Why You Should Be Depressed About the Government’s Attitude Toward Diabetes, Part I

First, an update on my last post, about Oregon’s decision regarding limitations on test strips for people with Type 2 diabetes. According to DiaTribe, Oregon’s Health Evidence Review Commission (HERC) voted on December 5 on a revised proposal on reduced access to blood glucose test strips for people with Type 2 diabetes. In sum: better than they’d originally proposed, but still bad. To quote DiaTribe:

“The new proposal will now provide 50 test strips to newly diagnosed type 2 patients, and then 50 strips for every 90 days if the patient starts using a diabetes medication. Although this is not optimal, it is certainly much better than having no strips for people with an A1c under 8.0% and only one strip per week for those with an A1c over 8.0%. We want to thank all of the diabetes advocates who made their voices heard and the more than 3,000 supporters who signed our petitionagainst the original proposal.

The new proposal also includes a “safety valve” for special cases, in which patients can receive 50 more strips if there is a change in glycemic control or adjustments in medication. While it’s encouraging that the commission responded to the public outcry against limiting test strips, we were shocked by the attitude of several commission members. We heard some say,  “More knowledge for patients is not always better…”, “Lay people just don’t understand these issues…”, and “We make guidance based on evidence, not emotions…” Even though the revised proposal avoided the worst-case scenario, these quotes underscored a profound misunderstanding of the daily realities of diabetes management.

There are many reasons that I am depressed by this, but it boils down to my distress at a series of recent government decisions to severely limit access to supplies and products that are crucial for managing life with diabetes — and statements, as indicated above, at how the people in charge come to their decisions. To give a few examples:  in July 2013 there was a nationwide roll-out of a new Medicare pricing structure for diabetes test strips, which cut reimbursement rates so dramatically that it cut out many of the high-quality, leading brands, leading to the possibility of Medicare beneficiaries (and, as a trickle-down result, people on private insurance plans), being forced to use generic strips with a serious, potentially deadly, possibility for inaccuracy. (For more on this issue, visit StripSafely.com.)

In September, at a DTS meeting devoted to the issue of test strip safely (more on this issue in my previous feature and in Riva’s post), I learned more about the attitudes of CMS (the Centers for Medicare and Medicaid Services – the people who make coverage decisions) on what an acceptable glucose level is for someone with Type 2 diabetes. Spoiler alert: they don’t see any issues with high blood glucose levels for people with Type 2, and cited a paper indicating that a hemoglobin A1c of more than 11% was perfectly safe for people with Type 2; therefore, according to CMS, people with Type 2 don’t really need accurate meters or access to test strips. 

About a week ago, I learned of an issue in which people on Medicare who get insulin for an insulin pump often can’t get their insulin, because it’s reimbursed at a rate so low that most pharmacies won’t provide it. (The detailed reason is that insulin used in a pump is considered a “medical supply,” and is paid for by Medicare Part B, which pays $75/vial — less than the cost to the pharmacy — whereas the same insulin used in injections is considered a prescription drug, and thus is covered by Medicare Part D, which pays about $150.)

And now, though it hasn’t gotten much attention yet, there’s a new pricing structure for durable medical equipment, scheduled to go into effect in 9 areas around the country on January 1, 2014 (it will be effective everywhere by 2016) that cuts the reimbursement rates for insulin pumps (already notoriously difficult to even GET on Medicare) by an average of 15%. That might not sound like a lot, but it’s actually a considerable cut to a product that also includes 24/7 customer support, 4-year warranties, and considerable quality control — important details for, you know, a machine that could kill you if it malfunctions. I am working to get to the bottom of this issue — more details later — but since Medicare’s decisions often trickle down to the private insurance world, I am very worried, especially when you combine this with the 72% reduction in reimbursement for diabetic blood glucose testing strips that became effective July 2013.  Apparently the next big issue is whether Medicare will create a coverage code for “sensor-augmented pumps” — that is, pumps that integrate with a continuous glucose monitor in any fashion, as Medtronic’s pump currently does. No Medicare code for sensor-augmented insulin pumps would deal a serious blow to efforts to produce a closed-loop “artificial pancreas,” since without a code, there’s no way a company could actually bill for such a product. (Oh, and side note: Medicare doesn’t have a coverage code for CGMs at all, since it doesn’t consider them to be important for its patient population.) 

