count was still to high to be able to receive treatment (over 200 copies p/ml).. so he had to wait another half a year before being able to start treatment.  These are the things driving me in my work in this field. The stigma, the unnecessary suffering until being eligible for treatment in a 3rd world setting and more and more the restriction of travel for people living with the virus. We are so advanced in treatment in Europe – but we are still miles away from treating HIV as a condition which does not need to end in discrimination or stigmatization of some kind.

We have to work with those affected and infected in an intensive way to change these settings, which lead at the end to more suffering and more infections – completely unnecessary. And we have to work constantly with ourselves to understand our own perceptions, fears, prejudices to convert them into a loving understanding without judgment.

Filed under: General, HIV and AIDS, Reflection, , , , , , , , , ,

02.08.2009 Living with HIV

I have added on the blogroll “living with hiv – as it happens”. I find this blog a very important one as it shows without attitude or drama how life develops after a positive test result. The blog is anonymous and this shows again, how difficult it is to get it out. Here in South Africa, the Treatment Action Campaign advocates the “coming out” of HIV positive people and sometimes I have the impression, that is is almost done in a militant and pushy way. I don’t agree with it at all. Living with the virus is as intimate as faith – and it needs time and trust to open up and to talk about things which are so close to myself. Everybody has the right to be silent and to decide himself or herself, to whom to reveal the news.

People can react sometimes quite funny – for me as a counsellor it is important to advice a newly diagnosed person to look out for one person, with whom he can share the news and with whom he can discuss his joys and sufferings, his grievance and anxiety related to the virus occupying parts of his or her body. It is indeed a roller coaster to get used to the virus, to get used to treatment, and to be able to live a life to the fullest.

I feel often sad seeing how prejudice creates stigmatisation, discrimination – there is still a long way to go until we just accept a person living with the virus without even considering what could have gone wrong. It really does not matter in my opinion how and when somebody was infected – it is for me as a person, a Christian, a priest completely uninteresting – the only duty I have is to encourage somebody to live, to experience the unconditional love of God and to make the best out of his or her life.

Here in South Africa, we also have AIDS orphanages, and I always tend to flip out when I hear people saying, they want to see the innocent AIDS babies and clearly trying to distinguish between them and those, who have acquired the virus during adulthood. First of all there are no AIDS babies, but babies living with the virus. And secondly there is no innocence or guilt when dealing with a person living with the virus.  We should stop even using such words – and leave the morals at home somewhere in the corner where they don’t disturb our judgement and our commitment towards other people. Lets forget about judging people – and just embrace them as they are. This is the way, we also want to be dealt with … at least the way, I want to be dealt with…

Filed under: General, HIV and AIDS, HOPE Cape Town Association & Trust, Reflection, , , , , , , , , , , ,

01.08.2009 Can a priest or religious be hiv positiv?

Dealing with HIV and AIDS on an ongoing base, it is interesting to note, that in our church we are always doing something for others, for those who are belonging to the flock, so to speak. But what is with those of us, the priests, the religious, the seminarians, those, preparing themselves for ordination – how do they cope with their infection? Isn’t it like having a double stigma – for seemingly having done something not allowed and this in the field of sexuality – forbidden for those who live celibacy.

Have you ever thought about those of the clergy being not able to disclose because the parishioners, or the bishop, or the fellow clergymen would reject and discriminate against such a person? Having a whole generation of youngsters born HIV positive – how if they receive a calling? Some seminaries or bishops require a medical certificate – being HIV positive excludes them for being trained to be a priest. How many orders don’t take brothers when they are infected? Does God not call people with the virus?

HOPE Cape Town and the Justice & Peace Commission of the Archdiocese of Cape Town want to tackle these questions and to reach out to those who are infected and working in the fields of the Catholic Church. We are in the beginning to set up a network of pastoral care, of networking which should reach far beyond South Africa.

So if you know about somebody, make him or her aware of this offer. I will continue to report on the progress of this initiative – confidentiality is guaranteed and on the website there are the emails of different persons to contact.

Let’s brake the silence about HIV and priests and religious in our own church and let this stigma be turned into a charisma for the person concerned and for the community, he or she is working in. And let us convene the unconditional love of God to all of those, who are serving in the Catholic Church with the virus and all, what comes with it.

Filed under: HIV and AIDS, , , , , , , , , , , , , , , , , , , , , , , ,

08.07.2009 How HOPE Cape Town was founded and what we do


A brief history of HOPE Cape Town to put this part of my work in context..

