Hearts Without a Home
Dr. Jesse Edwards is known around St. Paul, Minn., as the man with a heart.
In fact, he has more than 15,000 of them, each hanging in a transparent, preservative-filled bag at United Hospital. Not to mention 100,000 photographs and 5,000 drawings.
The Jesse E. Edwards Registry of Cardiovascular Disease is the largest collection of healthy and diseased hearts in the world, a valuable resource for cardiologists and surgeons confronted with a mysterious illness or researchers exploring the mysteries of the body’s powerful pump.
But the collection is in trouble. United Hospital has been taken over by a managedcare group that is unwilling or unable to provide the $550,000 a year necessary for its staff and maintenance.
The registry might be taken over by the University of Minnesota. It might be moved to an institution in another state.
Or it might be shut down.
Although many hospitals and medical facilities around the country are feeling similar financial strains, the unique nature of this registry would make its closing a particular tragedy, many agree.
The hearts and photographs and other materials at the registry are “really irreplaceable material,” said Dr. Paul Stanger, a pediatric cardiologist at UC San Francisco. They are invaluable to budding cardiologists who want to familiarize themselves with congenital defects and other disorders, he added.
“It needs to be preserved,” said Dr. Jack Titus, the collection’s director. “It’s a valuable resource for learning.”
As managed care organizations absorb more hospitals, critics charge, the need to cut costs is forcing them to cut loose independent research institutes and even to cut back on medical research.
Most teaching hospitals charge slightly more for their services than other facilities, with the extra profits used to underwrite teaching and clinical research costs. When managed care moves in, teaching and research suffer. And the loss of local funds can lead to the loss of federal funds as well.
A July study by Dr. Ernest Moy and his colleagues at the Assn. of American Medical Colleges in Washington, D.C., reported that medical schools in states with the highest encroachment of managed care--including California--were receiving a declining share of federal research dollars. In 1995, those schools received $98 million less than expected, Moy reported.
In a separate study published the same month, Dr. Eric G. Campbell and his colleagues at Massachusetts General Hospital concluded that researchers at institutions with the greatest involvement of managed care produced 17% fewer papers than those at conventional institutions. Researchers at such institutions also reported greater tension on the staffs, less cooperation from colleagues and increased competition for limited resources.
In response to these concerns, some physicians and patients are calling for a surcharge on all medical bills to support research and teaching. The newly formed Citizens for Public Research and Education advocates a 2% levy on all health care payers “to support the infrastructure required to advance the medical research and teaching programs of the nation.”
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Such a surcharge is not likely until far in the future, however. The heart collection’s problems are more immediate. Allina Health Systems, which swallowed United Hospital in the early 1990s, will not support the registry after the end of this year.
The heart registry began in 1960, when Edwards, a cardiac pathologist, was recruited from the Mayo Clinic in nearby Rochester to work and teach at what was then called Miller Hospital. He brought with him 250 hearts that he had collected at Mayo, and that formed the seeds of the registry.
“Every time I saw a heart, it seemed so wasteful to let it go,” said Edwards, who is now 86, semiretired and recovering from a stroke suffered two years ago.
He continued accumulating hearts collected at autopsies at Miller, which eventually became United. Virtually all of the hearts had never been operated on, and they represented a broad cross-section of congenital defects that most cardiologists see only rarely.
Of the 5 million patients who have passed through the Mayo Clinic, only one has had a rare disease called giant cell myocarditis, noted Dr. Brooks Edwards, Jesse Edwards’ son and himself a cardiologist at Mayo. “In the registry, they have four cases,” he said.
Stanger notes that most of the specimens were collected before surgical techniques were developed to correct the congenital anomalies and at a time when large numbers of autopsies were routinely performed. “This is something that will never be able to be amassed again,” he said.
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But “it is not a museum,” emphasizes Titus. “It’s a working resource for learning, a specialized medical library” where cardiologists in training can learn to recognize congenital defects and where surgeons planning new techniques can reconnoiter the cardiac landscape. Pediatricians trying to identify a specific abnormality can compare it to known specimens to help them identify potential treatments. “Physicians need hands-on experience,” he said.
United recognizes the registry’s value, President David Jones said, but the hospital’s profits dropped to less than $10 million in 1996 and it simply cannot afford to continue its support.
“The problem is, if the heart registry gets a million dollars a year, that is a million dollars that does not go into patient care,” said Dr. Dan Foley, United’s medical director.
The cost of operating the registry was about $845,000 last year, Titus said. With cutbacks in staff and activities, it will only be about $525,000 this year. It has an endowment of $1.3 million, but the interest from that covers only a small fraction of costs, Titus said.
While the registry’s future is in doubt, “We don’t think it will go out of existence,” Titus said. The University of Minnesota may be interested in taking it over, he said, and he has received inquiries from schools outside the state.
Another possibility would be to raise additional funds for the endowment to cover operating costs. He estimates that it would require $5 million more. One way or another, he concluded, the registry’s fate should be decided by the end of the year.
