In one of my classes we were discussing wellness programs and the like and my professor mentioned that there is a mandatory A1c registry for people who live in NYC. You can find info here: http://www.nyc.gov/html/doh/html/diabetes/diabetes-nycar.shtml
Doctors must report the A1C of their diabetic patients to the city Department of Public Health. If patients have an A1C over 9, the city will send them a letter and try to get them into programs that focus on weight loss, nutrition, exercise, etc. You can not exclude your self from the Registry, but you can choose to not get letters from the city if your A1C is too high.
We had a short discussion in class as time ran out. I didn’t comment and I didn’t share my status as a person w/ D. But we were very concerned about the Big Brother aspect of this, but at the same time, if there are barriers to good diabetes management for many of these patients, and the City then finds out that one one exercises because the park is too dangerous and then tries to get the drug dealers out, is that necessarily a bad thing? Also, many of these patients are on Medicaid (govt insurance for low-income people), which was why they started the program, to try to intervene before costs got out of control? Should it matter that more minority and poor populations are being targeted to improve their health?
I’d love to hear what other PWD think, especially if you live in NYC.
I don’t think it sounds all that big-brother-ish.
This link shows how the data is used; it looks like it’s more of a taxpayer funded initiative to give support services to providers, rather than an intrusion into the doctor-patient relationship:
http://www.nyc.gov/html/doh/downloads/pdf/diabetes/diabetes-a1c-reg-serv.pdf
It even says that the letters can be sent out on the provider’s letterhead (e.g. the hospital or clinic letterhead).
It also aggregates data by the facility or provider. I think it’s good for the health department, the hospitals, the HMO’s, the physicians, etc. to know that, while Facility A has average A1C’s for their type 2’s of 9.345, Facility B is kicking butt with an average of 6.721. That would be good to know, because you could look to see why one facility has a better average: different demographic? better diabetes programs, classes, etc? less restrictive formulary? more folks on insulin? what?
I had a doctor who told me how “great” I was doing “compared to my other patients” after two A1C’s in the 10’s (10.8, 10.7) – so I fired her and have a new doctor. I thought her assessment was…nuts. I think someone should be checking up on people like her and saying, “Dr. Crazy-Eyes, your patients’ average A1C’s are running about 50% higher than everyone else in town. What’s up?”
The type 2 diabetes epidemic is only getting worse. I think public education via the health department sounds like a good way to encourage people to get their A1C tested and get it down into the safe range.
I wouldn’t mind a letter saying, “Hey, it’s been ten months since your last test; please call your provider at this number to schedule a follow-up test today.”
As a woman who had a questionable mammogram result a few years ago (it’s fine now), I got lots of reminder letters over the two years we were watching things more closely: “Hey, it’s time to schedule your follow-up mammogram.”, “OK, now it’s time to schedule your bilateral screening mammogram again.” Etc. In fact, a very precise protocol of tests, follow-up letters, phone calls and registered letters with return receipts is required by law for people with bad mammograms or even questionable mammograms. It think this is a good thing; people with cancer don’t end up walking around with a false sense of security because one letter went astray in the mail.
Ditto for diabetics. No one should be walking around thinking, “I must be fine. No one ever contacted me to tell me otherwise.” while they have an A1C of 10 or 13 or 15!!!
Luckily I longer live in NY. When I was dx’d 4 years ago I had an HbA1c of 10 and fasting of 240. I was not overweight, very muscular, spent 2-3 hours in the gym and was a vegan. I ate according to the Food Pyramid that the Government puts out. I ate high carb, low fat with tons of fruits, veggies and whole grains. Nothing white ever touched my lips. Whole Wheat bread, cereal, pasta, quinoa, bulgar, brown rice and lots of tofu. No butter, eggs or meat. My cholesterol was the highest it has ever been. I think the assumption here is if you are diabetic it is all your fault because of bad eating and exercise habits. I remember my first and only meeting with my CDE she was shocked at how healthy I ate. She was recommending yogurt to me and I suggested to her Greek yogurt for 7 carbs per cup. She had never heard of it. This is definitely way too much Big Brother.
This gives me the creeps. Is there a similar list for people with HIV? Breast, prostate, colon or bladder cancer?
From the link I posted: “If you are interested in receiving A1C Registry services, call 212-788-4125 and a Diabetes Program staff member will work closely with you and your team to go through the steps to activate services for your facility.”
It’s a service for providers; they’re not exactly sending black helicopters to people’s houses. 
At my house, the road to hell is paved with chocolate, but perhaps that’s just me?
