Category Archives: Healthcare

Endo visit: 20 Follow-Ups.

November 7, 2014 – 9:46 am

It was 90-day endo visit time this week, and things went pretty much according to plan.

Stethiscope

My hemoglobin A1c is still in a very good range. But the really good news is that I seem to be getting there with fewer crazy blood sugar swings over the last three months. The data she downloaded showed only a few morning lows, and nothing super-duper low. I had a few other lows sprinkled in there, but not too many. We made a change to my overnight basal rate, dialing it back just a tiny bit to see if it gets me up enough that I don’t risk nighttime hypos. Other than that, I seem to be doing just fine with my settings where they are.

We also spent a little time talking about insulin pumps. I’m still thinking about which pump to go with. Which secretly means I’m hoping for newer versions or different offerings to be announced for the pumps I’m considering. Of course, that’s crazy talk. Nothing’s perfect. I just need to pick the one that works best for me and just go with it.

I’m a little worried about the startup cost too. It’s hard to get me to spend money, even if it is for a good cause… me. But we just had to have some work done on the house, and it was very expensive. Although it looks like I will get an exercise room out of the deal. So I’m at a different level, but I still have to decide right now between doing something to make me healthier, like getting a spin bike for my exercise room, or doing something to keep me healthy, like spending $500-$600 to get started on a new insulin pump (my cost after insurance). I’ll spend money like this sometimes, but almost never without seriously thinking about it. That’s part of what’s kept me from incurring huge amounts of additional debt. I’ve said “No” to myself more times than I can count.

I also got a good check on my blood pressure, my lungs, and my feet… all of which appear to be okay right now(!). When it was all over, I wound up with a couple of backup insulin pens (because my previous ones had expired), new prescriptions for test strips and other meds, and a new appointment in February.

I did notice something in my paperwork before I went in to see her. It noted that this was my 20th follow-up visit with this endocrinologist. That’s over five years with one doctor… I’m pretty sure that’s a record for me. Otherwise, not much to tell this time around. But isn’t that a good thing anyway? I mean, if I ain’t broke, don’t fix me!

But feel free to take care of that malfunctioning pancreas thing as soon as possible…
 
 
 

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Three reasons why I don’t see a CDE.

September 1, 2014 – 10:56 am

I’ve enjoyed reading about the recent American Association of Diabetes Educators meeting in Orlando. Wil Dubois at Diabetes Mine has written thorough recaps of many facets of the conference, and thoughtful viewpoints of the conference and of Certified Diabetes Educators in general have either been posted or will be posted at ThePerfectD and Diabetesaliciousness, as well as on blog posts I haven’t seen yet (If you’ve seen a good one, feel free to link to them in a comment below). There’s no doubt Certified Diabetes Educators do an amazing job of providing education, encouragement, and ongoing information for people living with diabetes. Metaphorically placed end to end, their numerous success stories could stretch from here to the moon and back, and probably back again. They are an important and vital part of the diabetes community.

So why haven’t I seen a CDE since my diagnosis 23 years ago?

The reasons are many. I’ll give you three right now. I’m not saying these are good reasons; in fact, they might be downright ridiculous. I’m not saying you shouldn’t see a CDE. If it will benefit you, you should. But why haven’t I seen a CDE in 23 years? It’s more than just a simple “I don’t wanna see a CDE”. Here we go:

A doctor has never asked me to see a Diabetes Educator.
This is true. I saw a Diabetes Educator in the hospital after my diagnosis. She taught me how to inject insulin, gave me the lowdown about the exchange diet (it was 1991), and she even warned me about certain parts of my anatomy not functioning properly if I didn’t take care of my diabetes (creepy, but true). Since then, not only have my GPs and endocrinologists not suggested that I see a CDE, they haven’t even mentioned it at all. Ever. I never thought about it either, until reading online about how much people love their CDEs. Since then, I’ve thought about discussing it with my endo. But as you probably know, time with our primary healthcare professionals is precious and short, so I never got around to it. But this whole paragraph makes me think: Are doctors not recommending CDEs to their patients enough? Are they only recommending them where there aren’t enough doctors or nurses in the first place? I don’t know the answers to those questions. I’m just asking.

