Type 1 diabetes – dancing with a Tasmanian devil

What is it really like to live every single day with type 1 diabetes? This blog is being turned over today to one of my newsroom colleagues who can speak frankly about it: She and her husband have firsthand experience with the ups and downs, the fears, the frustrations and triumphs of being the parent of a child with type 1 diabetes.

Type 1 diabetes is most often diagnosed among children and young adults and occurs when the body is unable to produce insulin. An estimated 3 million Americans – both children and adults – are living with type 1 diabetes; they account for about 5 percent overall of people in the U.S. who have diabetes.

By Gretchen Schlosser

It was March 2011, my husband and I had just been informed that our older son had Type 1 diabetes. Still in shock, we met with a pediatric endocrinologist at a major Twin Cities health clinic. We didn’t believe a word of it when the doctor said that his diabetes wouldn’t completely take over our lives.

“Really, once you get used to it, this will only take 10 minutes a day,” he said, referring to the blood glucose testing, carbohydrate counting and insulin dose calculating process that had to happen before any meal or snack and at least four times every day.

Twenty months later, the doctor’s statement has proven to be true. My family only spends a small amount of time every day addressing our son’s diabetic needs.

That’s not to say that the entire family didn’t work pretty hard to bring our heads and our hearts around to accept the changes in our lives. We had a steep learning curve to learn to accurately count carbs, recognize high and low blood sugars and give insulin doses. We also had to emotionally accept the rearranging of our lives to address his diabetes. Never mind the deep financial hole to fill due to his ongoing medical bills.

Plus, we had to realize – like so many families with kids with chronic health conditions – that our lives were always going to be different and that healthy people cannot or will not understand our situation. It was kinda like dancing with a spinning Tasmanian devil. A lot of people just stepped away because they felt uncomfortable being so close to something they didn’t understand or were afraid of.

November is diabetes awareness month. My goal is to help you help families of Type 1 diabetes (T1D) children experience as normal a life as possible. You can’t take away the child’s need for insulin and control his/her blood sugar, but you can:

- Replace pity with empathy. Ask questions and air your concerns — preferably without the T1D kid around to hear — with the parents to learn what to do to help the child participate fully in events and activities. The parents can give you full instructions and probably already have a written list for you to follow.

- Understand that it’s not about sugar! Diabetics count carbs and carbs are in almost all foods, except meat and cheese. Bread has carbs. Milk has carbs. Fruit has carbs. Veggies have carbs. If you’ve never read that far down the side of the cereal box, look toward the bottom of the nutritional label and you’ll see “carbohydrates” listed grams. That’s what diabetics use to count and calculate their insulin doses.

- Try to disconnect food from social activities. One of my biggest peeves is that our society does EVERYTHING with food, usually sugary cookies, bars, cakes, candy and sweet drinks. When you are the host of an event, ask yourself if people actually need to eat during the event and if the prizes/handouts have to be candy or sweets. What’s wrong with handing out pencils, erasers, trinkets and doo-dads instead of candy?

- If you are a family member or close friend of a T1D family, take it upon yourself to learn to count carbs, recognize high or low blood sugars and understand how to calculate an insulin dose. My child now has an insulin pump that automatically figures the insulin dose, so if other trusted adults in his life can count carbs and watch him push the buttons on his pump, he can hang out for the evening or have sleepovers at their house!

- Learn more about T1D by visiting the JDRF website at www.jdrf.org. The organization is a world leader in education and research to find better treatment and a cure for T1D.

- If you know of a family that’s dealing with T1D, pass on information about this support group. The JDRF-based group meets from 6 to 7 p.m. on the first and third Thursdays at the Willmar Public Library, beginning on Nov. 1. At this time, the meetings are for parents only. T1D parents and caregivers – I hope to see you there!

About those clinic rankings

I know many of the local health care providers well enough to have a good idea of how they must have felt at seeing their favorable performance in a statewide ranking of medical practice quality, published this week by Consumer Reports. It must have been a really good moment for them.

