International Patient Meeting Report - 2007, Bad Nauheim, Germany

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The Bad Nauheim Conference Centre

The Bad Nauheim Conference Centre

5th International Conference for Organisations Representing People with CML or GIST - A personal report

The closing dinner

The closing dinner

Finally, a huge "thank you", to all those, including Roger, for the work done in organising the conference, and to Novartis for their funding and support ~ Judith Robinson, August 2007

The thinking behind this conference, organised and funded by Novatis, is that Glivec is used for both CML (Chronic Myeloid Leukæmia) and GIST. Some sessions were for everyone, and some were in two groups, for CML and for GIST representatives. There were about 90 representatives from 24 countries, and the very warm welcome from the German hosts told us that the official language for the conference was "Bad English". It was quite humbling for us native English speakers that only about six people needed interpreters, and many of the presentations were by non-native speakers in wonderful English.

GSUK had three representatives, Roger Wilson, Judith and David Robinson. Roger was on the organising team and had a very active role as moderator and contributor to the discussions, especially in the production of the Bad Nauheim Declaration.

The GIST-specific meetings were:

  • State-of-the-art Management of Gist
  • The Role of Surgery in Gist management
  • Management of Progressive Disease. This included an up-date from Novatis.

Each of these sessions included a discussion.

The key things for me, were:

  1. the amazement expressed by the other Europeans at the difficulties we in the UK are having in getting Sutent and more than 400mg of Glivec. However, the Eastern Europeans and South Americans often have a harder time than we do. In Romania, every patient has to fight for any Glivec, and may have to wait 6 months or more - too long for all, and some die before getting it.
  2. that Prof Jean-Yves Blay from Lyon, has several patients on continuous, but lower than normal, doses of Sutent. The patients themselves find a dose which is tolerable. These lower doses can produce stability and good quality of life. I also heard that there are some German patients using this regime. One gives herself a week off when she feels she needs it. This is an example of real collaboration between doctor and patient, together improving both quality of life for the patients, and medical knowledge. The results from this use of lower doses of Sutent are not published yet, but there is a paper being written
  3. that mutational analysis is getting more available and is being done more often. This has not yet affected the use of 400mgs of Glivec as first-line treatment for inoperable or metastatic GIST. There is thinking that this may soon change.
  4. that surgery looks great fun! Peter Hohenberger gave us almost a DIY instruction talk, with lots of photographs, but it was clear that we "shouldn't try this at home". Then we realised that most of us been at the receiving end. Food for thought, and great gratitude for the surgeons who had saved us.

Then we took Roger's draft of the Bad Nauheim Declaration, and made a number of changes to produce the final document, which we all signed

Finally, one representative from each patient group said a few words about what they were doing. Some groups are very active, some just starting, and GSUK is somewhere in the middle.

The non-GIST specific meetings included:

  • making alliances with other groups
  • running patient groups
  • legal questions about intellectual ownership and patent law
  • patient input into designing clinical trials

The final session was on the emotional effects of having a life-threatening illness. First, Marina Symcox, whom some of us know from the GSI group, gave a very moving account of her own experiences. Then Andrea Schumacher, a psychologist talked about her work with patients.

Then we had to say goodbye. Much of the value of a conference like this lies in the informal meetings over coffee and at the wonderful meals, getting to know face-to-face those you have met by email, and meeting again friends you haven't seen for a long time. The international GIST community is a wonderful force for good in this fight for survival, which we all face.