It’s one more person to make an appointment with. And pay.
I already need to visit my endocrinologist every 90 days (no complaints about that… it just is). Then there’s my GP, whom I don’t see often, but still. I also have to keep regular appointments with the eye doctor and the podiatrist. I have to see a dermatologist every now and then. Now I need to schedule time with a CDE too? I’m already forking out over three grand per year in out-of-pocket expenses for my diabetes. Like it or love it, it’s one more appointment and one more expense.

On the other hand: If a CDE could help me get to a better state of diabetes management, they would be worth their weight in gold. Just sayin’.

Side note: I can see where people on an insurance plan that still requires referrals would just say no to this outright. Why pay an out-of-pocket expense to get a referral from the primary or endo, then pay another out-of-pocket to go see the CDE? This is why many plans have done away with the idea of referrals for everything—it’s too expensive for them too. In fact, some plans are probably saying that they won’t cover visits to a Diabetes Educator at all, though I don’t know how prevalent that is. Again, my view on that is: If it helps, it’s more than worth the cost.

It’s one more person to answer to.
This is probably the dumbest reason, and yet the easiest to write out. Why do I feel this way? Because I like my endo. I trust my endo. I want my results to make my endo happy every 90 days. If my results are less than stellar, I feel a little like I’ve let her down. I do not want that responsibility every 90 days with an additional person. To change this would probably require rewiring my brain, so I see a CDE as an additional member of my team, there to help me rather than be another person telling me what to do. But right now, while things are going okay, I’m worried that an additional person added to the mix might make me less likely to want to listen to their advice, no matter how helpful it may be.

Now… go ahead, leave a comment and give me the 1000 reasons why I’m wrong about all of this. I know I deserve it. But please be respectful. I might deserve criticism, but not hatred. Thanks.

Disclaimer: As I said above, these are NOT reasons why you should not see a CDE. Everyone has a right to seek the best help they can find.
 
 
 

By StephenS | Tagged , | Comments (12)

Prescription burnout.

March 12, 2014 – 9:25 am

I’m fortunate. I have access to and participate in medical, dental, and vision insurance through my employer (The Great Spousal Unit is also covered under my plans). It’s not cheap to have this coverage but, for the most part, I’m able to manage the costs. Despite needing to schedule appointments and, you know, actually go to doctor appointments, I’m able to do what I have to do to navigate my way through the healthcare system here in America.

Except when it comes to prescriptions.

Dealing with prescriptions is hard. The reasons for that vary, but they’re mostly related to the number of items I have to keep track of, the fact that they all seem to need to be renewed at different times, and the stupid way my prescription provider operates.

For the record, I get insulin, plus backup insulin, glucagon, a few daily pills I need to take, and test strips through my prescription provider.

Almost all of these, except the glucagon kit and the backup insulin, which I don’t need to renew all the time, are on different rotating 90-day schedules. Meaning, I have to go to my provider’s website and renew my prescription, or my doctor can electronically submit prescriptions to the provider. Though that turned out to be a major hassle with the provider, which I’ll explain farther down the page.

I generally don’t suffer from diabetes burnout, but I do suffer occasionally from prescription burnout. It’s not that I have to renew my prescriptions every 90 days. It’s that I may need to renew one prescription this week, and another in three weeks, and another ten days after that, and another the following week. Keeping track of which script needs to be renewed when takes some doing.

I try to keep track of it on my Outlook calendar at work. That works okay, except when I’m not at work, and as long as the Exchange server doesn’t go down and wipe out everything I carefully scheduled (which happens occasionally).

Then there’s the cost. My provider introduced a huge change in their formulary list this year, which is costing me an additional 1200 dollars during 2014. I don’t even want to go into that.

