Blood glucose testing: how I freaked myself out.

Hey Dad,

I'm glad to hear you're cleared to go back to work, and I'm still worried you're going to overdo it. I know that there really isn't any light duty without the company giving you a full-time helper, so they're not inclined to do it. It would be nice, though, since you've been there for such a long time. Mom said you're keeping a closer watch on your kidney function than you have in the past. I hope that if you see any signs of new problems, you'll see to it immediately. I know that's easier said than done since it's hard enough to keep post-surgical appointments!

Anyway, I think you'll get a kick out of this story:

OneTouch UltraMini kit.

One of the things I do as a part of my fieldwork is I talk to vendors at diabetes conferences, mostly to learn how they fit into the bigger picture of diabetes care and what sorts of new technologies are coming on the market. Sometimes I get free samples of stuff sent to me weeks or months later. Last year I had more cracked heel balm and nutritional samples than I knew what to do with. This seems to be the year of the blood glucose monitor. In case you were wondering, diabetes testing supplies are available over-the-counter. The only reason people usually get prescriptions for them is so that insurance might pay for all or some of the cost. Meters are pretty cheap (often free!); it's the cost of the test strips that's crazy.

As I was going through the most recent box of samples, it occurred to me that while I'd seen blood glucose testing done and had known the basic mechanics of it, I had no idea what it was like to experience it. Today was the day to change that.

So I opened up the meter. It looked pretty simple. On the box, it promised me that it would be fast and simple to use.

Those are just for the lancer!

I found the instructions and unfolded, and unfolded, and unfolded them for reading. Suddenly, it didn't seem so simple.

Once I got it set up, I learned that my cold fingers didn't want to give up blood, so it took multiple sticks.

And then I freaked myself out. I mean, I knew I hadn't had anything more than coffee yet, but 56 was alarmingly low. I ate immediately for fear I was gonna pass out. Was it safe for me to be home alone?! My cats just aren't useful in these situations.

Now panic!

It didn't take me long to realize that I wasn't as foggy, shaky, and acutely ill as I get when I usually go hypo. Besides, with a reading of 56, shouldn't I be dangerously so? I quickly read a different section of the meter instructions learned that if the blood gets smeared in the collection process, it might read artificially low. Incidentally, this isn't the only reason someone might get an incorrect reading.

I did manage to smear on my first try since I had so much problem getting blood, so I restarted the process. This time, I messed it up by not having the test strip all the way in place before the blood hit it. So I had to do it again. A couple of hours and more food later, I'm hanging out at a reasonable post-meal level.

I may not be a genius, however I am extremely literate and have good background knowledge for how to do this and I still messed it up. I initially failed at the finger stick, blood collection, and strip insertion--all points at which neuropathy, vision loss, and limited manual dexterity would have made it exponentially more difficult.

That's better.

Today, I went through about 7 finger sticks on 2 fingers (trial and error is painful!), 4 test strips, and 3 lancets. If I were just barely scraping by, the $4.00 those test strips cost (for my free meter) would hurt. I did the extra testing for science and because I was freaking myself out. It would be a hard sell if I knew I was going to keep having to do this a few times a day, every day--especially if the extra test strips had to come out of my food budget.

I promise I will be more understanding when you tell me you aren't testing as frequently as diabetes experts think you should.

Love,
Mel

My fingers do not consent to more testing.

P.S. My choice of the OneTouch UltraMini monitor was arbitrary. It was one of the four types of meters I've received from multiple manufacturers, which all claim to be fast and easy to use. After this experience, I have no desire to do comparison tests.

Did I mention that finger sticks hurt?

Why I'm in Orlando in August

Hey Dad,

It was disheartening to get the news last week that you were having more problems with your kidneys again.  It's so disappointing that after you've changed over to a kidney diet that you're still forming stones and getting infections more and more frequently.  Has it even been two months since the last round?  It's unfair and disappointing to see no benefit from making substantial dietary changes the way you have.  When I asked you about your diabetes care and you told me that you had bigger things to worry about, I couldn't argue the point. I'm so glad we had a couple of days together before I drove up to Orlando for the American Association of Diabetes Educators conference.

