5-6 June 1998

Contents: How to react after having read this report Introduction and Overview Validation of Phases I and II Updating The Nine Dissonances Dismantling the Welfare State Increased life expectancy Under-represented need groups Innovation versus tradition Leadership and power Networking versus autonomy Integration versus specialization Prevention versus Treatment Ethical Issues

Substantial changes have come about in content and format between Phases I, II and III. It is hoped that these changes are part of the learning process which was built into the design of the project. In addition, at least in part, the changes are due to policy developments in Flanders and in Phase III we also welcomed new members to our expert group The following now constitute the Flemish team:

• Nico Carpentier (Co-ordinator of Flemish research): UIA - Department of Political and Social Sciences
• Katy Declercq: De Witte Raven
• Els Dereuwe: Prins Leopold Instituut voor Tropische Geneeskunde
• Rob Gielen: IPAC (the Flemish Aids Co-ordination Centre)
• Eric Van Wijngaerden: UZ Gasthuisberg
• Koen De Schrijver: Administratie Gezondheidszorg
• Chris Lambrechts: Aidsteam

The changes in format and structure of the meeting are the result of the cumulative experiences of the preceding Phase III meetings with the Swedish and Austrian teams. We now concentrate on nine specific Dissonances and we will organize discussion around these nine themes.

The workshop started with a brief review of project's OBJECTIVES and a reminder of the GROUP FEED-BACK METHOLOGY. This was followed by a DETAILED SUMMARY by Nico Carpentier of the outcome of Phases I and II using the format of Resolved and Unresolved issues which was the structure we used during the these early phases of the project. This review had as its major objective, the validation of the conclusion that had been reached up to that point. This feed-back exercise gave members the opportunity to question some points and elaborate on others. We will come to this later.

Next, Nico Carpentier, again using overhead transparencies, initiated a DISCUSSION ON CHANGES that had occurred since the previous phases (seven months since Phase I and seven and a half months since Phase II).

The final and major part of the workshop discussed in some depth THE NINE DISSONANCES which now form the structure of the project which will attempt to prioritize the scope for further work on HIV/Aids.

Validation is a central part of the Group Feed-back Analysis methodology. All participants of the Phase I and II workshops had been sent a summary of the meeting and conclusions and were asked to let the research team know of any inaccuracies or omissions. This workshop gave an opportunity for a second validation; it also had the objective of acting as a reminder of the content of previous discussions.

The broad analysis so far was accepted as accurate, but a number of corrections from Phase I and II were noted:

• Strategic planning for policy is still unresolved
• Access to expensive medication is only available to people with health insurance, but institutions usually try to help asylum seekers or illegal immigrants.
• There is no policy for compulsory testing. However, in practice testing is often insisted on for instance by Gynaecologists or Dentists
• There seems to be more emphasis on Prevention and Health Promotion than on Care.
• There is an ambivalence towards the increasing dominance of technical issues(medication)

Figures 1, 2 & 5 from the Louis Pasteur Public Health Institute (TRIMESTRIEEL RAPPORT N° 47 in Dutch or in French) provide some useful up to date statistics for Belgium, but are not currently available for Flanders.

The most important change since Phase I at the end of October 1997 is the judgement of the expert team that the pessimism then voiced about funding may not be justified. There was some division of opinion. Some members of the group expected that full or adequate funding will become available and that, in Belgium, the Welfare State will not be dismantled. Critical decisions will be taken by the autumn. However, other members pointed out that there will be no new funding for scientific research, though policy oriented practical research may still be carried out and that in any case future funding for HIV/Aids will depend on the plausibility of the arguments and the competitive position vis a vis other serious health hazards.

There was an urgent need for research on unfulfilled needs, the cost of treatment and care (for instance a comparative analysis of the cost of dealing with measles compared with the cost of dealing with HIV/Aids ). However, on balance the dominant position now was optimistic. The newly established LOGO groups (operational by September) would get substantial Government funding. The optimism is based on the understanding that they will be financed with additional money. For an explanation of the Logo groups, see later.

Nevertheless, in expectation of future trends, some mergers between organizations had taken place and others are planned.. The Ministry encourages co-operation between organizations, but does not push for mergers.

Another important development is the current emphasis on General Health Promotion. In effect this virtually excludes policy or programmes oriented specifically towards Aids/HIV The present Minister's emphasis on General Health Promotion will be carried out through LOGO groups which will be established in all parts of the country and will probably be operational by September. The Logo groups will concentrate on health priorities like:

• the prevention of smoking,
• advocacy of healthy foods,
• breast cancer screening,
• prevention of accidents (traffic and other) and
• decreasing the number of infectious diseases: vaccination against measles.

It is noticed that Aids/HIV is not specifically mentioned!

IPAC (the Flemish Aids Co-ordination Centre) has been asked to collaborate with the Logo groups. This approach to integrating all health care issues has also come up in the other countries under the term "Normalization". We are advised not to use the term "normalization" since, particularly in relation to homosexuals, it has a different meaning.

The role of IPAC is uncertain at the moment but will be clarified by October.

