Monthly Archives: November 2017

Egregious E-mail Offenses: November 2017

Here today at Happy Medium, we’re going to start what might turn out to be a fun, and sadly, frustrating series. I’m going to give you a little background on some of the more cray-cray e-mails I’ve received.

When you write as much as I’ve written over the past five and a half years (700+ blog posts), even if you’re not the most read location in the blogosphere, you still get e-mailed like you are. And since November is Diabetes Awareness Month, I’ve gotten a few extras that have really made me scratch my head. Like these:
 
 
Kutting Weight Sauna Suits Help Diabetics Reach Weight Loss Goals
I can’t think of a single soul who would think this is a good idea, for People With Diabetes or anyone else. Trust me, there are ways to lose weight without putting on a scuba suit every day. Who decided it would be suitable to market this to PWDs? Where does the insulin pump go?

On the other hand, a selection from their “premium line of sauna suits” might help me look a little more like Captain America and a little less like Sheriff Buford T. Justice. At least until I pass out.
 
 
NEW – Montgomery County
Is this e-mail a tip about a new diabetes health initiative in this suburban county outside Washington, D.C.? Is it about a town hall meeting on health care? Noooo…

The first line of the e-mail goes like this: “Parking just got easier in Montgomery County.”

The message is for a parking app that can help you find a parking space and pay for it using your smart phone. Fine idea, but I am not the target audience. Especially because I rarely go to Montgomery County, and I use mass transportation to go to work.

The last part of the e-mail goes: “An interview with the CEO of [app name]? Please let me know!”.

Um, yeah, no, because… I WRITE A BLOG ABOUT DIABETES!
 
 
BDF Seeks Treatment Guidelines for BT1D Patients
This one is not only crazy, it makes me mad. In fact, I sent a tersely worded e-mail to the PR rep that keeps sending me e-mails from the (ready for this?) Brittle Diabetes Foundation, after I already supposedly unsubscribed from future e-mails.

This crackpot organization, based in Venice, Florida, counts among its board of directors a PhD, a former mayor of a small town on Long Island, a lawyer, an electrical engineer, an accountant, and a graphic artist. In other words, no medical professionals. Three of the six directors share the same last name.

Basically, they’re pissed off that the American Diabetes Association has not included “brittle diabetes” in its latest Standards of Care documentation. I’m not going to go any further into this, because it gets crazier than that, and I don’t want to give this group any more exposure than I’ve already given them.

To put it mildly, this “organization” is on the lunatic fringe of a community that is already factioned off like containers on a cargo ship headed out of port. It makes me sad, and it makes me mad to think that there is potentially good energy being spent on such a worthless cause.
 
 
I really hope these aren’t the kind of e-mails you get. In fact, how about I give you a tip on how to get super e-mails you can look forward to every month?

Sign up to get updates from diaTribe, the organization that brings both truth and sanity to our community. Go to diatribe.org, scroll down to the bottom of the home page, and put your e-mail address in the box next to where it says, “Get The Latest diaTribe News Right In Your Inbox”. Click Submit, and you’ll be guaranteed to receive at least something useful on a regular basis.

That’s it for November’s installment of Egregious E-mail Offenses. Until next time, remember: I support you… no conditions.

Unless I pass out wearing your wetsuit, have to park in Montgomery County, or have to listen to your uninformed opinions regarding Type 1 diabetes.

Advertisements

State Service.

It’s been a wild ride through November. Among the many things I’ve been a part of this month, I attended my first meeting as a member of the Maryland State Advisory Council on Health and Wellness.

I wasn’t sure what to expect when I strolled into the Department of Health on November 15. What I found was not only a warm reception, but real enthusiasm among the participants, including the Secretary of the state’s Department of Health.

As I mentioned before, this is a fairly large group… 34 members, from all walks of life. Mostly state employees, members of organizations like the American Heart Association and American Diabetes Association, and medical professionals. There are only a couple like me, who are patients or patient advocates with no official affiliation.

Our members come from all over the state, which is good, because we’re very diverse geographically and population-wise. There is a huge difference between the people who live in fertile farmland east of the Chesapeake Bay, people who live in the more urban areas of Baltimore, Annapolis, and the D.C. suburbs, and the Appalachian mountain counties out west.

This diversity shows a number of disparities in diagnoses for various chronic conditions. It also indicates a need to concentrate more on certain conditions in certain parts of the state. I suspect that will be part of what our work will entail over the next two years.

How did our group come into being? Well, the state legislature passed a law that, among other things, created this council. We’re funded by a federal block grant designed to help states determine best practices in chronic disease prevention and treatment.

Our group will have four committees initially… one on heart disease and stroke, one on arthritis, one on diabetes, and one on physical fitness. I’m hoping to be placed on the committee on diabetes; that is yet to be determined.

One other thing I found out at this meeting: In my state alone, there are over 70 positions on boards and commissions that are currently unfilled. On subjects ranging from Medicaid to congenital and hereditary diseases, there are a number of ways that the people of my state can get involved.

How did I get involved? I went to the Department of Health website to do research on this topic, and found a web page announcing the formation of our Council. I completed the application and an ethics disclosure form, and uploaded my resume. A month or so later, I was notified that I was appointed to the Council.

The work we’ll be doing is not easy. I’ll be committing time and energy toward helping all Marylanders living with and affected by numerous chronic conditions, including diabetes. But here’s the thing:

I might be special because I’m part of this advisory council. But I wasn’t selected because I’m special. I was selected because I asked, and because there’s a need, and because I want to do more to help my fellow citizens.

My state and others have lots of initiatives, some with the help of federal funding, that might be the perfect place for you to raise your voice. As advocates, we’ve asked for this for a long time. I don’t know how this will turn out, but I’m going to seize the opportunity while I can. Why not?

CLICK HERE for more on Maryland’s Advisory Council on Health and Wellness

Enlightened, but unknowing.

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.

World Diabetes Day 2017.

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.

The Last Five Years.

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.

%d bloggers like this: