Author Archives: StephenS

Hello… I’m Stephen. I live in Baltimore, Maryland, USA with The Great Spousal Unit, Maureen. I’ve been living with Type 1 Diabetes since January 1991. I’ve been a pump user since April 2010, and I’m currently wearing the Animas Vibe pump. Also wearing the Dexcom G5 continuous glucose monitor.

I found the Diabetes Online Community in the summer/fall of 2011, and that discovery has changed my life. I started this blog in April 2012, and since then, my diabetes advocacy has continued to grow. Among other achievements, I’ve attended and spoken up at FDA workshops and participated in clinical trials.

I’ve been thrilled to serve as a facilitator for the Diabetes UnConference. And I’ve been honored to volunteer for Diabetes Patient Advocacy Coalition. You should Google both of those.

I’m currently serving as a member of the State of Maryland’s Advisory Council on Health and Wellness, where I am co-chair of the Diabetes committee. In addition, I’m part of the 2018 Reader Panel at Diabetes Forecast magazine.

I’m always searching for the perfect balance between the highs and lows of my blood glucose level and my life… always searching for the Happy Medium.

Anything you’d like to share? Please let me know… I’d love to hear from you.

It’s a gravatar. Not an insult.

November 4, 2015 – 4:28 pm

In the end, I decided to publish this post. You have every right to complain about it to me, but please leave my friends alone.

So, it’s been an exciting first week of Diabetes Awareness Month. I’m noticing, and I suspect you’re noticing too, that a lot of people in our online community are either burned out on advocacy, feeling insignificant, or getting digitally slapped around by the passion of someone’s feelings on things as innocuous as a gravatar. Yep I’m going there just this once.

I’ve been watching posts this week, mostly on Facebook, and for me (you must make the decision on what’s right for you), I think it might help to put some things in perspective. Here are a few things I’ve found out about diabetes advocacy, the Diabetes Online Community, and how we treat each other:

First: there are not nearly enough of us.
For all of the wonderful things that have been accomplished in terms of awareness and education about life with diabetes, the fact is that there are a lot of things left undone. Like anything else, there is more than one reason for that. But I think one of the things that gets overlooked is the fact that we cannot do everything by ourselves, and the number of people practicing diabetes advocacy on a regular basis is extremely small. So why would you want to criticize those people for not doing enough, or for being at the forefront of a movement, or for just showing up on Twitter and on podcasts more often than someone else? If those people advocating all the time stopped advocating all the time, who would take their place? Anyone want to step forward? Full Time? Every Day? We should thank our lucky stars that we have someone, anyone advocating for us anytime. Can we thank someone for their advocacy today?

Diabetes Awareness Month is during November. Diabetes, and diabetes advocacy, is year round.
This is what I try to remember when I think about Diabetes Awareness Month and how much I haven’t done so far this November. I know I will try to advocate as best I can, but I try to do that anyway. And if I have a super idea that pops into my head on December 18, am I supposed to sit on it for eleven months so I can reveal it during Diabetes Awareness Month? I don’t think so. I started podcasting in August… I didn’t wait until November just so I could tie a blue circle around the idea.

When I think about diabetes advocacy burnout this time of year, I often wonder if it comes as a result of people doing their best all year and once November rolls around, there’s not much left to give. If that’s the case, I think it’s all right to say “Sorry… all of my great ideas are gone for the year. I’ll get back to you when I come up with something else”. That means less emphasis on November, but let’s face it… we’re not getting a lot of notice this time of year anyway. Other than December and October (for obvious reasons), I don’t know if I could have picked a worse month for Diabetes Awareness Month than November.

