Tag Archives: diabetes

Enlightened, but unknowing.

November 20, 2017 – 10:14 am

Even though it meant getting up very early on my day off from work, I was thrilled to go to Washington, D.C. last week for a diabetes town hall, co-sponsored by the Office of Minority Health at the U.S. Department of Health and Human Services, and the Office of Minority Health at the U.S. Food and Drug Administration.

The event, as you can imagine, was designed to facilitate discussion on ways to better promote diabetes prevention and care among the non-white populations in my country. I thought that was a terrific idea. After all, the prevalence of diabetes is much higher in non-whites than in whites here in the USA, yet many of the people affected are in vastly underserved communities, either due to socioeconomic reasons, location, or because their first language is not English. I get it, I thought. This is good.

But it turns out that there is still a lot I don’t know.

For instance… did you know that the prevalence of diabetes in the United States is highest among Native Americans and Alaskan Natives? At 15.1%, their risk of diabetes is over twice that of someone who looks like me. It turns out that 12.7% of African-Americans live with diabetes, and 12.1% of Hispanics do too. Only 7.4% of non-Hispanic Whites live with diabetes here.

But that’s not all. Eight percent of Asian Americans live with diabetes, but they are far more prone to being diagnosed with Type 2 diabetes at a lower body mass index (BMI) than other ethnicities. Those advocating for greater awareness among this population are touting an initiative called Screen at 23 to test all Asian Americans for diabetes if their BMI is at 23 or over.

As our presenters that day shared their data, it was clear that while I feel I’m enlightened, I really don’t know as much as I thought I knew. For instance, while there is data surrounding ethnic backgrounds of clinical trial participants, when we see a number that says “Asian”, we don’t know if the Asians in the study were of Japanese descent or Indian descent. When we see “non-Hispanic Black”, we don’t know if these are people of Senegalese or Jamaican descent. Those specifics could mean real differences in understanding the underlying data from a clinical trial.

How about this? Did you know that FDA has sponsored a Minorities in Clinical Trials campaign? The idea is to remove barriers to clinical trial participation for minorities, who, as a friend mentioned, may have transportation, job, family, or other special constraints that make clinical trial participation more difficult than it is for a lot of the majority population.

Did you know that people with prediabetes enrolled in a Lifestyle Change Program for a year under the National Diabetes Prevention Program at the Centers for Disease Control and Prevention (a mouthful… take a moment and breathe) showed, on average, a 5% to 7% loss in body weight, and had a 58% reduction in their risk of being diagnosed with diabetes? How do we promote the NDPP and its successes among states and tribal areas with vulnerable populations?

I learned a lot in this short, half day event. Here are a couple of nuggets that I heard more than once:

– We need additional data to understand segments of the various populations at risk for, and with higher prevalence of, diabetes. Subgroups of subgroups, if you will.

– Material and coaching rolled out to non-white populations need to be presented in a linguistically and culturally appropriate manner. One size does not fit all, and there is evidence that tailoring a message to its audience has a positive effect.

One of the words I heard mentioned a lot that day was disparities. The more we can reduce the disparities that exist in diagnosis; access to care, food, drugs, and devices; participation in clinical trials; and information that sends clear messages in terms that underserved populations can understand, the more inclusive we will be as a diabetes community, and the healthier all of us will be.

By StephenS | Posted in Events | Also tagged , , | Comments (3)

World Diabetes Day 2017.

November 14, 2017 – 12:15 am

Welcome to another World Diabetes Day! Just in case you were wondering, there will be 18 hours of diabetes chat on Twitter using the #WDDCHAT17 hashtag. Join the conversation anytime from 6:00 a.m. eastern time (US) until 12:00 midnight. I’ll be moderating the 7:00 a.m. to 8:00 a.m. hour, talking about Using Your Voice. Don’t worry, I won’t ask you to do anything too strenuous at that time of the morning…

This World Diabetes Day, the International Diabetes Federation has focused its attention on women living with and affected by diabetes worldwide. To find out how I feel about that, CLICK HERE. I couldn’t have said it better myself. Probably because I’m not a woman.

So, we’ve made it another year, and just like every year, some things have changed. Likewise, some things have stayed the same. Let’s talk about that.

What has changed in diabetes in the last year? Two things immediately come to mind: two more insulin pump makers went away in the United States. And we have an additional choice in continuous glucose monitors. I’ll miss you, Animas. I hardly knew you, Roche. Welcome to the U.S., Freestyle Libre.

