Well, its been a while since I posted anything on my blog, but the past month has been incredibly busy. Doing what, you may ask? Well, to give you some background, as you may have heard or read, on December 15, 2005, the New York City Department of Health and Mental Hygiene passed legislation to begin mandatory, involuntary tracking of glycosated hemoglobin values (better known as hemoglobin A1C values) for patients with diabetes who happen to live in NYC. At the heart of the issue is the fact that informed patient notice or consent is NOT provided ... in essence, the city is seizing patient's lab test results without providing notice that they are doing so. This is heavy-handed government at its worst!
For some background information, please see the following links:
- Notice of Intention to amend Article 13 of the NYC Health Code
- NYC Presentation: "Improving Diabetes Care for All New Yorkers"
- NYC wants to track 530,000 diabetics (includes lab info.)
- Amid privacy concerns, NYC collects lab data to reduce diabetes burden
- City Officials Aim to Track How Diabetics Manage Illness
- N.Y. Diabetes-Tracking Plan Draws Concern
- My Written Commentary on the Proposed A1C Tracking Plan
- ACLA written comments on the proposed NYC A1c tracking plan
- AAPS Statement on NYC A1C Tracking Plan
- NYC Notice of Adoption of amendments to Article 13 of the NYC Health Code
- New York City to Register, Monitor 500,000 Diabetics
- New York City Starts To Monitor Diabetics
- NEJM Editorial: Facing the Diabetes Epidemic - Mandatory Reporting of Glycosylated Hemoglobin Values in NYC
- NYC Shares Lab Results Without Consent
What does all of this mean? Well, the NYC effort is without a doubt constitutionally questionable. As a result, I have spent the better part of my spare time trying to pursue this legally. Ultimately, while a challenge on legal grounds has merit, the decision will be based on whether the ACLU decides to support the case, or whether an attorney will decide to defend the case pro bono. In the interim, I am pursuing the dissemination of relevant information on this topic. Most notably, only labs participating in the New York State Department of Health Electronic Clnical Laboratory Reporting System (ECLRS) are submitting data, meaning that patients can avoid including their test results by patronizing labs that are not ECLRS-enabled. I have also written to two separate departments at the NYS DOH asking to exercise my rights under the NY State Freedom of Information Law (FOIL) to obtain listings of all ECLRS-enabled labs in NYC and all other labs so this info can be shared with patients who wish to avoid having their test results seized. I have started a website at http://www.stopnyca1ctracking.org where this information will ultimately be made available.
Anyway, I will have more updates in the future. Be sure to check back for updates!