My own reaction? A rush of smugness (or pride, perhaps) for being a patient at a medical practice that did so well.

But on second thought, this may not have been the best response, because it’s not really the purpose of rankings like these to enable people or organizations to feel superior – or, in the case of lower-performing clinics, to be singled out as sub-par. The purpose is to provide one of the many pieces of information that go into health care decisions – which clinic patients should choose and which doctor to see, what type of care an organization should provide and which internal systems should be created for delivering good care.

In an introduction to the special report, Dr. John Santa, director of the Consumer Reports Health Center Ratings, explains why it’s important to collect and share the data:

First, it generates conversations among doctors about changes they can make in their practices to lift the quality of care they provide to patients. And making this information available to patients leads to one of the most powerful forces driving improvement – educated health-care consumers.

The report points out that many factors can influence the performance of a given medical practice. Some of it depends on the patient population that’s served – whether the clinic sees a large number of people who are uninsured, for instance, or has a concentration of frail elderly individuals for whom aggressive disease management might not be appropriate.

A well-known name or suburban location doesn’t necessarily equate to the best care. Many of the top-performing clinics did not have a high public profile, and many were in rural Minnesota.

So how can consumers use the rankings in a meaningful way? What they should not do is flee from a medical practice that didn’t do so well in the rankings – at least, not without careful thought. The advice from Consumer Reports:

Instead, use our Ratings as an opportunity to talk with your doctor about how you can work together more effectively to manage your health. Ask what the practice is doing to improve its performance, and whether its scores are moving in the right direction. And remember that your participation is key, too. Your doctor can only make recommendations; you have to follow through on them.

There’s also the larger picture to consider. Minnesota Community Measurement, the main source of the data for the Consumer Reports rankings, tracks many other measures besides diabetes and cardiovascular care. Medical practices that are mediocre at managing diabetes might perform much better at managing asthma or depression or encouraging patients to follow through with recommended cancer screenings. A medical practice that earns an average ranking one year might improve significantly the next.

Finally, there are the intangibles. Are patients able to have a good relationship with the doctor? Is the staff competent and professional? Is the practice welcoming, and does it take patients’ special needs into account? These things are very difficult to measure but they can matter a great deal.

Perhaps the most important thing about the rankings isn’t the singling-out of who’s the best and who’s the worst. It’s the fact that there’s a useful rating system at all. Not that long ago, information like this simply wasn’t available – or, if clinics were tracking some of these measures internally, it wasn’t shared with the public. Now it’s out there for everyone to see, to talk about and to use the data as a spur for continued improvement.

What’s really remarkable – and something I’m not sure is recognized enough – is what it takes to achieve quality care. Because so much of the effort happens behind the scenes, patients generally don’t see it. Over the years, though, I’ve had glimpses of what’s involved and have come to realize the tremendous amount of work that’s required to earn a good rating. Sustaining this effort week after week, year after year, is even harder.

So, yup, we ought to feel good (and maybe indulge in a few moments of pride) when our clinic does well. Good performances don’t happen by accident.

A letter to Paula Deen

Paula, Paula, Paula.

By now, you’re probably tired of all the fuss – the criticism of your calorie- and cholesterol-drenched cuisine, your recent revelation that you have type 2 diabetes, your new contract with Novo Nordisk to pitch one of their diabetes drugs.

I’m not going to nag or get all judgmental on you. Others have already done so – for instance, chef and Food Channel host Anthony Bourdain who sarcastically tweeted this week, “Thinking of getting into the leg-breaking business, so I can profitably sell crutches later.” Or an editorial in the Star Tribune of Minneapolis, which criticized you for promoting “a lifestyle elevating feeling good for a moment above everything else” and concluded, “It’s time for her to become a force for good instead of a force for fat.”

But I have to ask, Paula: What the heck were you thinking?

I’m a teensy bit embarrassed to admit that although I recognize your name and know you’re a celebrity chef/restaurateur who has written books and appeared on TV, I didn’t know much about your culinary style other than that it’s “Southern.” After the story broke this week, I looked up some of your recipes online and I was… well, taken aback, to say the least.