This AADE conference feels very different from the other two that I've attended.  I'm sure part of it is a matter of finding my own place in the diabetes world, but there's also been a huge political shift with the implementation of the Affordable Care Act and the ways it is changing reimbursement and the goals for health care organizations.  I've got a lot more information to share about this, but I have some questions to follow up on before I write a whole lot more about that.

What I can say, though, is this is an interesting time for health care professionals. Historically, nurses, dietitians, physicians and pharmacists, etc. have each had their own turf marked by the things they're licensed to do and the clear delineation of their roles in health care delivery.  Now, though, its in the best financial interests of hospitals, clinics, etc. to take a more collaborative team approach to patient care, such as in Accountable Care Organizations and the Chronic Care Model in patient-centered medical home organizations.  This is a hard shift for practitioners and the organizations they work for, much less for patients who are so used to dealing with the system the way it has been.

Diabetes educators have been doing collaborative work all along.  Because they don't have their own state licensure that's required for billing insurance for their services (generating revenue), they've had to work under the supervision of a recognized provider or as a part of an ADA recognized or AADE accredited program.  It makes a lot sense that the AADE is urging their members to become more vocal leaders where they work and to be more involved in the politics of health care in order to gain their own licensure and to exert pressure on states to expand Medicaid where it has not been expanded.  Basically, if diabetes educators gain recognition as providers, then they would be more valuable to health care organizations in terms of revenue.  This would theoretically expand access to diabetes education for patients through increasing the number of available educators and removing some barriers to accessing their services.  One hopes that this would actually improve the quality of care in the process, but in our patchwork health care system what matters most is revenue and cost containment.

I'm really enjoying that so much macro-level analysis is being presented and that so many sessions are dedicated to educating the educators about the new political and economic climate for their work.  I've talked to a lot of people outside of the sessions and very few had any idea about these issues or how their work fits into the larger organization of health care.  I don't usually talk about my own work as much as I have been this conference, but I think it's better understood on the tail of a macro-oriented session.

You asked me why I was going to this conference if I'm finished with data collection and well into the writing phase of my dissertation.  A few days ago I said something like "because this is actually the last of my data collection."  Today, though, I know that it's also because being at a conference full of people who are so committed to improving diabetes care reminds me that the type of research I do is important and can make a substantial contribution to the field.  I am definitely feeling recharged in my drive for this work even if I'm running short on rest.

Seeing you and being surrounded by diabetes care workers has made it okay that I'm in Orlando in August.  At least it's not supposed to rain for the next hour.

Love,

Mel

Catching up.

Hey Dad,

A lot has happened since I last wrote!

It's funny to be reminded that Chicago was having an unseasonably warm fall just before the polar vortex brought us to a halt.  I thought I wanted to hibernate before!  I realize that temps in the 50s are rough on Floridians, but I'm seriously reconsidering living in a place where the air hurts my face.  You might have been onto something when you moved down there.  I'm sure you don't miss digging out parking spaces, but I have to say you're missing out on some seriously amusing dibs activity!

http://www.businessinsider.com/dibs-season-chicago-2014-1
These folks are classing it up!

The Affordable Care Act went live despite the government shut down.  Unfortunately, there have been problems with the insurance marketplace website launch and a lot of folks are confused about what coverage is available to them.  I've been sitting back and watching the political drama unfold and I'm discouraged to hear folks I know personally having difficulty affording health insurance even with subsidies.  I am not convinced that health insurance reform is what we need.  Time will tell whether this actually helps folks.  I'm worried about what will happen with patient assistance programs from pharmaceutical companies since they typically only help the uninsured to afford medications.  The least expensive health insurance for folks above the medicaid cut-offs almost certainly won't give them enough coverage for their drugs and/or will have too-high deductibles.

Speaking of diabetes drugs, I'm worried about you.

It's been a rough several months for you with the shoulder surgery and now more kidney problems.  I know you hate being inactive and that has created some challenges with managingyour blood sugar.  We’ve talked about this before, but it bears repeating that you really do need to take it easy because diabetes can make the healing process take longer and having an injury or illness can make it even more difficult to control your blood sugar.  A lot of stuff can come up for people withdiabetes who are also recovering from a surgery.

