Islets of Hope

Islets of Hope for Persons with Diabetes Islets of Hope for Persons with Diabetes
http://www.isletsofhope.com/main/why_ipump_1.html


Islets of Hope Mission Statement

Why did I start Islets of Hope and IPump.org?
By Lahle Wolfe, Founder Islets of Hope and CEO, 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),

* Eye disease - 76% reduced risk
* Kidney disease - 50% reduced risk
* Nerve disease - 60% reduced risk

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."


And Islets of Hope not only agrees, but is working at community and national level to help prevent some of the needless premature deaths (diabetes kills an estimated 40 million people per year(4)) from diabetes complications.

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)
& the Miracle Four:

Elizabeth (age 6, diagnosed type 1 at age 4)
Rachel (age 11)
Jonathan (age 9)
Samuel (age 16)


I need my toes to wiggle when tickled.
I need my feet to run swiftly through life.
I need my kidneys, heart and legs to be strong, like me.
I need my eyes to behold the face of my child;
yet to be born.

I need insulin to live.
I need you.

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.

Carter's Crew

This blog is dedicated to my sweet amazing son Carter James. Carter was diagnosed with Juvenile Diabetes in July 2005 at 5 years old. This blog is going to be dedicated to the ups and downs of living as a family and child with a chronic illness. Through God's help, I pray this blog will encourage and inspire many families to live as full of life as possible while juggling the demanding nature of this disease. Carter we love you!

Our First Walk!

Hello Friends!! As you all know, our little friend Carter has been recently diagnosed with juvenile diabetes. We thought it would be a great encouragement to him and his family for us to rally a group of his friends and family to show our love and support for him. We are trying to get a team together to participate in the Juvenile Diabetes fundraising walk that is being held in Tulsa on Saturday, September 23rd. We are also hoping to get everyone matching T-shirts to wear with the name of our team “Carter’s Crew”. We hope you would consider participating in the walk as we know it would be a great time with friends and a wonderful way for us to show our love and support to the Robertson family.
If this is something you would be interested in doing, here is a link with more information and the form to fill out to register.
Information:
http://walk.jdrf.org/index.cfm?fuseaction=walk.walk&eventID=805&chapterid=4523
Register: http://walk.jdrf.org/index.cfm?fuseaction=walk.walkeradd&eventid=805&c=y&preConfirmID=86414046
When you register, be sure to sign up for the team name “Carter’s Crew”.
Please let us know as soon as possible if you will be walking and if you would like a T-shirt.
Thanks so much!
Jeff and Marci Holley

Our first day of treatment

Here is an excerpt from an email that I sent out after our first day of treatment. "Okay here is the raw real side of today. Hard and it pretty much sucked....I truly feel like I am right in the middle of the thunder and lightening. You know that feeling you get when you get very embarrassed and there is that fuzzy ringing in the ears and your face is flushed. That is how I feel. We started the blood glucose testing today and as everything new does with Carter it literally sent him over the edge. Dr. Jelley basically said first thing that it wasn't a fluke he had high blood sugar, he definetly has Type 1 and emphaized the fact it is a lifelong disease without a cure and Carter's health depends upon our managment of it. We are currently going through a "honeymoon" phase where Carter's pancreas is still producing under 20% of the insulin his body needs. After 6 months to a year when his body stops fully producing insulin "things will get very hard in controlling his blood sugars" and the shots may have to increase up to 7-10 times a day. I'll just let you guess how Carter and I reacted when we heard that. Carter had to sit through all of this information. As a mom wanting to protect her child I can tell you it was and is gut wrenching.

The two insulins we are mixing together for him morning and evening will provide fast and medium acting insulin to help his body meet it's nutritional needs. Basically what had been happening to Carter and all kids with diabetes was their bodies starve themselves to death. He said treatment and recognition of diabetes is less than 100 years old. He went on to explain the genetic predisposition for Carter's gene and that is likley to be triggered by a virus that causes an autoimmune attack on the body's own pancreatic beta cells. Of course me being the glass is always half full asked if there was replacement therapy for the beta cells or any way to stop the pancrease function from deteriating. I was met with a very very bleak NO.

The last hard part is our new diet. Please pray for me. Carter has to eat exactly 38 carbs a meal with 3 scheduled snacks a day that have 15 carbs each. The meals have to be on the same schedule each day. We test Carter's blood sugar 4 times a day and do a morning and evening shot.

Please keep little man in your prayers....Laura

P.S. Marci if you are up for the walk on Septmember 23 we would love to do it! Thanks

Trusting in Jesus

Trusting In Jesus

Prayer for Trust in Jesus

O Christ Jesus,

When all is darkness

and we feel our weakness and helplessness,

give us the sense of Your presence,

Your love, and Your strength.

Help us to have perfect trust

in Your protecting love

and strengthening power,

so that nothing may frighten or worry us,

for, living close to You,

we shall see Your hand,

Your purpose, Your will through all things.