Advocacy comes in many shapes and forms. And we forget that.
We do… we forget what we ourselves do that is absolutely diabetes advocacy in action. I’m going to list a few things I’ve done in the last two years that, in my mind, qualify as diabetes advocacy. I’m including the last two years because this year has been pretty sparse, unfortunately. Here’s the list:

– Rode in ADA’s Chesapeake Bay Tour de Cure, raising money for a worthwhile organization
– Promoted various advocacy initiatives started by others, like BigBlueTest and Spare A Rose/Save a Child
– Attended the first Diabetes Advocates MasterLab in Florida a year ago (thanks Diabetes Hands Foundation, who paid my travel and hotel)
– Gave away medals to People With Diabetes who achieve their athletic goals
– Donated blood three times (in the USA, you can live with diabetes and donate)
– Attended an FDA public workshop and spoke during public comments portion
– Participated in a clinical trial
– Told my story here, on other web sites, and in interviews
– Started podcasting, interviewing diabetes newsmakers
– Participated in the weekly DSMA Twitter Chat (and moderated a few times too)
– Lived my life with diabetes to the best of my ability for two years

I’m going to guess that your list of advocacy is similar, if not better. Now, that’s not a huge list, and it’s not major in terms of diabetes advocacy. But it’s not nothing either. Like my diabetes, I’m doing the best I can with the time I have and the resources I have. If I need to remind myself of these things, I will because it’s proof that my presence means something. I hope I don’t forget that. More importantly, I hope you don’t forget that either.

If you let it, conflict will take the place of advocacy. And sometimes, people are just too damned sensitive.
Don’t get me wrong: If I’ve done something you’re not happy with, and you want to say something about it, then okay. News flash: Sometimes I’m wrong! It happens. I’ve been lucky in that when it happened, I had people show their displeasure with me in a way that is respectful and caring. It’s still uncomfortable to hear you’re not perfect, but if I want to expect people to be respectful, I must be respectful too.

However… when you focus your energy on one little thing, and you want to translate your feelings over that one thing toward me as a person and decide I suck because of a fucking gravatar… I’m not sure I have any words for that. Except fucking gravatar. Here’s what I mean:

When we take on someone for something they’ve done, or not done, said or not said, posted or not posted, real or imagined– that act, that emotion, is taking the place (and time and resources) of actual advocacy. Time that could be spent contacting our elected officials on important issues, telling our story so others will better know and understand our disease, or helping someone come to grips with their new diagnosis gets cast aside in favor of Being Right. The truth is, Being Right is completely subjective in many cases. And often, there is more than one definition of Being Right. Regardless… individually, we are almost always not the Official Arbiter of Being Right. It would be kind of cool if I was though. Still… in this case, it’s a gravatar, not an insult.

In addition, when you’re engaging in conflict, you’re running the risk of making people feel like they should just walk away from advocacy altogether. In my mind, having one less diabetes advocate is not fair compensation for Being Right. I don’t know about you, but I need every advocate I can get.

This month, I’m not engaging in the T1D Looks Like Me campaign. But I support people who do. I’m not using the #TypeNone hashtag either. But I think it’s a fabulous idea. I live with Type 1 diabetes, and I have many friends who live with other types that are fantastic advocates. I want to continue working to understand them and support them as best I can, while also helping and supporting my T1D friends. I do not run an exclusive club. I don’t believe my Type 1 friends do either.

This November, I’m going to keep on with my life, engage in my own form of advocacy, while supporting as many causes and people as I can along the way. For me, it’s a heck of a lot easier than worrying about Being Right all the time.
 

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Let’s face it: We’re already being Shkrelied.

October 29, 2015 – 2:23 pm

By now, we’ve all heard about Martin Shkreli, the former hedge fund manager who realized he could make more money in the pharmaceutical space and, through his firm Turing Pharmaceuticals, purchased the drug Daraprim. Daraprim is used to treat malaria, and more importantly, helps in treating AIDS patients as well. Prior to Mr. Shkreli’s purchase, Daraprim was selling for around $13.50 per pill. After the purchase, Mr. Shkreli increased the price of Daraprim to $750.00 per pill.