I had worked for a medical project in the children’s hospital at Tygerberg as a member of the Rotary Club of Signal Hill / Cape Town since 1999. And because that was going well, I was asked half a year later whether we couldn’t become active also in the area of HIV/Aids. The statistics were indeed alarming: every third child admitted had the virus in its blood.
I met with Dr Monika Esser, chairperson of our parish council and a paediatrician at Tygerberg Hospital, to brainstorm ways to help the clinic. As a priest my initial idea was to draw from Church resources. The St Joseph’s Home for handicapped children, a foundation of German Pallottine Sisters, for example, had an entire ward vacant. Couldn’t we care for little patients from Tygerberg here, to ease the hospital’s load?
The first meetings with the sisters at St Joseph’s were very constructive; indeed, they were excited about the idea. Soon we initiated concrete plans, and the first donations came in, even though we were still in the preparatory phase. But not everybody was as pleased with our idea as the nuns were. We had failed to factor in that in all matters pertaining to St Joseph’s, its administrative board always had the final say.
The committee, under the chairmanship of the archbishop of Cape Town, invited us to present our proposal. Immediately the first concerns were raised. Wouldn’t it be better if all donations went directly to St Joseph’s Home, which could then allocate these internally according to present needs? A representative of Red Cross Children’s Hospital cautioned that one could not possibly mix handicapped children with HIV-positive kids. A horror scenario was conjured: bleeding children, infection risks, unthinkable! Finally we were also asked if we could guarantee funding for the coming years. In short, our evening with the committee was a fiasco – we had suffered a defeat at every level.
A couple of days later I received a letter. It pre-emptively warned us against using St Joseph’s name for any purpose whatsoever. I could not believe this brusque admonition. It is worth noting that some time later the provincial government put our plan into practice at St Joseph’s, step by step, guaranteeing funding for three years – with the approval of the same committee which had rejected our initiative.
So we had to go back to square one. How were we going to proceed? At some point we had the idea to attach the project directly to the hospital. We proposed to establish a ward for infective illnesses, which would in particular dedicate itself to the most critical problem, namely HIV/Aids. The negotiations with the hospitals administration went, against our expectations, effortlessly well. For the first time a non-governmental organisation was granted an office in a state hospital. We established the new section and called it Ithemba Ward – the ward of hope. It had 24 beds, and two doctors and 14 nurses took care of it in three shifts. On 29 October 2001 we had our big day: in the company of 150 invited guests we inaugurated the ward. That date serves as the official birthday of HOPE Cape Town.
Growing up is hard work, as we would learn. Although we had enough funding to employ a project coordinator and to equip the ward, the appointed nurses initially were less than welcoming. They were irritated with the constant stream of outsiders, feeling as though they were being constantly scrutinised. The word control freaks was used. Besides, suddenly English was being used in a hospital were Afrikaans was virtually the official language. And then there was that crazy German, the priest, who kept coming around. Another one of those Europeans who think they know everything better… It took a great deal of effort over the best part of a year to win the trust of the care personnel.
In the interim we had decided that every little patient should be accompanied by an adult relative, because many poor families simply cannot afford to finance daily visits to a distant hospital. We bought additional mattresses and organised food for the accompanying family members.
At first many of the children who were admitted into the ward died. The expensive anti-retroviral drugs, which might have alleviated their agony and extended their lives, were initially unaffordable and in any case unobtainable through the normal channels. So HOPE Cape Town started to use donations to buy these medicines, and not just for the children but also for their infected parents. It was intolerable that a child should survive only to be orphaned. We needed a lot of money for that, and so turned to Germany for funding. Dr Susanne Reuther, who works with us in South Africa, has done great things in that respect. At first the hospital administration was sceptical about our activities because there were some open questions: who would take the ethical responsibility for the ARV therapy? And from whom would the medication be bought? The administration decided: of course from the hospital’s pharmacy, and only privately and on invoice. On top of that, South Africa’s ministry of health still considered ARV therapy the devil’s work, and some self-appointed experts even suggested that drugs such as Nevirapine would poison patients. Of course the preparations had been clinical proven in meticulous trials and were sold and prescribed all over the world. But in South Africa they remained highly controversial, and the political decision to make them generally available took half an eternity. So it was left up to NGOs such as HOPE Cape Town to save at least a few people.
