The CDC is Getting Diabetes Wrong

A recent article from diaTribe, “New Study Suggests Childhood Type 1 Diabetes and Kidney Disease are On the Rise,” should have T1D families and non T1D families alike on the look out. Basically, the article cites a research study published in Diabetes Care that uses data from insurance companies to draw the conclusion that in 11 years the instance of type of 1 diabetes has almost doubled in children.

Here’s the poignant quote from diaTribe’s article, “According to a new study in Diabetes Care, more US children and adolescents have been diagnosed with type 1 diabetes in recent years: the disease’s annual prevalence in a large, insured population increased 53% between 2002 and 2013, from 1.48 to 2.33 cases per 1,000 people. The study used data from insurance companies to survey the rate of diabetes in ~10 million US children and adolescents younger than 18 years old, so it does not tell us how diagnoses of type 1 may be changing in adults” (diaTribe). 

It’s alarming for any disease to double its rate of incidence in 11 years, but what’s truly alarming is that one of the US’s major operating components of the Department of Health and Human Services, the CDC, gets diabetes wrong. In a major 34 year longitudinal study released in 2014, the CDC makes no distinction between type 1 and type 2 diabetes. Type 1 diabetes is an autoimmune disease, caused by the body attacking its own beta cells and stopping insulin production. Type 2 diabetes is when the body overproduces insulin, but insulin cannot enter the body’s cells, and this process is likely a product of lifestyle and genetics.

Since the CDC makes no distinction between type 1 and type 2 (again two separate and different diseases), it’s able to make the claim that diabetes is on the decline because 2009 saw a trending decrease in the incidence of type 2 diabetes. Here’s a link to the CDC’s study.

CDC 2014 diabetes graph

graph from CDC’s study, “Annual Number (in Thousands) of New Cases of Diagnosed Diabetes Among Adults Aged 18-79 Years, United States, 1980-2014 source: CDC

This study has angered families affected by type 1 because the CDC illustrates a willful lack of understanding in two separate diseases. Additionally, and this is the point I find most frustrating, the CDC has no disease registry of type 1 diabetes.

Remember the reporting of the Ebola crisis that started in March 2014? The number of cases in specific countries was reported daily on multiple news outlets because Ebola was a reportable disease that had a disease registry. Here’s the CDC’s (in partnership with the World Health Organization) current cases. As of this writing, the cases were updated on January 6, 2016, yesterday.

I’m not comparing Ebola and type 1 diabetes; however, if the CDC has the ability to track a disease in distant third world countries and provide up to date current information to the public, certainly the CDC should be able to track the cases of type 1 diabetes within its own country.

Why are insurance companies the ones tracking type 1 diabetes in childhood? Is there a clear picture about type 1 diabetes in the uninsured population? If the CDC were tracking type 1 diabetes AND separating it from type 2, what would the graph for type 1 look like? Between 2002 and 2013 the blue lines would almost double in height. That’s certainly an increasing epidemic worth tracking, especially if type 1 diabetes has an environmental trigger.

Type 1 diabetes was once a rare childhood disease, but it’s increasingly less rare. With the incidence of type 1 diabetes increasing across the globe, but without numbers to study, a cause and cure will remain elusive.

The type 1 community is reacting and calling for change. Here are some actions you can take.

Living with type 1 diabetes presents enough hardships and frustrations, so the government organization whose mission includes,”increas[ing] the health security of our nation” should not be another frustration.

Diabetes & New Year’s Resolutions

I really enjoy the first week of the new year. The glut of the holidays is packed away, and while there’s reflection on the past, there’s more focus on the upcoming year. I work in academics, so the semester has yet to start, and our small town is usually covered in about a foot of snow. It’s quant, so this seems like the perfect time to reflect and plan. However, I’m not someone who makes New Year’s resolutions. In general, I believe that if there’s something I want to change or start, any random Thursday is just as good as New Year’s.