St. Ignatius of Loyola

I have always approached life through rose colored glasses or a fairytale reality where everything always "works out." I think I made it through the weekend between diagnosis and Carter's outpatient treatment with the same approach. In the back of my mind I continued to hope and pray that the tests were wrong, that it was a fluke, and that on Monday, the pediatric endocrinologist would just confirm the anomaly and everything would be okay with my precious son. One thing that I have wrestled in the depths of my soul these past few years is the reality of brokenness in this world and yet the awesome sovereignty of God. The God of creation who has the power to DO anything and yet sometimes in our eyes is quiet and still. I have prayed for miraculous healings that don't come, loved ones to not pass away, mommies not to lose their precious babies, thorns in the flesh to be removed. Good well meaning people have come up to our family sharing how they have prayed for us and specifically for healings over various things. How do you look people in the eye who say that they have prayed for healing and seem to be utterly disappointed and almost offended when it has not occurred for your family. Is my faith any less...? Is God still good when things don't turn out the way we have prayed. God has spoken to the brokenness of my heart challenging me to praise Him regardless of the outcome. Is the Almighty God of the Universe any less almighty if my prayers are not answered in the manner in which I think they ought to be. When the road is broken and difficult will I chose to praise him No Matter What? I had to lay my son on the alter that weekend and thank God for whatever He was going to do through this next path. Jesus prayed in the garden of Gethsemane "Not my will, but yours be done." Giving my loved one back to God (as if he were "mine" to begin with) is what God called me to do, knowing and submitting to His will. I can't even find the words to express my heart over this matter, however I know that God has used this brokenness over my son to help me be more dependent on Him than I ever was. I have to give up my control freak nature and daily entrust Carter to Him. The crazy and cruel thing about Juvenile Diabetes is that it is unpredictable. You can DO everything correctly (diet, exercise, close monitoring of blood sugar) and end up with extreme blood sugar highs and lows. It never "levels" out or is in control for more than a few hours :) . I praise God that He always is!

Outpatient treatment

The Next Day of our Journey

We went into Dr. Reinhard's office the very next morning for our first insulin shot. Talk about being out of my comfort zone. One minute your an ordinary mommy and the next minute your a full time nurse required to give your child of all things SHOTS!!! After what felt like a microscopic lesson on how to give a shot, we were sent home with needles and a bottle of Lantus (long acting insulin) to give Carter every day. I was very surprised how little knowledge had been given to us on what a person with diabetes could and couldn't eat. We had three days to make it until outpatient therapy and I just laugh at what misconceptions I had for Carter. We pulled everything with any sugar from his diet including fruit and basically just fed him meat and cheese for a couple of days. The first time I had to give Carter a shot on my own, he ran screaming and crying from me and hid under the bed. I literally had to drag him out and hold him down. He was crying, I was crying (not to mentioned terrified and unsure about doing his shots myself) and the whole experience lead me utterly dreading the next time I had to give him a shot. My poor son really had a hard time grasping what was going on with him and it is really just heartwrenching as a parent to watch your child suffer and struggle with issues that you can't fix. Here is my email from the very next day.

"Hi friends....I just want to praise God and thank you for your prayers for Carter last night and today. After Friday morning's traumatic injection I truly didn't think we could both do it again. However thanks to your prayers we saw God's hand at work. Carter asked us first thing this morning when he was going to get his shot and then after I used the new "inject a pen" he said it didn't even hurt. Praise God! Literally an act of the Holy Spirit and day and night difference from Friday morning. Thank you guys! Please continue to pray for Carter for his little mind to slowly digest all of this information. Tonight at bedtime we were talking about how many more days until we go see Dr. Jelley. I told him that we were going to have to start monitoring his glucose levels probably in his finger....his reaction of course was "Does it hurt? Carter buddy...I really don't know but I promise you I will monitor mine as well so you are not alone." There is so much to comprehend. At times today honestly I was very discouraged. I went to the library and checked out a couple of "kids" books on juvenile diabetes and honestly I couldn't handle the negativity. I for sure am not reading them to Carter. I want us to tackle this thing through Christ's strength. My dear friend Christy Cook sent me a CD which has a song on it that truly sums up this...I will copy the words at the end of this email.

At bedtime tonight we read from Carter's bible on David and Goliath and how David had no fear because he knew God was bigger than Goliath. We talked about David being a true superhero because he trusted in God and overcame Goliath even when it seemed impossible. Carter and I talked about our "Goliath" being diabetes and that in God we are to have no fear. We worked on memorizing Nahum 1:7 which states "The Lord is good, When trouble comes, he is a strong refuge." Specific prayer requests for next week include :

1. God's covering and protection over Carter's body as we still seek healing and prayerfully a perfectly normal reading on Monday morning at Dr. Jelley. Emma, Hope, Jim, and I have been laying our hands on Carter and praying for healing. Pray for our experience with Dr. Jelley and divine wisdom for him as a physician. (On a side note, he does have a 9 year old son who has diabetes so we know that he has personal experience with all of this).


