Archive for January 2012

One Touch Test Strips on the Black Market

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.

Why My Wardrobe is Limited by Diabetes

My parents always told me that diabetes was not going to hold me back from doing what my friends were doing, and I believed them. Their can do attitude shaped the way I faced my life with chronic illness. I took on a lot of challenges and had a lot of adventures that looking back, I can’t imagine doing now 26 years later! And now, as a 41 year old woman, most of the time (especially now that I am wearing the Omnipod) diabetes still doesn’t hold me back, except when it comes to buying clothes. Damn that big pod!

I had to return a dress the other day, a gorgeous, sleeveless, chocolate brown dress that would have been comfortable and perfect for running around town and going to art walks this spring, because it didn’t work with my omnipod.

I’d been admiring the dress for weeks, maybe even longer, and after the holidays, when I saw the tell-tale “Sale” sign go up in the window of one of my favorite boutiques, I hurried in, hoping to find the dress on sale. And it was! Almost 50% off! I was so excited I bought it without trying it on and stuck in my closet at home, waiting for the next art walk to come around.

The next art walk came around 2 weeks later and when I pulled out the dress and slipped it on my pump stood out through the thin, body hugging material like a brick. This was not an empire waist kind of dress, this was a hip hugging dress, the kind that made me look like I had hips and actually, with the pump made me look like I had some kind of deformed hips. Not cool. I could have worn the dress with the pump on my arm if, and only if, I was willing to wear a wrap to cover my arms. The pump would have been obvious on my legs too…there was no place to hide so sadly (and feeling guilty and making up excuses about it not fitting right), I returned the dress.

I constantly struggle to accept the visibility of wearing the pump, after living “invisibally” with diabetes for most of my life. I want to wear my pump with pride because I am not ashamed of having diabetes (and because it makes my life so much easier!) but still. I can’t help being vain and the pump looks funny. Plain and simple. It can be disguised, especially in the winter, with sweaters and under jackets, but I live in the south and winter doesn’t last long. I’ve written before about my desire to get over my vanity, especially during swim suit season, but I’d like to meet someone who doesn’t feel self conscious walking down the beach with the pump stuck on your body.

I’m thankful that my parents instilled in me that understanding that diabetes wasn’t going to define or hold me back and maybe one day I’ll get over this self consciousness, but for now, I will remember to try clothes on before I take them home. Until Omnipod comes up with a smaller design that is….come on already!

Traveling with Diabetes, and getting felt up by security thanks to my Omnipod.

I flew home from California last week after visiting my aunt in San Francisco…thankfully I wasn’t flying through LA, because it looks like my pump might have caused a bigger scene there. “TSA Mistakes Insulin Pump for a gun, Causing LAX Security Scare.”

I was asked to step aside in the San Fran airport (made it through the Charleston airport without a hitch), and felt up by a female security guard. The whole experience was uneventful and only took a few seconds, but still, it bothered me. My mom stood off to the side waiting while I was searched and I couldn’t help feeling a little resentful about the whole thing. I was glad that I was traveling by myself and not my 3 young kids because it would have added to the already hectic experience of flying.

A few of the commenters on the article in the LA Times wrote about traveling as a diabetic:

“I don’t know what idiots were on duty that day, but I am glad it wasn’t me. I fly quite a it WITH MY INSULIN INFUSION PUMP on all the time. They can’t go thru the x-ray machines as they will be damaged and I have been told by Medtronic not to go thru that walk thru thing. Have them see the pump, hold it in my hand and run a scanner across me, so they have seen them many a time. It’s very simple and easy to deal with. I also carry a medical device card with me and should others in my position. No hassle, plain and simple.”

“PATHETIC! If anyone ever did that to me and my insulin pump I would make sure to cause hell for the people that accused me. Ive been thru a lot of airports and have never had any problems so im curious as to how this happened.”

“Yes an insulin pump with a tubing and attaches to a canula in your body, comes in all sorts of colors like blue, green, pink, purple, no larger than a deck of cards in the similar shape, yes this so looks like a gun. I dont know why people are saying she walked away and left it behind, you do not detach it from your body. It just pops on the scan that theres something and further screening needs to be done. But the TSA needs to change its medical rules and stuff….cause so many people travel with medical devices that are attached to their bodies or had surgeries and plates or pins or screws in their bodies.”

(on facebook) Kerri Morrone Sparling said, “I personally have never had an issue at the airport (and I wear an Animas Ping with a metal clip and a Dexcom CGM with all kinds of crazy bits, sometimes opting for the pat down, sometimes putting my devices through the machine, and other times being randomly selected for screening), but I know everyone’s experiences vary.”