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a new year walk in the snow

Yet, type 1 diabetes has made me reconsider many assumptions and mores. The possible wisdom in establishing some resolutions at the start of the new year is just one of them. On her blog, Inspired by Isabella, T1D mom (and mother of triplets!) Kristina Dooley, wrote a post called “Losing Sight” that bravely discusses some of the biological stressors of being a T1D caretaker to a young child. Almost two years into the life of a d-mom and I can feel the effects of chronic sleep deprivation: foggy thinking, an increasing obsession with coffee, and higher stress levels.

Diabetes (both 1 and 2) is insidious for hundreds of reasons, but at the start of the new year, it seems that T1D is particularly cruel because there’s never a chance to regroup. Once that medical professional says “your child has type 1 diabetes” there’s no off-ramp. Instead, the person living with T1D, and to a smaller extent, his or her family, is running a marathon. For life.

We’ll look for the shady spots, like a three hour window with in-range steady blood sugars.

Maybe the start of 2016 is another good moment to rest. We don’t have much time before we’re back in the slog, so I think a few resolutions might help reframe our 2016 leg of T1D marathon: more protein, more sleep, and less worry about what’s beyond our control. On second thought, these are pretty lofty goals. I’ll settle for more sleep.

Richard’s Diagnosis Story

Diagnosis stories are powerful teaching tools that help people learn to recognize the symptoms of type 1 diabetes. For the person diagnosed with type 1 diabetes, a diagnosis is the day his or her life changes and goes forward. Semisweet is sharing “Richard’s Diagnosis Story” in his own words. Richard has been living with type 1 diabetes for over 70 years. In 2006 he joined the diabetes online community, where people were fascinated to hear Richard’s story of living with T1D in the 1940s and beyond. In 2010, Richard published his autobiography, “Beating The Odds: 64 Years Of Diabetes Health.”

Richard, diagnosed at age 6, September 1945

I was born in 1939, in Roanoke, VA, and I had several illnesses before my fifth birthday: three different kinds of measles and my tonsils removed. When I was five I had chicken pox and mumps, and while recovering I began showing the classic symptoms of diabetes— excessive peeing and drinking so much water. My parents took me to three different doctors, but they did not recognize my symptoms, so there was no diagnosis. I lost my appetite, and refused to eat. I just wanted to drink.

One doctor prescribed a tonic that was supposed to restore my appetite. I still remember the bad taste and tall glass bottle filled with dark brown liquid. It was like the snake oil medicine that we have read about from the past. The tonic did not help at all. It probably made my condition worse because it contained sugar. By the time we saw a fourth doctor I was very weak, and had lost a lot of weight. My ribs were very noticeable when my shirt was removed. The fourth doctor recognized my symptoms, and took a blood sample in his office. The sample was sent to a lab, and we waited a few days before returning to his office for the results.

His office was on the second floor of a building on Main Street in Salem, VA, and I struggled to slowly walk up the long flight of stairs. My father was carrying my three year old sister, but I was too big to be carried. In the doctor’s office, my mother and I sat in chairs while my father stood behind us, still holding my sister. I do not remember the doctor’s face, or his words, but I’ve never forgotten my mother’s pale and frightened face. In September 1945, a few days after my sixth birthday, we were told that I had sugar diabetes. I was hospitalized the next day, and don’t remember much about the stay, except for the injections and the blood that was collected. Insulin, taken from pigs or cows caused me to gradually regain my appetite, and I stopped losing weight. By the time I was home, I looked like a human being again, and my strength was very much improved.

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Richard and his family a few months after his diagnosis

While in the hospital, I was treated by Dr. Davis and he became the doctor for my whole family. I saw him every six months, and he took blood samples, testing them in his office lab while I waited. My blood sugar was always high, but I don’t recall him ever mentioning numbers. We were not concerned though because we did not know about the complications that might occur with my eyes, kidneys, and other body parts. One shot per day, one urine test, large portions of food, and no worries. Ignorance was bliss.

