Author Archives: StephenS

Hi, I’m Stephen. I live in Baltimore, Maryland, USA with The Great Spousal Unit, Maureen. I’ve been living with Type 1 diabetes since 1991. Living with my Medtronic pump since 2010.

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.

FDA Workshop: Engaging with FDA in the drug approval process.

Between Diabetes Blog Week and being away on vacation for the past week, I never got a chance to tell this story.

On May 12, I took the day off of work to attend a public workshop at the FDA’s sprawling White Oak headquarters in Silver Spring, Maryland. This gathering was not specifically diabetes related, but I learned a lot anyway. Officially, the workshop was called:

Roadmap for Engaging with FDA’s Center for Drug Evaluation and Research

At this workshop, I was reminded once again that FDA officials speak using an alphabet soup of acronyms: CDER (Center for Drug Evaluation and Research), PASE (Professional Affairs and Stakeholder Engagement), DDM (Division of Dockets and Management), DDT/COA (Drug Development Tools Clinical Outcome Assessments), OHCA (Office of Health and Constituent Affairs), OSP (Office of Strategic Programs). Fortunately, the presenters, though heavy on acronyms, didn’t rely on them to convey their messages.

And the messages were significant, with a huge amount of information provided on what to know and how to engage with FDA regarding drug approvals. Want to know about diabetes drug approvals that did or did not happen? There’s a way to do that. Want to hold a meeting to bring patients together and invite the FDA to take part? There’s a way to do that. Want to stay informed on the latest news? That’s right… there’s a way to do that.



So, what was covered? A number of subjects, including the entire drug approval process, from start to finish. We learned how to “Rock the Docket” and use the Division of Dockets Management to research what’s happening in drug approvals that might affect People With Diabetes. There was an entire presentation on the various ways that FDA, and CDER in general, interact via social media.

And there were several interactive moments between FDA and attendees themselves, including question and answer sessions after presentations, and a chance to answer questions about presentations just concluded. Questions like “After this presentation, I am A) Not very confident about explaining the drug approval process, B) Somewhat confident about explaining the drug approval process, or C) Very confident about explaining the drug approval process”.
We recorded our answers using devices like these:

After lunch, there was a round of FDA Jeopardy. My team finished second out of four, but unfortunately, no prize money was awarded.

There were also a couple of presentations from representatives of patient communities who have had success interacting with FDA on drug approvals for medications that have helped the patients they represent.

I have to say that at the end of the day, I felt like the Center for Drug Evaluation and Research has a good handle on what they do, how important their mission is to people living with chronic conditions, and a valid social media strategy that keeps patients informed.

I was grateful to attend this workshop, and I walked away with a few new contacts from other patient organizations too. Not a bad way to spend my day off.

**To look at meeting presentation decks and order a transcription of the meeting, CLICK HERE.

Diabetes Blog Week: More than Diabetes.


Diabetes Blog Week is just like it sounds… diabetes bloggers all over the world, blogging on daily topics for an entire week. Or, in this year’s case, for five days. To find out all about Diabetes Blog Week and to sign up, CLICK HERE.

We’ve reached the end of another Diabetes Blog Week. 😦

I always feel like one of the most special people in the world because I’m allowed to participate in Diabetes Blog Week. Once again, I’ve been able to write on some interesting subjects, I’ve been able to read other bloggers, and I’ve met a few new online friends. Karen Graffeo, you have my undying gratitude for creating something that always makes me feel closer to our community.

Now on to Friday’s topic:

Lets wrap up the week by sharing a little more about ourselves, beyond the chronic illness we or our loved ones live with. Share an interest, hobby, passion, something that is YOU. If you want to explore how it relates to or helps with diabetes you can. Or let it be a part of you that is completely separate from diabetes, because there is more to life than just diabetes! (This topic is a suggestion from the 2016 #DBlogWeek survey.)

I’m going to make this short and sweet. I like to listen to music. A lot. When I’m at home, I’m as likely to listen to music as watch TV. So, in no particular order, here are ten Pandora channels that I actually have set up on my account. It may not tell you a lot about me (actually, the fact that I still use Pandora probably says a lot about me), but it will probably give you a look at some of my musical tastes.