Deep-fried apple turnovers. Macaroni and cheese loaded with butter, sour cream, milk and cheddar cheese. A pie made with Twinkies. A “chocolate cheese fudge” containing half a pound of Velveeta, half a pound of butter and two pounds of confectioner’s sugar. Velveeta doesn’t belong in fudge, Paula. It isn’t even a food.

In some ways, though, I can’t help admiring you. From the start of your career, you aimed unerringly at America’s pudgy underbelly – our collective instinct toward food laden with sugar, butter and grease. It was a smart business decision. You made millions catering to the most unbridled aspects of the human appetite and America was only too happy to help. In this, your fans have been complicit.

But is this what you really want to be remembered for? Your love of food appears to be genuine but is this the example you wanted to set? Now the deep-fried chickens have come home to roost in the form of type 2 diabetes and what I see is… denial. Sorry to be harsh, Paula, but it’s true. You even kept your diagnosis quiet for three years, meanwhile continuing to serve up butter, sugar and calories like there was no tomorrow.

Lending your name and celebrity reputation to help a pharmaceutical company hawk its diabetes drug doesn’t even the score. At best, your fans are probably wondering if you’re being used. At worst, your critics are accusing you of being an opportunist.

The whole lifestyle change thing is hard. I get that. What I don’t get is how someone with your brains, your talent, your business acumen, your charm, ever ended up here in the first place. It didn’t have to come to this, Paula, and it’s not too late to make amends. Put down the butter and walk away. I’m surviving just fine without Twinkie pie and fried cheesecake, and so can you.

Photo: Associated Press

The diabetes wars

Even if I didn’t already know November is American Diabetes Month, the flood of news releases into my email inbox would tip me off.

And I can’t help noticing that while most of them contain helpful statistics and information, all too often there’s something missing. Amid all the general references to diabetes, there’s seldom a mention of the fact that diabetes comes in two forms, type 1 and type 2, or an attempt to differentiate the two.

Should it matter? After all, they’re both diabetes. If you talk to any of the 26 million American children and adults with diabetes, however, it soon becomes clear that while they have much in common, there also are distinct differences in their experience of living with and managing type 1 vs. type 2 diabetes.

A quick overview: Type 1 diabetes develops when islet cells in the pancreas stop producing insulin, typically due to autoimmune, environmental or genetic factors. It develops rapidly and requires daily, lifelong insulin injections.

The mechanism behind type 2 diabetes is insulin resistance. These individuals might still be producing insulin in their pancreas but their body can’t use it effectively. Type 2 diabetes often develops slowly and can be delayed and/or managed with nutrition, physical activity and weight loss.

Type 1 diabetes sometimes is referred to as juvenile diabetes because it most often develops in children and teens. It’s not an entirely accurate name, though, because this form of diabetes can occur at any age. Likewise, type 2 diabetes, which has traditionally been seen as a disease of adults, is increasingly being found among high-risk children.

No matter what you call it, there’s no arguing with the numbers. The incidence of type 2 diabetes vastly outnumbers type 1; for every person who’s a type 1, there are nine or 10 who have type 2.

It’s a minority status that can rankle with the type 1s, who often feel marginalized and misunderstood. Meanwhile, the type 2s have to deal with the all-too-common public attitude that if they have diabetes, it’s their fault for not taking better care of themselves. 

The differences between the two forms of diabetes, and who has it worse, are a very real – and sometimes divisive – issue for many of those living with this disease.

It was eye-opening to encounter an essay last year in the Huffington Post that examined the so-called diabetes wars and the arguments on both sides of the fence. The author, Riva Greenberg, has had type 1 diabetes since childhood and is an author, diabetes advocate and health coach.

“I’m truly tired of how little people know about the intense, exhausting and daily effort of managing type 1 diabetes,” she writes. With so much attention focused on type 2, “people with type 1 diabetes feel invisible, overlooked and are often blamed by an unknowing public for causing their own condition – eating ourselves into our disease. This isn’t the case for type 1, and frankly, it isn’t always the case for type 2.”