So there’s the volume of everything that needs to be renewed, and the quirky scheduling of everything, and then there’s this:

When renewing my prescription online, the provider has my credit card information so they can process my order at the time it’s placed. So they have my credit card information on file.

The last time I visited my endocrinologist, she was kind enough to get me new prescriptions for things I had run out of refills for. The best part was (or so I thought), she was able to send the script directly to the provider so they could fill it. Great, right? Ummm, no.

A couple of weeks (or so) goes by, and no prescriptions. Part of the order included my insulin, so I’m starting to worry a bit. I give the provider a call. It turns out they haven’t filled my prescription because they “didn’t get payment yet”.

Me: You have my credit card information on file… what’s the problem?

Prescription provider phone rep: We can’t fill the order without your authorization of payment.

Me: You do it when I renew prescriptions all the time… how is this different?

Prescription provider phone rep: We can’t fill the order without your authorization of payment.

Me: This is a highly inefficient way of doing business. My doctor sends the prescription directly to you, then I have to wait to find out it’s not coming, then I have to call you, then you tell me I have to provide payment when you already have my credit card info on file.

Prescription provider phone rep: We can’t fill the order without your authorization of payment.

Okay, I realize there’s a difference between “providing payment” and “authorization of payment”, but still… why do I have to find this out on my own? Why was I led to believe my prescriptions would be shipped when they weren’t? Why was I not told that they were waiting for my okay before filling my order?

I don’t want to say the provider did this on purpose. I don’t think their purpose was to deny or delay my prescriptions. After all, if they don’t fill a prescription for me, they don’t make money. And that’s where the problem lies.

It’s just my opinion, but it seems to me that prescription providers, more than any other entities providing goods, services, or prescriptions through an insurance plan, are not about the patient at all. Not in any way, shape, or fashion. No… they are purely profit centers, and they operate as such. I don’t think my provider wanted to deny my coverage. I just think they skimped on customer service and expediting orders in an effort to make a few extra bucks. They hired someone to think this all out, but they didn’t pay top dollar, so what they got was a system that doesn’t really work at all.

And they don’t seem to care about it, because, let’s face it… once I’m on their plan, they have me for the entire year. At that point, they don’t have to be nice, or helpful. They just have to squeeze as much money from me as they can. If they have a stupid, inefficient way of doing that, who cares? They know I’ll be back when my next prescription needs to be filled.

I suppose it hasn’t occurred to providers yet that better customer service could help expedite orders, rather than having them sitting in a queue somewhere. More orders, more money, more profit. And I suppose it hasn’t occurred to them yet that a superior level of customer service could have a positive effect on patients, and the plans they’re covered under, which might make their plans more appealing to additional clients in the first place. More orders, more money, more profit. That requires too much forethought, I guess. I wonder if they even know what that word means.

Oh yeah, it’s prescription burnout I’m feeling. Or prescription provider anger. Either way, it’s not healthy. And my provider is perfectly okay with that. As long as I keep coming back for more.
 
 
 

By StephenS | Tagged , , | Comments (8)

#IGNITEInterop – Let’s all communicate (Part 2).

February 11, 2014 – 9:41 am

DSC01377
Since it’s only 40-some miles away (though a two hour commute) from home, and I got enough advance notice, I headed to Washington, D.C. last Thursday for HCI-DC 2014: Igniting an Interoperable Health Care System.

The event was co-hosted by two different groups: The Gary and Mary West Health Institute, which, according to its website, “is an independent, non-profit 501(c)(3) medical research organization whose mission is to lower health care costs by developing innovative patient-centered solutions that deliver the right care at the right place at the right time.” And the Office of the National Coordinator for Health Information Technology (trust me, it’s an actual government office).

The idea of the day was to get as many people in the room as possible to talk interoperability in health care. Not just, “Can I get my CGM to talk to my pump”, although there was some of that. But there was also a lot of talk about how to push for standards in medical record-keeping, and making them accessible to health care professionals, in the same format, worldwide. Imagine this: I have an accident in another city, I get rushed to the ER, and a doctor could pull up all of my medications and doses, and my pump settings, etc. Today, all of that might be on paper somewhere, and depending on the timing, a doctor may or may not be able to get access to it right away. You get the picture.

