It's Up to You New York?
Have you heard this one? The NYC Board of Health is requiring labs to report A1c results of people with diabetes, supposedly in an effort to better understand how pwd's manage their disease. Patients cannot opt-out of the program (another report shows that the city is working on that). A1c results are not submitted anonymously. They are submitted along with your name so they can track you down at a later date and discuss your diabetes care with you.
Here are some of the low-lights on the NY Times report on this, for me:
"Diabetics must control their blood sugar levels to prevent serious complications from the disease. " - hmmm, not quite. Perhaps lessen, perhaps prevent. But since there are no guarantees, even with tight control, doesn't this statement seem a little harsh?
"...officials hope to use the information to reach out to local doctors and, in some cases, patients, to urge lifestyle changes and other measures to better control the disease." - can you imagine getting a call from the Board of Health, from the government, suggesting you get your diabetes self together? I can just imagine the sensitivity involved in that phone call.
NYCBoH: "Hello? Ms. Zuchercrank? this is the board of health calling about your diabetic control. As a diabetic, we think you should know that if you don't improve your control, you are at greater risk for kidney failure, blindness, amputations and other complications. We just thought you should know. "
Ms. Zuchercrank: "Um, well, I'm having trouble affording enough blood glucose strips, and my pump broke down and I can't afford the co-pay on a replacement. Can you help me get more strips and a new pump?"
NYCBoH:"Well, no, but we're going to call you every 3 months to remind you what a lousy job you are doing."
I've heard the arguments in favor of such data collection and am unimpressed. I cannot get beyond the privacy concerns (sorry, I don't buy that the information will be kept from insurers) and I'd much rather see these kinds of resources thrown behind physicians and CDE's working so hard to encourage 'lifestyle changes and other measures'.
I think this just might be the boost that the home A1c industry is looking for, and if I lived in NYC I'd be scoping out suburban diabetes care right about now.
http://www.nytimes.com/2005/12/15/nyregion/15diabetes.html
posted by Kassie @ 7:32 PM
10 comments
10 Comments:
I've been mulling this since August, when I first read about the proposal. Made me not want to move to NY. (The lure of Mr. Brooklyn happily proved to be the stronger force.)
Even four months later, this makes me feel so angry and tired that I can't even begin to put together a coherent sentence. Fortunately you've done that for me with this articulate, incisive post.
One can supposedly elect to opt out of the reporting program, but of course details on how this might be undertaken are not yet available...
How about checking on doctors to make sure they're giving their patients the info they need to manage their diabetes properly.
How about, instead of spending money calling diabetics, they use that money to buy supplies for diabetics who can't afford them.
Do you know how much money is going to be spent gathering the A1C information, paying people to enter the data, type out reports, paying people to call diabetics who aren't "complying", etc, etc.
Ugh.
According to Newsday.com, Dr. Thomas Frieden (NYC Health Commissioner) said "people skittish about their privacy will be allowed to opt out of the program. Details on how that process would work, however, are still being developed, city officials said. "
http://www.newsday.com/news/local/longisland/ny-bc-ny--trackingdiabetes1214dec14,0,1330435.story?coll=ny-main-tabheads3
I can't even begin to tell you how much this pisses me off. Someone should start a letter-writing campaign to the NYC health department, saying exactly what Shannon said up there. She's hit the nail on the head.
your in pissed-offed-ness
julia
Excellent points. I have vented further over at Pumplandia.
Ok - this is my very first blog "comment." I find this appalling. I'm a new PWD and so happy that I don't live in NYC. I so agree w/ Shannon, the money would be better spent to help those who cannot pay for supplies, doctor visits, etc...
Thank you for posting this information!
Colleen
Hey Kassie,
I read about this a while ago on this blog:
http://enrevanche.blogspot.com/2005/07/big-brother-is-watching-your-blood.html
Shocking, isn't it? Read his "NONE OF YOUR DAMN BUSINESS" post; he nails it.
Nice job on the blog here
- AmyT
I am a New Yorker and have already been faced some privacy issues concerning the tracking. The insurance company has been calling me every week about my diabetes manangement and everyone in my house has been told to not answer or give me the phone. I get letters every month telling me where to go for diabetes ed and where to go if i need a doctor. It has become a real pain already and if it gets approved forget about the new yorkers they are going to ballistic. Me included, i dont need anyone telling me what to do, i know what to do..and if they looked at their records they would know i am a good little diabetic and do everything i am supposed to.
As a former New Yorker (Upper West Sider) -- I find this very interesting. Two reasons:
Mayor Mike Bloomberg is a noted benefactor for the arts/health and I have it from a reliable source that he has given $$$money in support of diabetes research.
Perhaps someone living in NYC might give City Hall a call, and do a little digging...just a thought.
Would also like to hear from the doctors who were on the Task force for this programme - their perspective could be illuminating. While this may not be the right approach, perhaps diabetes is a HUGE health care crisis (financial burden)to the city and they had to do something about it.
I found this:
"In East Harlem, 38 percent of children are born into poverty; on the Upper East Side, just five percent. East Harlem has the highest incidence of obesity and diabetes in the City; the Upper East Side has the lowest."
(http://www.gothamgazette.com/article/socialservices/20051012/15/1615)
I have been to the Hospital in Harlem - it is alarming.
Would love to be back in NYC to research this--can someone else?
Elizabeth
I'd definately like to hear physicians' perspective on this, since they, too, will get calls from the Board of Health.
You are correct, it is a huge health issue.
But that brings up another point, is the Board of Health going to call smokers? Why not require physicians to report everyone with a BMI over a certain level?
I guess my mind just goes straight to scary on this one.
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