It’s time to find a new name for type 1 diabetes, Greenberg writes. “Recognition of type 1 as a significantly different disease than type 2 will help the general public understand that our diabetes can only be cured by more research while type 2 prevention and reversal requires a lifestyle change.”

The debate raged even more intensely at Diabetes Daily, where an online discussion last year argued whether it’s better to have type 1 or type 2.

One person wrote:

 What is so frustrating is even being compared to a type 2. I think it should be called a totally different disease and should not be linked… Anyone that is a “controlled type 2 diabetic” likely does not have a problem. There are countless of people that have totally erased type 2 diabetes from their lives because they have changed their eating habits.

Type 1 does not have this choice. It is a fatal disease, they must check themselves before every meal, after every meal, upon getting up, upon going to bed, and injecting a needle for every little bit of food they put into their body.

Not so fast, wrote someone else, whose father died of type 2 diabetes at age 63. It was a “very painful, terrible, slow death,” she wrote. “It is so awful and horrible hearing all these insensitive comments from people who think type 2 is a piece of cake.”

I think the lesson here isn’t which form of diabetes is worse. Both are challenging to live with, wrote David Edelman, who, along with his wife Elizabeth, is the cofounder of Diabetes Daily.

There are substantial differences between treating type 1 and type 2 diabetes. There are major overlaps, too. We all need to:

- Understand what’s in our food.

- Figure out what’s going on in our bodies.

- Use our insulin and medications effectively.

- Have positive relationships with our medical teams.

- Stay motivated.

Type 1s and type 2s need to “appreciate other’s struggles,” someone else wrote. “The reality is that the needs and issues of the type 1 community are not the same needs and issues that affect the type 2 community, hence why some of us are so vocal. I don’t think one type wants to ‘elevate’ themselves above the other, we just want a cure for our particular disease.”

A good start would be for the public to become better educated about diabetes and more understanding of the daily challenge of living with diabetes – type 1 as equally as type 2.

Photo: Wikimedia Commons

Nagging vs. helping

If your family member, friend or colleague with diabetes is eyeing a slice of cake and you’re tempted to intervene, Diabetes Daily has some advice: Back off.

For people living with diabetes, support is welcome. Nagging is not, says Elizabeth Edelman, the co-founder of the Diabetes Daily website and online community.

With 24 million Americans diagnosed with type 1 or type 2 diabetes, chances are most of us know someone who has this chronic disease. What are some effective ways to support them? More to the point, what’s not helpful? Edelman, who has type 1 diabetes, has these recommendations to share:

1. People don’t need their friends or family to be the diabetes police. Asking someone, “Should you be eating that?” can be unexpected, offensive and ”just plain rude,” Edelman says. “People with diabetes are constantly managing and adjusting their nutrition and so they know best the effects specific foods can have on their own bodies. React to their nutrition choices as you would anyone else and don’t judge every bite that goes in their mouth.”

2. Be prepared. Edelman suggests one way to show support is by keeping a small supply of juice or candy available in your kitchen, handbag or the glove box of your car, so it’s available if your friend or family member develops symptoms of low blood sugar. It can be comforting for people with diabetes to know there’s a backup nearby, she says.

3. Recognize that diabetes is a full-time job. Edelman writes:

Unless you have diabetes, you will never fully understand exactly how the disease affects every aspect of a person’s life all the time. Just having an appreciation for the fact that diabetes never goes away – despite having many “good days” – can provide a great deal of moral support.

4. Avoid the horror stories. People who do this often are well-meaning, but it’s not helpful to hear stories of someone’s friend or relative who had diabetes and ended up with serious complications, Edelman says.

5. Recognize there are different types of diabetes and take the time to educate yourself about which specific type someone has. Whether someone has type 1, type 2 or gestational diabetes, avoid judgment, Edelman says. “Remember, one type is not better or worse than the other.”

6. Ask questions. Most people don’t mind, as long as the questions are accompanied by a genuine desire to learn, Edelman says. It can also give people with diabetes a chance to feel empowered by educating others and sharing their experiences.

