Monthly Archives: October 2015

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

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.

(Almost) Wordless Wednesday: Motivational Symbols.

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.
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?

One for the patients, and interoperability.

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.

Diabetes By The Numbers: Anna Norton.

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.
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:

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What does baseball have to do with diabetes?

I watched a lot of baseball over the weekend. Oh, I know there’s a lot of college and NFL football out there, and that’s okay, but I watch as much October baseball as I can. That’s partly due to the fact that the best of the best are playing against each other right now in the playoffs, coupled with the knowledge that we are now officially less than a month away from no more baseball for about six months.

I’ve watched a lot of baseball over the years. I mean, a lot. I’ve been watching baseball on television since the 1960s. I’ve been to hundreds of major league games in person, in (if I have this correct) Cincinnati, Cleveland, Chicago (Wrigley Field and the old Comiskey Park), Washington, New York (just the old Yankee Stadium), San Diego, and of course, Baltimore. I’ve been to, I think, 13 or 14 Opening Day games in Cincinnati, and a couple more in Baltimore. I even made Opening Day in both cities a few years ago.

And it’s not just the major leagues. The Great Spousal Unit can tell you that if we see a little league team playing in a park somewhere, I’ll want to stop the car and watch a few innings. And we’ve done that.

Now… what does all this have to do with diabetes?

Well, I get a lot of enjoyment from watching baseball. Always have, always will. A lot of the baseball I’ve seen in my time has been since my Type 1 diagnosis 24-plus years ago.

Joe Carter’s World Series winning homer in 1992… all those great Atlanta Braves teams in the 90s and 00s… the Florida Marlins’ improbable championship in 1997, and again in 2003… Madison Bumgarner almost single-handedly giving the Giants their third championship in five years last year.

What do I want to see? More baseball! It’s one of the many things in my life that doesn’t give me any value except great memories. Priceless memories. Like my father taking me to see the Reds against the Cardinals in 1971, when I was nine years old. Joe Torre (the National League MVP that year) hit two solo home runs, and Johnny Bench, the Reds catcher, picked off a runner at first base. I remember almost 40 years later, taking my father and father-in-law to see the Twins and the Dodgers in a spring training game in Fort Meyers. My dad caught a foul ball. I still have it. Don’t tell him… he might want it back.

The truth is, I have a hundred stories like that. I have a hundred memories like that. And I want a hundred more.

I’ve been able to enjoy a lot of those moments in my life thanks to insulin, my care team, and my family and friends. If I’m going to enjoy even more, it’s going to be because I learn, adapt to new techniques and ideas, and take advantage of the latest in technology and drugs.

I think what I’m trying to say is this: When you’re burned out, when you just don’t want to do that BG check, when you just want to unplug and walk away from diabetes, well, I get it. I feel the same way sometimes. Often, when I feel like that, I try to think of one really fantastic thing that I would miss if I couldn’t be around to enjoy it. The One Thing might change from time to time, but I try to get that focus on what’s important and permanent (memories), and off of what’s temporary and annoying (burnout).

Find your One Thing. I’m not saying it will make things so wonderful you’ll never ever get burned out again. But sometimes, remembering the good stuff helps bring us back and refocuses us so we can not only live to fight another day with diabetes… we can live to enjoy another day of piling up the best memories we can, against the worst thing that might ever happen to us.

What’s your one thing?

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