Your most recent news, though, is the most troubling.  I am so sad to hear that you have new kidney stones.  I know you’ve been happiest eating a low-carb diet, but the high protein diet is really causing somedamage.  I’m glad that you went to the dietician to get some advice about how to eat a low-protein diet while managingtype 2 diabetes.  I hope that you are able to keep it under control with diet, but please reconsider taking medications if the doctor thinks you need them.

In the mean time, I’m looking into some food resources for you.  I know you are not a fan of most vegetables and you aren’t all that keen on expanding your palette, but maybe there are some ways to make it easier to try new foods so you aren’t stuck eating the same bowl of lettuce every day.

Love,

Mel

Bring on the comfort food.

Hey Dad,

While it has been unseasonably warm in Chicago, the light is still waning as we get into autumn and I'm struck by how much I am craving comfort foods.  I also feel like I have less awake time as the days get shorter (even though that's not actually true), so I'm disinclined to spend much time after a workday cooking food or doing dishes.  It just feels a lot easier to just order takeout than to take the time to prepare a healthy meal.  This is the beginning of hibernation mode.

I'm lucky in that I don't do the kind of physical work that you do.  Sure, my days start stupidly early because I teach an early class, but I'm not wiped out by 4:00 p.m. the way you are since you were already at work for an hour when I got out of bed around 5:15 a.m.  If I'm tired when I get home from my cushy research and teaching job, I can only imagine your exhaustion when you've been out in the Florida heat lifting heavy things and sitting in traffic all day.

I'm pretty hungry looking at this.

But even with the warm weather, my body still knows it's time for comfort food.  Soup, chili, roasts, etc. just don't taste as good in the spring and summer.  I find it's a lot easier to eat healthfully with minimal day-to-day food prep time when I use a crockpot a couple of times per week.

Why I love the crock pot:

It saves you time because when you get home from work, your food is ready to eat.  All you have to do is prepare the vegetables ahead of time, which you can do in bulk and keep in the refrigerator.  You set up the food in the ceramic liner (the crock) the night before, take that out of the refrigerator in the morning before you go to work, set it in the heater, turn it on, and that's all.

They even make liners so cleaning it is super easy.  Personally, I spray mine with an olive oil spray to keep stuff from sticking too badly.

Bonus!  You will probably make more than enough food so you can freeze a couple of portions to eat for dinner on a different night or take it for your lunch if you will be able to use a microwave.

The next time I'm visiting, I'll have to make a pot roast in the crock pot so that I can introduce you to leftover pot roast soup.  It's inexpensive because I can use whatever type of roast is on sale because it will cook slowly.

Leftover Pot Roast Soup

1. Make a pot roast about twice as big as you'll need for one night's dinner in the crock pot using whichever recipe you like. I liked this recipe most recently and I skipped the thickening part at the end that used butter and flour so that my housemate could eat it (tip: use cheap wine you might drink, not cooking wine).  There are any number of recipes out there that will do, like these, these, or these that are also dead simple.  You can also use a pre-mixed seasoning packet, like onion soup mix, but be careful about the sodium content since those tend to be crazy high.  Cook vegetables like celery, onions and carrots with your roast, but use very few white potatoes or skip them entirely.  You can make most recipes less likely to wreak havoc with your blood sugar with some minor modifications.
2. Have an awesome pot roast and vegetables dinner.  
3. Put all of the leftovers back into the ceramic part of the crock pot and keep it in the fridge until you're ready to make soup (no more than a day or two).
4. To make it into soup, cut up the leftover pot roast and add about 4 cups of low sodium beef broth (again, watch the sodium content).  Stir it all together so that the broth is mixed into the drippings from the roast.  Add more vegetables to the leftovers. If you need more liquid, add a little water until the solid ingredients are just barely covered.  As it cooks down, there will end up being more broth compared to vegetables and beef in the end.  To season it, add garlic, pepper, and more of whatever herbs you used in the pot roast seasoning.  Hold off on the salt until it is nearly done cooking so that you don't end up over-salting it.  I highly recommend a heavy dash of curry powder to make it more interesting.  If you have a cold, give it a little cayenne pepper to help your sinuses drain.
5. Set the up the crock pot on low heat if you're going to be gone for 8+ hours.  Put it on high heat if you'll want to eat in about 6 hours.
6. If you want a thicker soup, I think adding a little bit of whole grain to it like barley is a better bet than thickening it with corn starch or rice. A little goes a long way.  I wouldn't add more than 1/4 cup of quick cooking barley to that pot of soup.  If the soup has too little broth at the end, add some boiling water.
7. Have an awesome leftover pot roast soup dinner.

