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Insulin
Dependent
Diabetes
Trust
.
IDDT in Germany
INSULINER
A PATIENT ORGANISATION IN GERMANY
Affiliated to IDDT- International
INSULINER is a patient/carer based organisation almost entirely made up of people with Type 1 diabetes, but not exclusively so. Like many patient organisations formed to help and support people and to represent their interests, Insuliner is an informal organisation that has no hierarchical structure. It is made up of small groups of people throughout the country that meet together regularly and offer support and help to each other.
Information about INSULINER:
· Offers help and advice from the perspective of people who have the experience of living with diabetes.
· Provides information
· Offers an opportunity for problem sharing
· Provides help to accept diabetes as part of your life and the life of your family
· Tries to bring influence to bear to see improvements in the care of people with diabetes
· Surveys industry in a critical way
· Believes in the patient’s rights to the therapy that suits each individual person the best and campaigns for the continued availability of U40 strength insulin and, therefore, natural animal insulins.
INSULINER – the Journal
The Journal is Insuliner’s regular communication with members.
It publishes:
· a question and answer section,
· information about the practical problems of living with diabetes,
· information about blood monitors and the latest developments in technology.
· Provides useful addresses, contacts and information about how to find a diabetologist if you are moving areas.
· articles about the psychological problems involved in diabetes – the ones that are rarely discussed with doctors.
· articles about the problems with ‘human’ insulin.
INSULINER represents the needs of people who require U40 strength animal insulin.
In Germany, just as in many other countries, people have reported problems when using synthetic ‘human’ insulin and find that they are best suited to beef or pork insulins that are supplied in U40 strength insulin. But in Germany, just as in other countries, these people fear that the insulin manufacturer’s will withdraw U40 and therefore, animal insulins from the market. Leaving them with no alternatives but to use the ‘human’ insulin that they know does not suit their needs and will result in their diabetes being less well-controlled, more hypoglycaemia and loss of warnings.
This group of people are also denied the rights to use pen injection devices, but they are because the insulin manufacturers will not produce U40 animal insulins in cartridges for use with pens.
INSULINER campaigns strongly for the rights of this group of people to have the insulin therapy that suits them best.
· They want understanding and recognition by physicians and other diabetes health professionals that ‘human’ and animal insulins are not the same and that there is a group of people who cannot successfully use ‘human’ insulin and that they need U40 beef and pork insulin.
· They want the pharmaceutical companies to recognise this and guarantee to continue to produce these insulins.
· They want this group of people to have the choice of using insulin pen injection devices.
INSULINER Petition
Insuliner collected 2000 signatures from people who need animal insulin
and had a meeting with the major insulin suppliers in Germany, Novo
Nordisk and Hoechst, and with the physician’s organisation the German
Diabetes Association [DDG].
The results of this meeting have been very negative and there has been no response from either the insulin manufacturers or DDG. Like the organisations in Australia, the United States, Switzerland and Canada, Insuliner feels that people with diabetes, consumers of healthcare, have to join together to fight for the treatment they need, the choice of treatments, and the insulin they need to maintain good health and the best quality of life that can be achieved. They want decisions about their treatment to be based on clinical need and not the commercial decisions of the pharmaceutical companies.
Jenny Hirst, from IDDT- International comments:
"The aims of
the members of INSULINER are the same as people within
IDDT-International and they are not unreasonable aims, if the care and
treatment of people with diabetes is the top priority for all those in
involved in diabetes care. Unfortunately the systematic withdrawal of
animal insulins in countries around the world and the lack of support
from physicians and industry for people needing animal insulins,
demonstrates that this cannot be the case."
Contact details for INSULINER:
Sissi Kuhn-Prinz
Insuliner-Verlag
Narzissenwag 17
57548 Kirchen
Germany
Tel
+49 2741 930040
Fax +49 2741 90041
e-mail verlag@insuliner.de or insuliner@t-online.de
For German speaking people INSULINER can visit the web site http://www.insuliner.de
NEWS AND VIEWS
Physician supports for people in Germany
Reprint of an article in IDDT Newsletter, July 1996
Too many types of insulin in the UK?
IDDT has been
watching the recent debate in the medical press about whether or not
there are too many different types of insulin available in the UK. Bonn
[ref1] maintained in the Lancet that there are too many types of insulin
in the UK and that their classification into short, intermediate and
long is too confusing. A subsequent letter by E v Kreigstein and
colleagues [ref 2] totally disagreed maintaining that "the availability
of different insulins allows physicians greater leeway in solving the
individuals problems of diabetic patients."
They point out that in Germany there were 85 insulins listed in 1994 – the only ones to be withdrawn have been pork velasulin for pen cartridges by Novo Nordisk [tut!tut!] and recently Rapitard MC, also by Novo Nordisk. Rapitard had allowed many people with non-insulin dependent diabetes to have only one injection because it was 25% short-acting pork and 75% long acting beef. There are no alternatives to either of these – the pork insulin cartridge or Rapitard for single dose treatment.
Dr v Kreigstein and colleagues say they are not complaining about having too many insulins but say that the more tools we have, the more special problems they can resolve for their patients. However, in a later edition of The Lancet Dr Geoffrey Gill [ref3] responded by disagreeing and quoting a diabetologist’s prayer:
"Teach me that it is not so much the number and types of insulins I use to treat my diabetic patients; but the skill with which I use them, which determines their control and wellbeing."
What about the patients’ views on all this – frankly I’d like a wide variety of insulins and the diabetologist with the skill to use them!
Interestingly the Drugs and Therapeutics Bulletin, UK, [ref4] also covers this topic. This maintains that there is a place for reducing the number of insulins used but that a range of insulins to be stocked locally could be agreed between hospital physicians, GP’s, diabetes nurses, pharmacists and [wait for it!] patients. They also say hat the range would need to include ‘human’, pork and beef. Let us hope that somebody takes notice of this very sensible suggestion and also their additional point that details research into the real differences between the various insulin types is needed and that this should be undertaken in patients rather than in healthy volunteers.
References
1. Bonn D. Too may insulins and too confusing classification. Lancet 1996;347:458
2. Kreigstein E, Wedemayer HJ, Storm GR. Need for many types of insulin. Lancet 1997; 347:1045
3. Gill G. The diabetologist’s prayer. Lancet 1996;347:1418
4. Drugs and Therapeutics Bulletin. Insulin preparations – time to rationalise. Vol 34;No 2: Feb 1996
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