Foetal Alcohol Syndrome: briefing

Meeting report

HEALTH PORTFOLIO COMMITTEE
4 April 2000
FOETAL ALCOHOL SYNDROME: BRIEFING

Documents handed out
The Impact of Foetal Alcohol Syndrome on the child: Dr C Adnams (Appendix 1)
The 5 P's of FAS prevention (Appendix 2)
Presentation of the Wellington FAS Task Team (Appendix 3)
FAS and the experience of the DOPSTOP Project (Appendix 4)

SUMMARY
Foetal Alcohol Syndrome occurs when a pregnant mother exposes an unborn child to excessive amounts of alcohol. Research is concentrated primarily in the rural areas of the Western Cape, where the condition is prevalent. Although the condition occurs as a result of alcohol abuse, generally, a major contributor to the problem is the ''dop system'' used by farm owners to pay their workers. Although this system is now illegal, it is not properly enforced by the police.

The approach to dealing with the problem must be holistic and multi-sectoral. This means that it is not only the abuse of alcohol which has to be addressed, but also the social and developmental problems. The goal of organisations working in this field is primarily a preventative one, although the rehabilitation of adults with Foetal Alcohol Syndrome is also addressed.

MINUTES
Impact of Foetal Alcohol Syndrome on the Child
Dr Colleen Adnams of the Child Health Unit Developmental Service, explained that Foetal Alcohol Syndrome occurs when a pregnant mother exposes an unborn child to excessive amounts of alcohol. The foetus is more vulnerable to harmful effects of alcohol at and immediately following conception time, before the mother knows she is pregnant.

Foetal Alcohol Syndrome (FAS) is characterised by the following defects in a child: permanent growth stunting; cranio-facial deformities with distinct facial features; joint, hearing and nervous system defects; brain damage.

It affects the child's IQ and they experience learning difficulties and behavioural problems such as being hyperactive. They perform badly and show signs of low self esteem and withdrawal. In some instances children have hearing difficulties and mental sub-normality and would require lifelong care and government grants. As they grow older they become dependent on others for support and have difficulty adjusting to society. This manifests itself in deviant behaviour and being in conflict with the law. In the US studies have shown that about 90% of FAS adults have difficulty finding jobs and become dependant on others. A child requires special care early to minimise the severity of effects of the condition.

Broader Context of Foetal Alcohol Syndrome
Professor Denis Viljoen from the Foundation for Alcohol Related Research,
pointed out that FAS has no ethnic boundaries but can be totally preventable.
Diagnosis of FAS occurs where a woman drinks heavily during pregnancy. In most instances the mother who abuses alcohol has also suffered physical abuse. An audit was carried out in the Western Cape areas of George/Oudtshoorn, Cape Flats, West Coast/Winelands. Out of the women interviewed in these areas, more than a quarter of them were drinking heavily during pregnancy. Another audit was carried out in 12 schools in Wellington. The audit showed that 5% of children entering school had FAS. It costs the Western Cape economy R14 billion per year to deal with FAS.

Conditions that are common in areas where these audits were taken are poverty, poor education, lack of decent housing. The condition is not caused by drinking daily but by a heightened blood alcohol level caused by excessive intakes of alcohol usually occurring over weekends. The effect or damage to the different body organs in a child depends on the stage at which the mother drinks during pregnancy. Brain damage however occurs at any stage of pregnancy.

Dr Nathaniel Khaole, a researcher at the Foundation for Alcohol Related Research, identified what he referred to as the ''5 P's'' of FAS prevention.
1) Public education - Pregnant mothers, primarily, are the target group. The idea is that they should be educated by being told about FAS and the effect that their drinking can have on their unborn child.
2) Professional training - Health workers (such as doctors, nurses, and social workers) should be trained to deal with people who have the condition, and their families. Teachers should also be trained, as they are the ones who have to deal with these children at school.
3) Public policy - This is where the Portfolio Committee can play a role. Dr Khaole said that FAS could be used as a ''political campaigning ticket'' by all of the parties, working toward one common goal.
4) Programmes and services - Central, provincial, and local government must initiate and sustain these programmes, and NGOs and community based organisations must also get involved. Because FAS is not only a health problem, multi-sectoral programmes are needed.
5) Parent and citizen activism - This refers to advocacy groups. Dr Khaole said that every doctor is an advocate for children, and politicians are advocates for everyone else.

Presentation by DOPSTOP
Dr Leslie London, Chairperson
This organisation arose from the farming environment, in reaction to the fact that workers were paid with alcohol, instead of money. The project is now a collaborative approach between NGOs and other community-based organisations. DOPSTOP tries to address the problem of alcohol abuse holistically. Thus, they entertain a multi-disciplinary approach, in that they do not only focus on the alcohol abuse of the farmworkers, but also the developmental and social problems which are related to such abuse.