The astronomical prices of these medicines also drove home the meaning of “economic apartheid” which followed the demise of political and social apartheid. Those who are poor and black must die; those who are rich and white may live.
As soon as the medications issue was finally settled, we faced another calamity. During the first phase we could admit only the most critical cases into our treatment plan, meaning children whose only chance for survival was ARV therapy. We managed to save a lot of children, but not all. The reader can imagine the implication of having just sent an overseas donor family the name and a photo of their “godchild” and then, having just received their reply and perhaps a gift parcel for the child, needing to inform them that their charge had already died. It was a testing time of learning, praying and sometimes also cursing. The children were dying under our hands, and one could only watch with balled fists.
Soon we employed an extra doctor on a part-time basis to ease the burden on the specialists with experience in ARV therapy. It may seem incredible, but in a country with 2,000 new infections a day there are too few medical
practitioners who know their way around HIV and Aids treatment, and many want to have nothing to do with it.
The sick children were usually referred to us at Tygerberg from day clinics in the townships, and we visited these initial contact points to explore the possibility of closer cooperation. It was our vision to install additional health workers in these clinics to concentrate on HIV/Aids and tuberculosis. We wanted to recruit these new colleagues from the townships and train them. They were to further their training through on-going studies and a certified course at the University of South Africa, a long distance institution of learning.
At first we were laughed at. Inexperienced hands from the townships were supposed to work in the medical institutions of the state? How was that supposed to work? Besides, it was unprecedented. But our persistence, sometimes perhaps also pig-headedness, paid off. Ultimately it wasn’t that difficult to convince the nursing team at the day clinic in the township of Mfuleni that this could become the vanguard in a new strategy in the fight against the disease.
Constance Nobathembu Mayaba was HOPE Cape Town’s first health worker, employed by us in September 2002. Our initially derided plan turned out to be a success story: 23 health workers are now engaged within the framework of our project in township clinics. They have received practical training from a specialised doctor and develop their knowledge through long distance study. In addition we have employed an experienced nurse who encourages their studies and coordinates their deployments. Our health workers are now widely regarded as proven specialists in the subject of HIV/Aids, as even the provincial government has acknowledged.
But all care measures are like fighting windmills if one neglects prevention. For that reason HOPE Cape Town has always emphasised prevention work, and addressed all the attendant social issues, from the stigmatisation of victims to the culture of denial, the trivialisation of the problem. In that regard we have naturally been asked about our position on condoms, and to that question there can be no one-dimensional answer.
The founder of HOPE Cape Town might be a Catholic priest, but the groupings with which the project cooperates are multifaceted and diverse. There are parishes and school classes, business concerns and state institutions, young people and old. Once we conducted a sex education session with the mentally handicapped, many of whom had sexual experiences. I asked myself whether I could offer a valid perspective on self-protection to these human beings by expounding strictly on the teachings of the Church. What were they supposed to do with the Church’s recommendation of abstinence? In those situations I became increasingly aware of the dilemma our Church is facing.
Prevention became a key function for me, and so I had to cultivate the necessary knowledge in that field. Over the years I have become something of an amateur medic, and as such I started to think about the role of the sangomas. About 80% of all black South Africans will first consult a traditional healer; only if that healer cannot help will they visit a medical doctor. I wondered why these naturopaths were not included in the strategies to inhibit the spread of HIV/Aids. Surely it was possible to connect the two worlds – the modern and the handed-down disciplines of medicine.
And so our next initiative was born. A workshop was held in December 2003 at Tygerberg’s academic department, bringing together hundreds of sangomas and representatives from the medical field. They discussed what they did and didn’t have in common and how potential cooperation might serve the patient. I learnt a lot about sangomas that day. They spoke about their powerlessness when watching the sick die, and one could sense how much they wanted to be regarded as equal partners in the health sector.
At the same time the unusual workshop revealed how far notions about illness and healing could diverge. I used to ascribe the sangomas’ claims of being able to cure Aids to naiveté, ignorance or pure delusion of grandeur. Now, having learned more about their perceptions, I became a little more cautious in my judgment. In their conceptualisation, an illness, including HIV/Aids, is not merely a physical defect, but a spiritual sign from the ancestors, a warning, a call, an intervention. In that context, healing is achieved when the symptoms of that illness disappear, but the virus itself may not have been cured.
