[PHNUTR-L] Mandatory Reporting of A1C in New York City: Violation
Kathrynne Holden, MS, RD
fivestar at nutritionucanlivewith.com
Tue Jun 20 10:22:54 PDT 2006
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A1C in New York City
Zachary T. Bloomgarden, MD Mount Sinai Medical School
Mary Ann Banerji, MD, State University of New York Health Science Center
at Brooklyn and Kings County Hospital, Brooklyn, New York, discussed the
recent initiative for mandatory reporting of glycated hemoglobin (A1C)
in New York City. She noted that 13% of adults in New York City have
diabetes (approximately 550,000 diagnosed and 250,000 undiagnosed) -- a
rate nearly one third higher than the national rate. Diabetes is the
fifth leading cause of death in New York City.
New York City may be at particularly high risk for a continuing
epidemic. The poverty rate is 20.3%, which is much higher than the
national rate of 12.7%, and there are particularly high obesity rates in
poor areas, such as the South Bronx and East Harlem. The city has a
growing Hispanic population, a group that is nearly twice as likely to
develop diabetes as white non-Hispanics; a growing Asian population, a
group that is at risk for diabetes at a much lower body weight than
other ethnic groups; and large numbers of African Americans and
immigrants from the former Soviet Union, 2 groups that are also at
particularly high risk for diabetes.
A 1% decline in A1C reduces microvascular disease by 20% to 30%, but
in New York City, as in the rest of the United States, only one third of
persons with diabetes achieve A1C goals; 36% achieve blood pressure
goals; and few achieve multiple therapeutic goals. These discouraging
numbers lead to the question, "How are we to deal with this chronic
disease?" Dr. Banerji suggested that "an informed and activated patient"
is needed, in combination with a coordinated healthcare system. However,
she acknowledged that "we all know this rarely happens." She attributed
this failure to rushed practitioners, a lack of coordinated care and
active follow-up, and inadequate self-management training for patients.
Given that chronic diseases comprise more than two thirds of the disease
burden in New York City, Dr. Banerji noted that public health approaches
are underutilized. She suggested that by considering diabetes an
epidemic, we can develop public health strategies to prevent or reverse
obesity and physical inactivity with the goal of decreasing the
development of diabetes and its complications. She added that "without
surveillance, it is going to be very hard to tackle the problem."
Following several years of planning and public hearings that were held
in August 2005, a new law became effective on January 15, 2006 that
requires most laboratories to report the results of A1C tests to the New
York City Department of Health and Mental Hygiene. The New York City A1C
Registry (NYCAR) plans to develop "programs aimed at improving the
quality of care and quality of life among New Yorkers with diabetes
using the information in the registry." Potential registry-related
programs include providing clinicians and their patients with
information about A1C levels and guidance on diabetes management, either
by mail or telephone. Additional plans include ascertaining demographic
patterns of glycemic control, describing the emerging diabetes epidemic
in children, and developing feedback and support for patients. A pilot
intervention in the South Bronx involves 270 clinicians at 90 sites.
Disease registries link surveillance with monitoring and care. In New
York State there are registries for cancer, Alzheimer's disease,
congenital malformations, communicable diseases, lead poisoning, and
immunizations. NYCAR is different: It is the first use of a database to
collect information about persons with a disease that is neither
contagious nor caused by an environmental contaminant. Dr. Banerji noted
that there is a smaller version of a similar database, the Vermont
Diabetes Information System, which currently has information on 7348
persons, most of whom are white. Lipid goals have been achieved by
45% of this group, blood pressure goals by 25%, and A1C goals by 60%.
NYCAR "is not designed to be a punitive or a regulatory tool,"
emphasized Dr. Banerji. She stated that data will be strictly
confidential and will be available only to patients and providers.
Patients can opt out of receiving interventions or having their
providers receive information, but it is not anticipated that providers
will be given the option of not participating.
