New York City is getting healthier, with fewer people smoking, fewer new cases of HIV, even fewer people dying; the city’s death rate recently hit a historic low. But there is one major health problem that is getting worse in the city -- diabetes. And, New York City Health Commissioner Thomas Frieden said recently, “it’s getting worse much more quickly than anyone could have imagined.”
That is why the Bloomberg administration is taking some unprecedented steps to curb what the mayor calls “a vicious silent killer.”
The highlight of the administration's efforts so far has been the establishment of a citywide registry (a collection of medical data) to give officials a better picture of the city’s epidemic. This is the first attempt by an American city to track a chronic disease. While the registry will not create a direct medical benefit to many patients now, health experts are hopeful that it will serve as the foundation for a comprehensive approach to dealing with diabetes in New York City.
“If the city’s information system works well and patients’ confidentiality is maintained, the registry initiative could be a first step towards other effective -– and no doubt more costly –- interventions,” wrote Robert Steinbrook in the New England Journal of Medicine.
What Is Diabetes?
Type 2 diabetes is a disease that keeps the body from breaking down sugars in food correctly. (There is a type 1 diabetes, but it is rare, and generally when people refer to diabetes they are speaking about type 2). Genetics play a role in whether a person develops diabetes; so does obesity. Blacks, Latinos, and Asians are both more susceptible to the disease genetically and, in New York, more likely to be overweight than whites, so racial minorities and new immigrants suffer disproportionately from diabetes here, as a recent series on diabetes in the New York Times made clear.
The disease is chronic and incurable, but it is manageable. Diabetics must watch their blood sugar levels, and adjust their diets accordingly. If they do not keep these levels under control, diabetics can lose limbs, or go blind. Their kidneys fail, and they have heart attacks and strokes.
As America gets fatter, diabetes rates are skyrocketing nationwide, with serious consequences. The total economic cost of the disease nationwide in 2002 was $132 billion, with 11 percent of national health care expenditures dedicated to the disease.
But if diabetes is hitting the entire country hard, New York City is in the worst shape: A greater percentage of New Yorkers are already affected by the disease, and the number of new cases here is rising more quickly than elsewhere. There are about 530,000 documented cases of diabetes in New York City, and an estimated 265,000 New Yorkers who have the disease but do not know it. In 2004, 1,734 New Yorkers died of diabetes, making it the fifth-leading cause of death in the city. But because many diabetes deaths are attributed to complications and not the disease itself, the city believes the true toll is much higher.
The City’s Registry
Diabetics regularly monitor their blood sugar with a standard test -- or at least they should. The health department’s proposed budget this year includes $2.7 million to fund a registry that will collect and analyze this data.
The program is already underway. In January, city officials began collecting the results of those blood tests by requiring laboratories that administer them to report the results. Officials hope to track the progress of individual patients, and also to get an exact picture of how diabetes is affecting New York City as a whole.
The city is gathering information across the city, but the initial effort of the registry is focused on the South Bronx, where diabetes rates are among the highest in the city. There, the health department will monitor patients’ progress, contacting them through their doctors if it sees that their blood sugar levels are persistently high, or that they are not getting the tests regularly enough. While doctors could probably do much of this on their own, the city argues that it is better equipped to handle such large sets of data, and that its efforts will take some of the burden off individual doctors.
If all goes well in the Bronx, the health department will use that pilot program as the basis of a citywide effort. By early next year, it will have a clear view of diabetes in New York City –- which populations are most affected, where they live, how they are being treated. Officials hope that some idea will emerge from this data about how best to help diabetics manage their disease.
Medical professionals seem excited about the potential of the registry. Jacqueline Salas-Spiegel of the Naomi Berrie Diabetes Center at the Columbia University Medical Center hopes the data from the registry will be used to identify the ages at which children are most likely to begin developing diabetes, and which parts of the city they live in. Then, she says, the city can deploy teams of "roving nutritionists" to their schools, with the aim of offsetting some of the unhealthy habits that lead to diabetes.
But others are raising questions about whether this registry invades New Yorkers’ privacy. “To pass along information like this without the patient’s even knowing I think is a violation, ” said Councilmember Yvette Clarke, who represents Flatbush, where people die of diabetes at a fifty percent higher rate than in the city as a whole.
People who don’t want to be contacted about their results can opt out through 311 or over the Internet, but their information will continue to be part of the registry. The health department says that it needs access to all the data if it is going to reach useful conclusions. Frieden has pointed out that the city has a good track record in managing confidential databases.
Trying To Change Behavior
The challenge with diabetes, say city officials and medical professionals, is that managing or preventing it requires a change in behavior. They acknowledge that collecting comprehensive data and refining the techniques used by doctors will not solve the problem of diabetes unless the city can use those tools to convince New Yorkers to adopt the healthier habits that are the only real way to counter diabetes.
"What we need to do is work to change the [social] environment," said Frieden.
The city is now establishing outreach campaigns to try to change the behavior of several groups of diabetics, including veterans, and women who develop diabetes while they are pregnant, which is called gestational diabetes. While gestational diabetes is temporary, women who develop it are more likely to end up with chronic diabetes in the future, as are their children.
Undermining Its Efforts
Critics point to ways that City Hall is undercutting its own efforts:
At a time when less than half of children maintain a healthy weight, the city signed a deal with Snapple giving the beverage company the exclusive right to sell its sugary juices and iced teas at schools and public buildings.
The city recently started charging for several recreation centers in low-income neighborhoods where those at the highest risk of developing diabetes had been able to exercise for free. While the city argues that the fees are modest, the Independent Budget Office recently showed that adding fees to recreation centers elsewhere in the city has led to lowered rates of use (in pdf format).
Also, the mayor's proposed budget includes about $9 million less money for child health clinics run by the Health and Hospitals Corporation; critics worry these reductions will lead to poorer health care for those who have relied on them.
These decisions highlight what Salas-Spiegel sees as one of the major roadblocks to a comprehensive diabetes program. Programs encouraging exercise and better dieting habits are the only known way to stop the rise of the disease, and success in the long run would prove to be cheaper than having to deal with the horrible consequences of the disease -- the amputations, the heart attacks. But it is difficult, she says, to devote the necessary resources now without the promise of immediate payoffs.
"If we prevent all this from happening it would be a tremendous savings," said Salas-Spiegel. "But would we then be able to transfer those funds saved to the prevention and education side? That remains to be seen."
