Karen Scott, a Canadian resident, was kind enough to allow us to publish her excellent letter to the Canadian Diabetes Association. Thank you, Karen. ========================================================================= To The Canadian Diabetes Association: I feel that I have to contact you in regards to the “Diabetes” programme aired on November 23, 2002. It is certainly an alarming statistic that many, many people now live “undiagnosed” with Type 2 Diabetes. This programme was certainly important for viewers to understand and questions if they themselves, or members of their families or friends may be stricken with Diabetes. Understanding that 90% of the Diabetic population (in Canada????) has Type 2 Diabetes, makes me wonder about the information and help that should be available to the 10% of Type 1 Diabetics. I have been a Type 1 Diabetic for 23 years now. I have gone through the many, many trials and tribulations that Diabetes can manifest. I now would like to make a LOUD STATEMENT – hoping that it may be heard by Doctors, Pharmaceutical Companies and the people who deal with Diabetes on a day-to-day basis. The discontinuation of Beef/Pork Insulins has affected quite a few Diabetics. I myself, have been through severe problems since I have been forced to switch to Synthetic Insulin from the original Beef/Pork medication that I now know was the best for me. I watched this programme and heard many times mentioned that fact that the Canadian Diabetes Association maintains that every Diabetic should have the proper medication and management available to them at all costs. They also maintain that the “appropriate” medication differs for each person. I would like to question why the CDA is not understanding or standing behind the fact that the Beef/Pork Insulins are the appropriate medications that are now unavailable to a few Diabetics, such as myself, who have realized that they cannot tolerate the Synthetic Insulins. I think that a member of the CDA should question “WHY” are some having difficult times with the current available Insulins. A further understanding that the “newly diagnosed Diabetics” along with long-term Diabetics who were first started on Beef/Pork Insulins makes me question why are there so many “Death-In-Bed” occurrences happening. I really believe that the CDA should question “WHAT” is happening to find out “WHY” it is happening. I know I would love to be a member of that research group. Does the CDA deem that this is important?? Can to CDA create funding to get a research group together?? I would like the CDA to question the Canadian Government why some Type 1 Diabetics have to dig in their own pockets to import Beef Insulin from CP Pharmaceuticals in the UK to properly manage their Diabetes? I have stopped and questioned myself many times why I just don’t go ahead and order the Beef Insulin, but have looked back at my finances and realized just how much it would impact my pocketbook. This is certainly not a question that other Canadians have to ask themselves. The Canadian Health System takes care of everyone…except a FEW of the 10% of Type 1 Diabetics in Canada. Can the Canadian Diabetes Association help me?? Yours truly, Mrs. Karen A. Scott A Current CDA member -- since 1979. |
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| January 10, 2003 |
| Ms. Julia Hill |
| Associate Director General |
| Biologics and Genetic Therapies Directorate |
| Health Canada |
| LCDC Building #6, P.L. 0603D |
| Tunney's Pasture |
| Ottawa, Ontario |
| K1A 0L2 |
| Dear Ms. Hill: |
| I am writing on behalf of the National Advocacy Council in follow-up to our previous letter dated June 5, 2002, regarding access to animal insulin in Canada. The Canadian Diabetes Association (CDA) continues to hear from many individuals concerning the cost of importing beef insulin through the Special Access Programme (SAP). Many have asked why the federal government does not waive the costs associated with the importation of products, or implement a system that would alleviate the burden on the consumer. |
| The majority of people transferring from animal to synthetic insulin need minimal or no dosage adjustments. However, experts now recognize that for some individuals who have used animal insulin for a long time there is an adjustment period. It is also recognized that there are some people who have been unable to make the adjustment safely and have experienced a negative impact on their health, well-being and quality of life. The CDA strongly supports the principle that people who are dependent on a treatment option approved for use in Canada should continue to have access to that treatment or to an alternative which is viable for them, without extraordinary measures (financial or otherwise) being borne by the person with diabetes. We are enclosing a copy of CDA's position statement on ?Discontinuation of Diabetes Medication and Products? which was passed by our National Board of Directors in November 2002. |
| In our June letter, the Advocacy Council urged the government to address the high cost of importing products through the SAP and we would appreciate an update as to what has been done in this regard. We would also appreciate your guidance or advice on a course of action that the CDA could take to further address this issue on behalf of its members. |
| Yours sincerely, |
| Karen Butler |
| Chairperson, National Advocacy Council |
| Enclosure |
| c.c.: The Society for Diabetic Rights |
| Mrs. Karen Scott |
| Karen Butler, Chairperson of the CDA's National Advocacy Council, writes to Health Canada in response to Karen Scott's letter to CDA. Good job Karen! |
| A6-02 |
| Discontinuation of Diabetes |
| Medication and Products |
| Position Statement |
| Where a diabetes treatment option is being discontinued, people who are dependent on that treatment option should continue to have access to that treatment, or to an alternative which is viable for them, without extraordinary measures (financial or otherwise) being borne by the person with diabetes. |
| Where a pharmaceutical company declares its intent to discontinue a safe and effective diabetes product for which there is still demand, the pharmaceutical company and the federal government should work together to ensure appropriate solutions are readily available for those who find that they are unable to make the transition. |
| Consumers and health professionals should have access to a network of medical expertise to assist with the transition process when a product for which there is still demand is discontinued. |
| Background and Rationale |
| As new diabetes-related drugs are developed and marketed, manufacturers are correspondingly discontinuing old product lines. (For example, with the introduction of human/genetic insulin, the production of most animal insulin was discontinued). This can be a concern for people who have relied on a specific medication or product over the course of many years. Although medical evidence may suggest that the new product is actually more efficacious, the consumer who is doing well on a particular drug can find its discontinuation devastating. |
| People with diabetes have a right to access medication or other treatment options with sound medical and clinical evidence of providing effective treatment of diabetes and its complications. The fact that most people with diabetes are responsible for their own primary care makes personal perceptions and experiences even more important. |
| Enclosure from Karen Butler, Chairperson of the National Advocacy Council of the CDA |
| NOTE: Although this is wonderful progress, I am still somewhat dismayed at some of the position statements comments, 1. Where is the proof that "human" insulins are more "efficacious" than beef, beef/pork and pork insulins??? 2. Why are newly diagnosed diabetics having the same problems with "human" insulin as long term diabetics???? 3. Why is the ADA and the CDA not seeking answers as to why many diabetics are finding "human" insulin "inefficacious", causing severe hypoglycemia and hypoglycemia unawareness, unpredictable, the feeling of being unwell among other things that were not a side affect of the animal insulins? We need answers to these questions along with easy access to the insulins we need to survive. We need a CHOICE of what works best for each individual diabetic. Insulin is no different than every other drug. No one drug for any one illness is a satisfactory treatment for all. |