What we can all take away from this is the importance of being prepared when we travel. I devoted an entire chapter of The Smart Woman’s Guide to Diabetes (and it could have been much longer) to travel. Some helpful tips from the chapter include:

• See your doctor before you go. Get a letter describing your diabetes management and a copy of your prescriptions.
• Whenever possible, bring prescription labels for medication and medical devices (while not required by TSA, making them available will make the security process go more quickly)
• Pack medications in a separate clear bag and place in your carry-on luggage.
• Keep a quick-acting source of glucose to treat low blood glucose (glucose tabs) as well as an easy-to carry snack such as a nutrition bar.
• Carry or wear medical identification ( a cute diabetes bracelet) and carry contact information for your physician.
• Pack extra supplies, at least twice as much medication and supplies as you think you’ll need.
• Keep supplies in a carry-on bag.
• Because prescription laws may be very different in other countries, write for a list of International Diabetes Federation groups: IDF, 1 rue Defaeqz, B-1000, Belgium or visit http://www.idf.org. You may also want to get a list of English-speaking foreign doctors in case of an emergency. Contact the American Consulate, American Express, or local medical schools for a list of doctors. Insulin in foreign countries comes in different strengths. If you purchase insulin in a foreign country, be sure to use the right syringe for the strength. An incorrect syringe may cause you to take too much or too little insulin.

Healing through Writing (and other forms of creativity)

Writing my book was a transformative process for me. There were times when I got teary talking to the nearly 100 women I interviewed as they shared stories about the challenges and triumphs of life with diabetes. There were many women who told me they were surprised by how emotional it was to share their stories with me, that they hadn’t ever written about being diagnosed or hadn’t talked about the various topics we discussed. I too was surprised by the emotional impact of writing the book, and I think it changed me from feeling victimized by diabetes to feeling empowered.

Writing, drawing or painting our stories is a powerful tool that is overlooked by the medical community. Using our hands to create something ‘beautiful’ out of something ‘ugly’ is an experience we all must share.

Check out my latest  Smart Woman’s Guide post, an interview with Heather Stuckey, a professor at Penn State who is studying the healing effects of creativity for people with diabetes.

Another great creative resource is Lee Ann Thill’s Diabetes Art Day.

Let’s all get our hands dirty and create…..

My Ever-Expanding Omnipod Bill

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.

Life Expectancy on the Rise for type 1 diabetes

I love to share good news and this recent research shows that the life span of people with diabetes has increased. Check it out:

Mysteries remain in disease progression of extreme type 1 diabetes.

“”Recent study results indicate that the life expectancy of those diagnosed with type 1 diabetes has dramatically increased during a 30-year period, according to results of the Pittsburgh Epidemiology of Diabetes Complications (EDC) study, a long-term prospective study of childhood-onset type 1 diabetes, which was initiated in 1986.

Here’s the part I really like because it’s something I always said, but never had any statistics to back me up:

“It is a possibility for many people with type 1 diabetes to live as long as those without it, if not longer,” Orchard said. “For some, having diabetes makes you follow better behaviors that may improve one’s overall health.”

A lot of this study was based on findings from Joslin’s Medalist Study that looked at patients who’d lived with diabetes for 50 years and more, and were free of complications. We can’t know for sure what has helped these patients to live for so long in such good health but one thing is clear, we all need a solid support system and good insurance:

“Further, experts all agree that long-term success of living with type 1 diabetes is highly contingent on the patient’s ability to care for themselves, their access to health care and services needed, and how well they monitor and manage their diabetes on a continual, daily basis.”

also:

“King said most patients in the Joslin Medalist Study seem to have high health standards and are anxious to try new medical technologies that may improve their quality of life. These factors may play a role in the prolonged lives of many of these patients, along with extraordinary medical care.”

Finally, a few words of optimism to end the night with:

“The outlook has never been better for patients with type 1 diabetes, and given reasonable care and following major guidelines, there is every expectation that these patients can have a relatively normal lifespan and lead a normal life,” Orchard said.”

Running with the Omnipod

Most of the time when I am running, I feel strong, healthy and powerful. I am fast as I run through the slowly waking neighborhoods surrounding our house. The streets are dark and sometimes, the newspaper delivery guy in his small red car speeds past, tossing papers in their blue plastic onto the wet from dew driveways. I am strong and gaining speed, I don’t feel like someone with a chronic illness. Most of the time anyway.

Some mornings if I am slow, I worry about my blood sugar…am I high? am I low? I carry my glucose tabs in my hand, switching from left to right as I go. I wear my pod on my lower back or my arm and in the winter it doesn’t matter because no one can see the pod beneath my running clothes. A recent question posted on tudiabetes about running with an omnipod peaked my curiosity. A member wrote:

Hey everyone! I have my appt. next week with my Pump Educator to get me going on the OmniPod! I was wondering about you people that are runners, can you share any tips? In my mind I am thinking I will like having the pod in my triceps area, but maybe you can share with me what sites you have found that work well while out running.

I immediately wrote about about how I wear my pod on my arm or my lower back and how it’s never a problem and I think I jinxed myself.

Last night I changed my pod and placed it on the back of my right arm. This morning I went out for my run and halfway through I felt a stabbing pain. I ignored it for a few minutes and eventually had to stop. I was wearing a long sleeve shirt and had to pull the neck down so I could look at my arm and I have to say, I expected the worst. I thought for sure I’d see blood. But there was nothing. So I kept running and tried to ignore the pain but I cursed the pod all the way home.

