Islets of Hope
I need my toes to wiggle when tickled.
I need insulin to live.
Please, support our effort to help others in need.
Elizabeth, now 6 years old, is one of the estimated 123,000 children in the U.S. that has juvenile type 1 diabetes. She has been on intensive insulin therapy via an Animas insulin pump since 1 month after her diagnosis at age 4. Elizabeth is allergic to all long-acting insulins. Without an insulin pump she would still need to take shots every 2-4 hours around the clock to live.
Nearly 85 children aged 0-19 die in the U.S. each year from juvenile type 1 diabetes; a death rate which is not declining, even with improvements in diabetes care technology.
I want to change that.
These children do not die from long-term complications, but from hyperglycemia or hypoglycemia that could be better managed simply by going from shots to pumps.
Some things we do know
Diabetes is a leading cause of death by disease in Canada and the 5th leading cause of death in the U.S.
The number of diabetes-related deaths in children has not decreased despite improvements in diabetes care practices. Not enough children are being put on insulin pumps or other intensive therapy.
Diabetes is a leading cause of adult blindness and could be prevented with intensive insulin therapy
The World Health Organization (WHO) estimates the number of people with diabetes in the world today to be 185 million but will reach 300 million by 2025
Nearly 20 million people need insulin to live. Of those 20 million 19.5 million take shots because only about 450,000 people are on insulin pumps -- worldwide.
90% of people with diabetes have type 2; 10% have type 1
Costs for an insulin pump include $6,000 for the equipment and $200 or more each month in ongoing costs
Glucose test strips cost and average of .70 cents to 1.00 each. Testing 5 times per day can cost over $1,800 annually just for the test strips. For those on intensive insulin therapy who test 8-10 times per day the costs can reach over $3,500.
Up to 80% of people with diabetes will die from heart disease, and more than 40% will develop long-term medical complications requiring additional medical care.
In 2004, about 1.4 million adults between 18 and 79 years of age were diagnosed with diabetes. From 1997 through 2004, the number of new cases of diagnosed diabetes increased by 54%.
An average of 1,800 people die each year in the U.S. from diabetic ketoacidosis. Most of these deaths are occurring in persons under the age of 44 years old. DKA is easily prevented with simple, frequent blood glucose monitoring.
There is no cure for diabetes. But diabetes does respond to aggressive and early intervention. Keeping blood glucose levels in target range dramatically reduces the risks of all major long-term complications of diabetes. And the easiest, most cost-effective way to treat diabetes is to put qualifying, suitable candidates (not everyone is suited for insulin pump use) on insulin pump therapy.
Islets of Hope and IPump.org want to put more insulin pumps into the hands of children. Why? Because they need toes to wiggle when tickled.
Why did I start Islets of Hope and IPump.org?
Simple. Because I don't know how to "do" victim, and because by the time you finish reading this page, one more person will have died from diabetes complications, nearly seven more people will have been diagnosed with diabetes, and at least two of them won't be able to afford medical care and diabetes care supplies.
When diabetes struck my family, I never once sat on the pity couch but immediately donned my advocacy cape, determined to turn something negative into something profoundly positive: Islets of Hope, diabetes watch-dog advocacy, education, and support community meets "money talks" in IPump.org.
In the fall of 2005, I founded Islets of Hope as a not-for-profit company with the simple intention of helping other families, like my own, with diabetes. Through education programs, support, and a strong focus on consumer awareness and advocacy, I knew that Islets of Hope could make a difference ... and it already has.
But the more I ventured into the depths of the true heart of the diabetes community the more aware I became that too many people with diabetes lack the resources for proper medical care and basic diabetes supplies. What good is providing information to people who cannot afford insulin or simple blood glucose testing supplies?
For many, simply learning what to do is not enough to prevent blindness, neuropathy, or even early death, because all the talk in the world isn't going to help much if a person cannot afford to properly monitor their blood glucose.
Testing supplies alone can cost more than $200 per month (even more for those using insulin pumps). When you add insulin, syringes, glucagon, insulin pump supplies, and the many other costs associated with diabetes, families, like my own, can easily spend more than $25,000 annually on out-of-pocket expenses including excessive insurance premiums -- if you can even get insurance!
Even Medicare coverage for diabetics is severely lacking. After a deductible is met, only 80% of testing supplies are covered, and Medicare sets the standards as to how often a person should test; an amount that only covers about half of the supplies that are truly needed on a daily basis.
Insulin, when injected via syringe is reimbursed at a higher rate than for those on insulin pumps where insulin is considered a "durable medical good" simply because it is administered via a continuous infusion device (pump) rather than a needle 4 or 5 times a day.
This does not make sense. Not to patients. Not to physicians. Not to insurance carriers, government programs, or American tax payers.