Please don’t hate me for my choices… here goes:
 
 
1. 70s Scenario Radio (everything from Foreigner to Marvin Gaye to Led Zeppelin to The O’Jays)

2. Frank Sinatra Radio (a lot of Rat Pack stuff, plus guys like Bobby Darin and Mel Torme)

3. Gregory Porter Radio (Gregory Porter, Nina Simone, a little Etta James)

4. Merle Haggard Radio (guys like Merle, George Jones, Waylon & Willie)

5. French Cafe Radio (every version of La Vie En Rose ever recorded)

6. Broadway Showtunes Radio (self explanatory)

7. Cecelia Bartoli Radio (all Opera all the time)

8. Buckwheat Zydeco Radio (perfect for the weekends, plus the week leading up to Fat Tuesday)

9. Sara Bareilles Radio (Sara Bareilles, Norah Jones, KT Tunstall)

10. British Invasion Radio (artists from The Beatles and Rolling Stones to Petula Clark)
 
 
Are you surprised? What are some of your favorite things to listen to?

Diabetes Blog Week: Throwback Thursday– What brings me down.


Diabetes Blog Week is just like it sounds… diabetes bloggers all over the world, blogging on daily topics for an entire week. Or, in this year’s case, for five days. To find out all about Diabetes Blog Week and to sign up, CLICK HERE.

Are you ready? Here comes Thursday’s edition:

Today let’s revisit a prompt from 2014 – May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope? (Thanks again to Scott for this 2014 topic.)

It’s true, Scott is fantastic, because he’s a nice guy and he looks at things in ways I often do not. At this stage of my life, I find that somehow comforting. I’m no longer intimidated by what I don’t understand.

Now, to the subject at hand. Like I stated in my post back in 2014, what brings me down most is watching others deal with their inner demons. At times, depression can be a debilitating chronic illness that makes life as much or more difficult than living with diabetes.

There’s a reason why I don’t watch many dramas on television these days. Let’s face it: the best dramas are the ones where the writers ramp up the tension as high as possible for as long as possible before the show’s climax. I have trouble feeling that tension for 55 minutes without any letup. It’s because even though they’re just characters in a TV show, I feel empathy for those feeling the tension, and I have trouble shaking that.

If I feel anything else emotionally about living with diabetes, it’s probably the guilt over the burden I feel I’m placing my loved ones under because of my diabetes. I felt it years ago when I couldn’t afford groceries, but I needed to order diabetes supplies and drugs to help me stay alive. I feel it now whenever I’m low and I can see the concern on their faces.

And even I am prone to the occasional bout with burnout. Who isn’t? There are times when I try not to think too much about it, and just do what I need to do until I feel okay again.

In fact, that’s how I often cope with these things. I don’t know how healthy it is to handle situations this way. But sometimes, I just focus on the next 15 minutes, and not on anything else. I can handle fifteen minutes. Thinking about everything all the time is asking too much.
 
 
Maya Angelou once said,

We may encounter many defeats, but we must not be defeated.
 
 
Coping is not a cure. But if we’re able to cope long enough, we can hopefully ease that concern of feeling defeated. We’re not meant to live a life full of drama and tension. Here’s hoping your days with diabetes are instead full of peace and happiness. Or loud music and happiness… as long as you’re happy, I’m good with either one.

Diabetes Blog Week: The Blame Game.


Diabetes Blog Week is just like it sounds… diabetes bloggers all over the world, blogging on daily topics for an entire week. Or, in this year’s case, for five days. To find out all about Diabetes Blog Week and to sign up, CLICK HERE.

This is my 6th year participating in Diabetes Blog Week. The week is rolling along pretty fast! Today: Step up everyone, and get ready for The Blame Game.

Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another.  And sometimes the way the doctor talks to you can leave you feeling like you’re at fault.  Or maybe you have a fantastic healthcare team, but have experienced blame and judgement from someone else in your life – friend, loved one, complete stranger.  Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had.  Now, the game part.  Let’s turn this around.  If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself?   Let’s help teach people how to support us, rather than blame us!  (Thank you, Brian, for inspiring this topic.)

