Quinte Insulin Pumpers- Minutes of the group meeting, June 18, 2003

Quinte Insulin Pumpers- Minutes of the group meeting, June 18, 2003

On Wednesday, June 18, 16 persons sharing a concern about Type 1 diabetes and
its management with insulin pumps met at 7:00 pm at Holy Trinity Lutheran
Church, 516 Victoria Avenue, Belleville for the regular monthly meeting.
Theguest was The Honourable Lyle Vanclief, Minister of Agriculture, andour
federal representative for Hastings-Prince Edward riding. Because diabetes has
been diagnosed in his family,he has a special interest in this disease.

INSULIN

Insulin is now totally man-made from recombinant DNA. Serious side effects
could occur with beef or pork sources. Dosages were sometimes not correctly
adjusted during the switch from animal to a human source, and problems occurred
during the transition. Our current source is the best available. Remember to
keep a needle insulin injection system as a backup to your pump.

IMPLANTS

Jill Milliken's new position will involve research and new product
launches.Soon, aproject involving implantable pumpswill enter the clinical
trials phase at selected Canadian hospitals; they have already been tested in
France. Implantable pumps include the technology for continuous glucose
monitoring - no more regular pin prick testing for sugar levels! The reservoir
will be filled every three months with highly concentrated insulin. Because the
implants will be done in a hospital, the costs will be covered by the Ontario
health insurance plan (OHIP).

DISETRONIC

Disetronic has pulled its pump off the market because the United States Food and
Drug Administration (FDA) hasrevoked its approval because of non-compliance. At
first there was a mass recall; now their pump has been withdrawn. There is a
concern about the availability of supplies for Disetronic pumps in the Quinte
area. Debbie Moffat, Shoppers Drug Mart, reassured us that they had recently
received a shipment and it might be wise for users to stock up. [Since this meeting it has been confirmed that Disetronic will continue providing pump supplies].

CHOICE?

Recently, Ontario Premier Ernie Eves statedin the Quinte area that pumps were a
matter of treatment choice. However, what choicehave people who don't have the
money to cover the cost of insulin pump start-up? Supplies for insulin pumps
cost twice the amount for injection therapy.

PREVENTION SAVES MONEY

In response to Mr. Eves,Claude Lajeunesse, Kanata,had a letterpublished in the
Belleville Intelligencerthis monthpointing out the financial savings to health
care programswith the help of insulin pumps. Unfortunately, it is difficult to
measure health care savings through prevention. Instead,ourcurrentprovincial
governmentpractices involve investing repeatedly in studies of how to prevent
the complications associated with diabetes. Lajeunesse's letter demonstrates
that to prevent complications, money should be spent on putting the existing
tools into the hands of those who need them.

TAXPAYERS BE AWARE

Jill Milliken reminded us," The government is going to spend the money anyway.
As taxpayers, we should be concerned that money isbeing spent in the most
effective ways."

BE REASONABLE

Lyle Vanclief pointed out that if a person has had toaccess the health care
facilities regularly for three years, and the cause will remain for the rest of
the person's life, it seems reasonable that we are able to predict the cost of
continuing care without appropriate therapy. Currently the provinces seem to be
saying, "We'll take our chances."

COVERAGE IN OTHER PLACES

Public funds cover the costs of insulin pumps and supplies in the United States,
the United Kingdom, France and Finland. A recent journal article reported that
an analysis of 52 studies revealed that insulin pump therapy is much better than
multiple insulin injection therapy.

GLUCOMETERS

Debbie Moffat reported on two glucometers, one for high-tech enthusiasts, one
for those who prefer less technology. Using the One Touch Ultra Smart, the
individual can enter the bolus amount, carbohydrates counts, exercise, stress
(exams, vacation, blood pressure, etc.) and obtain a daily graph, an analysis by
meals, etc. It puts the log book on a machine. Bayer nowoffers the Breeze,
amachine thataccepts much less data and can give a 14- or 30-day average of
glucose results.

