"Your message is in the system."

So... (this is how most of my blog entries start).
The traditional health system in this country sucks. I mean, royally blows. It's pathetically broken.

I've been having a fun time with high blood sugars. And by high, I mean 120-200, which is by no means crazy high. Ever since I started my anti-diet (I had bacon fried in oil, topped with guacamole for breakfast), I have had really good control, and very few highs over 150.

Starting two days ago, my blood sugar started getting really stubborn and would not be nudged down with insulin. I took far higher doses than normal, but still no dice. I corrected for a BG of 180 with 3 units (each unit brings it down 35 points), so it should go down to 75.

Didn't happen. Only got down to 160.

No matter what I tried (short of crazy dosing with 10 units--I didn't try this as it would likely kill me), the BG stayed high, or came down temporarily and bounced back up.

Like a good diabetic, I called my endo yesterday morning. I explained it to the nurse (remember, a nurse in the clinic once told me that I could ease up on testing now that my A1c was 6.1).

"My blood sugars are not responding to insulin," I explained. "I've taken twice as much insulin as would normally be needed, plus a max dose of symlin. I haven't eaten anything carby, and still the BG is not budging. I don't know what it could be -- my insulin, my pump, perhaps I'm getting sick, maybe it's my time of the month... I am concerned that I might be in ketoacidosis. Here's what I've done: I've increased my basal rate by 35% and am drinking lots of water."

She said someone would get back to me.

NOBODY GOT BACK TO ME.

I called back in the afternoon.
"Oh yeah," I was told. "Your message is in the system."

Oh crap. Now I know I'm doomed.

NOBODY GOT BACK TO ME.

Here I am, potentially stewing in my own toxic acidic blood, and "my message is in the system."

Taking matters into my own hands (and after polling the myglu.org community), I went and did some yoga flows and strength training to get my blood flowing. By the time I was done, my levels were below 60.

OK. I can deal with lows. I turned my pump off for an hour, and it came back up slowly. The night was OK, never went above 125. Woke up this morning, went to work out, blood sugars are looking good.

Then, after eating breakfast (bacon and guac) and sitting down to work for an hour, the stubborn BGs are BACK! My blood glucose was 180. I took a total of 8.8 units (6.8 through the pump, and an additional 2 injected just to make sure it was getting in, plus 60mcg Symlin), and it only came down to 140! WTF, as my husband put it.

I called the clinic back. She said, alright, she'll make sure the doctor gets the message and will get back to me. I told her to note that I understand that they do not approve of my diet, but they will never convince me to go off it.

A few hours later, here is the call I receive from a nurse in the clinic:

Starts out with a disclaimer: "We do not recommend the zero carb diet, but if patient wants assurances that she is not in DKA, she can come in and take a ketone test. I recommend increasing her basal rate by 0.1 units and setting an alarm for 3:30am to wake up and test to make sure she isn't low.
I recommend the patient see if she is eligible for the continuous glucose monitor."

How does one describe the biggest pile of stinking, unhelpful dogcrap ever known to pass as "patient care?"

There are so many things wrong with this. It should be obvious, but I'll still take the time to outline why there are so many problems with this chain of events.

1. If the doctor is too busy to deal with patients, he should not have any patients.
2. This is the very doctor who prescribed me the CGM, so his advice to get one is just pure laziness on his part. 
3. Really, doc? You thought I was calling to ask what my basal rate should be set at? Do people still do that? Did you not get the part of the message that I had to relay through 3 different nurses that I already upped my basal by 35%
4. Lastly, and I say this with the utmost patience, it is not a ZERO carb diet. That is next to impossible to achieve. It's a 30-50g carb diet. But thanks for your accuracy and your malpractice concern.

I said thank you to the nurse, who clearly didn't know what the hell she was talking about and at several points in the conversation, actually said, "that's what the note says."

I also expressed some of the points outlined above and said, as I'll say again, THIS IS NOT CARE.

Here's my unsolicited advice. Get a doctor you like and who works with you, even if they are out of network or not covered. Honestly. I called my new doc, he called back right away. He took a moment to tell me sorry for the frustration I was experiencing, and brainstormed a series of events to try to make sure I was dealing with the problem (switch to long-acting to make sure it's not the pump's fault), and insisted that I check back in with him later in the day.