There were no meters for testing blood sugar at home until the 1980s, almost forty years after my diagnosis. We tested my urine at home, every morning, but the procedure for doing that was very awkward. The first thing I did each morning was to pee in a cup. Some Benedict’s solution was placed in a large test tube, and several drops of urine were added. The test tube was placed upright in a container of water on our stove. When the water had boiled a while, the test tube was removed, and the color of the solution was observed. The original color of the Benedict’s solution was blue. If the solution containing the urine was blue, after boiling, then there was no sugar present in the urine. If sugar was present in my urine, then there would be colors: green, yellow, orange, brick red, or brown. Green showed a low amount of sugar, brown showed very high sugar.

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testing blood sugar with Benedict’s solution

It was nice that there was only one injection each day before breakfast, but there were no fast and slow acting insulins, so control of my blood sugar levels was not good at all. The animal insulin was a 24 hour insulin, so the morning urine test result determined the dosage, but urine tests do not approximate blood sugar well. The glass syringe and metal needles were kept in alcohol, and sterilized with boiling water on the stove once each week. We had our own well, and the water contained limestone deposits. After boiling, there was a white film on the needles and syringe, so we had to use a whetstone to remove the deposits. The limestone frequently clogged the insides of the needles, so we had to push a small wire through the needles to unclog them. If the deposit was not removed it was difficult to push the needle into my skin. The needles were almost three quarters of an inch in length. I was supposed to push the needle into the muscle on top of my legs, or on my arms. My father gave me my injections until I was ten.

During the night I would sometimes have hypos. Some of those hypos became seizures. I would thrash around during my sleep, my teeth clinched, my muscles would become drawn, and I was almost unconscious. Mother poured small amounts of the sugar water they kept nearby on my lips, until I had enough in my mouth to partially awaken me. Then I drank the liquid more freely. I was always drenched with sweat, and very weak after a seizure. My body was sore the next day and the sugar water caused my urine test to show high the next morning. I continued to have seizures for many years, but they occurred less frequently when I was older. There was never any effort made to call an ambulance. Perhaps it was because the nearest hospital was at least 10-15 miles from our house, and I doubt that the paramedics in the ambulance had glucagon injections. Home care was probably the best solution. I think my mother saved my life many times during the years I lived at home.

Dr. Davis told us that I should not eat sugar, but no other instructions about an appropriate diet were given, so we didn’t know about carbohydrates. We lived on our little ten acre farm, and we had cows, chickens, pigs, and a horse. There was a very big garden, and an orchard. We bought very little food at the grocery store, so processed food was rarely part of my diet. Our own milk, eggs, vegetables, and fruit were readily available. We had meat from the chickens and pigs. Mother canned food each summer and fall. I helped my father with the farm work, and I was very hungry, so I ate big portions at every meal. I ate all the same food that my parents and sister ate, except items containing sugar. Mother used saccharin to sweeten the pies, cookies and cakes that she made for me. I ate lots of bread, potatoes, and other things that were not good for me, but we thought all foods were okay, if they did not contain sugar.

My parents did the best they could for me during my childhood and Dr. Davis gave no instructions that helped. We did not know there could be potential problems, and I led a rather normal day to day existence. There were no health problems with my diabetes throughout my childhood, despite my very irregular blood sugars. I have often wondered why I did not have DKA back then. Was something protecting me? All the fast acting carbs I ate each day (without correction boluses like I take now) must have kept my blood sugar very high. I’m sure my parents were devastated by my diabetes, and not knowing how to care for me. My parents raised me in much the same way that they were raised in their mountain homes. They were raised on farms, and they loved that kind of living.

When I talk to parents of T1D children diagnosed today, I advise them to join online diabetes support groups for parents. Children with Diabetes, created by Jeffrey Hitchcock, and the many parents’ support groups on Facebook are very good sources of advice and information for parents. Getting support from experienced parents can help so much! There are books that are available, but I think the online community is best. Having T1D children meet other children in their communities is a very good idea. Diabetes camps in the summertime are an excellent idea. Attending the Friends For Life conference in Orlando, FL is another source that I have seen work so well with children who are type 1.