I’m not a fan of the govt knowing what my A1C is and worry about where that info will go. I have a concern that insurers and future emlpoyers may find it. paranoid I know but stranger things have happened.
also why the half assed effort - they send a letter that’s it? any follow up and how’d losing weight going to help T1s? if they are going to help then they need to step it up a couple notches
There is actually a ton of research going on right now looking at how registry based prompts can help people with chronic conditions and other issues (asthma, IBD, diabetes, not up-to-date on vaccinations). Part of it involves prompting the patient and part of it involves prompting the clinician to do the right thing. The registry may be supported by government funds, but generally practices who participate send aggragate numbers to see how they are doing compared to other practices. The ‘registry’ organization has worked to perfect things like letters and education materials and which segments of the population they should go to (e.g, those with an A1C in this range vs those with an A1C in another range) that practices can then send or offer to the patient who falls into a certain segment.
Sounds not too different than the tabs my health insurer keeps on me and my labs.
They send me all sorts of health information even when my A1C is halfway decent 
They make sure I’m getting all the checkups (endo, eye doc, etc.) regularly.
And when it’s time to renew a prescription for “essentials” (e.g. insulin) I get postcards and phone cards reminding me if I haven’t already refilled it.
If I put on my tinfoil hat I worry about them going nutso with this information and me locking myself out of the health care system out of fear, but for a diabetic a self-imposed exile from the health care system is not very bright. Been there, done that.
I could get all big-brotherish and in a huff over this, but when tudiabetes is running its own A1C registry for this self-selected group (aka “tuAnalyze”), I have a hard time complaining when liberal service-oriented government does it as well.
I am pretty creeped out by this as well. I was around for the debates when the HIV/AIDS epidemic was at its most virulent in the 80s. My reaction back then was to be extremely protective of a population many of whom as gay men and IV drug abusers were already among the most discriminated against groups in the country. But there was also the mitigating factors of spreading the infection. I guess this whole issue was first looked at by Public Health and Epidemiological professionals when reporting of STDs became mandatory.
IMHO diabetes has none of these polarizing factors: Contagion isn’t an issue and it is an equal opportunity afflictor. So what it comes down to is what I feel strongly should be an individual choice. I have the right to treat my condition (or not do so) in whatever manner I wish. I don’t even care for it when Medco (my mail order pharmacy) puts “Zoe you have met 3 of your diabetes goals” on the homepage. Who the hell are they to tell me what my diabetes goals are! (Even ignoring the fact that they are mostly Type 2 goals and I’m type 1!)
I tried to read through some responses before I posted my own to make sure I didn’t have a kneejerk reaction. It does sound like much of the goal of this has to do with monitoring providers. In this era of rising costs and uncertain health care reform in the U.S. I think holding providers to standards is all good. I’m a middle aged teacher living in California, but when I hear about efforts to establish ongoing qualifications for teachers and professors I think it is good. If a professor gets tenure in their 30s and is now 60, burnt out and unwilling to learn new teaching ideas he should be motivated to take continuing education or to meet performance standards - some type of evaluator, not just coast into retirement on his lifelong tenure.
Like many things, registries are a tool that can be used for good or for ill, and I would want a lot of safeguards and a clear mission built in and stated. But bottom line is I don’t like this greater and greater tendency for organizations and governments to control aspects of my private life. Having lived for two years in a country where I could buy medications and get tests without doctor involvement, I know that a government does not have to infantalize its citizens. Those boundary areas can be grey, and the old “slippery slope” is always lurking. You start with lower insurance rates for people with a certain BMI, and then it’s an easy jump to not hiring the overweight because they will drive up the group insurance rate. Public Information campaigns are good, though even they can ride that line I like to call “positive brainwashing”. But having an impersonal entity monitoring and intervening in my medical care? No thanks.
Although I too would have Big Brother concerns, I can also see benefits.
Exploding health care costs are at the center of many of our problems in areas like the budget and competitiveness. We spend a higher percentage of GDP than countries that cover everyone and yet cover fewer and fewer people every year.
By comparing results between various physicians, best practices can be identified and publicized to the broader medical community. We all know T2s who don’t take their condition seriously enough. Perhaps a little prodding would help at least some of them gain better control. T1s with an A1C over 9 would probably also benefit from more help.
Diabetes and it’s resulting complications are a major contributor to rising costs, If costs could be controlled perhaps more could be covered in a type of virtuous circle.
yeah but you can opt out of Tuanalyze the original poster noted that you can’t opt out