European Gaucher Alliance Meeting, Jerusalem 2000


European Gaucher Alliance
Gauchers News Contents


Eleven countries were represented by their patient associations at the European Gaucher Alliance (EGA) meeting which took place in Jerusalem on 5-6 September 2000.


Although entitled the first EGA meeting, members had met on three previous occasions, in Trieste in 1994 when the EGA was formed, in Maastricht in 1996 and Lemnos in 1999. However this was the first time that the EGA meeting was held separately from the European Working Group of Gaucher Disease Workshop.

After each representative from 11 member countries spoke about their country's achievements and problems regarding Gauchers disease, Raul Chertkoff summarised their views by saying that the principle goal for the patient

support groups is to achieve treatment for all patients who need it. It is necessary to inform doctors, carers and patients about diagnosis and treatment.

Patients Should Have Rights

He said that lots of doctors still do invasive tests, for example bone marrow aspiration when a simple blood test would be sufficient. Also doctors gave incorrect treatment because they did not know that enzyme replacement therapy exists. Fern Torquati (Italy) said some patients were frightened to say no to invasive tests or to question their doctor about appropriate treatment.

It was agreed that patients should have rights and be seen as consumers. They should be given as much information as they wished and could be provided with. Several avenues of support are available for families from friends, Associations, the church or other religious establishments and government social security.

It was pointed out that in some countries patients have to pay for medical tests. Wojtek Oswiecinski said that in Poland treatment is paid for by the Government which also pays a small amount ($50 a month) for social help, for example travel to hospital. In other countries benefits were paid if someone could not work. Kate Theoharis said that in Greece patients were keen to obtain additional financial help from social services.

Publicising Gaucher Disease

The problem of how to find patients was discussed. It is possible that some have heard of their national patient support group but do not wish to come forward (they may be receiving treatment or not) and some may have been misdiagnosed or not treated properly. The UK Association found patients by sending information to medical journals and newspapers (both national and local). The internet has also been useful for giving out information and locating sufferers and their families.

Dorit Levi (Israel) said that it was difficult to publicise a disease like Gauchers because it was not 'sexy'. Prenatal genetic counselling and screening for Gauchers disease was common in Israel.

Home Treatment

The topic of home treatment was discussed. Ria Guijt (Netherlands) said that if possible, home treatment should be promoted and if necessary doctors, government health authorities and

medical insurance companies could obtain information about the experience gained in other countries. It is much easier for a patient who has to travel a long distance to receive infusions at their hospital to have treatment at home. Local general physicians should become more involved in the treatment and support of a patient.

Benefits

The benefits of having special conferences for Type 3 families and regional meetings were discussed .

Susan Lewis said that the UK Association's committee held 'Doctors Meetings' where they could talk with a number of doctors together about different topics. This has been successful. It was agreed that each Gauchers Association should establish their own national Scientific or Medical Board which should meet regularly with them.

Future goals and aims

The needs and goals of the EGA and individual member countries were discussed and are summarised below:

1. Information

2. Specialist Centres

3. Genetic Testing

For diagnosis and for pre- and anti-natal testing should be available if necessary

4. Treatment

5. Emerging Associations

6. Meetings

7. Co-ordinator(s)

8. Independence

Independence from pressure from external forces, for example doctors, government, pharmaceutical industry.

9. Funding

Closing Comments

Raul Chertkoff was thanked for his hard work and dedication in making the meeting successful and helpful.

EGA Presentation to the EWGGD

Jeremy Manuel from the UK Gauchers Association spoke of the EGA's aspirations for Gauchers patients in Europe and further afield.

He said that the role of the Patient Association is one of information provider, to collect information on the disease, treatment, specialist centres of excellence and other relevant details which it can then pass on to patients, families and doctors.

As the coming together of patients in individual countries has proven to be beneficial to patients nationally, the unification of the European Associations has served to benefit patients in Europe. By speaking with one voice, more can be achieved.


European Gaucher Alliance
Report of 1999 Meeting
List of Gaucher's Associations Worldwide
Gauchers News Contents

Source: Gauchers News March 2001.
© Copyright European Gaucher Alliance 2001