Address: United Kingdom
The InDependent Diabetes Trust (IDDT) is a registered charity and was formed in 1994. The Trustees came together because they all experienced adverse effects when using genetically produced synthetic 'human' insulin but when changed to natural animal insulins most of the adverse effects disappeared. They were aware that there were many other people with similar experiences with 'human' insulin but possibly many more that were experiencing adverse effects without realising that the cause could be the synthetic 'human' insulin they were injecting. Unfortunately the adverse effects were not heard or acknowledged by many of the medical profession and people were, and very often still are, refused their right to an informed choice of insulin treatment.
The large multi-national insulin producers are now systematically withdrawing animal insulins from countries around the world leaving people that need them in a very vulnerable position. Campaigning for the indefinite supply of natural animal insulin remains our primary objective.
IDDT is contacted by people in many countries, all experiencing problems with 'human' insulin and in 1999 an umbrella organisation, IDDT-International, was formed. The pharmaceutical companies manufacturing insulin have global policies and so patients now have an international umbrella organisation to help to protect and represent their interests.
It was through this experience that the Trust realised that people with diabetes, the consumers, have valuable experiences that should not be ignored and these could, and should, inform diabetes treatment and care. We have also become aware of the lack of transparency of our regulatory system for approval and monitoring of drugs that leaves consumers unable to gain access to information they require. This is especially important in situations such as ours where patients have little support from healthcare professionals to enable them to continue to access the insulin they require.
The Trust is concerned with listening to the needs of people who live with diabetes, understanding those needs and doing our utmost to offer help and support. We also recognise the need for support to the family carers of adults and children with diabetes - the husbands, wives, partners and parents. We recognise that when one person in a family has diabetes, all other family members are affected to a greater or lesser extent and they all have views and needs which may be different from the person with diabetes, but nevertheless are important.
All our Trustees either have diabetes or have family members with diabetes. So they all know first hand that while diabetes doesn't rule our lives, it is an important part of them. It needs care and attention, it can be a nuisance and it is not without it's problems!