As I read this article by Riva Greenberg in the Huffington Post I became very angry. That state of affairs in the basic technology that I use to manage my diabetes is appalling.
So while manufacturers keep adding bells and whistles to meters, and we’re on the launch pad for an artificial pancreas — where accuracy will be even more critical — why don’t I have a meter that gives me an accurate reading of my blood sugar?
I didn’t attend the 72nd American Diabetes Association scientific session but I know several people from the DOC who did. I was able to catch up and talk to a few of them at a meetup in Love park on the Sunday before the sessions ended. I got to a moment to talk to Kelly Rawlings Editorial Director or Diabetes Forecast about a rant blog posting that I had been working on but was too afraid to post. She suggested I post it and voice my frustrations. I’m been waiting for the right time. Here it is.
There will be no diabetes cure in my life time
I have been meaning to write this blog post for quite some time. I’ve held off writing it because I didn’t have my thoughts organized. At least that’s what I told myself. I think I’ve held off writing it because the tone is negative and may be offensive to some.
I’ve had type one (LADA) diabetes about six years ago. That’s about as long as my nephew’s been alive and half my daughters age. Not a long time but still too long. During the time I have had diabetes I’ve read articles — some historical and some more recent — suggesting that a cure was in the future. I remember reading similar articles when I was diagnosed. The future is apparently further than six years.
I am sure that there are people alive today who have heard something similar their entire life. For some people the future has been 20 years, for others 40 years. So future is starting to look like maybe something beyond a 100 years.
In the mean time, I’m being asked to help find the cure by donating to or fundraising for organizations who fund research towards a cure or directly to organizations working on a cure. Any day now, “We’ll have a cure”. Shut up! I’m tired of hearing it.
I’m not one of those who believe the big pharma companies and doctors are involved in some conspiracy to suppress research toward a cure because it would affect their business. I don’t think that if we raised more money to fund research — why do Americans believe that throwing more money at a problem produces solutions? — we’d have a cure sooner.
No. I think we don’t have a cure today because the problem is difficult. The disease is complicated. I wish someone with influence would just come out and say the truth (my truth?); the truth is we have a long way to go before there is a cure. This endless cycle of “hope mongering” is exhausting.
I’m tired of year after year of fund raising with no f**king end in sight. Waltz out the “cute doe eyed kids” to tug at heart strings (not mine) and send the teens and pre-teens off to talk to congress. Get some politicians to call press releases and make resolutions. Let’s get the hype machine going. Yahoo!!!
Look I don’t give a shit. Is the four year old with type 1 diabetes going to send me a note of encouragement on twitter or Facebook or TuDiabetes.org just when I need one? Is the teenager with Type 1 diabetes going to hang out with me at the local bar over a pint and listen while I rant - like I’m doing now - about how much I hate the three,four,five (six!!!) times a day routine of swab-test-inject? No! So stop telling me about them.
I know this tirade sounds negative. It is. That’s the mental space I’m in right with this disease. I don’t want to raise money towards a better, way in the distance future. I’ll leave that to the people with kids who have diabetes. This year, I’m going to donate my money to organizations that make a difference in my life today.
That’s my decision right now. In the mean time, I’m off to have another beer and read about the new fangled gadgets for people with diabetes that will be available “any day now”.