First of all… In case you haven’t read my post from last week, I’ll let you click on this link to find out how terrific my endocrinologist is.

I’ve got a fantastic endo. But the two that I had worked with prior to this one definitely fall into the judgement and authoritarian figure categories. One was female, one was male. Both were awful.

I remember one of my previous endos, who would make me wait in the waiting room for an hour and a half, then have me spend 20 minutes with medical students who knew next to nothing about diabetes. After that, I would get about two minutes with her, just enough time to get new prescriptions written. When that happens, there is no time for deep conversations or questions and answers. How can you learn anything about your patients this way? I would always walk away from those appointments feeling like I didn’t matter, and my A1c results reflected that.

Another endocrinologist got red faced when I questioned why he doubled the dosage of my high blood pressure medication without doing a check of, you know, my blood pressure. I told him my primary doctor thought doubling my dosage was dangerous, because I had been in a good range up to that point on the dosage I was at. He looked me in the eye and said, “I am the doctor. Your job is to do what I tell you to do!”. Yeah, no.

I think I would actually enjoy turning those two into puppets, and completely changing their demeanor toward their other patients.

I would love to turn the grumpy my-way-or-the-highway doctor into Big Bird from Sesame Street (Big Bird is sort of a puppet, right?). Regardless of my questions, Dr. Big Bird could help calm me down and be understanding when I’m not so sure about my next steps. Just what we need sometimes.

It would be really cool if I could turn my overscheduled endo into Bert, of Bert and Ernie fame. Bert is always organized, and he prefers to know about who he interacts with, rather than just letting Ernie handle everything. A time and a place for everything for Bert. The more time he makes for others, the happier the story ends.

Truthfully, I don’t usually bandy words about with doctors who don’t get it. My time is too valuable. In the case of those other two endocrinologists, I let my feet do the talking. But…

Wouldn’t it be great if we could just change bad care behavior by turning a doctor into a beloved puppet?

Diabetes Blog Week: The Cost of a Chronic Illness.


Diabetes Blog Week is just like it sounds… diabetes bloggers all over the world, blogging on daily topics for an entire week. Or, in this year’s case, for five days. To find out all about Diabetes Blog Week and to sign up, CLICK HERE.

This is my 6th year participating in Diabetes Blog Week. I am happy and honored to participate again. Today’s topic: The Cost of a Chronic Illness.

Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?  (This topic was inspired by suggestions from Rick and Jen)

To be sure, cost is a factor when it comes to living with diabetes. As I’ve noted before, I’m one of the really lucky people who has a good job that comes with a good insurance plan. I have access to an insulin pump, insulin to put in it, and a continuous glucose monitor.

And I still spend about $3,000 out of pocket for drugs, infusion sets, reservoirs, doctor co-pays, and countless other diabetes-related items every single year.

That’s enough money to take a really nice week-long trip to Europe. It’s money that could have been spent on my nieces or nephews. Money that could have helped fund even more research toward a cure for diabetes.

And I’m one of the lucky ones. Others in the United States don’t have access to even good food, let alone good tools to help them take care of their diabetes. That’s because so many in this country have the power to withhold that right from our citizens, and are comfortable with doing so. They equate health with worthiness. There’s a special place in hell reserved for people who are comfortable with doing that.

That said, I’ve now spoken with at least two people living outside the USA, who have helped me understand that their health care systems aren’t exactly fantastic either. Either coverage is spotty around the country, or there is a sizeable tax supporting the universal health care they enjoy. The one thing they do enjoy is the right to a certain amount of basic medical care. The one thing we’re in danger of losing in the USA is the right to a certain amount of basic medical care.

What I’ve learned is this: there are still people struggling to afford the basic needs of living with diabetes. And there’s still a lot of education needed to get everyone to the point where they understand that taking care of everyone helps to make their country better, wherever they live.

I fear the cost of living with diabetes will only continue to grow. For the people and companies benefitting from rising prices, there’s no reason to shrink the cost.

Our ability to convey the compelling, absolute, time sensitive necessity of caring for everyone living with every type of diabetes, regardless of what our insurance policies or bank statements look like, wherever we live, could make a life and death difference for millions over the coming decade.

That kind of message is worth the cost.

%d bloggers like this: