Question: What is the Insulin Dependent Diabetes Trust?

Jenny Hirst: The IDDT was formed in 1994 with the aim to help people who can only use natural animal insulins because of the adverse reactions they experience with synthetic insulins made by genetic modification.

These were introduced in 1982 and some people have severe adverse reactions to them and yet all too often their doctors don't listen to them and these reactions have never been acknowledged.

Question: What are your main campaigns at the moment?

Jenny Hirst: At the present time we are trying to maintain the on going supply of animal insulin because there are 30,000 people using it and the main supplier, Novo Nordisk, is considering withdrawal from this country. They have already withdrawn it from most other countries around the world.

Question: What would be the implications if this insulin was withdrawn?

Jenny Hirst: For about the 30,000 people, and possibly more, who can't use synthetic insulin they would have no alternative but to be forced to use it.

That would mean knowingly subjecting themselves to the severe adverse reactions which affect their health in the long term and their quality of life in the short term. This will adversely affect their families as well.

Question: How are you campaigning to prevent this happening?

Jenny Hirst: Our members are lobbying their MPs to really draw attention to and raise awareness of this situation and the need for continued availability of animal insulin.

Unfortunately they haven't had a lot of support from the medical profession, because as we say they don't really accept that the adverse reactions occur. We, the trustees, have also met with various MPs who are being very supportive.

Question: Is this grassroots approach successful or do you need to look at alternative forms of campaigning?

Jenny Hirst: We have tried almost every other approach. Over the years we have written to the Medicine Control Agency, now the MHRA, and the only response we get from them is that they are continuing to monitor the situation but that is really unacceptable.

Their monitoring of the situation is probably looking at the adverse reactions reports on yellow cards which is an underused system anyway - plus the fact that if our members aren't believed by their doctors then their doctors aren't going to send in yellow cards. So it is an unsatisfactory method all round.

Question: Is there enough awareness surrounding this issue?

Jenny Hirst: The issue is whether people are being given the choice of insulin treatments and, more importantly, an informed choice of treatments. The majority of people are not given information about animal insulins and are automatically prescribed synthetic insulins.

Question: Why does the pharmaceutical company want to withdraw from supplying this insulin, are their problems associated with this insulin?

Jenny Hirst: No, animal insulins have been used for 80 years since insulin was discovered but it is more expensive for the manufacturers to make.

The GM insulin is easier and cheaper to make but they sell it to the NHS at a higher price. So it is more profitable for them and their decision to remove animal insulin is entirely commercial, something they have never denied.

Question: What successes have you had in this campaign?

Jenny Hirst: We have finally achieved a meeting with health minister Rosie Winterton, which is going to take place in December.

This is due to the persistence and determination of the lobbying of our members. Our members are key to the campaign, and understandably so because peoples lives are going to be very adversely affected if they have to use an insulin which doesn't suit them.

Question: How much support do you get from the government?

Jenny Hirst: Very little, which is why we have had to go through individual MPs. We have had meetings with David Hinchliffe, chairman of the health select committee and he actually requested the meeting with Rosie Winterton on our behalf. Various other senior MPs have been very active on our behalf, but as for the government - they haven't listened. We have had a meeting with the Department of Health which got us nowhere.

Question: How useful has the National Service Framework on Diabetes been?

Jenny Hirst: The NSF from our perspective actually puts patients at the forefront of care which means that they should be given the choice of treatment, but whether or not this turns out to be the case remains to be seen.

It certainly hasn't as yet had that effect, but in principle it has all the right ideas.

Question: What would be your message to government?

Jenny Hirst: On the issue of drugs and the safety of drugs I think government needs to look into more careful monitoring, the speed with which drugs are licensed, and the relationship between the regulatory authorities, research and the pharmaceutical industry.