The UK thinks WHAT about American healthcare?!?!?!?

Holy shit.

I was just told that UK bureaucrats look to the US as an exemplar of privatized health insurance. We have a guest staying with us from across the pond who told me a bit about how to the power players in the British government are systematically cutting health benefits to the disabled and piecing apart the revered (in my mind at least) NHS to sell off to their cronies.

WHAT?!?!? Have they not been listening to a thing I have said?

Here's what is going on, as far as I can surmise from the press, but be warned that the spin on this seems to be excellent:

• The UK has hired a French company, Atos, to review disability benefits in hopes of dropping a half million recipients of disability benefits--such as Personal Independence Payments, Disability Living Allowance, 
• Mobility services will be cut -- leaving disabled folks without a reasonable and affordable means to get around, including to and from work
•  More than a half million disabled people will be reassessed, and some 330,000 of them can expect to see benefits cuts or reduced

What's amazingly ironic is that Fox News looks to what the UK is doing as an exemplar for the US system. Ha! When discussing the topic, one Fox host notes that the UK hired a French firm to reevaluate disability claims. He asks, "Did it work?"

"It worked, in that it exposed a huge scam," the guest responds. Scam, you say? Let's talk about this "scam."

(This article from the Guardian is a great analysis on what's happening.)

Work and pensions secretary, Iain Duncan Smith, also claims that there was a huge scam under the surface-- claiming that a 30% increase in those on disability benefits over the past few decades is due to fraud and abuse. 

The Department of Work and Pensions' own estimates put fraud at 0.5%, so where is this scam? Also, one can think of plenty of reasons--just off the top of one's head--why disability claims would go up 30% over the years. 

1. Rise in obesity (thanks, America, for leading the pack on this one)
2. People living longer (the UK allowed for people to continue receiving disability claims past retirement age in 1992, causing a sharp rise in disability claims)
3. There has been broader (and better) recognition of conditions 

Our guest thinks that while these officials in the UK government are doing what they think is best for the country, they are operating from a fundamental belief that disabled people are really just lazy, don't want to work, and/or want a free ride. SOUNDS FAMILIAR (ahem, Fox News/Tea Party).

One report shows a rise in verbal abuse towards disabled people. Yes, because that's what they need. People yelling at them. In addition to the disability that makes everyday life difficult at best. And now a French company is coming in and making really BAD assessments about who is fit for work.

"The work capability assessment, outsourced to Atos, a private healthcare organisation, has made it harder to qualify for the benefit, but the assessment process has been highly erratic, with thousands of patients with chronic, lifelong disabilities being wrongly found fit for work." 

A lot of these decisions -- claiming that disabled people are fit for work -- have been appealed and overturned. 

As the article points out, a lot of these people receiving Disability Living Allowance (often used to help get to and from work) are already living in poverty. Removing this allowance will plummet them further into poverty. 

Here's my commentary:
This issue isn't black and white. Nobody can claim that it is. Some conditions are the result of unhealthy lifestyles, and some disabilities can happen to anyone at anytime. If we want to really cut down on the number of folks on disability claims, then let's promote healthy lifestyles. Hey, let's start with an assessment of the food industry--that dirty, irresponsible gang of unfeeling thugs. Let's reform health insurance to reward healthy choices. 
What we shouldn't be doing is this: Cutting back on services that allow disabled people some ease and convenience in basic, everyday conveniences that the "abled" population takes for granted. Like getting around. Like being able to work. How can you claim that someone is "fit for work" when they have to spend 6 hours a day soaking and wrapping their feet because of complications of type 2 diabetes?

Instead of antagonizing this already vulnerable, yet incredibly resilient population, let's put this level of effort to eradicating obesity. There's your decrease in disability claims: help obese people get to a healthy weight range. Give them the tools to do so. Give them the support to do so. What if, instead of paying out a small pittance of disability living allowance throughout their lifetime, there is a focused effort on health education, support programs, assistance with making healthy choices, FREE EXERCISE? 

Crazy, I know, but it would work. Free Herbalife shakes for all.

What is it they say about sausages and laws?

They say you don't want to see how either one is made. Well, I'd like to add insurance policies, and well, pretty much insurance anything to the list.

