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Quinte Insulin Pumpers- Minutes of the group meeting, April 16, 2003 |
Quinte Insulin Pumpers- Minutes of the group meeting, April 16, 2003
25 persons gathered in the meeting room of Holy Trinity Lutheran Church, 516 Victoria Avenue, Belleville at 7:00 pm for the regular monthly meeting. Theguest was John Boreman, Special Assistant to Doug GaltPC who represents Northumberland Riding in the provincial legislature, Toronto. He listened to the members' views on insulin pumping and why insulin pumps should be funded under the Assistive Devices Program. Then he gave practical tips on how to campaign successfully for government approval.
As eachmember introduced herself/himself, aspontaneous summary of the advantages of insulin pumping was given.
Supplies cost $100 per week or about $5,000 a year, buta pumpis well worth the sacrifice. Unfortunately, not everyone has a private drug plan to help pay for expenses; in fact such plans are usually available only in higher salaried positions requiring a higher level of education. What has happened to the notion of universal health care? Are we not entitled to the same health careas the more affluent members of our society?
Bitterness was expressed about the existence of "stone-age" endocrinology whereinsome specialists need more up-to-datelearning aboutthe needs of Type 1 diabetics. It seems to be up tous, as patients,to educate them. There are none too young (a 5-week-old infant) and none too old (a 95-year-old-lady) to receive the benefits of insulin pump therapy. Other endocrinologists focus more on the medical students accompanying them than on the patient hoping for guidance and treatment.Quinte area patients must rely on the out-of-town doctors and the limited number of appointments available.
Support groups where information can be exchanged and later checked out are great! Unfortunately the Simcoe group and Quinte Insulin Pumpers (QIP) are the only two in Ontario.
Thanks to Cheryl Lamey and Marlene MacGregor and all the other volunteers that helped, the sale of World Famous chocolate bars went well. These funds will be used to help pay for activities that can be enjoyed by Type 1 diabetics and their families. For example, time has been booked at the Quinte Bowl, Roy Boulevard, off Highway 62, north of Highway 401 for family Laser Bowl, Saturday, April 19, 2003 19:00 hours (7:00 pm). Young and old are welcome! For those who ordered tickets to Canada's Wonderland, Tammy Waterfall had their tickets.
Debbie Moffat introduced a need for baby-sitters with some knowledge of paediatric diabetes that she has perceived in the community.. She would like to see our group establish a training course to be offered to anyone willing toassume the responsibility of taking care of a child with diabetes. Life as a couple shouldn't come to an end with the diagnosis of diabetes in the family; however some parents go for years without having an eveningout together. Candidates for this course could be grandparents, care-givers after school, or other interested persons. It would help the care-givers to know what to do in a given case.
Type 1 diabetes is a mental health issue. 2/3 of parents with a child with this diagnosis come to exhibit symptoms of post-traumatic stress disorder. This results in sick parents, parents who are non-productive. A wise doctor advised thata parent must take as much care of self as of the child if nothing else, then for the child's sake.
In Ontario there are approximately 35,000 Type 1 diabetics; 1/3 of whom are children. They make up approximately 0.5% of the population. The public assumes that all expenses for Type 1 diabetes are covered.
Recognition was given to the Canadian Diabetes Association for their work on behalf of Type 2 diabetics. This groupseems to need information about thesituation of Type 1 diabetics before they can provide assistance to patients with this more serious problem.
Local hospital staff need updating aboutinsulin pumps. Each patient must be prepared to face scepticismamong medical staff.
Eye doctors are often the first to suspect diabetes in a patient.
Inform your dentist if you have Type 1 diabetes.
Before death, the government willingly spends $140,000 in a vain attempt to patch up the deterioration caused by Type 1 diabetes.
There is a disproportionate number of persons receiving disability pensions because, through Type 1 diabetes, they have lost their jobs and/or their licenses. The government pays out a lot of money to treat the complications but does not yet cover the cost of an insulin pump that may stop the progression of the complications and even restore the person's productivity and ability to contribute taxes and energy to the community.In a jurisdiction where pumps are funded, in 5 years there has been an 80% drop in trips to emergency rooms. In Manitoba pump supplies are covered with a $500 annual deductible.
Mr. Boreman addressed the issue of our responsibility toeducate the Minister of Health, Tony Clement, and our local Member of the ProvincialParliament about the needs of Type 1 diabetics. They just don't know, but if they receive a number of letters, they will come to see this as an area of concern.Policy makershave to be made aware of the costs of start up and of supplies for an insulin pump; no doubt this is significantly less than the cost of rehabilitation for other disabilities.
A petition that is photocopied is worth nothing.
An unsigned letter is worth nothing.
A petition that has original signatures and addresses has the power of one or two letters.
An e-mail has little authority because it is not signed.
A form letter copied, signed and submitted separately by several people has the total weight of one letter.
Several individual letters submitted in one envelope have the influence of one letter.
An individual letter, written sincerely in your own way and signed, sent to the minister with a copy to Doug Galt MPP, Northumberland has the power of one letter.
A mail log is keptof letters on a topic. Fifty letters, each individually written and mailed separately will have the power of fifty letters and canlead toa change in policy makers' thinking.
It's up to us to write if we want to make this a better world for Type 1 diabetics.
What sort of government health coverage do you believe should be available to Type 1 diabetics? Why?
Original to:
Tony Clement
Minister of Health and Long-Term Care
Suite M1-57, Macdonald Block
900 Bay Street
Toronto ON M7A 1N3
A copy to your Local Member of Provincial Parliament
Northumberland Prince-Edward Hastings
Doug Galt, MPP Ernie Parsons MPP
27 King Street 183 Front Street
Trenton ONK8V 3V7 Belleville ON K8N 2Y9
And a copy would beappreciated byour QIP Co-Coordinator
Nancy Stafford
40 Burr Road
R.R. 2
Ameliasburg ON K0K 1A0