FDA looks #BeyondA1C

When I was at the recent #AADE16 meeting, I heard and read a lot about looking at outcomes other than A1C. This was the first time I actually heard someone mention “patient-driven outcomes.” Thinking about things that matter to people with diabetes – what a concept! Things like quality of life, hypoglycemia, and time in target (blood glucose range) I can get behind.

On August 29th the FDA is holding a day-long workshop where they will listen to public comment on what matters to people with diabetes. What kinds of outcomes do we want them to look at in order to develop drugs/technology that would be helpful to us?

From the workshop description:

The ultimate purpose of identifying and qualifying these outcomes for regulatory purposes would be to continue to support the development of novel therapies that directly address the needs of diabetes patients living with the disease. There will be an opportunity for questions and answers following each presentation.

And here is the complete info on the workshop – you can join virtually if you won’t be in Maryland next Monday. Sign up by August 26th. And diaTribe is asking us to submit videos with our ideas for outcomes beyond A1C.

Here’s mine. As a diabetes professional, I believe that developing or perfecting diabetes drugs that could limit or eradicate hypoglycemia would be incredibly beneficial. Many people purposely run high – and risk complications – because they fear hypoglycemia. I have met people with post-traumatic stress disorder (PTSD) related to severe hypoglycemia events that occurred during childhood. Additionally, signs and symptoms of hypoglycemia change over time, and risk of severe lows and hypoglycemia unawareness increases. Personally, I find hypoglycemia incredibly annoying. It interferes with my ability to get things done or to sleep through the night. It’s frustrating and a waste of time.

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What diabetes educators do…

I recently returned from the American Association of Diabetes Educators’ Annual Meeting. There we shared ideas, learned new concepts, met new people, grew, expanded our understanding, viewed new products, and more. Being at a national meeting always feels larger than life.

Then today, back in rural Colorado, I drove 30 minutes into the countryside to teach a child care provider how to take care of a 2-year-old who has type 1 diabetes and will be starting at her day care next week.

I can’t help but think that what we do – from the huge to the miniscule – is awesome. I love being a diabetes educator.

PS I also love child care providers who are willing to watch (tiny!) kids with diabetes. You rock!!

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Diabetes devices are great, but…

Be sure that you are comfortable, confident, and knowledgeable about how to manage diabetes without the fancy gadgets and gizmos in the event that technology fails. And technology does fail.

Calculating doses (by hand!), not knowing blood glucose levels, counting carbs – all this might be necessary when devices don’t work. It’s kind of like paper charting in a hospital. Once hospitals convert to computer charting they like to forget that paper charting ever happened (many current health professions students have never charted with pen and paper). But when the computer system crashes, paper charting it is.

Same thing when there’s a power outage in a hospital. Back up generators can help a lot, and so can a back up diabetes plan. Just in case you didn’t already have enough to think about, add being prepared for anything at all times to your list.

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Diabetes and Water

Finally some good news! According to a study by the CDC, Americans are drinking enough water. Now that I think about it, I really haven’t heard much about drinking 8 cups of water a day lately. And I guess that’s because we’re doing it! Actually, it appears we’re not just getting hydrated through water consumption, but also through other beverages and even water-based foods we eat. But drinking water is still the best way to hydrate.

Hydration is important for everyone, and maybe even more so for those with diabetes. When you have diabetes, the risk for dry skin is higher. The best way to prevent dry skin is to keep our bodies hydrated (moisturizing cream is a treatment for dry skin, while drinking water is a prevention).

When blood glucose is elevated, drinking water is even more important for staying hydrated – elevated blood glucose can cause dehydration.

Dehydration can lead to feeling fuzzy and even passing out. Sounds similar to low blood glucose symptoms, doesn’t it? Another reason to stay hydrated – we don’t want to confuse the two.

Water, however, is NOT a treatment for low blood glucose. Many years ago I came upon a man who was low and a security officer said, “Don’t worry, we have someone getting him a glass of water.”

And a trick when you are feeling cold is to drink cool or even lukewarm water. Ask for no ice in a restaurant. Of course, in most parts of the country the 4th of July is a hot, sunny day, and cold water is refreshing. In fact, I think I’ll go have a glass of water right now.

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Diabetes Parallels

I sometimes notice little diabetes parallels in routine life moments. I just threw a glass jar into the recycle bin in our garage. Ordinarily this is a pretty straight forward thing. I open the door to the garage (in our laundry room) and throw the object in (we don’t have to sort anymore). I don’t need to turn the light on or anything – it’s right there and it has a big opening.

Only tonight the recycle bin was out on the curb (thanks to my son). So when I tossed the glass jar into the dark garage, it hit the concrete floor and shattered. Just like when we take insulin without checking a blood glucose, or treat a low with everything in the refrigerator.

Lessons learned: look before you toss and paying attention pays off.