I've been on a really great plan for the past 10 months -- thanks University of Michigan (and the gays! who paved the way for significant others to be covered on their non-spouse partner's plan). Each time a claim is processed, the insured member gets a copy of the Explanation of Benefits (EoB), which outlines the services rendered and if they were covered (and for how much). I'm the type of person to carefully go over each and every EoB; this is pretty much the only way to figure out what was charged, how much, and what was paid.

In looking over my EoBs, I noticed two things--one of which should be illegal, and the other is just really sneaky.

1. The discrepancy between what the provider attempts to charge and the price the insurance company actually pays is criminal. Case-in-point: Lancets (the little plastic pokey things that go in the lancet device in a blood glucose meter kit) are charged at $75. That's how much an uninsured person is charged. The insurance company has negotiated (strong-armed?) this price down to $5. The real cost of lancets remains obscure, but is probably somewhere around $10 if I had to guess. 
2. The insurance company uses the amount is was charged as the "amount covered." Remember, they didn't pay this amount; it's just what they were charged. Ie: "Amount covered: $75" when really they paid $5 for the thing. Disgusting.

While I think this is very sneaky of the insurance company, I don't think it's such a huge deal, unless they use this amount to calculate toward maximum yearly or lifetime benefits. When I was in graduate school at Brandeis, I had an insurance plan (boo Harvard Pilgrim, you sucky, sucky insurance company) that had a maximum yearly payout of $2,000 toward prescription benefits (then the plan reclassified all kinds of items that are traditionally under Durable Medical Equipment and called them prescriptions). If they used the amount charged--rather than the amount paid--as a way to calculate that maximum amount, then I have a HUGE problem with that.

Let's look at an example, using real amounts, of what this would mean:

Amount charged (and amount paid):

• Lancets: $75 (paid $5)
• Sensors: $1500 (paid $1100)
• Insulin: $768 (paid $485)

Total amount "covered" = $2,343 (leaving me with $343 to pay in addition to the copays for each Rx)
Total amount actually paid = $1590 (leaving me with $0 to pay, except for copays, and some cushion room for other prescriptions, should I need them)

Just to get political for a minute: Is this what Republicans envision for our free market healthcare system? One in which insurance companies and healthcare providers continue to obscure and confound pricing? One in which the uninsured is completely taken advantage of?

When you look at the inflated prices that the uninsured are paying, does requiring people to get health insurance seem so bad? Perhaps when all are insured, these criminal practices will go away.

Done.

The obscurity of medical services pricing

I've often wondered about pricing in the healthcare industry. It is so obscure. I'm very grateful to NPR for exploring this issue recently on Planet Money's Hospital Prices, Revealed! (Sort of).

First, I'd like to recount my fun visit to the hospital on New Year's Eve, 2010 (through Jan 1, 2011). Well, I won't get into the details of WHY I ended up in the hospital (new CGM + too much wine = low blood sugar and friends calling 911).

I will talk about the time a $10,000 bill that made its way to my mailbox. To make a long story short, I ended up making the hospital audit its own bill and contested the claim with the insurance company along with a two-page narrative with exhibits A-H showing why I was right. In the end, they sent me an anticlimactic letter saying that my bill had been adjusted and guess how much I owed? $35 (the amount of the emergency room copay).

What I was astounded by was the pricing of the itemized bill. (Apparently you can get your hands on these if you submit and sign the right form.) Items such as:

• Laboratory $78
• Unicyclin $109
• Emergency room $2151
• Observation room $1051
• IV start $314
• Physician fee $410

That "laboratory" fee of $78? That's for pricking my finger and testing my blood! Which, by the way, was vehemently against my wishes. I told them I preferred to test my own blood with my machine, but they insisted. The Unicyclin is for one pill of anti-naseau medication. IV start is the tubing for an IV. Just the tubing. The only reasonable charge I see up there is the Physician fee!

Now, when the whole thing was over, I looked at the EoB to see how much the insurance company actually paid for these services. $33 for the unicyclin (less $76 than the bill), $13 for the lab fee (less $65 than the bill). From the NPR article: "...private insurance companies negotiate their own rates with hospitals, and the rates bear little resemblance to the list price."

So, wait. Let me get this straight. If you were charging ME, a potentially poor and uninsured diabetic, it would be 3 to 5 times what you would charge the insurance?!?! WTF.