Ten "new" Flemish Aids project were evaluated and accepted by IPAC and have been put to the Ministry of Health for approval. Latest information from Nico Carpentier (July 1998): the Minister has accepted the general concept. She has now asked her administration and IPAC to work on the translation of the ten proposals into (mostly) quantitative indicator/targets. Her acceptance of the concept also seems to mean an acceptance of the new strategic plan. There are still some concerns about the drug users’ project. There is a problem about the impact of artificial optimism about new medication created by the media.

The numbering of dissonances and the sequence of discussion does not imply any ordering of priorities. Although some tension relating to each of the nine dissonances was discernible in all countries and, as we shall see, some are important in all, there are nevertheless substantial differences in the impact some of the dissonances have in the four countries. We hope that by or during the final meeting, a re-conceptualization of content may lead to a smaller number of dissonances.

This item which had come up very strongly in the other three countries, was not identified as a major threat for Belgium. It was felt that the title is a slogan and, as yet, no evidence that the Welfare State is under threat and that funding will be discontinued or substantially reduced. This was the majority view, but there was some dissent. It may be too soon to make a final judgement; much will depend on the funding and structure of the LOGO groups and of the main organizations working in this field. (See Updating, above).

As a result of recent improvements of medication, many HIV positive people can now expect to live for a considerable time; previously they would die rapidly. The new treatment is complex and for many has serious side effects. Not everybody can benefit from the triple drug treatment, but those who can sustain the regime, have a considerably increased life expectancy

As a consequence, there has been an extensive shift in the provision of care and a greatly increased need to spend time with each patient to ensure that the drug treatment is understood, the sufferer is adequately motivated to carry out the laborious treatment and the procedure is carefully monitored.

Some country teams have noticed that this new development has led to a shift of emphasis towards the technology, that is to say the medical treatment and the neglect or relative neglect of the psycho-social care.

At first this dissonance was not seen to be important in the case of Flanders. However, it was clear that, the result of the increased life expectancy, has tripled the strain on organizations. More resources have had to be used to look after patients. General Practitioners do not have the time or the expertise to handle this problem ("You cant make a psychologist out of a doctor"). However, there are too many doctors in Flanders, and this could be one of the reasons the Minister wants to use them. It is not clear how this can be done. There is also the question of the role of the GP in prevention and in secondary prevention, his/her psycho-social skills, whether she/he could be trusted with intimate issues, etc..

Furthermore, more money is needed: there is shortage of Buddies and extra resources for dealing with the prolonged time needed for "care". GPs do not get extra money for spending extra time with Aids patients.

The quality of care varies considerably, it is high in Reference Centres, but low in Social Welfare Hospitals.

Longer life expectancy based on new treatments have led sufferers into believing that they are cured! This leads to incautious sexual behaviour, even by non-infected people. In some parts of Flanders (Antwerpen) 80 GP's have started an information network to exchange ideas on new treatment; they are planning to start a new telephone help line.

In summary, it seems that the original denial of a conflict between medical versus psycho-social treatment has to be qualified.

This problem was at first not seen to be a major issue in Flanders. A number of initiatives have recently started. The sub Sahara groups are the most vulnerable and are receiving help. Regular meetings are now starting. Immigrants from eastern Europe are not numerous, but boy prostitutes from Romania are a problem. Methadone is now available free. One of the ten new proposals to the Ministry deals with HIV in sub Sahara immigrant groups. HIV prevention in prisons is now the subject of a project.

Sex education is now slowly and belatedly coming into schools although until recently, "Proges" (health in schools) did not cover sex education. Now it is meant to be included. There is research evidence that early sex education does not lead to early sex.

However, some members felt that although this dissonance is not now a significant problem, it may be wise to anticipate the future. Average condom use is only 1.2 per person per year including homosexuals, drug users cannot take the new medication, there is no needle exchange (but this does not seem to be a problem?). HIV/Aids prevention in prisons is limited to drug users.

In summary: while the group felt that this dissonance was not critical in Flanders, many of the arguments were based on very recent- and as yet untried- developments and may not adequately reflect future needs. (It also seems that there was no discussion of the specific problem of the illegal status of immigrants in obtaining advice or help??)

The Buddy system has been successfully extended, it is now used with Africans and with women who need help, and has even been applied to areas outside HIV, for instance the final stages of cancer.

Other innovations are the "peer help system" used among prostitutes. Some prostitutes are chosen to influence their group to practice safe sex. There is a "Payoke" organization for female prostitutes in Antwerp; a prostitute is now working for Payoke.

There was an Aidsteam initiative to give some boy prostitutes extra skills to advise their peers, but it failed. The "peer" structure seems capable of further innovation and experimentation. Aidsteam started a campaign to "negotiate safety" (in return for giving up the use of condoms, steady relationships are being pledged). This is a new, more sophisticated prevention message.

However, there is a shortage of Buddies, particularly in Brussels, and French-speaking Buddies are in short supply. It is not certain that the Buddy system can be successfully extended to African groups. There is now a tendency to assign two Buddies to one infected person because of extra life expectancy. This increases the shortage of Buddies.