The very idea of doing such a thing, in pricing a drug that patients need, at a certain price simply because there is money to be made, is a very scary proposition for diabetes patients. Kelly Kunik did an excellent job of explaining why HERE.

But the honest truth is, sadly, that this is already happening to People With Diabetes.

I’m not going to call out anyone. I’ve written about costs of drugs and devices HERE and HERE. The truth is that we are already paying a great deal for drugs and devices that keep us healthy and, you know, alive. Unless they’re not great money managers, these companies are making a great deal of profit. They’re certainly generating a lot of revenue. In many cases, they’re generating a lot of revenue for things that haven’t changed much, if at all, for years.

When you’re generating at least over 3.5 billion dollars for your drug in the United States alone, each year, for years at a time, the notion of “We need to price our drug at this level to help fund our development and research” rings hollow. Certainly, research and development must be funded. But if your drug is generating a billion dollars in profit each year in the USA, for example, for ten years, for example, that’s ten billion dollars. If your drug costs a billion, billion and a half to develop, get FDA approval, manufacture, and bring to market, how long does it really take to make enough money on your current drug before you’ve paid the bill for your next drug?

And let’s not forget that sometimes the people making money are the insurance companies who cover our medications or devices. The insulins on my drug provider’s formulary list have changed three times in five years. That is not happening out of patient need. It’s happening out of corporate greed. The drug provider cuts a deal with a drug maker or manufacturer, puts the drug on the formulary list, takes the drug maker they could not cut a deal with off the formulary list, and in each case, take their own slice of the pie.

I haven’t even gotten to the question of generic insulin yet. But each year that goes by with no generics or low cost options for a 95 year old drug, ever increasing prices for existing medications, and no reasonable explanation of why gets me a little bit hotter under the collar. Oh, and by the way, no one in the federal government is stepping up to try and rein in the gouging of patients, even if doing so might actually help save a few dollars for Medicare and Medicaid, and by extension, our federal budget.

I’m grateful for the contributions that device and drug makers have made toward improving our lives with diabetes. That we must pay such a dear premium for these contributions, simply because we’re stuck with a disease we can’t get rid of, should be too high a price to pay in a world in which a great deal of money has already been made on these things.

In the end, it may have been Shkreli’s instant robber baron tendencies that caused such a public uproar, causing him to lower the price of daraprim a bit after the initial announcement. A competitor making a similar drug has lowered their price to just $1.00 per pill, further cutting into his new venture. I fear that large companies with careful, experienced number crunchers and public relations machines may be doing a much more savvy job of getting us to the same point, without many realizing it.

I hate to say it, but when I look at the numbers, it looks to me like People With Diabetes are already being Shkrelied by the companies we rely on for insulin, insulin pumps, and the like. I think it should be okay for us to say so, or at least ask why. And we deserve an honest accounting.
 

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(Almost) Wordless Wednesday: Motivational Symbols.

October 28, 2015 – 9:32 am

Lately, because of everything that’s been going on in the rest of my life, diabetes seems to have taken a back seat. Or, more of a back seat compared to how active I’ve been over the past few years. I’ve been lamenting that for a while, for two reasons: One, I’ve found that I have a passion for diabetes advocacy; and Two, I feel like I haven’t been paying enough attention to my own health lately.

So when I was cleaning up around the house this weekend and I came across this bracelet, I decided to give it another fling. It says: ACT ON DIABETES.NOW.
bracelet
For me, it means Acting On Diabetes in two directions: Outward, and Internally too. Maybe hanging this on my wrist for a few weeks will get me refocused on what I do well, and most of all, what is important. I’m not unhappy with me… I’m just looking to be a little more energetic when it comes to taking care of myself, and helping others where I can.

If a blue bracelet can help me do that, then okay. I’m all for motivational symbols. What motivates you?
 

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One for the patients, and interoperability.

