positive psychology for the chronically ill

(Update: I've been told to expect a few folks from DLife to come through. Hello! In case you're looking for some background on the subject I touched on below--aka how it is that "universal health care" doesn't cover type 1 diabetes treatment--you can read my post about the big gaping hole in the Canada Health Act or look at the Pins and Needles archive. Thanks for coming by.)

(Sorry about yesterday afternoon's posting goof-up. "Anti-" wasn't supposed to be published yet; I see it's shown up in feedreaders anyway. Sorry about that. It'll appear again--finished--probably in a few weeks.)

Marvin II is working just fine; Greg insists that it is the same Marvin, he's just had his consciousness downloaded into a new body. As a cyborg and BattleStar Galactica fan I like this idea. But I'm still going to call him Marvin II.

Every time I pull Marvin II out of my pocket for a test or a shot I wonder if the government of Ontario is finally going to realize that we live in a country with universal health care that is legally required to provide medically necessary treatments and services. Without insulin I die. It's hard to get more medically necessary than that--and yet, in Ontario to this point, if you are type 1 diabetic you are shit out of luck, so find a job with good health insurance and don't let go or you're screwed. (Until you get to 65 and then they help out a bit--but let's face it, a lot of type 1 diabetics, especially those without health insurance, don't make it much past 65 so it's not a whole lot of help.)

"Type 1 diabetes, previously known as insulin-dependent diabetes, typically occurs in childhood or adolescence and requires multiple daily injections of insulin for survival. The most common form of Type 1 diabetes is caused by auto-immune destruction of beta-cells, resulting in an inability of the pancreas to produce insulin. Type 1 diabetes may account for 5% to 10% of all diagnosed cases of diabetes(51).

"According to US data, the reduction in life expectancy seen in people with Type 1 diabetes is dependent on the age at diagnosis. At a minimum, life expectancy is shortened by 15 years. One study using life insurance records showed a reduction in life expectancy of 27 years in those diagnosed before age 15. A study of patients at the Joslin Clinic, a US clinic specializing in diabetes, found only a 16 to 17 year reduction in life expectancy for those diagnosed at ages 10 or 15. However, people who are treated at the Joslin Clinic would tend to be from wealthier families and would likely receive better medical care." From Diabetes in Canada Do you have any idea how much time I spend trying not to think about this?

Most type 1 diabetics I know have a passive-aggressive relationship with hope. You never look at it directly; it sits there in your peripheral vision, the potential for a cure. The first few years you were more careless. Doctors probably flamed this by telling you that a cure was imminent, that surely you wouldn't have to live with this forever, so when an article in the paper or a news bit on tv talked about new research that finally promises a cure for diabetes, you tuned in. You read up. You hoped. And then in a few days it fades away and you never hear about it again and once more it was just a preliminary study where the possible payoffs in terms of treatments for actual humans are a decade away at least if they ever get that far--if they don't run smack into the autoimmune response that gave you the disease in the first place--and it's like being diagnosed all over again. You're going to have to live with this thing for the rest of your life. You're going to spend a part of every day measuring and testing and counting and poking and bleeding and paying and thinking and worrying and wondering (and dissociating and avoiding and distracting and pretending). Eventually you learn that it hurts less to accept it and not to hope for a cure. From then on, when a newspaper article blares "CURE FOR TYPE 1 DIABETES, RESEARCH STUDY SAYS" or a talking head on TV is discussing how some white lab mice developed the ability to produce their own insulin, you turn the page or flip the channel. Don't hope.

Sometimes you forget how much you hate it, how big a part of your life it is--until you allow yourself to believe that a cure might come in your lifetime and imagine yourself living without it. When the daydream ends, it hurts.

I donate money to type 1 diabetes research projects but I scrupulously refuse to track or research or follow up on them in any way. I'll contribute, just don't remind me how far away from the end we really are, thank you very much. And don't ask me to think about what might happen if it works.

Apparently, this extends to the financials.

Let me break this down for any new readers in the audience:

Type 1 diabetes is an expensive disease. The basics are pricey enough: $75 for a vial of insulin that lasts me for about three months and would last a typical diabetic for several weeks (I am very sensitive to insulin, which is complicated in other ways but does at least mitigate the cost somewhat). $1 for each blood sugar test strip; you're supposed to use at least 4 each day, ideally eight, and sometimes more if you're sick or you're running high or low or doing basal tests; so assuming on average eight in a day, over a month that's $240 on its own. Now we add in the pump: $6000 for the unit itself. The cartridge that holds the insulin costs $10 and I need to change it about twice a month (again with the highly-sensitive bit: an average diabetic would need to change it more often). The infusion sites, where the insulin is injected under the skin, are at least $15 each and I go through about five each month. I should use more, but I frequently stretch them out to six days (it should be three) because they're so flipping expensive.

All together, that's approximately $350/month. To live. In a country with universal health care.

After my workplace insurance reimburses me, I'm still out about $70. If I didn't have to pay for pump supplies...

...I wouldn't squeeze an extra day or two out of sites that had begun to go bad because I was running out of new ones and didn't want to put another $400 on the credit card.

...I wouldn't have to choose jobs based on whether their health insurance policies cover insulin pumps and supplies, which I have done in the past.

...I wouldn't have to juggle when I order the supplies with when my credit card bill will be due and how long it takes to get paid back by the insurance company.

...I would still have to shell out $265/month for insulin and test strips, which is obscene (see: universal health care, above).

It's not a cure, but it sure would be a help and a significant change in my current lifestyle and priorities.

I have been telling myself for a week not to hope. It won't cover me. I am not poor enough, not sick enough, not young enough, not old enough, to have my medical necessities covered by the government in Canada. It sure would be nice to spend that money "stimulating the economy" as the pundits say, but the conditioned response is too strong. (Don't hope.)

Even if I didn't get coverage for my supplies now, wouldn't it be nice if I at least qualified for a new pump when the warranty is up for this one....

The article doesn't say anything about a means test. They don't say much of anything, actually, but maybe you don't have to be broke to qualify.

(Don't hope.)

I should call and find out before my appointment.

(God damn you. Don't hope.)

It's too late. If I find out I'm not going to qualify, I will be crushed.

Posted by Andrea at July 29, 2008 8:24 AM under Pins and Needles

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