Proposed privacy bills could be detrimental
Proposed privacy bills could be detrimental
Advocate organizations not lobbying on the issue
Bob Stone is concerned about how legislation pending before the U.S. Senate could adversely affect people with diabetes. The executive vice president of Diabetes Treatment Centers of America (DTCA) in Nashville, TN, has been to Washington lobbying missions several times in recent weeks.
"From our perspective, what’s important is that we prevent the creation of artificial barriers to care," says Stone.
"Everybody’s concern is that this is an easy political issue," he says. "Our concern is the unforeseen fallout."
Many patients need to be nudged
He explains that people with diabetes need a very broad health care team to prevent complications. And that includes companies like DTCA, which contract diabetes care to hospitals and managed care companies around the country.
In addition, Stone says, many patients tend to deny they have the disease and need to take care of themselves, so they need little nudges from a health care team. Both of those could be curtailed under some of the currently pending bills.
Stone isn’t getting much support from the American Diabetes Association (ADA) or the American Association of Clinical Endocrinol-ogists (ACE), both deeply involved in the interests of diabetics.
An ADA spokeswoman says her organization’s legislative affairs department is putting its energy into lobbying for increased funding for diabetes research.
ACE says simply that patient privacy legislation is expected to be discussed at a later date.
Time is running out
There isn’t much time, however. The Health Insurance and Accountability Act of 1996 created a system of health care information exchanges by computers. It joined previous laws that set a deadline of August 1999 for privacy protections to be established for medical records. If the Senate doesn’t pass patient privacy legislation by then, the regulatory job will be left up to the U.S. Department of Health and Human Services (HHS).
Three bills have been introduced in the Senate, and a bipartisan compromise bill combining the common features of the three was being prepared at press time.
The House of Representatives is waiting to take its cue from the Senate.
"It’s pretty clear there will be some legislation passed by Congress because they don’t want to leave this in the hands of HHS," Stone says.
What Stone explains to any legislator who will listen is that diabetes is a unique disease with unique treatment modalities and a unique psychology. Some of the legislation, Stone asserts, will reduce compliance at a time when the number of patients with diabetes is burgeoning.
"With the diabetic population, generally, it’s a disease of denial," he says. "The horrible effects take time to develop, and most people don’t want to think about it until they have to."
"With most program interventions, they will avoid treatment if given the option because it forces them to confront the disease," Stone says.
DTCA has found that patients are unlikely to remember to make their own appointment for labs, eye and foot screenings, and for nutrition counseling, he says.
Stone argues if businesses like his can have access to patient files, they can supervise diabetes care and alert patients to what they need to do to stay in control.
So the nationwide diabetes management provider has created a "negative option." This means appointments are made for a patient, but he or she can cancel them with a phone call.
"We found that we get an 85% return on this type of program, as opposed to a maximum 25% return on cards reminding people to make appointments," Stone explains.
At the same time, he says, "We also believe people are entitled to decline health care services. To do so is as simple as a phone call."
His point regarding patient privacy is that this type of treatment plan would not be possible under at least one of the bills now pending that prohibits private companies from soliciting patients.
"There are proven benefits for comprehensive management programs for diabetics," says Stone, differentiating them from some pharmaceutical companies’ disease management programs that he says are actually ways to approach patients to sell them their products.
"Legislation shouldn’t create any barriers to access to these legitimate programs," he says.
Legislation might also impede the flow of information between a wide range of health care providers who treat diabetic patients.
Depending on which version of the bill passes, movement of a patient’s records between primary care physicians, endocrinologists, ophthalmologists, urologists, cardiologists, podiatrists, nurse practitioners, educators, dietitians, and a host of other professionals who care for diabetic patients could be hindered or even prohibited without separate authorizations.
Pending bills
Three versions of patient privacy legislation are now pending in the Senate. The least acceptable, says Stone, is the Kennedy-Leahy bill sponsored by Sens. Edward Kennedy (D-MA) and Patrick Leahy (D-VT) because it provides the most stringent protection for patients and the strictest regulation on information sharing.
"The tougher bill like that would significantly reduce the number of patients we could take care of without additional time and expense," Stone says.
"The requirement for a patient to give written consent for every exchange of information among members of the health care team will make it impossible for the team to function," Stone says. "All the literature says the team needs to communicate."
A spokesman for Kennedy says the goal of the legislation is not to limit care, but to put an end to "too much access to medical records without written consent."
What are the drawbacks?
The bills sponsored by Sens. James Jeffords (R-VT) and Christopher Dodd (D-CT) and another by Robert Bennett (R-VT) are "more acceptable" in terms of comprehensive diabetes management, Stone says, because they allow more freedom of information exchange.
Spokesmen for Jeffords and Bennett told Diabetes Management they are not aware of any drawbacks.
That’s why Stone says he is traveling from office to office, presenting his case over and over. Many legislators don’t realize the importance of disease management or even really understand what it means, since it is a very new field, Stone says.
"The evidence in diabetes and other chronic disease is that privacy is a good thing, particularly when it pertains to keeping employers from having access to medical records and discriminating against patients with diabetes and other diseases.
That’s illegal now, and this legislation should and will make that stronger," Stone says. But he cautions that legislators and health care professionals must work together to ensure adequate communications within the health care team, something Stone equates to throwing out the baby with the bath water.
[Contact Bob Stone at (615) 665-2760.]
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