THE BAD NAUHEIM DECLARATION
On Sunday 1st July 2007 GIST patient advocacy groups from around the world gathered together in Bad Nauheim, Germany, and agreed a declaration of solidarity about access to specialist and appropriate treatment for GIST patients. Sarcoma UK is a signatory to the Declaration along with GIST Support UK.
The Declaration calls for GIST patients to be treated in line with expert clinical consensus, supported by appropriate evidence, whether that is published or not. We believe that an 'evidence-based NHS' implies a commitment to treat every patient in line with the recommendations of specialist doctors and medical researchers and we welcome the support and solidarity of our co-signatories.
In the absence of NICE Technology Appraisal Guidance the NHS requires Primary Care Trusts to make individual funding decisions for each patient for whom a doctor wishes to prescribe either higher-dose Glivec or Sutent following relapse on standard 400mg Glivec. Decisions vary (the so-called 'postcode lottery'), with some PCTs funding treatment and some not. We also have evidence that the quality of the decision-making is even more variable. Debate within a PCT is rarely accompanied by an expert understanding of either GIST or the drugs involved, and sometimes they are biased against patients.
The Department of Health is aware of these issues but is unwilling to address the problem. Sarcoma UK has been informed by the Secretary of State, Mr Alan Johnson, that complaints about PCT prejudice, incompetence or irrational behaviour should be submitted through the NHS Complaints process as he maintains it is not a matter requiring government intervention.