There were things I liked about this conference, and things I didn’t like. I hope I can explain a bit here. Yesterday, I talked about the things I liked. Today, things I didn’t like.
 
 
What I didn’t like:

Unless they were hiding under a chair or something, there were no manufacturers present at this gathering. I don’t know if they weren’t asked to attend, or if it was too long a trip from California or Europe or wherever they are, or if they just didn’t want to talk about interoperability at all.

If it’s that last thing: Let me just share something I mentioned in a conversation with someone over lunch that day.

I’m sure that the cost of the CareLink software is baked into the overall cost of my Medtronic insulin pump. But if Medtronic, for example, decided to make their code available to all, or if they agreed to adhere to a standard software protocol with future products, I would still want an insulin pump. And you know what? If they did get on board with interoperability, I might actually want to buy their pump even more. Insulin pumps and CGMs won’t go away once their data is “democratized”, to borrow a phrase I heard that day. Each patient will buy what’s best for them at the right time, but they will still want pumps and CGMs. And if manufacturers finally move toward a standard for device interoperability, they would finally be free to spend less time worrying about how to make their software proprietary, and spend more time worrying about how to make a better product (disclosure: I’m perfectly happy with my insulin pump right now, even if I see it as less than perfect).

There was something else that touched me that day. I want to move delicately around this subject. But… here’s the thing: There were a few female presenters (like, three). All the rest were male. Nearly everyone in a panel discussion or presenting was white.

Now, I realize that even if there was a concerted effort to bring more diversity to the stage for HCIDC 2014, there probably still would have been an overabundance of white people facing the audience. That’s just the way it is. But the fact is, the audience was pretty diverse in itself. Enough so that there were a couple of tweets from others who noted the steady stream of people walking onto the stage wearing a dark jacket, white shirt, and a tie.

Washington is a very diverse city. America is an amazingly diverse country. For next year’s event I kind of hope the presenters, or the members of panel discussions, will reflect that diversity just a little more.
 
 
So, now my overall take on this event:

I liked it. I really liked what I heard from everyone, onstage and off. I’m encouraged by where the discussion about interoperability is headed in the future. The will to make this happen, or at least get down the road a little farther, is really starting to crystallize.

But without manufacturers becoming part of the discussion, we’re not going to get very far. As Malcolm Gladwell alluded to in his keynote address, “No one will work toward interoperability in health care unless it is framed as urgent, imperative, life or death”.

Well, guess what? It is. Interoperability isn’t everything. But it is a game changer, because it would 1) Free up already overworked people from writing and entering so much data that can’t be shared anywhere else but at the point of care; 2) Lower costs for manufacturers, because once a standard is in place that everyone can follow, work on proprietary software will be minimal; and 3) Help improve patient outcomes, due to devices working together to ensure safety and optimal results for the patient, rather than being in their own silos just so they can generate more imagined revenue for the maker.

I agree… the time is now. We have the means and the determination to make interoperability in healthcare a reality. I hope this event comes back next year, and I’m looking forward to what kind of changes will happen between now and then.
 
 
 

By StephenS | Tagged , , , | Comments (2)

#IGNITEInterop – Let’s all communicate.

February 10, 2014 – 9:38 am

Since it’s only 40-some miles away (though a two hour commute) from home, and I got enough advance notice, I headed to Washington, D.C. last Thursday for HCI-DC 2014: Igniting an Interoperable Health Care System.