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Richard at 76, having lived with T1D for 70 years

If you’d like learn more about Richard’s life with type 1 diabetes, then check out this video interview where Richard shares his experiences with Daniele Hargenrader. Richard was also interviewed about living with T1D for over 7 decades on Diabetes Mine. Richard will also be a speaker at the 2016 FFL conference in Orlando, FL. You can follow Richard on Twitter @Richardvau157.

Team Pancreas: Caregivers Matt & Rachel

How would you describe your child’s condition?

Matt: Henry has type 1 diabetes. This means that his entire life is centered around the fact that his body does not produce the insulin he needs to process glucose, so we check his blood sugar about ten times a day by poking a small needle into his finger and adding that drop of blood onto a meter that tells us what his BG (blood glucose) is. Depending on what the number is, we give him insulin, sugar, or wait. This means that we deal with low blood sugars, which are potentially, immediately, fatal; high blood sugars, which can have drastic, long-term consequences for his life; or “normal” blood sugars, which help keep him healthy. We get up every two hours every night to help maintain his blood glucose. Two weeks ago, Henry looked at me and said, “Diabetes is a hard life.” I agree.

Rachel: Our son, Henry, has an autoimmune disease, type 1 diabetes. Something triggered his beta cells to stop producing insulin, so he must take subcutaneous insulin for the rest of his life, test his blood glucose 8-12 times a day and always account for the carbs he eats with insulin. There’s never a break from type 1 diabetes, because the person with diabetes or the person’s caregiver/s is trying to replicate a job the pancreas once did.

What care for your child is required, and how do you and your partner divide this care?

Matt: We make sure that he gets enough insulin to cover the carbs (sugars) he eats so that his blood glucose does not get too high and cause damage to his organ systems. We also make sure that his BG does not drop to a low level that could result in seizure or death. We count all of the carbs he eats and program his (miraculous) insulin pump to keep him in balance. We also change his pump site every two to three days, as well as his constant glucose monitor (CGM), another amazing device that keeps us updated on an estimate of his BG. Rachel definitively manages the difficult logistics of this care. She deals with insurance companies, refills at the pharmacy, and talking to the reps at Animas (insulin pump) and Dexcom (CGM).

Rachel and I both deal with the daily stresses of handling diabetes. We both count carbs, take BG readings, get up in the middle of the night and evenly split the duties of changing Henry’s pump and CGM sites. Henry has developed a pretty nasty allergy to the tape that holds both of these machines onto his skin, so we have to take a lot of precautions to make sure that his exposure to them is minimized. Rachel reached out to the diabetes online community and found people who helped us come up with solutions when our docs had basically given up and asked us to go to multiple daily injections.

The best balance that we have, in terms of day-to-day care, is that Rachel is very good at keeping track of what Henry needs medically and practically; she amazes me with how much she has learned about diabetes and its care—  and I am helpful in the ways that I try to create some distance from a life with diabetes and a “normal” life for Henry. I’m probably more likely to encourage us to get ice cream or wait to change a site— this balance only functions because of how hard Rachel works.

Rachel: In the wise words of Kenny Rogers, “Know when to hold ‘em, /  Know when to fold ‘em / Know when to walk away / Know when to run.” I know when to hold ‘em, which comes in handy with the rigor and attention counting carbs and dosing insulin requires. Matt knows when to fold ‘em and let Henry live the life of a five year old with birthday parties, extra ice cream, and a day longer with a site. Henry will need both of these skills as he learns to live and manage his diabetes. Balancing diabetes is an art and a science, so I’m the science while Matt’s the art. Matt and I both know when to walk or  run away from a negative comment, failing site, or excessive carb scene.

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Team Pancreas

How has being a caregiver changed your relationship?