The specific nutritional content will vary depending on the original cooking method, how lean the roast was to begin with, which vegetables you used, and whether you added a grain to the soup, but overall this is a really sound way to get two filling, hearty meals with minimal prep time, few carbs, and little money.  It's also friendly for people who have dietary restrictions because they can leave out the parts they're allergic to.  Since I know you're more interested in counting carbs than calories, I think this approach will work pretty well for you.

Hopefully, I'll be able to get down there to see you soon and to force some curry on you since I suspect that is the one suggestion you most definitely will not follow.  I'll save trying to convince you to eat mushrooms for another visit.  First, though, I have to go back into the dissertation cave for a bit. When I come back out of it, I imagine I'll have more to say about health insurance reform and other cheerful topics.

Love,
Mel

Why does diabetes care cost so much?

Hey Dad,

It was good to get your feedback about the Affordable Care Act summary I wrote. I agree that it's still confusing, even with it broken down the way I have it.  I promise I will return to it and make it simpler as it becomes clearer to me.  I'm afraid, though, that it will never be simple enough because of the politics around making that legislation happen in the first place.  The bottom line for you will be that it means no change because you already have health insurance through your union that I'm positive covers the minimum that the ACA covers and you are not an hourly employee.  You might get even more preventive services with no co-pay because of the new regulations.


We talk a lot about why health care is so expensive and I'm sure we're not getting bored with it because it's very complicated.  I was pretty excited when I came across John Green's explanation of the system.  I think he's able to talk about it clearly in part because he's not a health care researcher.  Also, he's way funnier than I am when I talk about it.

So in the US, we spend about $245 billion per year just on diabetes care.  This is a lot, but it's especially a lot when we consider that in 2007 it was only $174 billion.  In contrast, in the UK diabetes care costs about £14 billion (about $22,400 billion USD), Canada spends about $12 billion CDN (about $11.6 billion USD), and Australia spends about $10.3 billion AUD (about 21.5 billion USD).  None of this should be surprising after hearing Green talk about the overall massive differences in health care spending.

The UK, Canada, and Australia all have some form of universal health care, which means that basic health care is funded through taxes and administered through a centralized system. Countries differ about how much people pay for medications and supplies, but since those costs are much lower to begin with, the out of pocket costs for people with diabetes is lower than in the US.  It is hard to pin down figures because the systems all report things differently, but considering that in the US individuals with diabetes incur about $7,900 worth of expenses directly related to the disease and that health care coverage is so varied, it is safe to say that it's a lot more expensive to live healthfully with diabetes in the US than other leading industrialized nations.


All of the issues that Green brings up are absolutely part of the problem of the expensiveness of diabetes care in the US.  Getting back to the question I raised last time about the effects that the ACA will have on out-of-pocket diabetes costs, I still don't think it will make any difference for people who have already been insured mostly because even with increasing access to health insurance, since the payors (private insurance companies and Medicare/Medicaid) are not centralized, folks who do not qualify for government benefits will not benefit from the economy of scale (negotiation of prices for massive contracts) that Green was talking about.  We will also continue to have huge inefficiencies in the system and high administrative costs because there are differences in billing, coverage, reimbursement, etc., so I don't think the ACA is going to do anything to reduce the cost of health care in the bigger picture, because it is not in the interest of the health care industry to cut its profits.

I'm glad that the out-of-pocket costs are manageable for you and that you have a union that has advocated for you and your coworkers.  Not all union members are in as good a position, though, since there are some unintended consequences that might hurt them.  As much as I hate to say this, I am grateful that your coverage is already through a for-profit insurance company.