But there’s more. In the advocacy space, DPAC has been the driving force behind the Affordable Insulin Project, helping to keep the conversation going when it comes to access to the most important hormone in the entire world to those of us living with this condition. The continuing #BeyondA1c, conversations have been helped us move toward more meaningful benchmarks in managing our diabetes. So, advocacy-wise, there is some really next level stuff going on.

Also, I love being able to write “next level stuff”.

What has stayed the same in the last year? Well, I still have diabetes. That’s the same. Also, insulin is still expensive. I wish that wasn’t true. But it is.

What else is the same? I’m sorry to report that divisions within the diabetes community still exist. And that’s shameful. Look, we all have crappy pancreases. Every single person, every single soul, is important. I don’t care about types or what you think of them. Just like we want to take care of our entire bodies, let’s work on taking care of the entire body of everyone living with diabetes.

I long for the time when I can write that the things that have stayed the same in diabetes are wonderful things.

There’s a lot more to talk about. What has changed for you? What has stayed the same? We all have the same disease, but we all have different perspectives. I hope this edition of World Diabetes Day brings you more health, more hope, and most of all, more happiness.

By StephenS | Posted in World Diabetes Day | Also tagged , | Comments (0)

The Last Five Years.

November 7, 2017 – 10:18 am

There’s a play, from a few years back, with words and music by Jason Robert Brown, called The Last Five Years. This post isn’t anything like that, but when I was listening to music from this show a few days ago, I did, indeed, reflect on the last five years in diabetes.

Have you thought about how much has changed in diabetes in the past five years?

You need to go no farther than your Facebook, Instagram, or Twitter feed to find examples of the latest drug, device, app, or DIY AP (Acronyms!) that someone is using. And that’s just fantastic, whether you use any or all of these things.

The Lions Club meeting I attended and spoke at last week had to do with food, and its role in helping People With Diabetes get and stay healthy. One of the things I told this group is that our food choices are important. But I also think of using a toolbox approach to managing life with this condition.

Knowing what specific groups of food do to your blood sugar, and making informed choices based on what you know, is just one tool in the box. Now, let’s take a look at some of the other tools added to our toolbox in just the last five years:
 
 
What about the new classes of drugs available today? They may be expensive, but there’s no question that medications like Victoza, Farxiga, and Afrezza have been beneficial to managing blood sugar, and helpful in just giving us more options to choose from.

I’ve been one of the loud lamenters of the fact that PWDs are down to just three insulin pump choices in the USA now. But what is available seems to be an improvement over previous versions of insulin pumps. Just ask anyone using the t:slim x2, the latest Omnipod, or the Medtronic 670g.

While insulin pump choice is shrinking in my country, continuous glucose monitor options are expanding. Abbot’s Freestyle Libre has been approved by the Food and Drug Administration, and we’re all anxious to find out if it works as well as we’ve heard it does. Which brings me to…

DIY artificial pancreas adopters! This is what the hashtag #WeAreNotWaiting is all about. There are Facebook groups, in-person user group meetings, and people flashing their rigs on Instagram and Twitter. Did you see this coming five years ago? Where will it be five years from now?

There are tons of diabetes apps out there. And more are coming online every day. Some do bolus calculations, some display your CGM reading on your phone (thanks Dexcom), and some allow you to download all of your devices in one place, then allow your medical professionals access to the uploaded data. I’m sure someone was thinking about this five years ago, but it wasn’t me.
 
 
Our lives with diabetes, much like diabetes itself, is ever-changing. It’s interesting to look back on the Last Five Years and see the myriad of changes that have occurred. It’s exciting to think about what The Next Five Years will bring.

By StephenS | Posted in Diabetes | Also tagged | Comments (0)

Advocacy with a little “a”.

November 2, 2017 – 10:18 am

#DAM
#NDAM
#T1DLookLikeMe
#WDD
#WDD17

However you hashtag it, Diabetes Awareness Month is here again. And right behind it, a feeling of being overwhelmed by the sheer magnitude of all the posts and blue circles and everything else that makes up November for those of us living with and affected by this disease.

Then, sometime after we get over feeling overwhelmed, we move into the feeling guilty phase, where we compare ourselves to those who seem to have all their DAM Diabetes Awareness Month shit together better than we do. Especially when it comes to advocacy.

So before this gets out of hand, let’s stop long enough to take a big breath…

I’m fond of saying this to people, and I’ll probably say it tonight when I speak in front of a group from our area. This might even come as a shock to you, but here it is:

The effects of advocacy are large…
The steps we take to practice advocacy are often very small.