And so the first contact had succeeded, followed by three further meetings. The sangomas led us into a new world of ambulatory art with its manifold secrets of natural remedy and the use of muti, objects and spiritual powers. And they learnt about western science, virology, modern tests and therapies.
During these exchanges I became conscious of an unspoken cultural barrier. For the sangomas, mostly from the Xhosa ethnic group, our collaboration was restrained by a tradition according to which I was not considered a real man because I was not circumcised. “Just a minor blemish,” I thought. But it was more than that, as I noticed in connection with an invitation to a ritual feast: I wouldn’t have been a fully eligible participant. So I decided to have myself cut. In any case, it is more hygienic and one doesn’t really lose that much. An Italian surgeon performed the operation, and after a fortnight of walking bowlegged like John Wayne, I could take part in the ceremony. I was even presented with a cowtail fan as a symbolic acknowledgment of my newly attained authority.
Having obtained permission from the provincial government, we launched a pilot project in October 2005: nine sangomas and five of our health workers were to complete a six-week full-time training course with a view to working out a structured referral system between traditional healers and state clinics. A scientist from the University of Cape Town, who had written her doctoral thesis on African naturopathy and was herself, a white person, ordained a healer, was going to guide the project for two years. Funding for it was made available from the German Aids-Stiftung, Germany’s Round Table and the company MTU South Africa (Pty) Ltd. We owe these donors a massive vote of thanks, because without them the pilot project could never have been launched. If the project would succeed, it may become a model for southern Africa and beyond. Newspapers and TV have shown interest in our unusual initiative; even the BBC in London has reported about it. We are now (2008/2009) in Phase II of the project, working closely with 3 of the 9 sangomas. It has shown that only very intensive training and personal connection can foster a trusted relationship, where indeed refereals and cooperation between a sangoma and the primary heath care facility can happen.
HOPE Cape Town now has a staff of 27, and our organisation is known throughout the Western Cape province. Many people in South Africa and Germany are supporting us; we cooperate closely with the German embassy in Pretoria and the consulate in Cape Town, and receive regular visits from German politicians, MPs, business people and journalists. We have been able to introduce our project to a delegation from Germany’s parliamentary health committee, then-foreign minister Joschka Fischer dropped in, and in October 2007 we welcomed the German Chancellor Angela Merkel, accompanied by social development minister Heidemarie Wieczorek-Zeul, to HOPE Cape Town.
When the decade-old partnership between the Western Cape and the German state of Bavaria was extended to include the field of HIV/Aids, HOPE Cape Town contributed to the formulation of the cooperation agreement. Within the framework of that agreement we sit on the advisory committee to the provincial health ministry. It also enabled us to introduce joint initiatives with the medical faculty of the University of Stellenbosch. We are in the process to forge strong collaborations in the areas of research and tuition because the structures we have built in the townships can open doors for research.
A formal “memorandums of understanding” was signed with the University of Stellenbosch, Department for Health Sciences and HOPE Cape Town occupies now also two offices on the Tygerberg Campus. An elective student programme for foreign medical students together with the research unit “KidsCru” complements the cooperation.
But enough about us. I just wish to mention one more vision particularly close to HOPE Cape Town’s collective heart. South Africa’s health system is short of thousands of nurses, many of whom have been poached by other countries, especially England, to ease the nursing needs there. For qualified personnel such overseas offers are lucrative – they are paid poorly at home and can earn much more elsewhere. That brain drain continues unabated, and increasing numbers of qualified people are emigrating. So we are thinking about alternative ways of replacing them. We would like to set up a new course of study in South Africa’s health system: an officially recognised qualification as a health worker. This could kill two birds with one stone. Firstly it would create many study opportunities and much employment; secondly it would reduce shortages in nursing personnel. An official approval of our training is on its way as this chapter is written.
But that initiative should also follow a tried and tested path. We don’t want to create new structures from nothing, but optimise and link what already exists. And we aim to finance that with our donations, not with state grants, because one can very easily become dependent on the state’s drip. State grants don’t just cause addiction, but erode one’s independence.

In 2009 a memorandum of understanding was signed by HOPE Cape Town and the “Justice and Peace Commission” of the Archdiocese of Cape Town to cooperate in the fields of pastoral care for priests, religious and seminarians, who are themselves living with the virus. A new and challenging future lies ahead also in this field.

More info: http://www.hopecapetown.com

Filed under: General, HOPE Cape Town Association & Trust, Reflection, , , , , , ,

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