Ms Margie Dausab, Co-ordinator
Some of the areas which they embrace are research and education and training.
In 1998 they conducted a survey, examining the health of the children on 56 farms. They identified various features of FAS in a significant number of these children.

The organisation is aiming to develop support structures for the families of children with FAS. They said that it is not uncommon for children as young as 8 years old to come to school drunk sometimes. In such cases, the teachers have approached DOPSTOP for assistance in dealing with these children.

A particular case study of a Stellenbosch family dealing with FAS was given: A 28 year old single mother gave birth to a baby who weighed only 1800 grams. The child has severe health problems including tuberculosis. The problem is aggravated by the fact that the mother is not taking the child for follow-up treatment. It is suspected that the mother also suffers from FAS. Although the farm has stopped paying the woman with alcohol, she is already an addict. Further, there are no specialised schools in the area to deal with FAS children. The result is that the child will now be a burden on the state for frequent medical treatment.

Certain FAS problem areas which have been identified
- It is specifically at the farm schools that there are many FAS children.
- They cannot meet the needs of these children.
- There are also adults in need of rehabilitation.
- The social context of the problem is something which must be considered. The culture of drinking and the legacy of the dop-system will have to be addressed when trying to combat FAS.
- They are targeting the youth, who were raised in an environment of alcohol, and are trying to assist those who already have the problem.
- There is a need for the social infrastructure to be improved. The idea is that if other forms of recreation are developed, drinking will be considered less of a social activity.
- The Departments of Health and Social Services are needed to provide financial and political support.

Wellington FAS Task Team
Ms Zelda Fortuin, FAS Task Team chairperson, said that ''any person with any sense of human rights would reject the dop system.'' The Wellington FAS Task Team wants to reduce the incidence of FAS in the Wellington area specifically (they decided to work within a specific geographic area). The work that they have been involved in to accomplish this goal is the implementation of life skills training, that is, training people to take charge of their lives. At the moment however, no-one is employed full-time to manage this project. Also, none of the finances which were promised to the organisation were forthcoming. A problem they experienced with educating the farm workers about FAS, is that they cannot freely get onto the farms to deal with issues such as health promotion and rehabilitation. Another issue that they feel is necessary is the introduction of sport and recreation in these farm areas as the primary source of recreation at the moment is drinking.

The organisation has established a rehabilitation group for people diagnosed with FAS. The problem was that people who were diagnosed had nowhere to go. This month the Task Team is in the process of starting a Stimulation Centre which will be visited by people with the condition on a weekly basis. They are also involved in Parenting Skills Training which takes place on a monthly basis. Ideally, they want to train community people to work with these people. Ms Fortuin noted that they wanted FAS to be as high as possible on the government's agenda.

Comments by National Department of Health
Professor Melvin Freeman, Directorate on Mental Health and Substance Abuse, said that the collaboration between universities, NGOs and government toward a positive solution was very exciting.

1998/1999
During this period they had been part of a bi-national commission with the United States which they had reviewed local and international information about FAS. They designed and printed pamphlets about FAS, and distributed 26 000 posters in four official languages (English, Afrikaans, Zulu, and Tswana). They also launched a national awareness campaign, and have started training health workers in the various provinces.

1999/2000
They had transferred funds to the Foundation for Alcohol Related Research to allow them to continue their research as it is important to know what the national prevalence of FAS is. They have also completed a video, which is to be shown in clinic waiting rooms (their research has shown that clinics have the facilities to play the video). Radio and media interviews were also conducted to increase public awareness of FAS.

Discussion
A committee member commented that black people were being used as guinea pigs in these studies. She said that white people consumed alcohol too, but that this was not being shown. To demonstrate her point, she referred to the example of AIDS, where statistics were always cited amongst black people. She then asked what the effects of traditional beer were and what the Department of Health was doing about the ''dop'' systyem.

Responding to the ethnic issue raised with FAS, the panel said that the problem presents itself in poorer communities. Historically, these are black areas.
There is however, a background risk for any population group, of 1 in 1000 children being affected (this ratio is the same as the ratio for Downs Syndrome). Thus, the background risk for all communities is the same. In the Western Cape, the rural coloured population is mostly affected primarily because of the dopsystem. In Gauteng, areas which seem to be affected are Diepsloot, Soweto, Westbury, and Lenasia. The latter two areas have a mixed population of Blacks and Whites.

Professor Freeman said that research on homebrews was being conducted, and that CSIR was assisting them in this regard. However, before any of the research results are made public, they will have to do more research. He did say that the general results indicated that some of these brews had an alcohol content of 30% (over the counter liquor has an alcohol content of approximately 6%). He said that there have also been reports of battery acid going into these brews.

Dr Jassat (ANC) commented that they may want to consider adding a sixth ''P'' to to the list, namely, prohibition. He said that in Fish Hoek, no bottle stores were allowed, and that perhaps this was a way out.