2. For the worry to subside for me as I am anxious about every morsel that goes into Carter's mouth right now not knowing if it has too much sugar or carbs for his little body to handle. I really am looking forward to a road map if indeed we are facing Juvenile Diabetes.

3. For Carter as he is really terrified of pain...they accidently forgot to run the growth hormone blood test last week so we might be facing another blood draw early this week. Let's just say that it was truly a nightmare for us both to get 3 vials of blood out of my 36 pound son while he was just screaming. Secondly if we are facing that again pray that he would not have such a severe reaction phsycially with headaches and emtionally with his fear of needles, shots, and pain.

4. Pray for the many people who are watching loved ones suffer through illness and trauma that the peace of Christ that truly transcend understanding will guard them and gird them as they walk through the days ahead. This week in particular seems to be full of people experiencing this.


Thank you dear friends in Christ, I could not walk this road without the body of Christ lifting us up.
Laura"


by Casting Crowns "Praise You in this Storm" http://www.youtube.com/watch?v=uHdcyue0bSw

"I was sure by now that you would have reached down and wiped our tears away. Stepped in and saved the day. But once again, I say "Amen", and it's still raining.
As the thunder rolls, I barely hear You whisper through the rain "I'm with you"
And as Your mercy falls, I raise my hands and praise the God who gives and takes away.

I'll praise You in this storm, and I will lift my hands for You are .....who You are
no matter where I am. Every tear I've cried, You hold in Your hand. You never left my side
and though my heart is torn, I will praise You in this storm.

I remember when I stumbled in the wind, You heard my cry. You raised me up again. My strength is almost gone, how can I carry on if I can't find you.

I lift my eyes unto the hills. Where does my help come from? My help comes from the Lord, the Maker of Heaven and Earth. I'll praise You in this storm, and I will lift my hands for You are who You are no matter where I am. Every tear I've cried, You hold in Your hand. You never left my side and though my heart is torn, I will praise You in this storm."

Our Journey

The day Carter was diagnosed

July 3rd, 2005 Hope, Emma, and Carter on their Nana's porch. The next week our lives began to change significantly. We drove to Kansas City following the 4th of July and Carter repeatedly had to go to the bathroom and was constantly asking for more to drink. Jim's mom picked up on the fact something might be wrong and even mentioned Diabetes. I of course said oh he's fine I'm sure. By the time we returned to Bartlesville, we were convinced that all was not well with are little man. He had begun to wet the bed which had actually NEVER happened to him and looked very thin. I took him into Dr. Reinhard right away. She felt around and he winced when she touched his abdomen. She looked at me and somehow I just knew in my heart that all was not well with my son. She told me she would like to do a blood test in the morning after he had fasted all night and they would be checking for a battery of things including diabetes. Carter had lost 7 pounds over a period of a few days as his body virtually had begun the process of starving itself to death. He weighed a mere 36 pounds and was on the verge of turning 6 years old.

The next day, I got the phone call during a homeschool teachers meeting that every person dreads receiving. Dr. Reinhard had called me saying the tests were back and Carter indeed had Juvenile diabetes. I cannot tell you how grateful I was to the Lord that he had chosen her to be our Doctor during this gutwrenching phone call. She cried with me as a mom/parent, encouraged me, and counseled me as a Doctor. Thank you Lord for a woman who loves and serves you in her work! The next 24 hours the roller coaster began. I was really clueless about Juvenile Diabetes. I remembered what I had learned in school, remembered treating patients who had not taken care of themselves medically, but I was clueless on the treatment of diabetes per say. All of my family thought it meant absolutely no sugar. We were scheduled to go into Dr. Reinhard's office the first thing Friday morning for Carter to receive his first insulin shot. We also were scheduled to begin outpatient treatment in Tulsa the following Monday. All I really remember is a panic feeling that we had to wait for 3 days and I was clueless of what to feed my child and terrified of causing his body any more damage! The following is my email to my dear friends and family who lifted us up continually in Christ.

"Hi friends...it has been a long day however we finally got some answers to some problems health wise with Carter. He has been diagnosed with Juvenile Diabetes. We are going Monday to two days of outpatient treatment with a pediatric endocrinologist in Tulsa. Please pray for our family as we struggle to comprehend what lifestyle changes this means for us and pray for our little guy that God will strengthen him through this battle and for courage as none of us enjoy pain in any form. God is an awesome sovereign God who will use this new trial to continue to transform us into his image. As Jim and I are dealing with this individually and together please pray for us as a couple that we will rely on Christ and cast our concerns and frustrations over to our heavenly Father. I have been placing Carter at His feet repeatedly these last few days saying I would praise Him no matter what....now I have the what...please pray for strength for me as a mom who would do anything to take the suffering and pain away from her child. I have great fear of Carter's reactions to a daily regimine of insulin shots and glucose monitoring. I am also hoping my reaction of numbness to the situation will give way to a resolve to not try and take the situation into my own hands to "fix" but to lay my budren down and live in God's strength. I covet all of your prayers for Carter and I continue to pray for a miraculous healing of his body and for a possible CURE for this disease.

In Christ,
Laura"