IN THE CONSTITUTIONAL COURT OF SOUTH AFRICA CASE NO : CCT 8\02 In the application of: COTLANDS BABY SANCTUARY Applicant to be admitted as amicus curiae In the matter between: MINISTER OF HEALTH First Appellant MEC FOR HEALTH, EASTERN CAPE Second Appellant MEC FOR HEALTH, FREE STATE Third Appellant MEC FOR HEALTH, GAUTENG Fourth Appellant MEC FOR HEALTH, KWAZULU-NATAL Fifth Appellant MEC FOR HEALTH, MPUMALANGA Sixth Appellant MEC FOR HEALTH, NORTHERN CAPE Seventh Appellant MEC FOR HEALTH, NORTHERN PROVINCE Eighth Appellant MEC FOR HEALTH, NORTH WEST PROVINCE Ninth Appellant MEC FOR HEALTH, WESTERN CAPE Tenth Appellant and TREATMENT ACTION CAMPAIGN First Respondent DR HAROON SALOOJEE Second Respondent CHILDREN'S RIGHTS CENTRE Third Respondent ______________________________________________________________ AFFIDAVIT ______________________________________________________________ I, the undersigned, STELLA DUBAZANA do hereby make oath and state as follows: 1.1 I am a major female professional registered nurse, nurse counselor and HIV/AIDS care-giver and practise as such at Cotlands Baby Sanctuary (hereinafter referred to as "Cotlands"), 134 Stanton Street, Turffontein, Johannesburg. 1.2 The facts contained herein are true and correct, are within my personal knowledge and are based on my personal experience. 1.3 I have been mandated by Cotlands to depose to this affidavit. This appears from a resolution of the Executive Management Committee held at Johannesburg on 17 April 2002, annexed marked “SD1”. 1.4 My knowledge of the facts contained herein is based on my experience as a nurse working with children who are born HIV positive and their families. 2 I am advised that the facts contained in this affidavit can only be canvassed with the leave of the Court in the event that Cotlands is properly admitted as an amicus curiae. On 16 April 2002 Cotlands undertook by way of correspondence to the Court to make this affidavit available to the parties at the earliest possible opportunity and by no later than 18 April 2002. This affidavit will be provided to the parties and the Court within those time frames. 3 The factual material contained in this affidavit is tendered in terms of Rule 30(1)(a) alternatively Rule 30(1)(b) of the rules of the above Honourable Court. The facts are incontrovertible and are relevant to the determination of the issues before the Court and to the contentions to be advanced on behalf of Cotlands in the event of it being admitted as amicus curiae in this matter. To the extent that leave from the Court is required under Rule 9(8) to admit this evidence, such leave is requested in Cotlands’ application for leave to intervene as an amicus curiae. 4 Cotlands is a sanctuary for abandoned, abused, neglected and terminally ill children. At any one time, about 60% to 70% of the children are suffering from HIV \ AIDS. This percentage varies because there are always children entering or leaving the sanctuary. It is a place of safety able to house 42 children and also provides a crèche and nursery school for approximately 100 to 125 children. In addition it has a hospice facility for up to twenty HIV/AIDS terminally ill babies and small children where palliative care is provided. 5 The background to my coming to work at Cotlands is as follows. From 1972 to 1975, I did my practical training as a nurse at Pietersburg Hospital and obtained a nursing diploma. I underwent further training as a midwife at the Chris Hani Baragwanath Hospital between 1975 and 1976. From 1976 to 1994 I worked as a registered professional nurse at Leratong Hospital practicing primary health care with adults and children as well as clinical work with doctors. In 1981 and 1982, and while working at Leratong Hospital, I undertook further training at Chris Hani Baragwanath Hospital in primary health care obtaining a Diploma in Clinical Assessment Treatment and Care relating to both adults and children. From 1995 to 2001, I worked as a nurse for general medical practioners in private practice. During the latter years of that period I often came into contact with adult and child patients with HIV / AIDS and I was involved with their treatment and care. 6 I joined Cotlands Baby Sanctuary in June 2001 and I am employed as the Head Nurse. I am involved with palliative care as one member of an interdisciplinary team which caters for HIV/ AIDS care. I am also involved with palliative training at Cotlands and have undertaken the training that is offered at Cotlands. 7 My duties involve inter alia, seeing to the care and well-being of the children, performing medical examinations and administering medicines to children, if necessary, in consultation with medical practitioners, taking family histories of the children where this is possible, counseling families and children and briefing them on death and dying, ascertaining what they know about HIV/ AIDS and educating them, counseling of staff, care of the bereaved and preparation of funerals. 