On April 6, the New York Times ran a front page article called “Even Small Medical Advances Can Mean Big Jumps in Bills.”
Good news for people with diabetes and advocates, right? We are always saying we wish people better understood type 1 diabetes (and as opposed to type 2 diabetes). Maybe a paper like the very widely read NYT can make more people aware.
But as I read the long article, it was apparent that the author just doesn’t get it, despite quoting patients, parents, and health professionals.
You can read the article for yourself (and in the response, which isn’t linked to in the original article, the editor suggests that those reacting to it negatively haven’t actually taken the time to read it for themselves and form their own opinions but are only incensed because they were egged on by groups such as the JDRF).
I just want to highlight a couple of places where I didn’t agree with the author’s logic.
“Since pumps are complicated to operate, young children cannot use them.”
Do you want to know what’s complicated? Multiple daily injections (MDI).
When using MDI as the form of diabetes management in type 1 diabetes, there is an incredible amount of math. Math, that when calculated incorrectly could literally kill your child. Math that has to be done for each and every morsel your child consumes and for each and every blood sugar that does not fall within the child’s acceptable range.
To imply that young children can’t use insulin pumps because they are complicated is faulty for two reasons. (1) Young children are not doing the math and giving themselves injections, that’s for sure. (2) If anything, the bolus calculation feature on many pumps allows children more autonomy at an earlier age because the pump does the math for them.
“While about one-third of Type 1 diabetics use pumps in the United States, that number is under 10 percent in Britain…The British government will not dispense these costly items unless a patient’s diabetes has proved uncontrollable using other methods.”
The article reminds us that “In Britain, each hospital negotiates for pumps for its patients, getting prices that are typically less than half those in the United States.” It is true that the health care systems in many European countries differ from ours and thus pricing and patient out-of-pocket cost can differ.
The quote in it’s entirety is “Even when governments negotiate prices and foot the bill, patients may feel the rising price of diabetes care in other ways: While about one-third of Type 1 diabetics use pumps in the United States, that number is under 10 percent in Britain. What is the right number? Since pumps are complicated to operate, young children cannot use them, and some patients prefer syringes that operate like pens because they do not like having pumps attached.”
But a pump being “complicated to use by children” (which they are not), doesn’t seem like a valid reason for less access to insulin pumps in the UK.
I think lower rates of pump use in UK is because they don’t have the same choices. I think perhaps the hospitals (and/or national health care) dictate their choices. I hear lots of UK parents wishing they could get their kids on a pump.
“Denise Lombard, an insurance broker in Oakland, Calif., whose 16-year-old daughter, Gabrielle Woodland, has diabetes, said many policies contained “not one word about how they are going to cover insulin and supplies.” Gabrielle’s current policy does not cover glucagon, a hormone injection — which retails at $272.72 a dose — that families of diabetic children are told to stock should they faint because their blood sugar drops too low.”
What this article doesn’t mention is that this costly glucagon could actually save a child’s life. It’s not just fainting, a term which I feel minimizes the potential effect of a severe hypoglycemia. People with type 1 diabetes who have a severe low blood sugar can become unconscious and/or have a seizure. Every minute of being unconscious or seizing can damage brain cells. If not treated, this severe hypoglycemia can kill.
Death. A death that could be prevented by a person trained to use the glucagon kit. And it’s not enough to say that calling 911 is enough.
Our insurance covers glucagon. The copay is a little steep, but I refill it each time one of our kits expires. I have a stash of expired, unused kits (which I use to train school staff and caregivers). But I keep buying them and we have them stashed at school and at home because you just never know. It could save her life someday and I wouldn’t want that to be the reason.
I hate the thought of parents not purchasing them because in so many years they’ve never had to use it. I always tell school staff that it’s like insurance, we don’t anticipate that we’ll need to use it, but we need to all know how (and when) for that instance when we do need to use it on her.
Also of note, which reinforces the author’s failure to really research the topic thoroughly is her calling glucagon “concentrated sugar water” in the article when it was first published.
(Interestingly, our insurance covers epipens for allergic reactions at 100%. I can get two 2-packs of epipens for $0 copay and fill it as often as needed. And both EpiPen and AuviQ have copay coupons that patients can use to take their copay down to $0. Both epipens and glucagon can save lives. I wonder why there is better accessibility to epipens than to glucagon.)
My Thoughts On Quality Of Life
I kind of felt like it was saying “look at how much these (entitled) diabetics are costing us!” but missed the important point that these “gadgets” can improve the quality of life for those living with type 1 diabetes.
I think the pump and CGM improve my daughter’s quality of life. Both in the long-term and in the day-to-day management of this chronic medical condition, which, like no other, requires patients to make dozens of decisions each day to literally keep themselves alive.
The out-of-pocket stinks, but it’s worth it to us.
My daughter heard a radio commercial the other day about a study at a local hospital for people with diabetes who have kidney disease. She asked if that was type 1 or type 2. I said I didn’t know which. She asked, “But am I going to get kidney disease?” I said, “Do you take care of yourself and your diabetes? I don’t think you’ll get it if you take care of yourself.”
Look at the ever increasing life expectancy of people with type 1. This isn’t because we are stuck with the standards and treatments of 80 years ago or even 20 years ago. It’s because there are better insulins, frequent blood sugar testing, and yes, those fancy insulin pumps and CGM’s.
I have no doubt that my daughter will live a long, healthy, happy life and it’s because there are great options. And we look forward to even more improvements and options in the coming decades.
(And as a side note, I think my daughter might outlive many of her peers without diabetes because she DOES take care of herself.)
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