Monthly Archives: February 2018

One day, two meetings.

Two days, one meeting. No, wait… strike that. ONE day, TWO meetings.

Last Wednesday, I was in two places on the same day, though, fortunately, not at the same time. The first gathering was in Washington, D.C., a few blocks from the White House, at the Ronald Reagan Building and International Trade Center, for this year’s #HCIDC summit. In the afternoon, it was back to Baltimore for my quarterly meeting of Maryland’s Advisory Council on Health and Wellness.

First, the D.C. meeting: Presented by West Health, which is a non-partisan group dedicated to more fair and affordable access to better care for all Americans, the Healthcare Costs Innovation Summit turned out to be less than exciting.

It wasn’t only because I heard viewpoints that didn’t agree with mine, though I certainly did hear some of that. The thing is, we’re always more sensitive to opinions that we think are misguided or out of touch with reality, regardless of our reality.

Among the attendees I sat with in the ampitheater were DPAC’s CEO, Christel Marchand Aprigliano, and DPAC’s Leyla Mansour-Cole, who has been a guest on the Diabetes By The Numbers podcast. It was Christel who first noticed that the day’s speakers and panels didn’t include one single patient. Even though there was actually a patient-centric session in the afternoon.

It was a bit of a surprise to me, because the other #HCIDC event I attended did include patients. I must say though, I’m still surprised that there are people (I came across a couple of them) and organizations who either forget that patients exist, or can’t imagine that patients would be motivated enough to attend such a conference.

Ordinarily, I would like to spend time talking about some of the presentations, but I only saw one that was worth the time and expense of schlepping to DC at six in the morning. So I’ll spare you the details.

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In the afternoon, I boarded the train and headed back to Baltimore, so I could attend my Advisory Council meeting at the Maryland Department of Health.

I’m searching for words to cover what these meetings are like, but to be honest, they’re hard to describe without boring you to tears. Since this was only our second meeting, there are still a lot of procedural questions, and everyone is still getting comfortable with one another.

In the main part of our meeting with the full council, some time was spent informing us about the legislative calendar (which begins in January and ends in early April). They talked about how we might be asked to weigh in on bills before the house or senate (or both), and how the timing of delivering a position on a bill might work. More to come on that.

There was also a short presentation on some successes that similar groups have achieved, and I thought that was helpful in getting us from the “what do we do?” phase to the “let’s come up with a goal and a plan” phase.

Once we completed the meeting of the full council, we broke out for our first committee meetings. Yes, I am on the Diabetes Committee, and in fact, I am now one of the co-chairs of that committee. In our session this time, we were assisted by two members of the Department of Health’s staff, who very ably helped us work on some ideas and goals for our seven member group.

It was the kind of undertaking that must have been difficult for them. But it was quite fulfilling to me to know that I was actually working on something that might have a positive impact on the citizens of my state. This is what I signed up for, right?

So in the end, one gathering that could have been better, one gathering that made it worth the day’s extra effort. Don’t tell anyone, but I already realize I can’t be this active forever. At some point, some year, I’m going to have to scale it back.

But that’s not this year. Wish me luck, because there is going to be a lot of work ahead of me, and I don’t have this thing all figured out yet. But I know I’m working with a good group in the state of Maryland, and I know our cause is well worth the effort.

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Drug pricing straight talk.

I read an interesting online piece from CNN Money the other day. If you haven’t had a chance, read it HERE. I’ll wait.

Although I was surprised at first that the director of the U.S. Food and Drug Administration would weigh in on drug pricing, I have to say that his comments here are pretty much what I would expect, and it’s what I’ve been thinking for a while too.

Indeed, there have been drug companies playing fast and loose with the rules governing when their drugs could be available to be made as generics. There have been, in some cases, instances of companies restricting access to brand name drugs for makers of generics who want to use them to help develop their own products, and use them for comparison in clinical trials to help measure efficacy of their generic versus the brand name benchmark.

In true drug company and pharmacy benefit manager fashion, there is a lot of gray area in the rules governing what can be made generic when, and how. In a way, you can understand it from their point of view… they don’t want to see a lot of their profit go away because a generic (or in the case of insulin, a biosimilar) could be purchased for much less than the original product.

Yet we’ve seen generics make a huge difference in the affordability of high blood pressure and high cholesterol drugs. It would be nice to purchase our diabetes drugs for far less than we purchase them today. Can’t we make this happen?

I think that’s what the FDA Director is saying here. He uses political terms like “free market”, but at least he acknowledges that the needs of patients should trump a 20-plus year near monopoly for a particular medication.

We are seeing changes, slow changes in insulin now. Novo Nordisk’s Fiasp is a very fast-acting insulin, and over the next few years, it may change a lot of how people manage their diabetes. If it does, expect to see prices drop for Novolog. We’ve seen the first biosimilar insulin in the United States in Eli Lilly’s Basaglar, and that has already had an effect on the price of Sanofi’s Lantus, which it is biosimilaring(?). Plus, my endo suddenly has lots of free Lantus samples to pass along.

I completely believe this statement from Dr. Gottlieb, in describing the various changes under consideration by the FDA:

“All of these steps are going to have an impact, and I don’t think there’s one silver bullet,” Gottlieb said. “If anyone [thinks] there is one thing you can do with policy intervention that is going to dramatically change drug prices, that’s not true.”

It’s going to take a lot of effort on the part of regulators, advocates like you and me, and yes, industry to shepherd a change in the approach of brand name and generic drugs. We’re not going to get down to a few dollars out of pocket for our insulin prescription. But hopefully, as time goes by, we’ll see additional choice, both in medications and the cost of those medications.

I think that would qualify as making something happen.

What 20 years has taught me.

