[PHNUTR-L] Mandatory Reporting of A1C in New York City: Violation of Privacy?

[Kathrynne Holden, MS, RD]

Colleagues, the following is FYI and does not necessarily reflect my own
opinion. I have no further knowledge of the topic. If you do not wish to
receive these posts, set your email filter to filter out any messages
coming from   @nutritionucanlivewith.com    and the program will remove
anything coming from me.
---------------------------------------------------------
A1C in New York City
http://www.medscape.com/viewarticle/536133

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.[1] 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%,[2] 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.[3] 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."[4] 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.[5] 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.[6]

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 
efforts.

Supported by an independent educational grant from Amylin Pharmaceuticals.
References

    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. 
2004;291:335-342. Abstract
    4. The NYC Hemoglobin A1C Registry (NYCAR): Diabetes Prevention and 
Control Program. Available at: 
http://www.nyc.gov/html/doh/html/diabetes/diabetes-nycar.shtml#hcp 
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. 
2004;1:532-544.
    6. Kleinfield NR. Diabetes and its awful toll quietly emerges as a 
crisis. New York Times. June 11, 2006. Accessed at: 
http://www.nytimes.com/2006/01/09/nyregion/nyregionspecial5/09diabetes.html 
Accessed June 12, 2006.
-- 
Kathrynne Holden, MS, RD < fivestar at nutritionucanlivewith.com >
"Ask the Parkinson Dietitian"  http://www.parkinson.org/
"Eat well, stay well with Parkinson's disease"
"Parkinson's disease: Guidelines for Medical Nutrition Therapy"
http://www.nutritionucanlivewith.com/