6 August 2001
Issued by Department of Health
I would like to welcome the international delegates to our country. We are very honoured to have you here and we hope that you will return to your countries with fond memories of South Africa. I would also like to welcome those of you from other provinces to Gauteng. We are very pleased that you were able to be part of this conference.
Today we observe two important events: an international conference on birth defects and disabilities in the developing world, and the launch of the policy guidelines for the management and prevention of genetic disorders, birth defects and disabilities. The former is a first for the developing world, and the latter a first for South Africa.
South Africa is especially proud to host this gathering, whose objective is to discuss issues of relevance to improving services offered for people with birth defects and disabilities in the developing world. Our constitution espouses as some of its values, "human dignity, the achievement of equality and the advancement of human rights and freedoms" and prohibits unfair discrimination on the grounds of disability. We are therefore honoured to host this conference and look forward to implementing the recommendations that will come out of this conference.
Whilst our problems in the developing world often seem insurmountable and the competing challenges enormous, there are strategies that we can implement in order to improve the lives of our people. Some of these include identifying opportunities for intervention in our various programmes. The management and prevention of birth defects does not belong to one discipline nor is it exclusively a medical issue. There are many interventions that we as members of the community and various professions can make to reduce the impact of birth defects in the family and community.
In a Gender and SADC (Southern African Development Community) document, the links between women's health and birth defects are drawn out and it is stated that data is not always available to give a true reflection of people with disabilities in the SADC countries. However, according to the document, the WHO estimates that 10% of every country's population has one form of disability or another. Some of the common causes of disability outlined in the Gender and SADC document include poor nutrition, poor health, alcoholism, infectious diseases, and overwork of the woman during pregnancy. We therefore accept that we have an ethical responsibility to provide services that address the issue of birth defects and disabilities in a comprehensive manner.
This Thursday (the 9th of August) we celebrate South Africa's women's day. Taking care of the health and well being of women means we enable women to care for the nation. We therefore need to make a concerted effort both as civil society and governments to support women in the many roles they have to play.
In line with the WHO Safe Motherhood slogan "pregnancy is special, let's make it safe", a major emphasis has to be placed on the health of the mother prior to conception as well as during the perinatal period. Prevention of factors that might lead to birth defects, early identification and early intervention is essential to minimise the impact of birth defects, and to improve the quality of lives of families especially in the rural areas.
A major part of raising public awareness on birth defects is done by NGOs who work closely with communities. Caregivers of children with birth defects need community support. Community education on those conditions that are preventable is therefore essential. For example, we need to be able to find out reasons why in the past it was taboo amongst our communities for a young bride to drink alcohol and yet it was acceptable for mature women to do so. How was this taboo enforced and are there lessons we can learn from that? How can we intervene and stop pregnant women from taking alcohol during pregnancy - as this is the most preventable cause of mental handicap?
In 1994, the South African government introduced free health care to all pregnant and lactating women as well as to children up to the age of six. All children are required to have seven points of contact with the health services within the first five years of life where immunisation services are provided to them. This also prevents certain types of disability, such as those resulting from polio.
In addition, a primary school nutrition programme whose objectives include addressing micronutrient deficiencies, parasite infestations, alleviating short-term hunger, and improving school attendance was introduced. There are other initiatives intended to provide for those who are vulnerable in our society including grants for children with disabilities that are administered by the Department of Social Development. Clearly these interventions are not enough and we need to further define what services need to be provided.
Minimum estimates for the birth prevalence of infants with serious congenital disorders are that globally there are at least 7.3 million children born with birth defects annually. Given the fact that most of the world's children are born in the developing world, it means that developing countries need to have services in place for these children. On this continent alone it is estimated that there are at least 1.4 million children born with serious birth defects annually. In developed countries, about 29 percent of these children will die before the age of five whilst another 28% will have chronic problems. Because of lack of facilities in the developing world, the proportion of children with chronic disability and who die early in life are much greater. Those who receive corrective surgery are less than those in the developed world.
The cost to society of genetic disorders, birth defects and disabilities is immense. This includes medical care for the condition and its complications. Some individuals may require special education. Often the mothers are forced to become caregivers and this may mean the loss of income for the family.
We in the developing world need to embark on programmes for the primary prevention of birth defects. The state of poverty that many families find themselves in makes it difficult for them to adequately care for their affected loved ones. We therefore need to learn from each other what models of care have been successful in various parts of the world. We need to consolidate this for the benefit of those with birth defects and disabilities. I hope that this conference will provide the stimulus for the necessary collaborations that will make services for people with birth defects a reality in most part of the world.
The launch of the policy guidelines for the management and prevention of genetic disorders, birth defects and disabilities coincides with the opening of this conference.
The policy guidelines that we are launching today address the prevention and management of genetic disorders, birth defects and disability. They outline the services that should be offered prior to conception, during pregnancy, at birth, in infancy and childhood as well as in adolescence and adulthood. Most importantly they provide a guide as to how genetic services can be integrated into primary health care.
These guidelines are consistent with the essential components for reproductive health as outlined in the International Conference on Population Development (ICPD) programme of action. These include safe motherhood, family planning information and services, prevention and management of sexually transmitted infections.
We need to ensure that we have an adequate pool of health care workers who have skills in genetics. The ultimate aim is to have health care providers in every health facility who are able to recognise these common conditions, manage and refer patients appropriately.
There are specific suggestions made on how genetic services can be integrated into existing services. These suggestions target women of reproductive age and can be offered as part of family planning services. They include:
Tragically when these conditions are not recognised early by the health sector, this influences the way the family deals with the affected child. It is important that families are informed of the condition of their children so that they can obtain genetic counselling and be referred for medical and other supportive care. Health care workers at well baby clinics and those who monitor growth and development can play a positive role by identifying those children with birth defects who were not identified at birth.
Certain conditions only manifest themselves later in life. These individuals therefore need to be referred for appropriate care and genetic counselling.
Although society often views congenital disability as that which fate has dealt to us, there is often much we can do (in a non-invasive way) to try and reduce the risk of having a child with a birth defect.
Today marks the beginning of a new chapter in our health services. We look forward to the collaboration of different disciplines in caring for those with genetic disorders and birth defects. We are aware that this policy can never be an effective document without the commitment and involvement of communities in issues that affect their fellow citizens especially families that have children with disabilities. This policy much challenge communities beyond awareness. We therefore call upon communities to come up with initiatives to complement this policy so that we create a partnership, which will improve the quality of life of our children.
I now call on Mrs Desiree Cindi, mother to Vusi who has Down syndrome, to receive a copy of these policy guidelines on behalf of parents and affected individuals.
I declare this first international conference on birth defects and disabilities in the developing world - open. I trust that your deliberations here will benefit those who are most vulnerable amongst us.
Thank you