Love,

Mel

What does the Affordable Care Act mean for diabetes care?

The next phase of the Patient Protection and Affordable Care Act (ACA, "Obamacare") will go into effect starting October 1, 2013, when the Health Insurance Marketplace goes live.  From what I gather, it will be kind of like shopping online for car insurance, but for health coverage.  I was hoping to be able to write something specific about what the coverage means for people with diabetes, but those details are not available yet.  I think that will depend entirely on which coverage you or your employer buys.

Given that the open enrollment period begins in just a few weeks, I'm a bit dismayed by the lack of concrete information.  A lot of people who are currently uninsured receive discounts or free medications through Patient Assistance Programs and they have access to free or low cost health clinics that are designated for the uninsured.  But what sort of affordable coverage will be there for these folks who have historically been uninsured or under-insured?  Will the out of pocket costs of diabetes medications be even higher for folks who might no longer qualify for Patient Assistance Programs?

The ACA is so complicated that I even though I read policy jargon all the time, I had to re-read even the summaries several times to get the main points, especially around penalties and fees. Here's what I have figured out so far:

Download the PDF at https://dl.dropboxusercontent.com/u/6989183/PPACADownload.pdf

What it means for you:

• You have to purchase health insurance, either through your employer or the Health Insurance Marketplace.  You cannot be denied new coverage due to pre-existing conditions.

• If you don't purchase insurance, then you will receive a 2014 tax penalty of the greater $95 for an individual/$285 for a family or 1% of the household income.  This will increase to $325/975 or 2% for 2015 and $695/$2,085 or 2.5% in 2016.  Beyond 2016, it will adjust for inflation.

• You are exempt from penalties if you earn too little to file a federal tax return (below $9,530 for singles and $18,700 for couples) or the lowest price plan exceeds 8% of your income.

• If you do not like or cannot afford the insurance plan your employer offers, you can purchase insurance through the marketplace instead.

• If you earn 133-400% of the Federal Poverty Line (FPL), then you will qualify for government subsidies for premiums and cost-sharing for plans purchased through the marketplace.  The 2013 FPL (in the contiguous 48 states and Washington DC) for an individual is $11,490 and it is $23,550 for a family of four.

• You may qualify for Medicaid even if you didn't before (for example, if you are a single, child-free adult living near the FPL) if it is expanded in your state.  If your state does not expand Medicaid, there might be a state Basic Health Plan for you if you earn 133-200% of the FPL.  If you receive Medicaid or participate in a state Basic Health Plan, then you would not receive the subsidy.

• If your insurance company mis-spends your premiums on stuff other than health care services, you will receive a refund.

Since I wasn't getting anywhere with specific policy coverage, I then tried to figure out what is included in the minimum essential benefits that qualifying health care coverage is supposed to deliver.  All I have found are discussions that center around how frustratingly obtuse the legislation is and ways that employers might exploit loopholes by offering inadequate coverage and not reporting their compliance activities.  Even descriptions of the Basic Health Plans that states could offer in lieu of expanding Medicaid do not give any meaningful details.  

The U.S. Supreme Court ruled that the individual mandate to buy health insurance is constitutional, so in order to reduce the burden on low income individuals, Medicaid has been expanded.  However, since Medicaid is administered by the states, it is up to them to decide whether to expand that coverage.  This means that states that do not expand Medicaid eligibility per the federal guidelines will also not receive the additional federal monies, leaving many low income, working people uninsured due to their inability to afford insurance coverage through the health insurance exchanges.  They would be exempt from tax penalties for being uninsured, but they also would disproportionately bear the risk of devastating medical expenses in the event of serious illness or injury and they would not benefit from the discounted negotiated rates for services and prescription drugs that members of group plans enjoy.

So what does all of this mean for people with diabetes?

My informed, though unscientific, guess is that more people will have insurance and so they will use preventive health care services.  There should also be higher numbers of office visits which will hopefully reduce emergency room visits.  The ACA could be great for people who have had earnings above the thresholds for Patient Assistance Programs and government programs, but who could not get insurance due to lack of employer sponsored coverage or the pre-existing conditions clauses.  Of course all of this assumes that there are enough physicians who are taking new patients and who will accept the new insurance plans for payment to handle the increased numbers of patients.

