It has taken me awhile to decide how I want to respond to the article "Even Small Medical Advances Can Mean Big Jumps in Bills" published by the New York Times about a week ago. The article as a whole addresses some important issues relating to the high cost (in the U.S.) of chronic medical conditions like type 1 diabetes. While the article addresses several underlying issues that contribute to the high costs (medical industry being business/profit oriented, high cost of research, pumps/meters having proprietary accessories, planned obsolescence), it still leaves the reader with an overall feeling that the patient is a contributing factor to driving up the costs - that patients are seeking out frivolous equipment that the entire country has to foot the bill for.
Here are a few items that I would have liked to see the article address that it did not.
1. We are informed of what treatment options are likely best for us medically and based on our lifestyle. From there, most of us make a choice based on what we think is likely to give us the best overall outcome with the fewest complications (that might lead to additional medical expenses, loss of work/income, eventual need for disability income). Patients are usually not made aware of the total cost of a treatment up front. They might be quoted an estimated amount that they will have to pay out of pocket, but likely won't see what was billed to insurance until receiving an Explanation of Benefits Statement after the treatment (or device) was already billed for. This means that there isn't the same opportunity for comparison shopping that there is for other big purchases. I don't chose to wear an insulin pump and cgm just because I can - or because my insurance covers it - I use them because they keep me alive - hardly frivolous.
2. The "cost" of medical items is generally inflated with the understanding that insurance companies are only going to allow for a fraction of the billed amount. This makes it impossible to determine what the true cost of a prescription drug or medial device is since the out of pocket cost is so significantly marked up (profit is clearly still gained from the much smaller amounts that insurance companies allow and cover). This system seems to only the costs more difficult to cover for the uninsured, and also adds another layer of opaqueness to price transparency in the medical industry.
3. The article does not address at all the role that the FDA plays in complicating the medical device industry. While planned obsolescence is a business practice that has been profitable for companies like Apple, and it may very well be a part of the business model for pump and meter manufacturers, the FDA also slows down the release of devices, to the point that by the time one model is finally released for sale in the U.S., the next model has already been developed. In addition, there is no generic insulin because it is a biological drug, and until recently the FDA had not addressed regulation of biosimilar drugs.
And then there were a few items in the article that left me completely bothered.
1. This quote: "People don’t need a meter that talks to them. There’s an incredible waste of money." DR. JOEL ZONSZEIN, director of the Clinical Diabetes Center at Montefiore Medical Center
Not everyone needs a wheel chair ramp, but we have them. And guess what? People who aren't in wheel chairs benefit from them. Ever used one for a stroller or a bike? That isn't why they are required to be there, but the ramps sure make it easier! How exactly is someone who is blind or has low vision supposed to use a blood glucose meter effectively if it doesn't talk to them? I'm not an expert (only someone who actually has the disease), but I'm pretty certain that vision complications can occur with diabetes. Or, as the article stated, diabetics are living longer, and generally as people age, their vision declines. Should people just stop testing once their vision goes? This article shows a comparison of talking meters including cost https://nfb.org/images/nfb/publications/vod/vod_24_1/vodwin0910.htm So $16.79 is too high of a cost for it to be worth it for a diabetic with a vision problem to be able to monitor their blood sugar? I can't imagine that it is more expensive than the cost of covering the complications and related expenses if the person's blood glucose levels are no longer well controlled due to not being able to monitor.
2. And then this quote. "Most of the increase is attributable to Type 2 diabetes patients, whom manufacturers are encouraging to try insulin treatment and glucose monitoring, even though that is rarely medically required."
Again, not claiming to be an expert here (I have t1, not t2, so what could I possibly know right?) but if by "glucose monitoring" they are referring to testing and monitoring blood glucose levels, this is absolutely medically necessary for people with t2. Perhaps their doctor has not recommended that they test as often as I do (recommended by my doctor - not just for fun), but I am certain that testing is a part of their recommended treatment plan - whether it be multiple times a day, daily, or weekly. If the author is actually meaning use of a continuous glucose monitor, then perhaps she should be more specific in her wording. I was never contacted by a manufacturer prior to making my decision (along with my doctor) about use of a cgm. Perhaps the mailing list and phone list for that sort of soliciting only has patients with type 2 diabetes, but despite all the junk mail and robo calls I get, none are trying to sell me additional diabetes bling to wear/use just for fun. A cgm and insulin can't be obtained without a prescription, so perhaps if the manufacturers are influencing people to make decisions that are medially unnecessary, we need to address the doctors that are writing the prescriptions and what motivations they may have if they don't believe the meds/devices are needed.
My final bit of irritation came from a response to the DOC's reaction to the article. I have no issues with points 1, 2, or 4. But point 3 - the assumption that the strong opinions this article evoked were influenced by receiving mail from the JDRF I find ridiculous. Despite having participated in events that benefit the JDRF, and being someone w/ t1d, I managed to not make it on to this mailing list either. Unless of course this email was filtered to my junk mail, where it would have sat without me reading it anyway. The idea that I could be swayed so easily be receiving an email telling me what to think about a particular article is frustrating. Diabetes affects my pancreas, not my ability to read and develop an informed opinion on my own.