8 The palliative care that Cotlands offers is aimed at providing holistic care to children when curative treatment is no longer available. The system of care that is provided has been developed by Cotlands over the years that it has been involved in HIV/AIDS child care. 9 There are four components to the care system provided at Cotlands: the provision of physical care, social care, spiritual care and psycho-social care. 9.1 The physical care largely involves keeping a patient pain free alleviating as much pain as possible. 9.2 The social care includes referrals to social workers to help parents and relatives obtain grants as well as finding suitable homes for children. 9.3 The spiritual care involves referring children to pastors or other clergy to take care of the spiritual needs of the patient. 9.4 The psycho-social care involves keeping each individual child’s mind at rest and where there is a family, the family members’. It includes counselling and ascertaining what the child is experiencing including depression. It includes dealing with imminent death and assisting the family after the death of the child patient during the bereavement period. 10 The multi-disciplinary team that I work with includes other nurses, doctors from Chris Hani Baragwanath Hospital who do voluntary work, care-givers (based both at Cotlands and home-based), a physiotherapist, social workers and many volunteers and support staff. 10.1 The social workers are involved with finding homes for children who come to Cotlands. One of the main problems that we experience is that we are often told by prospective foster parents that they don’t want to open their homes to HIV positive children. We are sometimes asked why a family should invest love in a child that is going to die. Sometimes it is simply too difficult for a family to adopt an HIV child because the child is frequently ill. This process is also emotionally difficult for the nurses and care-givers at Cotlands because we know how badly these children need love and care. 10.2 A physiotherapist is engaged to help HIV/AIDS children who are in our care. Many of the HIV positive children do not develop muscles and are delayed in crawling and walking and reaching other milestones. Some develop stiffness of limbs. 11 To care properly for the child it is necessary for the staff to meet regularly to discuss the development, care-needs and problems of each child. This allows each staff member to approach the child’s care holistically and get to know each child and their situation. We keep records of and are familiar with the medical and the family history of the children, the latter insofar as it is possible. 12 Various hospitals and institutions in and around Johannesburg as well as different welfare agencies refer the babies and small children to us. Many of the babies are referred to us because we have a hospice facility and are able to provide the palliative care that is required for HIV / AIDS children. Children are often referred to us because they are diagnosed to be terminally ill. 13 We have several day care workers who visit families in the townships in order to inform them about the disease and how to treat it practically, as well as providing information about welfare grants and the like. It is then that the home-based workers frequently come across children who are orphaned and looked after by a surrogate parent such as an aunt or grandmother. These families are often destitute. We are some-times told that one or more of the children are HIV positive and are ill with the opportunistic diseases associated with HIV / AIDS. When informed of the above we offer to take in and care for the ill child/children to offer some respite to the remaining members of the family. 14 Although this means separation of the child from her family and the concomitant depression that this may cause in the child, it is often the only manner in which these families can cope with the burden. Often families do not have the means to care for the child’s medical needs or they lack the skill to do so. In one case an HIV positive child was oxygen dependent due to pneumonia and was sent to Cotlands for her care but the family wanted to take the child home. Baragwanath had organized an oxygen cylinder for her to take home but because the family did not have electricity, it was not possible for the family to administer the oxygen concentrate. The mother brought the child back to Cotlands. 15 When we know who the family is, we encourage the families to visit the child and if they wish to take the child back into their care, for example to conduct ancestral rituals aimed at healing the child, we allow them to do that even if they are very ill. In most cases the caregiver sees that the child may die soon and returns the child to Cotlands so that we can provide the proper medical care and make the death as comfortable and dignified as possible. 16 Some of the HIV / Aids children who come into our care are abandoned because of the infection and because their families have other children to take care of or because they themselves are ill and cannot cope with a sick child. 