October 20, 2015 – 9:58 am

There’s an announcement that went out a week or so ago from the USA’s Center for Medicare and Medicaid Services. Not much has been written about it. I thought the wording of the statement was interesting enough to spend a few minutes talking about it here.

Essentially, CMS has a regulatory requirement in place that states that providers have to maintain patient health records electronically. They’re using a phased approach toward getting everyone there, and that requirement hasn’t been met by many, mostly because of difficulty in implementing systems to handle this. As a result, they pushed back the date for provider compliance with this rule to January 1, 2018. That’s the bad news.

The good news? Well, patient health records for those on Medicaid (receiving federal or state healthcare assistance) and Medicare (federal healthcare program for U.S. residents 65 and older) will all be electronic by 2018. Also, there is a significant push by CMS to make the systems housing patient information available and accessible to patients. As in, no more wondering what is in your folder, but actually knowing what’s there.

According to the fact sheet distributed by CMS (click HERE for the full text):

”We want actionable electronic health information available when and where it matters most and for health care providers and consumers to be able to readily, safely, and securely exchange information.”

There’s incentive in this too. Eligible physicians, clinics, and hospitals who move to electronic health records receive incentive payments from the government for doing so ahead of schedule. They get their payments cut if they fail to comply by the CMS deadline.

But there were additional items that really struck me in this announcement, and I’m just going to quote them here one at a time.

”For example, the regulations will:
Shift the paradigm so health IT becomes a tool for care improvement, not an end in itself.”

CMS is focusing on using technology to improve patient outcomes, but not in a “set it and forget it” kind of way. They want health records to be useful in a patient’s care plan.

”Address health information blocking and interoperability between providers and with patients. Commenters recommended we emphasize measures that focus on interoperability instead of those that focus on data entry. We modified the measures so that more than 60 percent of measures rely upon exchange of health information, compared to 33 percent previously.”

Anyone who’s been to one doctor for one test, then another doctor who has wanted to perform the same test can tell you that being able to exchange data between providers (in a safe, secure manner, of course) will save a lot of time and money for providers, for patients, for insurance companies. Interoperability is also huge in a hospital setting, or when a patient may not be able to speak for themselves.

”We are Transitioning to a New and More Responsive Regulatory Framework”

Part of that is due to passage of the Medicare Access and CHIP Reauthorization Act of 2015, and part of that is due to the fact that, well, this is the 21st century, and we all need to use technology where it can help us. It’s a no-brainer, right?

Here’s something else to remember: If the federal government is moving toward a more patient outcome based, interoperable, responsive framework, it’s much more likely that individual providers of healthcare will do so too. Seeing how this all works out over the next five years or so will tell doctors, hospitals, and health systems what works and what doesn’t about operating with health IT as “a tool for care improvement, not an end in itself”. My hope is that they will improve upon that idea. They also have incentive in keeping us all alive longer.

So here we are… a little blip on the radar screen of our medical lives. But a significant blip, if the goals associated with these regulations actually come to pass. I’d be okay with that, and the sooner the better.
 

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Diabetes By The Numbers: Anna Norton.

October 15, 2015 – 9:35 am

Diabetes By The Numbers is back, this time with the CEO of Diabetes Sisters, Anna Norton. Her passion and enthusiasm for leading this groundbreaking organization for women living with diabetes practically knocked me over from 700 miles away.

Today, Anna and I talk about the mission of Diabetes Sisters, the various programs that the organization provides to educate, support, and empower women, and what’s on the agenda for 2016. If you don’t know much (or anything) about Diabetes Sisters, or if you’re just looking to reconnect, this podcast is for you.
DBTN
 
Reference Material – Click below for more information on this topic

The Diabetes Sisters website contains blogs and online forums available night and day, plus educational material and updates on upcoming events:
diabetessisters.org

Follow Diabetes Sisters on Twitter:
@DiabetesSisters

Want to find out more? Interested in volunteering? Send an e-mail to:
info@diabetessisters.org
 

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