DSC01339The event was co-hosted by two different groups: The Gary and Mary West Health Institute, which, according to its website, “is an independent, non-profit 501(c)(3) medical research organization whose mission is to lower health care costs by developing innovative patient-centered solutions that deliver the right care at the right place at the right time.” And the Office of the National Coordinator for Health Information Technology (trust me, it’s an actual government office). The idea of the day was to get as many people in the room as possible to talk interoperability in health care. Not just, “Can I get my CGM to talk to my pump”, although there was some of that. But there was also a lot of talk about how to push for standards in medical record-keeping, and making them accessible to health care professionals, in the same format, worldwide. Imagine this: I have an accident in another city, I get rushed to the ER, and a doctor could pull up all of my medications and doses, and my pump settings, etc. Today, all of that might be on paper somewhere, and depending on the timing, a doctor may or may not be able to get access to it right away. You get the picture.

There were things I liked about this conference, and things I didn’t like. I hope I can explain a bit here. Today, I’ll give you the things I liked. Tomorrow, things I didn’t like.
 
 
Things I liked:

The first panel discussion covered Perspectives from the Point of Care. It was an interesting discussion moderated by the Chief Medical Officer of the ONC (Office of National Coordinator for Health Information Technology). The panel included some great voices from a healthcare provider point of view, and from the patient point of view, including Anna McCollister-Slipp, Co-Founder of Galileo Analytics and a fellow Type 1. A large part of the discussion centered around Anna’s Type 1 diabetes, the devices she uses, and these two facts: 1) None of her devices talk to each other, and 2) Her healthcare providers cannot, due to rules coming down from the healthcare system they’re working in, download any information from her pump or CGM. From first-hand knowledge of the conversation, I can say that everything Anna said, and everything she advocated for, was right and correct and she was a super advocate for PWDs everywhere. I wish you could have been there to hear it.

Pretty much every discussion during the day was like the one above. There was a real feeling that the time is right to move toward interoperability in health care. One of the photos that really brought the point home was when we were shown someone in an ICU room, with about ten different machines at work helping to keep the patient alive. And none of them talked to each other, or shared their data with any system in the hospital. So doctors or nurses needed to view what was happening with each machine, then write the data down in a chart or a folder, then enter some of that data into the hospital’s system. How much time does that take? How much care is not being given to the patient while a doctor or nurse is compiling data like a drone?

I liked the following statements that were made (please understand that most of these are paraphrased):

Anna McCollister-Slipp: “An A1c is helpful, but kind of like using The Farmer’s Almanac to plan your afternoon. My endo needs to be able to see my CGM data”.

Stephen Jones, President and CEO, Robert Wood Johnson University Hospital and Medical Center: “If health care systems develop uniform standards, we can then use our buying power to drive interoperability, and force the issue with manufacturers and vendors”.

Dr. Michael Johns, Chairman of the Center for Medical Interoperability: “We need to move now, or we’re letting down the next generation”.

There were many comments like this throughout the day.

Also, I very much liked the keynote speech from Malcolm Gladwell, best-selling author of The Tipping Point and other books, and a former writer on the medical beat for the Washington Post. Which, he reminded us, meant that if he were still at that job, he’d be covering the event this day for the paper.

He used three examples of how interoperability in other arenas allowed for increased outcomes for consumers and businesses, not less. How the interoperability wasn’t always made possible by the people who designed the parts that inspired the interoperability. And how the time is now… the moment is right for pushing this cause forward. He mentioned how there are three roadblocks to interoperability: Culture, meaning how things are done today and how people expect them to be going forward; How to frame the message, because sometimes it’s more than shouting, but rather getting people to understand when, and why they have reached a critical moment that requires change; and the concern over Consequences to change. Maybe one part of a business does suffer, but another part of the same business grows as a result of the implementation of interoperability. There was a good recap of the speech written at Healthcare IT News by Diana Manos, and I will refer you there for more:
http://www.healthcareitnews.com/news/gladwell-interoperability-war

A couple of the things he said that resonated with me:

“The time for deep thinking about interoperability is over. We already know it’s important. The resources are there. Now we need to act.”

“No one will work toward interoperability in health care unless it’s framed as urgent, imperative, life or death.”

Tomorrow, more on this event, especially what I didn’t like, and my take on a few things.
 
 
 

By StephenS | Tagged , , , | Comments (2)