Coupled with this, I am personally having a day where I experience firsthand one of the main consequences of high blood sugar that seems never to be addressed in government discussions on coverage: how it makes you feel. For reasons unbeknownst to me, my blood sugar began the day by climbing to 250 mg/dl (without any food!), and has remained there for the rest of the day, despite a workout, repeated correction boluses, a low-carb lunch, and an insertion site switch. According to my Dexcom CGM, it has now reached 303 mg/dl — a level far, far higher than I usually reach (thank god). I have no idea why it is doing this, and no idea how to fix it other than to continue to pump myself full of insulin and hope that it all doesn’t start working at once. In the meantime, my head feels cloudy, I’m peeing like a race horse, I’m having trouble typing, and I feel a lot of pressure behind my eyes. And perhaps most importantly — and the reason I bring this up here — I have been unable to concentrate all day. Not just because of the emotional stress of knowing my blood sugar is high, but because of high blood sugar’s effects on one’s ability to concentrate at all. 

And that is something I want to see paid more attention to. Medicare, Medcaid, and private insurers make coverage decisions based on their interpretations of medical and scientific evidence — and yet when I looked up “hyperglycemia and difficulty concentrating” in Google Scholar, nothing particularly relevant popped up. We will never be able to influence coverage decisions without pointing to the sort of evidence that the government and private insurers have decided they will rely on. So why is there not more of an attempt to provide evidence on this? I think it would be a simple research project: collect a sample of people, hook them up to a CGM plus glucose/insulin drip, and manipulate their blood sugar to be either high or normal. Then have them perform some sort of task on the computer that requires focus (ideally something like having them do a simulated driving game, since if high blood sugar could be proved to contribute to crashes, which would lead to expensive emergency room visits, there’d be an economic proof as to why preventing high blood sugar is important in the near-term — something that current coverage policies do not address). Adjust their blood glucose level to the opposite (bring the people with high blood sugars to normal; raise the normals to high — that way everyone would serve as their own control) and do it again. Then publish the data. Please, please, someone do this! (Hello, residents looking for research projects!) I have spent all day high, and have gotten nothing done other than this blog post, since my head feels like it is stuffed with cotton. I live in fear of coverage decisions that might cause more of my days to feel like this much of a waste. 

Catherine Price

Catherine Price (www.catherine-price.com) was diagnosed with Type 1 diabetes when she was 22 years old. She has written for publications including The Best American Science Catherine Price is a professional journalist who was diagnosed with Type 1 diabetes when she was 22 years old. Her work has been featured in publications including The Best American Science Writing, The New York Times, Popular Science, The Los Angeles Times, The San Francisco Chronicle, The Washington Post Magazine, Salon, Slate, Men’s Journal, Health Magazine, The Oprah Magazine, and Outside, among others. A graduate of Yale and UC Berkeley’s Graduate School of Journalism

View Author Blog

Catherine Price

Catherine Price was diagnosed with Type 1 diabetes when she was 22 years old. She has written for publications including The Best American Science Catherine Price is a professional journalist who was diagnosed with Type 1 diabetes when she was 22 years old. Her work has been featured in publications including The Best American Science Writing, The New York Times, Popular Science, The Los Angeles Times, The San Francisco Chronicle, The Washington Post Magazine, Salon, Slate, Men’s Journal, Health Magazine, The Oprah Magazine, and Outside, among others. A graduate of Yale and UC Berkeley’s Graduate School of Journalism