Insurance companies, hospitals, medical service providers: SHAME ON YOU. You are all so sketchy. Just be reasonable. Have a fair price. Stop engaging in this racket that bankrupts people and leaves them fat, sick, and/or dead. Have some goddamned decency. 

"It's no secret that hospitals' list prices are ridiculously high and seemingly arbitrary."
It is a secret (to me, at least) why Americans are willing to put up with this racket.

"But your policy is going to kill me!"

OK, so the medical equipment supplier won't approve my plea to get the new Dexcom G4 system, and thus I will need to stay on the crappy old system for a bit. Fine. I understand that what I'm asking for is kind of nitpicky, and yes, I can chill out on my current CGM for the remaining two months it's under warranty. But I really want the new Dexcom G4 system! It's amazing. 30% more accurate. Twice the range. My God, I'm drooling over it!

Here's my beef: I just don't think that an industry that deals with the health of people should be set up so rigidly. There has been a strong theme, growing bolder each day, of hiding behind policies. Some of these policies make sense (like not covering a new CGM until the last one is out of warranty). Some make ZERO sense.

I was on Harvard Pilgrim healthcare through Brandeis University, where I went to grad school. This was one of the darkest times of my life as far as coverage goes. They reclassified insulin pump supplies (traditionally classified as durable medical equipment and covered at either 80% or 100%), and instead put them under "Prescriptions." You know, like medicine and whatnot. Then, they capped Prescriptions at $2,000/year. Mind you, after the actual prescriptions I needed (insulin, test strips), I wouldn't be able to get any pump supplies, let alone a new pump, should I need one.

I calculated out how this policy would affect me: I would be covered for about 2 months of my life-necessary medical supplies. READ: I would die after 2 months. I did everything I could to fight this. I spoke with managers. I spoke with Brandeis to let them know that I would die under this policy. NOBODY CARED. (Well, they cared, but still hid behind the policy.)

How did this end, you ask? I'm obviously not dead (this happened in 2010). Cuz I'm a hoarder!!!! Mwahhahahaha! All diabetics are. If we weren't, we would be totally screwed by these policies. I had enough pump supplies to power me through grad school and until I got real insurance.

I know Obamacare has made it so insurance companies can no longer categorically deny me coverage as a type 1 diabetic (this has happened, over, and over, and over). But this is where I say "more regulation!" You CANNOT consider that real coverage. It's fake coverage. Oh, and I didn't even mention the $100K lifetime cap!

The university system wins it! Second only to Universal

I thought that teachers had good health coverage. That was until I looked into how good professors have it. The University of Michigan health coverage for faculty is crazy good, and even better if you have type 1 diabetes. They have a diabetes program that eliminates copayments for most of the prescriptions: insulin, syringes, test strips. And other related prescriptions that are not necessary but can help with management, such as Symlin or Glucagon, are on a copayment reduction schedule which means they cost as low as $15 for 3 months' worth.

They even tried out a program to see if eliminating ALL copays for diabetes-related stuff (Dr visits, Rxs) would encourage type 2 diabetics to take better care of themselves. It didn't. That was a year before I got on UMPC.

However, it is hugely bureaucratic. Partly because it has to be in order to cut down on fraud or unnecessary services, and mostly because it's managing so many moving parts.

Let me illustrate: There is something called "Coordination of Benefits." Sounds nice, right? No, it's not. It's more of a racket among insurance companies to make sure that nobody has to pay for something that another insurance company has paid for (OK, fine, it's mostly to protect insurers from fraud, but also kind of a racket.) I recently learned about this when I tried to lie, cheat, and steal my way to the new Dexcom G4 system, which is leaps and bounds better than the old SEVEN Plus system. Twice the range! 30% more accurate! Who wouldn't want that?

Well, when they go the request from my doctor, they actually called the manufacturer and demanded my records (wait, I thought that was against HIPPA). When they found out that my current CGM (Continuous Glucose Monitor) is still under warranty for another two months, they denied my claim. Oh well. Guess I'll just have to wait the 2 months.

BUT, my larger point here is that in the universal system THIS DOESN'T HAPPEN. There's no such thing as coordination of benefits. It's all already coordinated. I'm not saying universal coverage is without fault, but image, just imagine, a system that cuts out all that waste and extra manpower and paperwork?!?!? It would be so efficient.

Sigh.