Arthur Chernoff has a dream, one that he feels will ease a lot of angst for diabetics and other chronically ill patients, and when he talks about it, he sounds almost as animated as the Rev. Dr. Martin Luther King Jr. did describing his own dream.
"Doctors and insurers should be doing more to lower the barriers to effective health care, instead of raising the barriers," said Chernoff, chairman of the Division of Endocrinology at Albert Einstein Medical Center.
What Chernoff proposes is a sort of "diabetes passport," a way for patients to reach more easily the many doctors they need to see. Because the disease ravages so many body systems, diabetics may need, besides primary-care doctors, a phalanx of specialists such as endocrinologists, cardiologists, podiatrists, ophthalmologists or nephrologists, not to mention dietitians or other health professionals.
Physicians "have to get patients motivated in the first place to get exercise and start eating right," said Chernoff. "That is a job in itself, but then you want them to get eye exams at least once a year, have their feet looked at a couple times a year, get them to a dietitian periodically, and maybe to other specialists."
In a managed-care setting, all this requires referrals, co-ordination of medication, various tests, and constant communication among doctors and insurers.
If there's a disease crying out for health reform, it's diabetes. But the main health-reform proposals before Congress would not fix these myriad complications, said Robert Field, a professor of law and public health at Drexel University.
Those bills are focused on getting more people covered by health insurance, he said, although some pieces could help. Incentives to adopt electronic medical records, for example, will enable providers to share information more easily, he said.
Meanwhile, diabetics "are treated like pingpong balls, bounced back and forth between physicians," he said. "The main difference is that in pingpong, only two people are doing the bouncing. In diabetes care, it can be many.
"So the best thing you can do is be the quarterback of your own care."
Richard Wender, chairman of the department of Family and Community Medicine at Thomas Jefferson University, acknowledged that Chernoff's passport idea is a good goal. But he said diabetics need to be treated by a coordinated group of doctors who can jointly monitor their cases.
"It is possible to create systems where all doctors are on the same communications systems, with a patient-centric chart everyone is seeing," said Wender. "That is where we need to go."
Health insurers say that they are happy to explore anything to make the patients stay healthier but that it is difficult to coordinate that kind of care.
The region's largest insurer, Independence Blue Cross, for instance, is working with Renaissance Medical Management, which has 180 primary-care physicians in the Pennsylvania suburbs. Their pilot program has in-office nurses tracking diabetes patients, and making sure they undergo all needed tests and get to all their many appointments.
"But it's true, even with this program, diabetes is for the most part a disease that patients have to manage by themselves. One doctor can't manage it for them," said Kenneth Goldblum, Renaissance's chief medical officer and a primary-care physician.
David Fairfield, a retired transportation manager from Coatesville and a patient of Goldblum's, discovered he had diabetes 15 years ago, when he was 55.
Since June, when Fairfield started with the program, Beth O'Reilley, a nurse in Goldblum's office, has called him periodically to make sure he takes his blood-sugar tests, give him diet and exercise advice, and ensure he gets to other medical appointments.
In many ways, it's like having a diabetes coach, he said. "I did everything for myself for years, so now when Beth calls me to do this or that, I know what that means, but it is still wearing to know all this has to happen."
Aetna, too, has a case-management program with an on-call nurse for patients, said Martin Kodish, an endocrinologist and Aetna's senior medical director for the Northeast region. Kodish said Aetna also does a lot of mailings and educational outreach, but most often it is up to patients to keep up with their own referrals, blood tests, diet and exercise.
At Einstein Chernoff is part of the Gutman Diabetes Institute, where doctors of many disciplines can tend to patients' needs. But even there, it has been hard to coordinate care for everyone.
"Nothing really in the managed-care system favors it. It isn't cost-effective, with the need for referrals all the time and the limit on how many doctors you can see at one time and so forth," Chernoff said. "So we just go on as before."
Jefferson's Wender said that it might seem that everyone could be hooked up by computer. But those systems haven't yet been made cost-effective, at least for primary-care physicians.
"Sometimes, after a patient goes to a specialist, primary-care physicians say, he can go into a black hole. Reports don't get transmitted back and forth efficiently. People go out of network. We're a long way from getting this fixed," he said.
Only government has the authority and resources to fix this for everyone, Field said.
Still, he points to a few integrated networks, such as the Geisinger Health System in northeastern and central Pennsylvania, that have created effective models.
Geisinger's 750 physicians use a sophisticated electronic-records system, so, as long as patients stay in the system, they can get referrals quickly, have tests monitored, and have specialists know what others have prescribed. The health system also is unusual for owning its own insurance company, adding another dimension to the team approach.
"It sounds simple," Chernoff said, "and maybe it should be. But with wide-ranging differences in how long referrals last and how records are shared, and the lag time between appointments, it just isn't simple at all."
"I am confident that one day, my idea of a passport, at least, will be reality," Chernoff said. But for now, he and others said, patients too often have to fend for themselves.
Contact Robert Strauss through email@example.com.