Although Edelman’s advice is primarily about diabetes, it could apply just as well to anyone living with a chronic condition: for instance, someone with heart disease, someone who’s trying to lose weight, or someone who’s trying to lower their cholesterol. Nagging rarely works and can often even backfire if people feel they’re being criticized or judged. Support that’s sympathetic and open-minded? Always good, anywhere, any time.

Photo: Wikimedia Commons

Noteworthy 1.0

Noteworthy stuff that has crossed my desk in recent days:

- It’s all about the nicotine: Efforts to reduce the health impact of tobacco use have historically concentrated on two key strategies: finding ways to help people successfully stop smoking, and preventing them from starting the habit in the first place. But in a rather striking development, a group of tobacco research and policy experts recommends giving new priority to the development of lower-nicotine cigarettes that are less addictive.

The thinking is that by lowering the nicotine level in cigarettes, current smokers will be less likely to become dependent. Also, adolescents might be less likely to experiment with smoking and progress into addiction. The proposal appears in the most recent edition of the Tobacco Control journal.

At first glance, it seems counterintuitive. Why would you focus on reducing the nicotine level in cigarettes, yet allow the behavior itself, i.e. smoking, to continue? But the researchers explain that prior studies suggest smokers won’t necessarily just smoke more to make up for the lower amount of nicotine in each cigarette; often they’ll smoke fewer cigarettes and many of them eventually quit altogether.

The authors of the Tobacco Control article think this strategy could reduce the prevalence of adult smoking in the U.S. from 20 percent, which is the current number, to 5 percent. It should be noted that the researchers include some heavy-hitters from Minnesota: Dr. Dorothy Hatsukami, who is director of the University of Minnesota’s Tobacco Use Research Center and the Masonic Cancer Center’s Cancer Control and Prevention Research Center, and Mark LeSage of the Minneapolis Medical Research Foundation and University of Minnesota.

- Reading the fine print: OK, so the health care reform law is controversial. But look at what it’s delivering to Minnesota: nearly $3.4 million in grant money to help boost the supply of health care professionals, especially in primary care.

Here’s how the money is being distributed: $1.3 million to the College of St. Scholastica in Duluth to expand the number of slots in its training program for primary care nurse practitioners and nurse midwives; $1.9 million to Hennepin Healthcare Systems to increase the number of primary care residencies for physicians in training; and a $149,000 planning grant to the Minnesota Department of Employment and Economic Development so it can assess the state’s current health care workforce and develop a plan to address the gaps.

Nationally, the Affordable Care Act is allotting a whopping $320 million to strengthen the health care workforce in the U.S. The grants are being coordinated through the U.S. Department of Health and Human Services.

Grouse all you want about the health care reform bill and its 2,000-page heft; this is one juicy tidbit that could prove to be enormously beneficial for the future of primary care.

- The kids are all right: How are the kids doing? They’re all right, at least in Minnesota – but there are hints of trouble, according to a newly released report from Children’s Hospitals and Clinics of Minnesota.

A couple of key findings: Children in Minnesota fall below the national average in childhood obesity. Among Minnesota children ages 10 to 17, 11 percent are considered obese; the national average is 16 percent. Almost three-fourths of children in the seven-county Twin Cities metro area also live in households with private insurance coverage.

Although this sounds encouraging, a closer look at the data reveals several areas of concern. Children from lower-income families aren’t as healthy as those from households that are better off. These youngsters also are less likely to have access to health care. There’s also considerable variation in health care coverage across the state. Nearly 13 percent of children in northwestern Minnesota are uninsured, and the lack of dental insurance is highest in the west central and southwestern parts of the state.

The report is the first in a series of whitepapers by Children’s Hospitals and Clinics, examining some of the most critical current issues facing children’s health. Data for the reports is analyzed by the State Health Access Data Assistance Center at the University of Minnesota.