Hey, I want to take on the world too, and I want to bring the diabetes awareness to the masses in ways that have never been imagined before. Will I? Not this week.

Instead, tonight, I’ll sit with my neighbor, a dietician at Johns Hopkins Hospital, in front of about 20 Lions Club members. I’ll tell them about what it’s like to have to think about every single piece of food you put in your mouth, every time you eat.

I like to call that advocacy with a little a. I won’t be presenting in front of hundreds at some symposium on another continent. I won’t be crossing the country to organize and lead a protest. Instead, I’ll be heading off to Golden Corral and sharing what I know, so the people in attendance can share my message with others.

It’s a small thing to do, this advocacy with a little a. But sharing our story with others is just as important as symposia and protests. And just as powerful.

Each of us, regardless of our education level or job status or social media profile have a story to tell. It’s our story, full of chapters that many others have written, but no one else has experienced quite the way we have. We are the authors of our own epic.

Our unique perspective on life with diabetes may be exactly what another person needs to hear. It may be the exact message they’ve been searching for. Without you sharing your story, they might not receive the message you are uniquely qualified to deliver.

So before you get overwhelmed, or heaven forbid, feel guilty about coming up short this November, remember:

It’s not a contest.

The effects of advocacy are huge.

The steps we take to practice advocacy are often very small.

Advocacy with a little a is powerful, no matter what the calendar says.

By StephenS | Posted in Advocacy | Also tagged , | Comments (1)

Questions… and gratitude.

October 26, 2017 – 10:18 am

So many questions racing through my head today…

At the end of last week, I received the EOB (Explanation of Benefits) from my medical plan for my appendectomy hospital stay in September. Immediately, my eyes moved to the overall cost of my stay in the hospital, the surgery, the intensive care, the drugs.

Total cost: $25,191.74

This included various details, all laid out in my form, including $880 per day for five days’ stay in the hospital, $2,681 to cover services in the intensive care unit my first night, $7,437 in operating room expenses, $2,278 in pharmacy costs, plus nearly $9,000 in various other costs.

As I said at the beginning, there are many questions racing through my mind. I can’t stop thinking about this. How do they come up with specific pricing? Why break out the costs into so many different categories? As always, why are the pharmacy costs nearly ten percent of the bill?

Fortunately for me, I’m enrolled in a fairly generous medical benefit plan through my employer. This plan means that my cost for this stay will be something just short of about ten percent of that bill. Still very high, especially for someone who already spends a few thousand out of pocket for drugs, supplies, and doctor visits throughout the year.

Which brings me to these very important questions: What does someone do if they are not in an employment position as advantageous as mine? In other words, what does someone do without coverage, or without adequate coverage? If it’s early in the year and you’re under a high deductible plan, and you get a big fat statement like this one, how do you pay for it?

Don’t forget, acute appendicitis isn’t something that anyone plans for. Neither is diabetes. Simply reviewing my situation, it’s easy to see why families declare bankruptcy every day due to medical expenses beyond their control.

And now, the U.S. Congress wants to allow states, through the Affordable Care Act, to sell skimpy policies to so-called healthy people. For a moment, let’s put aside the fact that this would mean huge increases in rates for the insurance options available for People With Diabetes.

Instead, since this is a diabetes blog, let’s look at it from the standpoint of initial diagnosis. Let’s say it’s early in the year, maybe February, and someone covered under one of these skimpy plans is diagnosed with Type 1 diabetes, requiring insulin every day, plus the durable medical supplies, test strips, insulin needles or pump paraphernalia, that go with it.

The good news is that the plans being talked about for this kind of individual cover a lot of the cost of “catastrophic” care. The bad news is, the insurance company decides the meaning of the word “catastrophic”.

Even if they cover the cost of a short hospital stay due to DKA or something else just as serious, they’re not going to cover any of the continuing costs of regular daily diabetes maintenance. And, as we all know, daily diabetes maintenance is anything but regular.

So, our previously healthy person is now stuck with what could be overwhelming costs, and over ten months left on a medical plan that won’t pay for hardly any of it.

That’s just a diabetes diagnosis. What about something like a stage 4 cancer diagnosis, a heart bypass, or another condition? What does coverage (or non-coverage) for those look like?

Oh, I have many questions racing through my head today. And an incredible feeling of gratitude that I am one of the lucky few who can afford what just happened to me.

By StephenS | Posted in Random Glucose | Also tagged , | Comments (1)