Matt: I don’t think it’s changed us fundamentally. We don’t always agree about everything to do with Henry, but we always talk about why we think a certain action is best in the certain moment. Ultimately, we are both focused on making sure that Henry is safe and protected. Chronic conditions are definitely an added stressor, and I’m sure that we get a little snappier at 3:00 in the morning, but we are both committed to each other and to caring for Henry.

Rachel: A lot, but a little. A lot because we are now caregivers for our son, who has a chronic condition, but not a lot because we decided to become partners and then parents together long before diabetes entered our lives, so we’ve mostly figured out how to handle stress and difficulty. A day to day difference is struggling with time, because everyday actions, such as preparing for a trip or eating at a restaurant, are now more complex and require discussion, preparation, and planning. We have to depend on each other more.  

Describe a caregiver technique you and your partner do differently.

Rachel: We both do really hard things. For the past 18 months I’ve put in Henry’s pump site, which feels like I’m stabbing him with a giant needle. Henry anticipates site changes, and it’s just awful to know that I’m causing my child physical pain, even if it’s for treatment. When Henry asks something like, “Will I have diabetes when I’m a grown up?” Matt can answer this question honestly and have Henry laughing within a few minutes, whereas I have to leave the room because I don’t trust myself to answer without getting choked up.

Matt: We have split things up, but we talk or text at least two or three times a day about his care when we are both at work. Changing the site of Henry’s pump is stressful because of the precautions we have to take with his skin and because he dreads them. We put Lidocaine on his skin to decrease the pain but they still worry him. I prep the area on his skin and get the pump primed to administer insulin and hold him while Rachel actually inserts the pump.

In twenty words or less, describe your partner’s caregiving superpower.

Rachel: Matt’s superpower is levity that inspires patience and laughter, needed in the shadow of a wrong number at the right moment.

Matt: Rachel’s superpower is her love for Henry and how this gives her a laser-like focus on keeping him alive.

#DOCtober & Advocacy

Kerri Sparling is one of the first diabetes bloggers. Her blog is Six Until Me. Shortly after our son was diagnosed, I discovered her blog and quickly appreciated its humor, honesty, and heart.

November is diabetes awareness month, and many diabetes bloggers and advocates plan special media campaigns to generate awareness and fundraising for research. But before we get to November, there’s October.

Kerri has created #DOCtober, where the idea is to take a picture everyday and, “to see if I can find something diabetes-related to photograph for the month.  If I can, awesome.  If I can’t, that inability shows how diabetes can’t and shouldn’t always be front-and-center” (Sparling, “Photo Challenge: #DOCtober”).

So in the spirit of advocacy and awareness, here’s Semisweet’s first #DOCtober.

View this post on Instagram

Dinner of 52 #carbs by a mum & pumpkin #DOCtober #t1d

A post shared by Semisweet (@semisweett1d) on

Semisweet will participate in #DOCtober on its Facebook and Instagram page. Join us there as we document each day in October, some where diabetes is in the frame, and some where it isn’t.

#DOCburnout2015: Looking Ahead to Diabetes Burnout

The kids are tucked in, the kitchen is cleaned, school lunches are packed, and my husband and I finally sit down to watch a T.V. show before bed. During the opening credits something beeps. We pause the show and listen again for the beep, which could mean a number of things: there’s only 10 units of insulin left in the pump, there’s an occlusion in the pump, our son’s blood sugar is rising (or falling) rapidly, he is high, he is low, something needs calibrating or is out of range, a battery is dying.

Sure enough, there’s the beep again. We look at each other, wondering who’s turn it is to address this diabetes need this time. Diabetes has a knack for needing attention at almost every inopportune moment and roughly every two hours during the night.

Our son is young, so right now we manage his care, and we’re his parents, so as any parent knows, the motivation to keep a kid healthy is a deep biological drive. If one of us could have Henry’s diabetes instead of him, we’d do it in the blink of an eye, but we can’t. Instead, we’re teaching him to manage this disease one task at a time.