Another issue is that there are some ways that practitioners are limited in what they can do if they are billing for it.  For example, in some free clinics for the uninsured, diabetes education and nutritional counseling are unlimited.  In clinics where patients are insured, the availability of those services depends on how much the insurance will cover.  I suspect that instead of expanding these critically necessary services for diabetes care, it will impose tighter limits across the board (for example, many insurance companies will cover three group diabetes education classes the first year of diagnosis).  The best we can hope for is that educational, nutritional and behavioral services for people with diabetes will included as unlimited preventive health care services under the basic health plans.

It is also hard to say what will happen to the affordability of medications and testing supplies.  I suspect that on the whole there will be greater access to a broader range of drugs for middle-income folks, but that the out of pocket costs will still severely limit what is accessible for individuals and families that are struggling to make ends meet.  There are some ways in which having too little prescription drug coverage is worse than having none at all when pharmaceutical companies are willing to subsidize or provide drugs free of charge for the uninsured.

I am cautiously hopeful that this health insurance reform can increase health and well-being in our society. I am also very skeptical and wishing we could have real health care reform.

Talking about/to fat people.

Hey Dad,

I don't mean to keep coming back to issues around obesity since I am focused on diabetes, but there's no way around it.  No matter where I look in my research I am no more than one step away from obesity--as a cause of diabetes, barrier to effective diabetes treatment, or a moral failure of the patient.

A couple of posts ago, I wrote about the problem with "diabesity," and I got a few high-fives for it. The thing people who are heavy talk about most with me is their frustration that doctors think that because they're heavy they are necessarily sick and that their weight will absolutely lead to diabetes and other conditions later on.  I know many healthy people who carry a lot of weight; they are still fully functional in terms of their ability to move and work.  Even into their 40s, they don't have issues with blood pressure, cholesterol or diabetes.  Some people are just bigger than others.  There are a lot of activists working to change the way the general public and the medical field see fat people because it just isn't so simple.

Since I spend so much time looking at the scientific research on obesity, I can see where doctors and other practitioners get the idea that having significant extra weight makes people sick (a lot of the time it actually does), but like so many other things that are driven by supposedly objective science, it is only part of the story.  I don't know how many times I have experienced unwanted discussion of my weight (since, despite a few decades of effort, I'm still a little fat) at a medical appointment when I was there for a sinus infection.  My experience is not unique.  I regularly hear from people how much that specific conversation keeps them from making an appointment even when they know that they need to go to the doctor.

The thing is, doctors are not the enemy; they are trained to behave with less compassion and it is only recently that any real attention has been paid to bedside manner around obesity.  In fact, the topic of obesity has been controversial for the American Medical Association, the main authority over the practice of medicine in the U.S. The shift in thinking about obesity as a disease means that now doctors have an obligation to bring it up in medical visits with patients, something they are woefully unskilled at as a whole.

I've been dreading what this means for people who already don't want to go to the doctor because they don't want to be lectured about their weight and was delighted to hear a talk at the American Association of Diabetes Educators (AADE) conference a few weeks ago that gave me hope that doctors can do so much better.  Dr. Arya Sharma of the Canadian Obesity Network presented a set of tools that they have put together to help physicians have productive, respectful conversations about obesity:  The 5 As of Obesity Management. In this model, they start with asking the patient's permission to have the conversation and then proceed to assess the degree to which obesity is actually causing illness or disability, moving far beyond the BMI measure that most practitioners use, the Edmonton Obesity Staging System.  In this video, Dr. Sharma talks about the stuff that got me most excited at the conference.

So all of that is to say I'm excited that there are researchers and clinicians trying to make it easier for us to get medical and other professional help for losing weight when we need it.  I'm also hopeful that doctors and their staff will become more compassionate and will have better tools for having these sorts of difficult conversations in respectful ways.

After all, if we don't feel respected by our doctors, there's no way we're going to listen to them--even when they might have something relevant to say.

Love,

Mel