Although not quite 2 years old, Paddy Papadakis "has gone through about 90 bottles of junior aspirin" and has been in the hospital at least 15 times, says his mother, Theresa Papadakis of Capitol Heights.
The aspirin and the constant consumption of far more sophisticated medications control the pain of his disease, a disorder called Alagille's Syndrome. It is a rare liver ailment that often causes other organs such as the heart and lungs to deteriorate. Unless Paddy can get a heart-lung transplant in the next few years, he will die.
But the insurance that pays for Patrick "Paddy" Brian Papadakis' medical care won't pay for the transplant because it considers the procedure "experimental and investigative."
And Paddy's parents can't simply switch to an insurance company that will pay because Paddy's father, Dmitrios Papadakis, is an enlisted man, a heating engineer stationed at Andrews Air Force Base.
His family's health insurance is provided by the Civilian Health and Medical Programs of the Uniformed Services, known as CHAMPUS. Overseen by the Defense Department, CHAMPUS is a health insurance program for military dependents and retirees, and it covers procedures performed at nonmilitary hospitals when the needed service -- such as heart and heart-lung transplants -- is not provided by a military hospital.
And the Papadakises are not alone. At least nine people covered by CHAMPUS are potential transplant recipients, including Linda Black, 38, of Valdosta, Ga., wife of a Vietnam veteran, and Anita Garner, 45, of Little Rock, Ark., wife of an Army retiree. Both need heart transplants, but without CHAMPUS coverage, they must come up with tens of thousands of dollars before a hospital will agree to perform the procedure.
Pamela Sundman of Islamorada, Fla., is, like Theresa Papadakis, a CHAMPUS mother. Billy Bostick, her 14-year-old son by her first marriage, is, like Paddy, a prospective heart-lung transplant patient. And Sundman is angry about her family's predicament.
"I really believe that the reason they [CHAMPUS officials] do not want to take this off the experimental list is that they think it will be a financial burden to this country, and that's baloney," Sundman says.
Officially, CHAMPUS does not cover either heart transplants or heart-lung transplants, nor does it pay for the drugs and checkups that are part of the outpatient follow-up, because it is considered experimental. This policy is being criticized by both subscribers and members of Congress.
"After the 10th time it's done [on humans]," says Theresa Papadakis, "it shouldn't be considered experimental anymore. It should be considered life-saving," and it should be covered.
Heart transplants have been performed on humans since 1967. The one-year survival rates for transplant patients increased dramatically in 1980 with the widespread use of cyclosporine, an immunosuppressive drug that helps keep the body from rejecting the transplanted organ.
Improved survival rates make these transplants more cost effective, a development that has "led many third-party and government agencies in both the United States and Europe to classify heart transplantation as a clinical service rather than an experimental procedure," concluded Drs. W. Gerald Austen and A. Benedict Cosimi, both from the Massachusetts General Hospital, in The New England Journal of Medicine last year.
Although the national Blue Cross-Blue Shield organization still describes heart and heart-lung transplants as experimental, most regional Blue Cross-Blue Shield plans now cover the procedures.
Ten state Medicaid programs also cover those transplants. Medicaid programs include matching federal funds, even if they do pay for the transplants.
Nearly four years ago, Battelle Human Affairs Research Centers of Seattle began conducting a massive National Heart Transplantation Study under contract to the federal Health Care Financing Administration (HCFA).
Battelle concluded that heart transplants should no longer be classified as experimental.
A number of observers of this field had expected Health and Human Services Secretary Margaret Heckler to open up the way for CHAMPUS and other federal insurance programs to cover such transplants when she released the Battelle report in May. Instead, to the surprise of these officials, Heckler actually put another obstacle in the way.
Heckler requested more detail on several items, including: criteria for heart transplant patient selection, updated medical contraindications for the transplants, institutional criteria for facilities seeking to perform the procedures, and, from HCFA, information on the cost of covering heart transplants for the Medicare population.
John Marshall, director of the National Center for Health Services Research and Health Care Technology Assessment, which is gathering the additional information, says the review is "on track" and will be presented to Heckler by Aug. 31.
Last week, an angry Sen. Albert Gore (D-Tenn.) called the labeling of heart transplants as experimental "a sham." He said Heckler's "announcement clearly represents an attempt to put off making the inevitable decision that heart transplants should be covered. These delay tactics are inexcusable."
In 1983, Gore sponsored legislation "that resulted in CHAMPUS coverage of liver transplants," he says, by getting those transplants off the government's "experimental" list.
"I am prepared, if the government continues to refuse to face the facts about heart transplants, to take the same legislative approach on this matter," says Gore, who will wait for the outcome of the pending HHS report before taking any action.
Even more infuriating for the CHAMPUS-covered families who need a transplant is the fact that a number of heart transplants have been covered for military dependents by some branches of the military. In addition to coverage by the Veterans Administration, several transplants have been paid for by individual military services.
According to a spokesman for Johns Hopkins Hospital in Baltimore, "Three patients who have undergone heart transplants here . . . were wives of military personnel." The transplants, he said, were paid for by Walter Reed Army Medical Center.
Defense Department sources acknowledged that the Air Force has paid for at least one heart transplant -- performed at University of Utah Medical Center in Salt Lake City on the wife of an Air Force enlisted man stationed at Hill Air Force Base in Texas.
According to officials at both DOD and HHS, the military-covered transplants -- while frustrating to CHAMPUS patients who have been unable to obtain such coverage -- are legal.
"The commander of a [military] hospital has the authority and discretion" to decide whether to provide funds for a procedure not routinely covered, Marshall said.
"If I were in the Army," said one official who asked that he not be identified, "and somebody in my family needed a heart transplant, I'd look to see where the greatest number had gotten paid for, and I'd get myself transferred there."
As this official put it, CHAMPUS patients in such places get "a lucky break" in the midst of a debilitating situation -- while others must continue "dealing with a bunch of bureaucrats by mail in Colorado [CHAMPUS headquarters] and Washington."
And that mail really doesn't help very much. In January, for example, Pamela Sundman, Billy Bostick's mother, received a letter from Theodore D. Wood, deputy assistant secretary of defense for medical program management. "Please be assured that we will do everything the law allows to assist you . . . I don't know what the outcome of this [heart transplantation]review will be, but you should not give up hope."
Leonore Magida is a free-lance writer living in Baltimore.