The pain went away when I stooped running, but I know it’ll pinch again tomorrow morning. It hurts a little when I move my arm around so i’m guessing that I just got unlucky…I hit a bad spot when I attached the Omnipod. What I don’t want to do is remove it and waste a $30 pod. (Plus the 50+ units of remaining insulin).

What bothers me the most is not the money, but a run that hurts. A run that is hindered because of my insulin pump. A run where I don’t get to feel strong, healthy and powerful.

Pregnancy and Diabetes

Before I could become pregnant with my first son my endo said I had to get my A1c below 7. I remember feeling defensive (how dare he!?). It was the first time someone told me I couldn’t do something because I had diabetes. I was ready to have a baby now! Why did I have to wait?

Of course he knew more than me, and it actually took us a year to get pregnant with the help of chlomid. I’m glad I listened because I got myself in the best diabetic shape possible for my baby-to-be, and the pattern of eating right, exercise and (constant!) blood sugar testing has stayed with me.

Pregnancy is such an important time for women with diabetes and the more we understand about how to take care of ourselves, the better off we, and our future children,  will be.

Here is a great article from Psychology in Diabetes Care on diabetes and pregnancy:

Psychology in Diabetes Care, 2nd Ed, Part 13.

re-Defining Diabetes…..

In an attempt to clarify my mission for this blog, I’ve changed the look around again. I hope it’s not confusing…I’m still trying to find a theme that is visually pleasing and not too busy. I also have given the blog the title: re-Defining Diabetes because that is my goal. I want to transform the way we think about diabetes. Instead of a disease associated with blindness, kidney failure and amputations, I want people to think of healthy eating, exercise and a life of moderation. I want to change the face of diabetes.

When I was first diagnosed I hated the word, “Diabetes.” At fourteen years old, diabetes sounded like die, and I was suddenly no longer an invincible teenager. I wrote about the power of language when it comes to defining and communicating about illness in my book:

Excerpt from chapter 1 of The Smart Woman’s Guide to Diabetes:

This confusion about the term ‘diabetes,’ and whether someone is a “diabetic” or is “living with diabetes,” and whether they have type 1, type 2, type 1.5, Gestational or LADA, reflects an ambiguity; what do we have, what des it mean, and how do we define ourselves? The language of illness is very scientific and women are quickly immersed in the challenge of learning a new language after being diagnosed. We are taught that diabetes leads to death, kidney disease, blindness, and amputation. We are taught phrases such as: combat the illness, wage a war against complications, battle the disease, control our blood sugars.

I have never been comfortable with the language of diabetes, and have never felt the terms I used were “right,” for example, the small zippered pouch I use to carry my supplies I call my “shot bag.” However I don’t even give shots anymore, so what should I call it? Am I giving myself shots, or multiple daily injections?

Why, as women with diabetes, do we have to learn to speak like medical professionals to talk about our disease? And is it a disease, or an illness, or a chronic condition? If we don’t know how to communicate about diabetes, how can we accept it fully into our lives? How can we own it, and color it with a pink ribbon like women with breast cancer if we don’t speak the language?

So instead of “seizure” why don’t we re-Define this word that triggers frightening images to “a low blood sugar.” Instead of “Diet” let’s call it “healthy eating.” Instead of “Complications,” let’s say “Challenges.” Lets think of people who are inspiring us to live well with diabetes….there are so many! Here are just a few:

Athlete, Rachelle Glantz

Singer, Amanda Lamb

Writer, MaryJeanne Hunt

How do you define diabetes?

Happy Insulin Anniversary!

My 7 year old is working on a 100 year project for school, so this morning we googled “100 year old inventions” and I realized that 90 years ago today insulin was used to treat patients with type 1 diabetes. (Unfortunately I can’t use that for his project, we’re off by 10 years and he’d rather do a report on the sinking of the Titanic), but nonetheless, it got me thinking how much has changed in 90 years. Most of the time I’m full of complaints about what hasn’t changed when it comes to diabetes and I roll my eyes when people talk about a cure. But when I reread the stories of what life was like for people with my disease a century ago, it stops me in my tracks.

Thanks to scientists Banting and Best the discovery of insulin took people who were on the verge of death back to the land of the living. Here is a young girl before insulin, and again, approx. 4 months after.

People with diabetes like to celebrate all kinds of unusual anniversaries (date of diagnosis for example), so lets use the rest of this day or even the rest of the week to be thankful for the discovery of insulin. There is still a very long way to go, but look how far we’ve come.

ps. I want to correct a very misleading error in the the guardian story that says:

“But perhaps the starkest statistic is that while most people with diabetes do have long and healthy lives, type 1 diabetes reduces life expectancy by an average of 20 years, while type 2 reduces it by an average of 10 years. This does not sound to me like a problem that has been solved.”

The truth is that advances in diabetes care have nearly eliminated the difference in life expectancy between people with type 1 diabetes and the general population, according to new research.

“The gap between life expectancy for people with type 1 diabetes (diagnosed between 1965 and 1980) and the general U.S. population is now just four years, according to the study.” USA Today.

And don’t let any body tell you any different! Happy Insulin Anniversary.