Tag Archives: cost of diabetes

Paying for College and Diabetes…here’s help!

27 Monday Feb 2012

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I’ve written before about the cost of diabetes, emotionally, physically and financially and my hope is to one day, feel like I’m treading water instead of drowning under medical bills. I’m glad that our boys are in public school right now, and my husband and I often have mock panic attacks when we hear parents talk about paying for college tuitions. Like Scarlet O’Hara, I’ll think about that another day!

However, many parents and future college students are busy figuring out how to pay for tuition come fall, and for students with diabetes, I have a great resource.

Founded in 2004 by a group of parents with diabetic children, The Diabetes Scholars Foundation provides 20-25, $5,000 college scholarships per year. President Mary Podjasek (who has a daughter and husband with type 1 diabetes) says the selection process is extremely competitive. One of the DSF recipients is Stony Brook University student Kaitlyn Karlya who agreed to speak with me about college life, and what it was like to receive a scholarship from the DSF.

Kaitlyn was diagnosed with type 1 diabetes in September 1992 at the age of 2, and will be 22 in April, 2012.

1. Do you have a personal philosophy of living with chronic illness? By this I mean, what is your approach to diabetes management? less is more? constant blood sugar testing? moderation? live life to its fullest? etc. etc.

My personal philosophy of living with a chronic condition is that either you take control of it, or it will take control of you. Sometimes you will have days that you need to work harder at it that others, and sometimes you will have a stretch of time that you don’t need to make any adjustments. But if you accept that it’s going to be a lifelong adventure, then you can adjust and deal with the blood sugar swings well. Just live your life and realize that this is part of you, but it does not define who you are. Oh- and make sure you have a great support system.  And you can’t beat yourself up if you’re having a bad diabetes day.

2. Do you feel like diabetes has held you back at all when it comes to education and what are you studying?

Diabetes has not held me back from anything- there have had to be adjustments and patience, but I have done everything academically that I have ever wanted to.  Again, if you understand that this is going to be a part of you, you will incorporate diabetes into your life instead of your life into diabetes.

3. How did you hear about the diabetes scholars foundation? How has this recognition been helpful to you?

I heard about the Diabetes Scholars Foundation through the Children with Diabetes Conferences. Before I graduated from high school I applied for the scholarship and when I heard that I got it I thought it was great! It was such a help with all of the expenses college can accumulate. I go to the Children with Diabetes Conferences every summer and work with the children and answer any questions people may have. I also recently became an Animas Diabetes Hero and do monthly v-blogs to share my experiences.

 4. How do you manage your diabetes as a college student? What are the challenges of living away from home?

I graduate from Stony Brook University in New York in May, and although I did not live in a dorm, commuting has made me have to make some diabetes adjustments. The amount of time behind the wheel has made me make sure my “low box” is fully stocked in my car. When I know my class will be three hours long I can alter my basal as needed and make sure that I carry plenty of juice on me…

Thanks so much to Kaitlyn for sharing her story. I’ll be writing more about this topic (soon!) on the Diabetes Monitor Website.

To find out more about the DSF go to:

Diabetes Scholars Foundation


http://www.diabetesscholars.org

Diabetes Scholars Foundation
2118 Plum Grove Road
#356
Rolling Meadows, IL 60008

V: 312-215-9861 
F: 847-991-8739

Application Package, including Letters of Recommendations, must be received in full by May 15, 2012.

The winners of the 2011 scholarships will be telephoned by June 1, 2011.

Hypoglycemia Unawareness and shaking hands

01 Wednesday Feb 2012

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I remember when I was diagnosed in 1985 at 14 years old my doctor told me that I could tell I was low when my hands were shaking. “You won’t be able to use that forever, but for now, when your hands start to shake, get some sugar. Eat a candy bar,” he said.

Wow. Candy was medicine and I could predict the weather of my body by studying my limbs. I looked at my hands then, held them out in front of my face in a straight line, as if I was a mime, and squinted. Were my hands steady or were they shaking?

I got into the habit of staring at my hands, much in the same way my classmates checked their watches to see how much time was left before class was over. I’d hold them up when I felt funny-forget pricking my finger, at 14 years old I hated blood-and if I could read my sugars by the shaking in my hands, why would I subject myself to pain? I began to almost hope for shaking hands because it was my excuse to eat skittles or starbursts or sugar babies (do they even make those anymore?). But I was also afraid. I was afraid that the shaking would stop and then how would I know I was low?

You have to understand to a 14 year old girl, testing my blood sugar was  something I did maybe 2x a day. 3x at the most. I depended on the shaking to offer me clues about what was going on inside this suddenly unpredictable, alien body of mine. And of course the shaking did stop. I don’t remember when, but I remember having to guess at other bodily signals.

Yawning was one. Yawning for no reason-in the middle of the day when I wasn’t tired and I began to realize that this was another clue.

Blurry vision was another. For example, when I was sitting in class and staring at the board, no matter how hard I rubbed my eyes the words wouldn’t come clear. These were signals, and I had to pay close attention to my body because if I didn’t, if I ignored those signals because I was too busy and didn’t want to stop whatever I was doing to eat candy, I was in trouble.