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one way to ease the burden of diabetes

Diabetes is scary and depressing for 25% of Australian teens with the disease (according to one study). One (pretty simple) way we can lessen the stress for adolescents and others with diabetes is to use language that builds on their strengths and empowers them. This is a subtle way to encourage success, decrease guilt, anger and fear, and hopefully counteract the depressing nature of the disease. Let’s do away with words like “diabetic,” which is a reminder that we’re different; “compliance” and “control” (or “uncontrolled”), which are simply judgments; and “test,” “good/bad” and “diet” which have negative connotations. The choices involved with managing diabetes are complicated and tiring enough. If these kids never heard these words, perhaps their experience living with diabetes would be that much easier. Who knows, but it seems worth a try.

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Diabetes Disclosure

I recently saw this question on twitter: “Should or shouldn’t you disclose your diabetes to your professors or employer?” I was particularly struck by the words should and shouldn’t.

Here’s how I would reword the question:

“Do you disclose your diabetes to your professors or employer? Why or why not?”

Disclosing your diabetes is your choice. There are many factors that play into whether or not someone lets people know they have diabetes and it can vary by person or situation.

I hope that professors will (d0) treat you like an adult. If you need to leave a class for diabetes-related reasons, it wouldn’t matter to the professor as long as you are respectful, get the information you need and hand in your assignments on time. If you find you need to leave class frequently, there may be bigger concerns at play.

When it comes to employers, I may or may not disclose my diabetes. I do make sure at least one co-worker/colleague knows, however. The friends I hike with know I have diabetes and how to treat a low, should I need their help.

Diabetes management – every aspect of it – is about choices. We make those choices every minute of every day, and take safety into consideration. Choosing whether or not to disclose is no different.

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The Computer in the Room

When you are in a health-related appointment do you feel like the computer gets more attention from your provider (physician, nurse practitioner or physician assistant) than you do?

Back in the early 90s hospitals started converting to electronic charting. That means typing notes into a computer, rather than writing them on a paper chart. It also means documenting during visits, rather than waiting until after the patient leaves. The downside to this new(ish) practice is less eye contact with patients, and potentially more attention on a computer than a person.

This is something we discuss in classes at the Diabetes Education and Management Master’s Degree program where I teach. The person with diabetes is the center of the health care team, the most important person in the room, and the reason we do what we do. Therefore, anything that takes our attention away from that person is not what we mean to be doing.

The hard part is that various agencies require health care professionals to document all sorts of information. It really is easier to enter it into the computer right as we go – as we are asking the questions and gathering information. My endocrinologist sits at a table across from me and enters data/information in the computer as he talks to me. This has never bothered me before. The computer is off to the side, so I don’t feel like it’s in the way of our conversation. And he does look at me as well as the screen.

On the other hand, if you feel like the computer is getting in the way of your care or your relationship with your provider, say something. Then again, if you are not comfortable telling your provider that computerized charting during the visit is bothersome to you, discuss it on social media, and trust me, word will get back to health care providers in a hurry.

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Diabeternity

Here’s an idea to go along with the whole “Me-ternity Leave” discussion: diabeternity. This could be interpreted as “diabetes for eternity” or as a leave of absence to get diabetes in check. Or both. Or neither.

Last month there was an article suggesting how Me-ternity Leave should go. It’s hilarious and spot on. And it made me think about Diabeternity Leave. Just like it would be nice to have time off without kids, it would be nice to take 12 weeks off of life in order to adjust to and learn about diabetes. But that’s not reality.

So instead we take it on – as patients or parents or caregivers or whatever the case may be. We don’t make excuses or ask for special privileges. We learn how to make choices and poke fingers and take medications and inject and change sets/sensors and interpret numbers and calculate doses. And make choices.

Life is about choices and so is diabetes. Although no one chose to get diabetes, those of us who have it can choose how we respond to it. So until there’s a cure there’s Diabeternity – let’s have fun with it.

 

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New Dietary Guidelines for Americans

The U.S. Department of Health & Human Services and the U.S. Department of Agriculture have recently released their guidelines for healthy eating. These guidelines are meant to help people prevent health problems.

The guidelines emphasize the importance of eating a “wide variety of fruits, vegetables, grains, and dairy products, while staying away from  processed foods heavy in saturated fats, sugar, and cholesterol” (and trans fats). They also recommend significantly reducing the amount of added sugars and sugar-sweetened beverages from the American diet.

They really highlight the importance of eating a wide variety of foods. They also acknowledge that focusing on “small shifts in what we eat and drink” makes it easier to eat healthy. Another way to make a change is to focus on patterns and not just individual food choices.

These “common sense” guidelines are equally aimed at and important for lay people and health care providers. Although they don’t contain drastically different or new information, they make a basic point about healthy eating for everyone.

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