OFFICIALLY DEFINING "DISABILITY"

The problem is the definition of "disability" when it comes to awarding
government tax credits. Type 1 diabetes is an life threatening auto-immune
disease that no one bringsupon themselves, but it is not easily visible to
untrained auditors. Some countries such as the United States, and the province
of Quebec recognize diabetes as a disability. Forms must be very carefully
completed in order to be awarded a tax credit for a disability caused by
diabetes.

OCCURRENCE OF DIABETES INCREASING

Mr. Vanclief stated that diabetes is one of the fastest growing diseases in the
world. In Canada alone, there are close to 2 million people with diabetes.
Among First Nations people, diabetes is increasing at three to five times the
national average. 90% of the newly diagnoseddiabetics are Type 2. 10 % are
Type 1.

PRIORITIES

Health care priority lists have newly diagnosed patients and gestational
diabetics at a high level. There is no priority for re-evaluating the Type 1
diabetic who has been on multiple insulin injection therapy for several years
and who needs and/or wishes to upgrade to insulin pump therapy.It takes time to
start a person successfully on a pump, and there is a lot of pressure on our
health care system. Meanwhile 20% of hospital emergencies are diabetes-related.

HOW THE SYSTEM WORKS

The federal government transfers health care funds to the provinces. The
provinces are free to manage the distribution of these funds without federal
interference.They can allocate these funds to meet regional needs. Theymay even
direct funds ear-marked by Ottawa for health care to the reduction of their
deficit. The federal government (Ottawa), therefore, cannot direct our province
(Toronto)to support insulin pump therapy.

FEDERAL PRO-ACTIVE MEASURES

In 1999, the federal government allocated $118 million overfive years to the
Canadian Diabetes Strategy. Each person attending the Quinte Insulin Pumpers
meeting was offered a package explaining the details. This money goes to
research, prevention of complications and education.This is pro-active health
care. These measures provide cost savings and more comfort for the patient. In
contrast, with reactive health care,employed by the provincial government,
health care fundsare made availableafter the problem has occurred.

LOBBYING WORKS

Lobbying must continue. At one point, the treatment for macular degeneration
was not covered by our provincial health insurance plan, but thanks to Ernie
Parsons MPPour provincial representative andthe opposition critic for persons
with disabilities, it is now accepted. Ernie Parsons has been our champion.
Three times (June 12, 2002, October 2, 2002 and May 22, 2003)he has delivered in
the Toronto Legislative Assembly a member's statement about the need for support
for insulin pump therapy.

PROVINCIAL TREATMENT COVERAGES

Each province creates its own list ofprescriptions and therapies that it
recognizes for purposes of government health insurance.The Yukon Territory is a
leader inapproving insulin pump therapy for residents of more than three months.
With an annual $500 deductible, the government of Manitoba covers the cost of
pumping and supplies. The federal government provides 100% of the cost of pumps
and supplies for First Nations peoples.

PUBLIC AWARENESS

Lyle asked us to consider the effect of public pressure. Each year 28, 000
persons die from influenza, and there is little public outcry. This year, 35
persons have succumbed to SARS and look at the awareness. Years ago, a Guelph
professor stated that the technology to clean up Lake Erie was available, but
nothing was done untilthe public demanded change. We must keep up the pressure
until the politicians havehad enough.

LIMITS ON CHARITABLE ORGANIZATIONS

Nancy Taylor explained that we cannot leave lobbying to the national
organizations. Federal regulations state that nonprofit charitable
organizations such as the Canadian Diabetes Foundation (CDA) or the Juvenile
Diabetes Research Foundation (JDRF) risk losing their charitable status if they
act as lobbyists.

PROVINCIAL STARS NEEDED

In addition to the worker bees who do the necessary tasks such as letter
writing, a lobby group needs key people with access to money for expenses and
who can act as spokespersons. We needpeople with high profilesto arouse public
interest and public pressure.We have to encourage Ontario public personalities
with Type 1 Diabetes to act as spokespersons.