I’m one of the lucky people in America these days. I’ve been lucky enough to last a couple of decades working for the same company.

Tomorrow will officially mark exactly twenty years since I started working there, and as you might expect, diabetes has intersected a lot of the past two decades. Consider the following:

– I was 35 years old when I started working there

– I had been living with Type 1 Diabetes for 7 years when I started

– I didn’t start wearing an insulin pump until I had been there 12 years

– I didn’t start wearing a CGM full time until I had been there 19 years

Those little nuggets are just for starters. I’m on my fourth insulin product since I began working at my current job. I’ve tried three different CGMs now (four if you count two different versions of Dexcom), and worn at least four insulin pumps, including those worn in clinical trials.

There have been a lot of changes in my diabetes in 20 years, and a lot of change in me. I’ve got less hair, and more weight. I wear more devices, but I haven’t managed my diabetes any better than I’m doing right now.

This milestone is a little different than my 15 year anniversary at work. I’m in a new, much bigger department, so not everyone knows me yet. But in a way, that’s good. I’m beginning to like new challenges, and I’m finding that adapting quickly is one of the surest ways to sticking around after all this time.

We’ve had our ups and downs over the years. Things haven’t always been good, for my job or my diabetes. If you’re lucky, these things usually iron themselves out over time, or you don’t wind up spending a lot of time in your job. Or living well with diabetes.

My job needed to be more empathetic to the minute-by-minute unpredictability of diabetes. I needed to let go of the idea that my job was my identity. I think we both did pretty well.

Where do we go from here? I don’t know yet. I certainly hope I won’t have another 20 years in the workforce. But like I do in this job, I want to keep learning and growing. At work or in real life, my goals aren’t to climb the ladder. Instead, I’d be satisfied if I can just be better.

More clarity in the Clarity.

I got a chance last week to see my endocrinologist again, my quarterly appointment time coming due, and I’ve got to say, it was an interesting experience.

The appointment started with me arriving ten minutes early, but waiting at least ten minutes to check in at the desk, because the office is under a new medical group with new computer systems. That means additional signatures on additional pieces of paper that are not usually part of the quarterly check-in.

The wait became even greater after five more patients showed up in the next three minutes (it’s a big practice). I was never so happy to have been early for my appointment, even if I did have to stand due to a supply of patients that were greater than the supply of available chairs in the waiting area.

Once I saw my doctor, it was fairly clinical. But it was different from what my quarterly appointment might have been just a year ago.

Back then, I didn’t have a Dexcom Clarity account set up to help track and report on trends from my continuous glucose monitor. Now I do, and instead of using hearsay (from me) to decide where to tweak my basal rates, we were able to use something much more reliable: the actual data itself.

We found out that the lows I’ve had recently have been happening, mostly, right before lunch. If I get lunch at my normal 12:00-12:15 time, no problem. If it’s much later than that, I usually encounter a low. ”It’s because you’re so fine tuned”, says my endo. ”If your schedule is off just a little bit, you’re going low”.

That’s true. We’ve worked over the years to get my basal rates to the point where, most days, I don’t see a lot of BG variation, and my average glucose is in a very good range (I know it’s time in range that matters most, but let me have a little victory here).

We also spent some time talking about the Freestyle Libre. I shared the highlights of my 20 day trial, and she shared that she thought it might be a great option for Type 2s who are really averse to fingersticks. It will be interesting to see where it goes from here.

All of my vitals are pretty good right now. I’m not getting any flack for adding weight since my surgery last year, and I’m half grateful/half hoping she’ll give me a hard time about it. To be honest, I’ve found shedding weight to be a nearly insurmountable task at my age. No matter how hard I work, no matter how I change my diet, I keep adding a couple of pounds per year. Trust me when I say, I would do nearly anything to drop about 30 pounds.

That’s the bad story from this visit. I’d like to add a really good story to the next one. I’ve got about 90 more days until my next check in, and I have a lot to work on in the meantime.

Spare a rose yet?

The cause that everyone loves and loves to contribute to is back. The Spare a Rose, Save a Child campaign is in full swing this week as we get closer to Valentine’s Day, February 14.

Can you believe this is the sixth year for Spare a Rose? Ever since 2013, the Diabetes Online Community has led the way in promoting this wonderful fundraiser for the International Diabetes Federation.

The idea is simple: if you have a special someone who you buy a dozen roses for on Valentine’s Day, consider buying one less rose and donating the cost of that rose to the IDF’s Life for a Child Program, which helps provide insulin, diabetes supplies, and education to kids in less resourced countries. You know, the places where it’s hard to get and pay for these things.

As we’ve said before, the cost of one rose saves the life of a child for one month. The cost of a dozen roses gains a child in another part of the world an entire year to play, go to school, and be with their families. Who doesn’t love that?

There are children all over the world who are depending on us. So please, take time right now. Go to lifeforachildusa.org/sparearose.

On behalf of myself, the diabetes community, and the parents of children in need, Thank You.
 
 
While I’m at it, let me send a shoutout to all of the diabetes podcasters taking part in the third annual Diabetes Podcast Week!

All over the internet, podcasters are helping to raise awareness of the Spare a Rose, Save a Child campaign. I’m retooling my podcast right now (back very soon), so I’m not able to take part. But I’m happy to let you know who you can connect with this week to get your diabetes podcast fix, and to hear more about Spare a Rose, Save a Child: simply go to diabetespodcastweek.com and find out who will be rolling out a new episode during this special week.

It’s one of my favorite weeks of the year, and while I won’t be a part of it this time, I very much look forward to hearing everyone else. You should listen too!

And finally, I don’t want to forget to wish you a wonderful Valentine’s Day full of love and saving the lives of children with diabetes.

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