Diana Berger, MD, Medical Director of the New York City Diabetes
Prevention and Control Program, explained that, "We wanted to make sure
that this was more than just surveillance . . . [and] to design an
intervention that would have impact . . . on quality of life." She
realizes that there are questions about patient privacy issues, and that
"once you report data anywhere outside of the patient-doctor
relationship," there may be potential for unauthorized disclosure of
confidential information. "Diabetes is not a communicable disease," she
acknowledged, so some have questioned why the City should have access to
this information. She recognizes these concerns and the burden that the
program will place on laboratories, but believes that potential benefits
outweigh the risks.
Dr. Berger noted that to support the program, staff will be increased
from 2 to 18 people, and infrastructure will be enhanced, at an annual
cost of approximately $2.3 million, to which one must add the cost of
laboratory efforts. "We will do a cost-effectiveness analysis," Dr.
Berger said. One should note that public health efforts against
tuberculosis, which infected about 1000 New Yorkers last year, receive
$27 million annually and are supported by a staff of almost 400.
Currently, in-office A1C testing is exempt from reporting requirements,
as are home A1C tests. "We're not going to capture everyone . . .
[although] we estimate 95%." Dr. Berger recognized that "people with
diabetes do face discrimination" and that this requires "navigat[ing]
through some of these very difficult issues." Although one must applaud
the desire to improve outcomes, it is clear that this experiment will
need to be watched carefully.
Such caution was brought into focus when Shereen Arent, director of
legal advocacy at the American Diabetes Association (ADA), and Daniel L.
Lorber, MD, FACP, CDE, New York Hospital Queens, Flushing, New York,
discussed the role of healthcare professionals in ending discrimination
that is based on diabetes. They pointed out that workplace and school
discrimination can present insurmountable barriers to diabetes patients.
The ADA receives approximately 200 calls each month about discrimination
in places of employment, schools, daycare institutions, public
situations, and correctional institutions. Dr. Lorber pointed out that
the approach of the ADA is to "educate, negotiate, litigate, and
legislate," and physicians play an important role in all of these
activities. Dr. Lorber described the situation of one of his patients, a
firefighter with type 1 diabetes who uses an insulin pump. In the
aftermath of 9/11, he spent 3 days working at Ground Zero, which would
not have been possible if the ADA had not helped negotiate an agreement
with the National Fire Protection Agency to change rules for
firefighters with diabetes. Not everyone with diabetes can do
everything, but there must be individual assessment rather than blanket
bans in employment and in schools. Achieving justice often requires a
team of physicians, lawyers, and other professionals working together on
behalf of a person or group of persons with diabetes. The ADA is seeking
physicians and other healthcare professionals to participate in these
Supported by an independent educational grant from Amylin Pharmaceuticals.
1. An urban approach to the diabetes epidemic -- NY City's A1C
registry. Program and abstracts of the American Diabetes Association
66th Scientific Sessions; June 9-13, 2006; Washington, DC.
2. Gaede P, Vedel P, Larsen N, Jensen GV, Parving HH, Pederson O.
Multifactorial intervention and cardiovascular disease in patients with
type 2 diabetes. N Engl J Med. 2003;348:383-393. Abstract
3. Saydah SH, Fradkin J, Cowie CC. Poor control of risk factors for
vascular disease among adults with previously diagnosed diabetes. JAMA.
4. The NYC Hemoglobin A1C Registry (NYCAR): Diabetes Prevention and
Control Program. Available at:
Accessed June 12, 2006.
5. MacLean CD, Littenberg B, Gagnon M, Reardon M, Turner PD, Jordan
C. The Vermont Diabetes Information System (VDIS): study design and
subject recruitment for a cluster randomized trial of a decision support
system in a regional sample of primary care practices. Clin Trials.
6. Kleinfield NR. Diabetes and its awful toll quietly emerges as a
crisis. New York Times. June 11, 2006. Accessed at:
Accessed June 12, 2006.
Kathrynne Holden, MS, RD < fivestar at nutritionucanlivewith.com >
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