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The Insulin Dependent Diabetes Trust - International
The Insulin Dependent Diabetes Trust [IDDT] formed in the UK in 1994 to help and support people with diabetes who need insulin treatment, especially those experiencing problems with synthetic insulins. The health and welfare of people with diabetes depends on their active participation in their care and to achieve this, the patient must have information about benefits, risks and alternatives concerning treatment and must have appropriate facilities available to make an informed choice of treatment.

The introduction of synthetic ‘human’ insulin in 1982 resulted in many patients and their families reporting adverse effects that they had not experienced when using natural animal insulins. However, these adverse reaction reports from patients were largely ignored by their doctors, by diabetes associations, by regulatory bodies and by the insulin manufacturers themselves despite the fact that when these patients returned to their usuak pork or bovine insulin the adverse effects largely disappeared.

‘Human’ insulin was introduced with promises that it would be better for people because it more nearly matched natural endogenous insulin, it would not produce antibodies and above all it would be cheaper and therefore more accessible people throughout the world. None of this has in fact turned out to be true:

  • At best research has shown that there are no clinical benefits for patients from using ‘human' insulin as opposed to natural animal insulin.
  • ‘Human’ insulin is more aggressive, being faster acting and working for a shorter duration than natural animal insulins. Therefore there is an increased need for more daily injections, a greater risk of hypoglycaemia and of more erratic blood glucose levels.
  • Research has shown that ‘human’ insulin does produce antibodies.
  • After nearly 20 years, human insulin is still significantly more expensive that animal insulins and in poorer countries where animal insulins have been withdrawn in favour of the more expensive ‘human’ insulin, people are now dying not for lack of insulin but for lack of affordable insulin.

Clearly patients and many physicians were misled when ‘human’ insulin was introduced and this was made worse by the denial of the adverse reactions reported by patients and their families by all their advisers. This denial was based on the lack of ‘scientific evidence’ to support their reports but no large-scale trials ever took place to compare animal and ‘human’ insulin and nor was any formal post-marketing surveillance carried out despite the large number of patient adverse reports. The British Diabetic Association [now Diabetes UK] alone received nearly 3000 reports but they took little action.

Since this time the major insulin manufacturers have systematically discontinued natural animal insulins from many countries but they are still available in the UK, the US, Canada and some other countries. In October 2002, Novo Nordisk reversed their policy and agreed to continue to supply pork insulin in the UK. It is important that people with diabetes have the insulin that suits them best and that they are used to and they should not be forced to use genetically produced ‘human’ insulin that causes some people to suffer adverse reactions that affect their health, wellbeing and quality of life. So it was with this background and the need to ensure a continued supply of animal insulin that IDDT was formed and to ensure that in future, people with diabetes would receive full information about risks and benefits of any new treatment based on reliable independent evidence from research.

 

IDDT-International
The UK was not the only country where patients were reporting difficulties with ‘human’ insulin, patients in Switzerland also reported similar problems and a group formed there. However, IDDT started receiving complaints from people all over the world and they were encouraged to form patient groups within their own countries. We now have seven IDDT groups throughout the world in addition to which we have many individual members in numerous countries throughout the world.

In 1998 IDDT-International was formed to unite all these groups to try to fight this global withdrawal of natural animal insulins, especially now research [Cochrane Review July 2002] has clearly demonstrated that synthetic 'human' insulin is not superior to natural pork insulin.

As the large insulin manufacturers appear to make their commercial decisions globally, it is necessary that patients can also take global actions in the best interests of their own healthcare. Firstly, IDDT-International provides an information source to people with diabetes around the world to try to help people obtain the animal insulins they need. Secondly IDDT-International has brought together patient groups in different countries who provide information and support to people with diabetes and their family carers to ensure that they have an informed choice of insulin treatment. The advocacy groups are able to lobby their own government departments on the basis of evidence from patient experiences to try to ensure that this informed choice of treatment remains available.

 

Aims of IDDT- International
  • To offer care and support to people with diabetes and their families, especially to those experiencing difficulties with ‘human’ insulin.
  • To ensure that all patients and their family carers are properly informed of the various treatments available to them and are made aware of the risks and benefits.
  • To influence appropriate bodies to ensure that a wide range of insulins remain available to ensure that all insulin users have a continued supply of their chosen insulin.
  • To represent the direct voice of people that live with diabetes in relation to healthcare and research.

For further information please contact us.

 
 
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