Charity attacks Government stance on Crohn's Disease
20 June 2000
Action Research, the medical research charity, believes the government has missed another opportunity to address the growing problem of Crohn’s Disease by refusing to make the disease Notifiable.
In a debate on the disease in the House of Lords last night (19 June) Lord Burlison, replying on behalf of the Government stated “We are not convinced that (notification) would achieve anything which cannot be achieved as well or better by a voluntary approach to collecting information”.
Anne Luther, director general of Action Research said “We believe that compulsory notification would give us a true understanding of the extent of the problem. We currently only have estimates to work on, and clearly that is not good enough if we are to fight a disease that severely debilitates tens of thousands of people”.
John Hermon-Taylor, professor of surgery at St George’s Medical School and a leading Crohn’s disease expert said “Within one year of making Crohn’s disease Notifiable we would have an expanding, anonymous and accurate database of the occurrence, location, age sex and other important data about Crohn’s disease such as exposure to unpasteurised milk or contaminated water. This would be a vital resource for the epidemiological and other studies that clearly need to be done, and for the early and accurate measurement of remedial actions”.
Current estimates are that Crohn’s disease affects up to 80,000 people in the UK. It is thought that there are 4000 - 8000 new cases every year and that the problem is growing. The weakness of these estimates was emphasised in the House of Lords where the numbers for Crohn’s disease sufferers in Britain varied between 30,000 and 100,000. A large body of evidence suggests that the bacteria known as MAP (Mycobacterium avium subspecies paratuberculosis), which is found in retail pasteurised milk, is a causative agent of the disease. A recent report by the European Commission states that “There are sufficient grounds for concern to warrant increased research activity to resolve the issue (that MAP causes Crohn’s disease in man)”.
Crohn’s disease ruins the lives of sufferers. Symptoms include chronic diarrhoea, daily abdominal pain, weight loss, extreme tiredness and psychological problems.
Action Research has funded seven research projects into Crohn’s disease since 1979, a total spend of over £ ¾ million.
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