This issue is very complex in Flanders because of the separation of power between Federal and Regional government. There was an interesting disagreement among our group of experts on the de facto legal structure and its repercussions on the administration of the health system (each expert drew his/her own diagram of the power structure and they turned out to be significantly different)

However, the exercise concentrated the minds and led to some convergence. It was agreed that the Ministry has most legal and de facto power and the IPAC is the main organ working under the Ministry, but independent of it. IPAC is not a control mechanism on behalf of the Ministry but has a communication function among the various groups working with HIV/Aids and transmits its assessment of the situation to the Ministry.

Ministers change; and every time there is a new policy and a new Cabinet of advisors. The permanent civil servant advisors are not as influential as the political advisors and, perhaps, this is a pity. The civil service has a degree of autonomy: it can defend an area of work (for instance HIV/Aids), but the Ministry has the last word.

The important centralized LOGO structural system is the brain child of the Ministry and will be imposed on Flanders. The main function of LOGO groups is to integrate all the prioritized five health care areas in one organization. They are a forum (see under Updating above)

The Ministry is also keen on having an evaluation system and is devising the indicators for this for each of the areas handled by LOGO. The emphasis is on "Cure". "Prevention" is less central.

Does the separation of power between Federal and Regional government impede networking between organizations and does it reduce medico-psychosocial co-ordination? No firm view on this emerged. See next section on Networking.

In general, in Flanders the need for networking is greater than the need for autonomy. This is partly due to the Federal political structure (see Leadership above) but there are limits to the acceptance of networking.

It was felt that networking is needed to achieve change, for instance in the introduction of the new medication which is handled at the Federal level but has to cover French organizations. There is need for networking between Federally supported Hospitals with their Aids Reference Centres and Social Welfare and Social Security on one side and Regional organizations.

In Flanders, networking is accepted as a preferred goal, but can have negative consequences. Sometimes it is better to make ones own decision because the search for consensus imperils progress.

The group reached a resolution of this dissonance as follows: Networking is important and desirable for progress, as long as the drive for consensus is kept in check.

Integration (normalization) is seen as desirable if the structure is appropriate. Ideally, some experts felt, a client should be able to go to one place for all health issues (the question was not addressed whether, in practice, people with a particular problem, for instance smoking, or a venereal disease, see this as a "central health issue" and will therefore go to a central place where their problem are likely to be given less anonymity)

Even if the integrated structures deal with the majority of health issues, this may leave out important minorities which need specialization of knowledge or experience or which pays attention to linguistic-cultural differences among the clientele. The rate of change in treatment and understanding HIV/Aids is still enormous and the leading edge knowledge cannot be achieved except through specialization.

It is useful to distinguish several types of integration. Firstly, there are two types of Content Integration: (i) integration of handling sexually transmitted diseases (STD) and (ii) health care in general including STD. The integration of STD on its own is more feasible and functional with young people and in areas like sex education in schools and with culturally sensitive minorities. Integration of all health care issues assumes that people are rational and perceive health as a unified whole and are motivated by the incentive of "health".

Secondly, there is Structural Integration: for instance the work of the Tropical Institute could encompass asylum seekers and unofficial immigrant groups from Africa and other tropical countries. In Schools there can be structural integration in the syllabuses of biology and religion (morals). In Hospitals there can be structural integration between medical and psycho-social requirements and skill training.

More generally, it was felt that a distinction can be made between (i) work with highly differentiated High Profile Groups like prostitutes, ethnic minorities, drug users etc who need specialized attention and (ii) low differentiated Low Profile Groups like: young people, women, the general public where a degree of integration may be appropriate.

The question is whether in Flanders the introduction of a LOGO structure will make these useful distinctions.

It is of course obvious that one needs both. The question is the emphasis given to one or the other in funding, advertising and in the structure of the organization for helping people suffering from HIV/Aids. The medical tradition is to concentrate on treatment though extensive lip service is paid to prevention. In Flanders there is also the circumstance that treatment is funded federally.

A distinction can be usefully made between (i) treatment for survival (which may be predominantly medical) and (ii) treatment to improve the quality of life which includes coping with increased life expectancy by giving attention to psycho-social needs which facilitate the success of anti viral drug treatment. Under the quality of life counselling one can include work on reducing secondary prevention. Prevention cannot easily be included in the treatment for survival.

Evaluation and, perhaps research, of the work and success of both prevention and treatment is needed. It was felt that the impact of prevention is more difficult to assess and therefore requires more resources. By tradition, treatment is more easily accepted and is often the priority given by governments and funding bodies.

Ethical issues have not been extensively on the agenda of discussion, but they exist.

It is thought that about half of all Flemish dentists refuse to treat people with HIV/Aids. Similarly with gynaecologists.

This subject was mentioned previously where it was pointed out that while there is no legal provision for compulsory testing, there is no firm policy against it and it is often carried out. What are the rights of dentists and gynaecologists and what are the rights of patients? How much information should be available to whom, on what and when?

Perhaps these ethical issues should be more widely discussed.

Latest information from Nico Carpentier: The day after the June workshop ended, the Minister of Health announced he was working on a new bill of patient rights.