Ms Marshoff (ANC) asked where FARR's research funding came from, and, whether any money was given by the Department of Health. She commented that the Departments of Education, Labour, and Welfare should also be involved in this issue and noted that the intervention strategies seem to be concentrated in the Western Cape, and not the rest of the country. Finally, she asked whether there was a relationship between the occurrence of FAS, TB, and AIDS in a person.

Funding for programmes was described as being a major problem. The two major funders of FARR are the National Institute of Health and the Centre for Disease Control in America. Small grants come from the Department of Health. The liquor industry also provides some funding support, however, this amounts to less than five percent of their budget.

Dr Khaole said that the intervention programmes have to be multi-faceted, and, as such, the research that he is currently involved in deals with the manner in which alcohol is broken down in the woman's body.

Professor Freeman said that, in the Western Cape, the research was initially conducted to identify whether there was a problem or not. The idea is that you must know what the problem is before you spend too much money in a particular area. Thus, the path is to first establish the prevalence of FAS (the results of the research), and then to assist provinces with more research if it is necessary. This was also going to be done in Gauteng, then the Eastern Cape and Northern Cape.

Ms Fortuin said that there is a relationship between HIV and FAS because people with FAS cannot make responsible decisions for themselves. Professor Viljoen said that HIV was more common in the North than in the Western Cape. However, alcohol affects the immune system. AIDS, he said, does the same thing, and tubercolosis is rife amongst certain communities. Because of the combined effect of these three, he predicted that the HIV rate in the Western Cape would rise from being the lowest in the country to being the highest.

A committee member criticised NGOs generally, saying that they did not have the capacity to mobilise on the ground level and that they ''never get the real people''. She asked how they integrate their programmes with the Department of Education, and, whether there were other drugs which were detrimental to children if taken when their mothers were pregnant with them.

The general response from the panel was that they have liaised with each otherbut that they have not done enough of this. Professor Freeman said that other problem drugs did exist (such as cannabis). The purpose of the briefing that day was to deal with FAS. He noted however, that there were other programmes.

Dr Rabinowitz (IFP) posed the following questions:
- Are the effects of FAS reversible?
- Is there a specific alcohol level at which the foetus becomes endangered?
- Regarding the Dopsystem, is there not a danger of overfocusing on this, rather than alcohol abuse as a cause of FAS.
She commented that there seemed to be a need for parenting skills training, and, that the idea of the prohibition of alcohol could be combined with a notion such as ''Pagad''.

The response was that there are other causes of alcohol abuse, but ''dop'' is a major cause in the Western Cape and a very important contextual issue.

The response from FARR was that Foetal Alcohol Syndrome is totally preventable, and that prevention was the goal of the foundation, and not really reversing the effects. They did not know at which particular level the presence of alcohol became a danger to the foetus. This is due to the fact that alcohol affects different people differently as everybody's metabolism is not the same.

A committee member commented on the importance of awareness for teachers and their ability to identify children with mental retardation. She asked if they were educating farmers who were still providing alcohol to workers.

The reply wasthey are looking at programs for farmers, where farmers who stopped doing it can explain the benefits to other farmers. In any event, the dop-system is illegal (it falls under the Department of Trade and Industry), but more enforcement of that law by the police is necessary.

Dr London said that they had submitted a proposal to the Labour Portfolio Committee that the prohibition of the dop-system be included in the Basic Conditions of Employment Act, but this had not been done.

He added that in 1995 a number of workers were poisoned because the dop given to them had poison in it, but the health services in the area had refused to take up the issue and act against the white farmers.

Ms Njole (ANC) suggested a reduction of the content of alcohol in liquor, and
asked whether legislation controlling this (the content of alcohol in alcoholic drinks) would be helpful to combating FAS.

Professor Viljoen said that one could legislate on this issue, but, people could simply pep it up at home. Thus, regulating alcohol content will not solve the problem. Solving the problem was an educational and cultural matter.

Professor Freeman added to this, saying that if the alcohol content is lowered then people who drink to get drunk will simply drink more. The one aspect is that they will have to buy more to get drunk, so they will have to spend more money. If liquor is more inaccessible, then it might mean that people will drink less. He indicated that his personal view was that the tax on liquor should be used for alcohol abuse programmes.

Other comments which arose from the meeting were:
- The Department of Education can influence the implementation of programmes and projects in schools.
- In rural areas, remedial classes had been taken away. Thus, some sort of training institution is desperately needed.
- The Chairperson said that the dop-system was something that was part of the social fabric, and that it was a subculture which had been deliberately created.
- Dr Jassat commented that the issuing of liquor licences was a provincial competency and that it was perhaps too easy to get a liquor licence. All that was needed was a report from the health department, and a report from a police officer. With these two, one could establish a liquor outlet. The problem was that there was a great deal of corruption in these matters as officers could easily be bribed.
- Ms Njole said that they were dealing with something which has been institutionalised, and, that what they needed was something along the lines of tobacco legislation. The effect of this would be to conscientise people about the dangers of drinking.