17 The babies and children in the hospice section are terminally ill. We are unable to determine when they will die, and at times, because of the care they receive in the hospice section, some may grow strong enough to be transferred to the sanctuary section of Cotlands. When they become very ill again they are returned to the hospice section. 18 There are 20 beds in the hospice. If the hospice is full we generally transfer those children who are healthy enough to the sanctuary so that we can accommodate newcomers. We try to keep the number of patients in the hospice at 16 or 17. This is to help keep space for newcomers but also to alleviate the emotional strain on the care-givers who have to deal with many of these children dying. 19 The HIV positive children in our care require frequent medication. They often suffer from diarrhoea and become dehydrated. Because of diarrhoea we use an enormous amount of disposable nappies. Another common disease the children suffer from is oral thrush. It affects the palette, mouth, tongue and can spread to the pharynx. This can manifest itself severely and the children's mouths often bleed from the thrush. It is too painful for them to eat and they must then be fed nasally. It is also too painful for them to speak, so even if they are able to tell us their needs they are physically in too much pain to do so. 20 Once the children develop AIDS their skin can become immensely sensitive. Just to touch their skin smoothly and gently in order to comfort them can cause physical pain. As we approach their cot beds, the child will cry before you can touch her - it is her way of communicating to us that it is too painful for us to touch her. It is then that we must start with a progressive program of pain therapy with medication so that at least the child can die in dignity and relatively pain free. 21 In our hospice section, we some-times have a death rate of two or three children in a week. All our children are taught about death and dying at a very early age. We do this because all our children have experienced the death of their friends and they ask us what has happened to their friends. We answer them as honestly as we can and explain to them that the friend has gone to Jesus and will never return. We explain the disease to them by using puppets and by using language that they understand. We explain to our children that they have soldiers in their bodies that fight the disease and that the germs are slowly destroying the soldiers (the immune system). We teach our children that they will feel ill and become sick and that they should take care of each other. 22 At crèche and at nursery school we teach the children in groups about the disease and about death and dying. We use picture books to illustrate the progression of the disease and what will happen to them. Our approach is to allow the children to realise that death is final and that neither they nor their friends will return when they die. After the death of a baby or child we hold a memorial service that the children can attend - they see the dead child's photograph and know that that child will never return. It makes the children quite depressed and we have to watch them very closely to make sure that they settle down. 23 Through caring for the children, we have found that their weak immunity disadvantages them in many ways. What I have observed in relation to the health of the HIV positive children who come into Cotlands’ care is the following: they are retarded in growth and are slow to develop muscles; their milestones are almost always delayed; they regularly suffer from opportunistic diseases such as oral thrush, pubic thrush, gastroenteritis, pneumonia and tuberculosis; they regularly suffer from diarrhoea; they are prone to skin infections; they have enlarged lymphoid glands, spleens and livers; most of them develop encephalopathy, which is the degeneration of the brain; this manifests itself in seizures and has ultimately caused the deaths of many of the children. 24 As many of the families of the children are destitute they do not have the financial means to pay for transport to visit the children. We assist them financially where we can so that they can visit the children as without contact with their family, the children become depressed and their condition deteriorates. We also assist the families financially with the burial or cremation of the child. Some families tell us that they feel stigmatized and alienated from the community and therefore they bring the children to Cotlands to die. They also sometimes request that we cremate the child. Sometimes we realize that a mother has not told the rest of the family what was wrong with the child. On occasion a relative has then come to Cotlands to ask us what was wrong with the child and what happened to her. A death of a child causes disruptions in the families in different ways; sometimes family members blame each other and sometimes there is friction about how to handle the dead child’s body. 25 The staff members bond with the children and their deaths have a traumatic effect on them. This is of particular application to the night staff because deaths usually occur between two and three in the morning when the immune system is at its lowest ebb. Every morning I go to the hospice section to find out if a child has died and I counsel the night staff who would already have washed the child and covered it, telephoned the family and the undertakers to collect the body. 26 I respectfully submit that the individual experiences of some of the children at Cotlands who suffer from HIV/AIDS is relevant to the adjudication of the issues before the Court in the above matter. 