We’ve only been living with diabetes for 18 months, and certainly we were scared that first night in the hospital, but not like we’re scared now.  Part of the reason we’re more scared now is because we’ve read stories in the Diabetes Online Community (DOC) that don’t end welll. We’ve done research and understand what the risks and complications are. We’ve tried to manage blood sugars and learned that sometimes no matter how diligent you are, a blood sugar cannot be controlled.

While there is a lot to fear when living with type 1 diabetes, the fear isn’t very helpful. My son is four. Do I really need to be worried about him driving a car right now when that’s eleven years away? It’s not useful to worry over potential line items on his 504 when this meeting is still a year away. And it’s not entirely fair to say the DOC creates fear. Sure, stories like Kycie’s and Will’s circulate, but these stories should circulate because diabetes is a serious disease. If we weren’t sharing stories like Kycie’s on the DOC diagnoses would be missed and efforts for standard blood glucose screenings wouldn’t be part of the conversation. If fear is a result of being part of the DOC, then so are solutions, better glycemic control, inspiration, and humor, and I’ll take all this over fear any day.

I can usually set aside the future fears and deal with the daily tasks, but one fear is more nebulous, and that’s the fear of burnout, a complete and total lack of interest, and investment in diabetes care due to denial or a set of complicated emotions. My husband and I can play rock-paper-scissors to determine whose turn it is to make the beep go away, but what will Henry do when he’s 15 or 18 or 20? I’ve heard and read testimonies of teenagers who completely disregarding their diabetes because if they don’t acknowledge T1D then that means it’s not real. And this is reasonable because teenagers are tasked with managing an unmanageable disease during a time of quick physical change and great social pressure coupled with needed independence from adults. Being a teenager with diabetes is like sailing into a perfect storm.

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Type 1 diabetes can’t be ignored, not even for a meal. It’s the long uphill trudge that I dread for Henry. The knowledge that to do almost anything he wants: eat a piece of cake, take a shower, turn a key in car’s ignition this means he always has to do something before. Strict attention and action will be required before the most basic tasks, tasks most of us do multiple times a day without a second thought. He’ll always have second thoughts. I hope the DOC is a place he’ll go to give and get some of these thoughts.

Henry, Beyond Type 1

The Diabetes Online Community (DOC) is growing. Beyond Type 1 was founded in “February 2015, and seeks to bring a new level of respect, understanding and support for those living with type 1 diabetes.  BT1 wants to highlight the brilliance of those fighting this disease every day while always working toward ensuring a cure is on its way” (beyondtype1.org). BT1 has a great Instagram account that shares an image and a story, just like Henry’s story.

Henry’s story on Beyond Type 1’s Instagram: I live beyond by telling my friends about my pump. I’m brave when I get site changes. When I grow up I want to be a paleontologist and look for dinosaur bones on the beach! My name is Henry and this is how I live beyond!

Oops, I Became an Advocate

We stopped in Jekyll Island for a few days of relaxation after our first ever Friends for Life Conference, which is a Children with Diabetes event. Our four year old had been living with with Type 1 Diabetes for 16 months. In the previous weeks, the CEO of CrossFit tweeted ignorant, harmful remarks about diabetes and sugar, and a four and five-year-old passed away from complications of undiagnosed Type 1 Diabetes after seeking medial care and getting misdiagnosed. The past few days images of our four-year-old son sitting at the pool or playing on the beach filled me with pride and sorrow.

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I believe there is power in story. I believe it takes a village. Given these two premises, I started a blog fueled by the power of story about lives, research, and advocacy as it relates to T1D. The Diabetes Online Community (DOC) has been and continues to be an amazing resource for advice and inspiration, so I wanted to be a part of this community. While a cure for Type 1 remains elusive, grass root organizing and sharing, just like the effort undertaken by Night Scout Project #WeAreNotWaiting, can lessen the burden of this disease. This is Henry’s story, and the story of all the people who love him told one number, one day, one fear, one high, one low, one laugh at a time.