Look for these issues to come up in the Minnesota governor’s race. On Oct. 11, Children’s Hospitals and Clinics and the Minnesota Early Learning Foundation will host a debate featuring all three candidates – Mark Dayton, Tom Emmer and Tom Horner – from noon to 1 p.m. at the Minnesota Children’s Museum in St. Paul. Can’t be there in person? Participate through social media channels at www.minnesotachildrensforum.org.

- Going local: How feasible is it for hospitals to buy local foods? Nearly 40 health care facilities in Maryland and Washington, D.C., gave it a try this summer, serving at least one food from a local farmer each day during a weeklong Buy Local Challenge. Collectively they spent more than $15,000 on fruits, vegetables, eggs and meat from local farms. More than half of the hospitals who joined the challenge were already buying local fruits and vegetables during the growing season.

Obviously there are challenges for hospitals who want to go local with some of their food purchases. Cost and institutional efficiency are major issues, as are nutritional requirements. There are also the medical needs of patients to consider. (Would lime Jell-O qualify as a local food?) Still, it’s an area in which hospitals can potentially set a community example in healthful, sustainable food choices.

Until I saw this news release, I wasn’t aware there’s an international organization called Health Care Without Harm, and that it has a “Healthy Food in Health Care Pledge” that to date has been signed by more than 300 U.S. hospitals. The pledge commits these hospitals to gradually increasing the amount of local and sustainably produced foods they serve to patients, staff, visitors and surrounding communities.

- Dog-gone amazing: We’ve all heard of service dogs and therapy dogs, and the benefits they can bring to their human companions. It seems some service dogs are now taking on a new role – sniffing out diabetes.

Assistance Dogs of the West in Santa Fe, N.M., is training dogs to detect the rise and fall of blood sugar levels via the scent of skin and breath in a person with diabetes. ADW says they placed a scent-trained dog with a man with diabetes just last month.

I’ve always thought dogs were amazingly wonderful creatures but this sounded rather far-fetched, so I did some online research, and sure enough, a small handful of studies have found that some dogs can tell when their human is having a hypoglycemic attack and can be trained to sound an alert. It’s obviously a huge leap to suggest people with diabetes would benefit from having a service dog, nor does there appear to be any scientific evidence yet that would support this. But to those of us who love animals, it’s a nice reminder of how smart and how aware the canine species can be and why it’s good to have dogs in our lives.

HealthBeat photo by Anne Polta

Linkworthy 1.1

A roundup of various postings and essays that recently grabbed my attention:

- MinnPost’s new health care blog, Second Opinion, takes a look at the myths that have persisted about the U.S. health care system. Blogger Susan Perry starts with the claim that health care in the U.S. is the best in the world. The next entry in this series addresses the uninsured (scroll down to find it).

- Weight is becoming synonymous with health – but is this really the best approach for patients? Dr. Meg Reitmeyer muses on "scale obsessional disorder" and how it’s altering our perception of good health. A sample quote from her essay in the current issue of Medical Economics: "The reality is that the scale is a poor surrogate for the overall health of a patient, yet each pound becomes a marker of victory or defeat."

- What is it like to have diabetes and be forced to deal with comments such as "diabetes is from eating too much sugar" or "diabetics are the reason for increased health care costs"? Kerri Morrone Sparling at Six Until Me tackles this issue in Stereotypes: We Haz Them. There are also some great perspectives in the comment thread.

- This story from Kaiser Health News examines the perspective of small-business owners: They want relief from the high cost of health care, but they don’t agree on how to get there.

- What should you do if you’re a doctor or nurse and you discover a patient – or someone in the patient’s family – has been blogging about the care being provided? What if the blog criticizes you? What if it’s inaccurate or names individual providers? A recent "case of the month" at the Kenneth B. Schwartz Center explores this thorny issue and the ethical challenges it presents.

- Finally, for a look at world health past and present, check out the online photo collection of the World Health Organization. The WHO has put together a special exhibit, "Picturing Health: 35 Years of Photojournalism at WHO." It’s a fascinating collection of historic photos that capture international health programs ranging from urban health to medical education.