Many studies show that insulin pump use is far more cost-effective than shot therapy. In one study conducted by Children's Hospital, Los Angeles, CA, the average hospitalization for children with diabetes with severe, brittle diabetes, was 5.2 times annually, with an average of approximately 20 days of hospital care, costing nearly $30,000. The children in the study were then put on insulin pump therapy and the rate of hospitalization rate dropped to less than 2 per year which resulted in an $18,000 (average) reduction in diabetes care costs per patient.(1)
One of the largest, most comprehensive studies conduct to date is the Diabetes Complications and Control Trials (DCCT). This study showed overwhelming scientific evidence that intensive therapy (most easily accomplished by way of insulin pump use) had a profoundly positive impact on long-term diabetes patient outcome. Specifically(2),
40% of all the amputations ($74,000 per amputation(3)) performed in the U.S. are due to diabetes complications and diabetes is the number one cause of preventable blindness. In fact, the risk of nearly all major complications of diabetes can be dramatically reduced by tight glycemic control (keeping blood glucose levels in target range). But keeping blood glucose in range requires frequent testing, which many cannot afford. Also, tight glycemic control means more shots but with an insulin pump, a person needs only to push a few buttons -- no additional shots -- for painless self-care.
The two most common reasons for diabetics being hospitalized are severe hypoglycemia (low blood glucose levels) and (diabetic ketoacidosis) both of which can be almost completely avoided by intensive insulin therapy, regular glucose monitoring, and patient education. Insulin pump use has been proven to be a safe, effective diabetes management tool for intensive insulin therapy, that, when properly used, can dramatically reduce the risk of both short-term and long-term diabetes complications.
Perhaps even more important, especially to parents of children with diabetes, is that insulin pump use puts spontaneity back into the lives of children (and parents); something impossible on conventional insulin shot therapy. Insulin "pumpers" have fewer hospitalizations, fewer complications, significantly better HbA1c levels than those on shot therapy. They can sleep late, skip meals, and lead a more normal life that does not revolve around blood glucose levels and timing of shots. And, pumpers are less likely to suffer from depression, succumb to an eating disorder, and are more likely to invest daily energy into proper diabetes care.
Yet world-wide, less than half a million people out of the 194 million diagnosed with diabetes(4) use an insulin pump. In the UK, there are fewer than 2,000 people with type 1 diabetes using insulin pumps. The reasons are complex, but include medical community reluctance to prescribe pumps (especially to children who in fact, benefit the most from pumping), insurance company red-tape, and lack of patient education about the benefits of insulin pumping, and of course, patient inability to afford the initial cost of an insulin pump.
Even our school systems, already failing children with diabetes, make it less desirable to use insulin pumps. For example, in California, trained school educators are permitted to give insulin via shots, but state law prohibits anyone but a licensed nurse from giving, or even supervising a child given their own insulin, when administered through a pump. Imagine, my daughter able to give her own insulin with her pump since age 5, can learn, but an adult school official cannot? Parents are not registered nurses. Neither are siblings, grandparents, even child, who easily operate insulin pumps.
The World Health Organization reported (October 2005) that(5) :
"Currently, chronic diseases [specifically listed: heart disease, stroke, cancer and diabetes] are by far the leading cause of death in the world and their impact is steadily growing. The report projects that approximately 17 million people die prematurely each year as a result of the global epidemic of chronic disease.
"... Preventing Chronic Diseases: a vital investment' says global action to prevent chronic disease could save the lives of 36 million people who would otherwise be dead by 2015.
"... But these problems and their solutions lie outside the control of any one sector. In order to achieve the goal, all sectors from government, private industry, civil society and communities will have to work together. "More and more people are dying too early and suffering too long from chronic diseases," said Dr. Catherine le Galès-Camus, Assistant Director-General of Noncommunicable Diseases and Mental Health, "We know what to do, and so we must do it now."
Islets of Hope will continue its community outreach and education efforts, including putting pressure on schools that discriminate against our children, and reporting on snake oil companies, and IPump.org will help put medical supplies into the hands of the people who need them most.
There are many ways that you can help. Volunteer (opportunities at IOH and IPump.org), make a donation, shop affiliates, advertise on our site, and perhaps most of important of all, simply tell others about diabetes -- make it their reality and not just ours.
Oh, and please, tell them about Islets of Hope, too.
Lahle Wolfe, Founder (type 2, PCOS, Hashimoto's Thyroiditis)
Elizabeth (age 6, diagnosed type 1 at age 4)
Special Note From The International Diabetes Federation (IDF)
IDF's Task Force on Diabetes Health Economics has completed a review of currently available information on the cost-effectiveness of interventions relevant to diabetes prevention and care International Diabetes Federation. Cost-effective approaches to diabetes care and prevention. IDF Task Force on Diabetes Health Economics. International Diabetes Federation, Brussels, 2003.. A large number of interventions - intensive blood glucose and blood pressure control, the use of lipid lowering agents, screening for and treatment of diabetic retinopathy and active care of the feet, for example - are known to be effective. Evidence is accumulating that many of these are also cost-effective, or even cost-saving. Many of the costs of diabetes and its complications are, therefore, potentially preventable.
(1) CSII in children and adolescents with chronic poorly controlled type 1 diabetes - "During 1 year of CSII, hospital days decreased from 21 to 5 per patient and medical costs due to diabetes (including pump initiation) decreased from $29,330 to $12,762 per patient."
(2) National Diabetes Information Clearinghouse (NDIC) - DCCT Study Findings
(3) Costs of Diabetes, Canadian Diabetes Foundation
(5) World Health Organization, "Stop the global epidemic of chronic disease," 3 October 2005
Page Updated 01/18/2006