Mandatory Registries for Diabetes Patients Aren't Worthwhile

In 2005, I wrote about the blatant invasion of privacy of with patients with diabetes' health records happening in New York City. Yours truly represented (see p. 49) the interests of people with diabetes at the 2005 public hearing on what was then a proposed registry, and I have remained outspoken on this issue. But thanks to a complete lack of representation from the representatives at the American Diabetes Association, and the American Civil Liberties Union who were handling the case until internal turmoil at the ACLU New York chapter resulted in a resignation of the woman handling the case, there has been little challenge or even media attention about the issue. Even fellow New Yorkers, never a group that keeps their opinions to themselves, expressed an inexplicable non-interest in the subject. In fact, there has been far more media interest in Google's plans for electronic health records. Canadian television interviewed me on the subject (see the interview below):




I also spoke to a newspaper in the U.K., but for whatever reason, the U.S. media continues to remain silent on the issue -- I guess they'd rather talk about Britney Spears' latest stupidity than report news.

It may come as a surprise, but people cannot opt out of this registry, although they may choose not to receive any correspondence consisting of weight loss and diet tips from the NYC Department of Health and Mental Hygiene. But their HbA1c records are still being seized even after opting out of that. There IS a legal basis for challenging the registry, based largely on New York State privacy laws which were passed in the 1980's to protect people who tested positive for HIV, but the same laws nevertheless require the Health Department to provide disclosure that their health information is being seized, something which is not currently happening today.

Since I work in the suburbs, I just have my bloodwork done there, which exempts me from having my results seized, but suburban residents -- even residents of other states like New Jersey and Connecticut who have labwork done in the city are being included, even though the law does not apply to them, a clear HIPAA violation if anyone wants to file a lawsuit! BTW, most of the major labs (Quest Diagnostics, LabCorp) which do the testing are physically based outside of New York (in New Jersey, as a matter-of-fact), and are therefore really under no legal obligation to comply with the NYC law, but they have decided to play nice and comply to keep the Department of Health off their backs.

Anyway, I had pretty much given up much hope on this issue until last week. Then, the April 28, 2008 edition of the medical journal Archives of Internal Medicine featured a barely-noticed submission which was written by two upstate New Yorkers, Paula Trief and Richard Ellison, who oppose mandated, involuntary and non-disclosed diabetes registries. The authors wrote that the involuntary (and non-disclosed) NYC registry won't work and could undermine the relationship between doctors and patients.

Their article, entitled "Mandated Diabetes Registries Will Not Benefit Persons With Diabetes" made some fairly convincing arguments about why such registries are unlikely to yield success. Naturally, NYC Health Commissioner Tom Frieden's personal friend, Benjamin Littenberg wrote a rebuttal in favor of the registry, conveniently overlooking the fact that the Vermont trial funded by the NIH which he headed required an opt-out provision, but the defense seems especially weak considering the registry has accomplished absolutely none of the objectives promised since being implemented 2 years ago.

The Wall Street Journal's health blog featured a post on this matter last week. I submitted my comments (naturally), and to my surprise, virtually all of the comments were in agreement with ME, not the NYC Department of Health and Mental Hygiene.

Interestingly, today's New York Times had an article about a continuing decline in the number of neighborhood supermarkets in NYC has made it harder for millions of New Yorkers to find fresh and affordable food within walking distance of their homes, according to a recent city study. Why, then, isn't the Department of Health and Mental Hygiene jumping all over that issue? I think perhaps its time to revisit this issue since its once again being debated in the public domain.