27 X, with whom I have developed a close bond, is now seven years old. He was born HIV positive and with a congenital heart disease. He came to us five years ago from a hospital who referred him to us as a terminally ill patient. Because of his HIV status at birth, his heart defect was never rectified by available simple surgery. This surgery had to be performed at an early age. But he was referred to us as terminally ill. He is now permanently on oxygen and his health is starting to deteriorate. He was born one of twins. His twin sister was born HIV negative. Last year X's mother died and on the day of her funeral, his sister complained of chest pains and was certified dead on arrival at the hospital. X has outlived his HIV negative twin. He has seen many of his friends die and he knows too that he will die. He, like all children, is spontaneous. He has not brooded about death but we are available to him and have the answers when he needs them. He talks about his mother and sister from time to time and may become depressed. We monitor him very closely and allow him to talk and to cry. He has seen so much death already and he sees the undertakers come in to fetch the bodies. He knows that his friends are not coming back. He knows that he is going to die. Now that he is becoming ill more frequently he becomes very fearful. That is when he becomes anxious and screams uncontrollably and is inconsolable. It is then that he has seizures. We try not to upset him in any way but the progression of the disease cannot be avoided. 28 L is two years old. He has been at Cotlands for over a year. He too was born one of twins. His was a breech birth. His twin was born perfectly formed but L suffered a physical deformity as a result of the breech. His feet were inverted. Moreover he was diagnosed as HIV positive. Because of this status a medical decision was taken not to correct his deformity by orthopaedic surgery. His mother abandoned him and he was referred to us by Chris Hani Baragwanath Hospital. A year later his HIV status sero-converted and he is now HIV negative. It is however now too late to correct his deformity. 29 B was nine years old. He was admitted with severe nasal bleeding and had been in home-based care in Soweto. His father was in KwaZulu-Natal. The child had moved around a lot because of social stigma. He was at Cotlands for two weeks and the bleeding stopped. He was moved to Nazareth House (another home that cares for HIV positive children) because of his age. He died after three weeks. We contacted his father with whom we were in contact. The family wouldn’t allow him to be cremated. Eventually he was buried in Thembisa. No-one knew where his mother was. 30 The aim at Cotlands is to nurture the children in our care and to love them. We take great care to let them die in as much dignity as is possible under the circumstances. If they do not receive pain relief they die in excruciating pain. We do not know from day to day whether a child will survive, as the child may be happy and smiling one day and be dead the next. 31 Cotlands wishes to make legal submissions in support of its contentions that the following rights are infringed as a result of the appellant’s failure to provide Nevirapine as ordered by the court a quo. 31.1 The right to dignity (section 10) 31.2 The right to life (section 11) 31.3 The right not to be treated in a cruel, inhuman or degrading way (section 12(1)(e)) 31.4 The right to have access to health care services including reproductive health care and the question whether the State has complied with its correlative duty to respect, protect, promote and fulfil this right. 31.5 The right of every child to basic health care services (section 28(1)(c)) 31.6 The right of every child to be protected from maltreatment, neglect, abuse or degradation (section 28(1)(d)) 31.7 The right of every child to family care or parental care, or to appropriate alternative care when removed from the family environment (section 28(1)(b)). ___________________________ STELLA DUBAZANA I CERTIFY THAT THE DEPONENT ACKNOWLEDGED TO ME THAT SHE KNOWS AND UNDERSTANDS THE CONTENTS OF THIS DECLARATION, THAT SHE HAS NO OBJECTION TO TAKING THE PRESCRIBED OATH AND CONSIDERS IT TO BE BINDING ON HER CONSCIENCE. THUS SIGNED AND SWORN TO BEFORE ME AT JOHANNESBURG ON THIS DAY OF APRIL 2002. ___________________________________ COMMISSIONER OF OATHS 1 1