December 30, 2007

Psychological Whipping Boy

Type 1 isn't easy.

It is juggling daily, activity, checking, eating, bolusing and activity. You want a day off, you want a holiday off. You don't get it. Our holidays started with a trip to the endo and our A1C were up. Not bad 7.5 but still both were up.

Humbug.

To a large extent we take life a little less intensely than a lot of other T1 families. We eat what the holidays offer and try to bolus around it. We don't use scales. We try to have normal lives. Still it is a lot of work and you get the feeling that more intensity may be needed.

We expected Delaney's to be up. She has been working though some basal rate changes. It is that growing thing. We still need to work out some Delaney's overnight numbers but we are making progress. Connor's number was a bit of a surprise but to be honest his attention was on being in a community theater play and trying out for the school play. He says he needs to test more at school and probably back stage too. What is really important is he is still managing his diabetes almost completely autonomously.

We need to bring both of their overnight numbers back into tighter control. CGM would be such a great tool for this. Even if it was only used overnight. Plug'm in, put'm to bed, think about it in the morning when your brain works.

I wish the insurance company got that. CGM will make trend spotting better. We will do it more if we don't have to get up every 2 hours for a few weeks to spot a trend make a change and check to see the change had the desired results fine tune, lather, rinse repeat.

OK I get that insurance companies are there to not pay for health care. They are about actuarial expectations and minimal payouts. We, the patients, are NOT their customer. Their customer is the company who pays for the insurance and that company and the insurance company are all about low costs. Care costs and neither the insurance company or their client have care as a priority.

What I still don't get is why the ADA, in the person of Richard Kahn, is anti CGM. But to be honest, we the people with T1 are not the ADA primary market either. ADA is a big self servicing special interest group. It is more about keeping itself healthy and cash flowing so that it can pay huge amounts to its executive leadership (AKA Kahn.) An executive leadership that are more interested in big deals with big companies (like soda makers) to move big money around to make the big compensation look small than caring about individual members.

I have been trying to get past my anger at Mr Kahn's anti diabetes technology comments of a few months ago. As you can see I have made little progress. Why little progress? - Well because I have to get up at night and do basal testing to properly manage insulin pumps. CGMs would do that while I sleep.

Mr. Kahn is on record as thinking that CGM, pumps, and even strips in most cases of diabetes (he doesn't often distinguish T1 from T2) strips are a waste of resources. He says more testing needs to be done, so presumably funds should flow from funding CGMs, pumps and meters for individual people with diabetes to ADA to do the test they are not doing now with the money they have now, inflate the ADA budget. His already generous compensation package* would naturally rise with the tide.

I have no doubt that Mr. Kahn is a capable caring man. That and he is dead wrong about technology and type 1. He is also a voice that the insurance companies will hear and cite as a reason to choose not to fund CGMs for clients. The only choice I have is to not renew my membership and make a case of others to do the same.

No technology is the panacea Mr Kahn seems to set as a bench mark, one that works without the operator paying attention. He is right BG checks without coaching on what to do about it is pointless. But the meter is only that, a meter. In the hands of someone striving for compliance it is a tool. It is equally pointless to hold back technology from those who will use it as part of a care program because the non compliant will not benefit from it without becoming compliant.

We would be left presumably with pee strips.

Stress tends to make me angry. A lack of sleep doesn't help either. We have two T1 kids and that is enough to generate more than a little stress. I would love not to have enemies in diabetes care. Not the school. Not the ADA. Not the food police. Not the Churches who will not admit the little diabetic children. Not the theme parks. Not the food places that don't have carb counts.

I understand part of this is that I am frustrated with the fact that type 1 is forever and since I can't strike out at it I can focus on the people who make type 1 harder.

Most of those groups like the ADA are self serving institutions no mater what the say about themselves. They take care of the institution first and serve a client base only after assuring the continuity of the institutional hierarchy. For the most part we are not in a position where service is a competitive advantage to the institution.

Yet part these are also whipping boys, a place to focus the frustration when type 1 becomes overwhelming. I am sure part of the deal and it is probably not a healthy thing.

*Mr Kahn's generous compensation package (see page 70 of this .pdf)

3 comments:

Jonah said...

Cite, not site.
The ADA should be run by diabetics.

Brensdad said...

You might be interested to see how poorly the ADA ranks among charities in terms of efficiency.

http://www.forbes.com/lists/2005/14/CH0005.html

Bennet said...

Thanks for the edit Jonah. You should see my raw drafts. They are really bad. I can't spell my own name.

My renewal came in th email today. I love Crystal Jackson at ADA she is brilliant and does great work for kids and schools but I can't get over the top dogs.