I don’t trust my body’s signals anymore. I’ve had diabetes for 26 years and now, if I want to know what my blood sugar is I prick my finger. The tips of my fingers are hard and calloused and proof that my body can no longer communicate with me. I don’t think I have Hypoglycemia Unawareness (people who are unable to recognize a low blood sugar), but sometimes I just don’t notice. That’s why I test at least 10 times a day. That’s why I need better coverage from my insurance. That’s why companies like Lifescan need to figure out a way to make test strips more affordable. Because it’s scary not knowing.

One Touch Test Strips on the Black Market

30 Monday Jan 2012

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Not Gucci bags, Cuban Cigars, or truffles, we’re talking about test strips.

In an undercover, investigative story much like a Dateline special, The Times Union out of Albany, NY has broken into the darker, unknown side of the cost of diabetes….

In Growing diabetic population fuels a black market, Paul Grondahl writes about the growing black market for test strips.

Diabetic test strips are not regulated and are sold over-the-counter in pharmacies, Target and Walmart, as well as by online mail-order companies. They are expensive, and not everyone who needs them has health insurance to cover the cost. Technically it’s not illegal to resell them, according to the Food and Drug Administration. However, federal law requires those selling diabetic test strips to register with the FDA, but few in the black market bother to do so. A lucrative market exists because those with test strips to sell got them at no charge or for a small co-pay through Medicaid, Medicare or private insurance and fraudulently continue to reorder in large quantities and people without insurance can buy them from black market resellers on eBay and Craigslist at a deep discount. It seems like a win-win situation, except for taxpayers, who are on the hook for those entitlement programs and employees and companies who have seen insurance costs rise due to spiraling medical costs. The law-abiding majority are the ones hurt by the sketchy deals.

All of us diabetics know that there is a black market for test strips because they are expensive. I’ve written before about how my insurance cut back my allowed number of test strips from a 3 month supply of 9 boxes of 100 or 900 strips, which is $80 after insurance (testing an avg. of 10 times a day) to 6 boxes, or 600. That’s a loss of 300 strips or 30 days! For a while I tried to test less frequently but that didn’t work. I am a mother of 3 young boys and I can’t be responsible for their lives when I’m not sure if my blood sugar is high or low…will I fall asleep at the wheel because my sugar is high or run off the road because it is low? So when I run out of strips, I look online (Ebay, Craig’s List etc.) or I spend my own money and pay out of pocket until my next shipment of prescription covered is delivered.

“I’m not surprised there’s a black market,” said Dr. Matthew Leinung, an Albany endocrinologist. “Everyone’s making money on the strips because people have diabetes their entire lives and they need a never-ending supply.” An unintended consequence is that Leinung must continuously negotiate with insurance companies on behalf of his patients because insurers want to limit the number of strips they’ll pay for while he wants his patients to test more often. Fraud and abuse inflates costs, and patients with legitimate needs are penalized.

The ‘dangers’ include expired strips….

An even more pressing fear for endocrinologists and certified diabetes educators is that uninsured or underinsured diabetics might be buying defective or expired test strips.

The bigger concern in my opinion is that we need to make test strips affordable so there is no need for a black market.

My Ever-Expanding Omnipod Bill

27 Friday Jan 2012

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Just got my latest bill from Omnipod and it’s up to $1500. Yikes. They have me set up on a payment plan of $50 a month so if I don’t order any more pods, it’ll take me more than 2 years to pay it off. Of course I will be ordering more pods, in fact I’ve only got one box of pods left so that means in about a month I’ll need to order more.

I shouldn’t be writing about money right before I go to bed.

How is this fair? I’ve written about the cost of living with diabetes plenty of times before, but the bills never fail to surprise and overwhelm me. Nothing changes. Sometimes I’ll get some extra money, after taxes or on my birthday, and I can pay $100 instead of my measly $50, and I’ll feel like I’m making a stab at the mountain of medical supply debt, but then it’s time to order supplies again and I’m right back where I started. 

My endocrinologist used to call MDI (multiple daily injections) the “poor man’s pump,” and I would laugh because I was using MDI and doing just fine. But I’ve been using a pump for 3 years now and I don’t want to go back. The pump makes my life easier and helps me manage my blood sugars. So why does it have to cost so much?

I’m not alone…read a few comments from others who are struggling like me: (Diabetes Health article)

“My son needs a pump but my insurance company will not cover it. Where can I find help to get a pump? I can’t spend 5 to 6 thousand dollars out of pocket for a pump.”

“My husband is a pump candidate and wanted to use the Omnipod, but Medicare said it would not cover it. When I read the Medicare regulation there was nothing said about a specific brand only that it would cover pumps. I’ve been on hold to Medicare several times but haven’t gotten through to get an answer. Any help here?”

“Who can use an insulin pump, which is unaffordable though it is a boon to diabetes? We should think of something which dosen’t eat our pockets. Please bring something in the market which is affordable. I am a diabetic, take injections, and I want to get rid of these tensions.”

How can any of us put a price tag on the quality of our life? We shouldn’t have to.