When Maryland Gov. Harry Hughes recently decided that state Medicaid funds could help pay for an Oxon Hill man's heart transplant, he was acting at least in part at the urging of the White House, which had promised that the federal government would pick up half the cost.
To Sherry Clifton, wife of the ailing 50-year-old gospel singer from Oxon Hill, who pulled which strings was of little importance. "I don't even know what Hughes did," she said from a hotel room in Richmond, where her husband is awaiting the operation. "I called the White House."
Growing White House intervention in individual transplant cases such as Hardie Clifton's has buoyed patients and their relatives, but according to critics has also raised fundamental questions about the Reagan administration's policies on technologically advanced high-cost health care: Who should get it and who should pay for it.
"If it hadn't been for the White House, a lot of people would've died . . . ." said Sheri Hatch, volunteer executive director of the National Heart Assist and Transplant Fund, an organization that raises money to help defray patient costs and has helped the Cliftons, among others.
Rather than supporting full federal reimbursement for heart transplants, the White House has urged states to pay half the cost, on a case-by-case basis as patients or patients' relatives call, according to Michael Batten, White House staff member who works on behalf of families seeking help on transplants.
Batten said that he has dealt with more than 30 states on transplants, urging them to approve Medicaid payments. Some have refused, he said, but Maryland was not one of them. On two occasions this summer, Batten intervened in Maryland cases that came to the attention of the White House.
"This business of saying we've got to relate to all and not some, it's not the way we do things in this country . . . . Things are being done on the episodic level, just as on any congressional staff," said Batten, onetime aide to U.S. Sen. John Heinz (R-Pa.) and a former Jesuit priest. "You may have criticism of Jesus Christ for curing only 10 lepers."
Critics, including Hughes, Maryland legislators, members of Congress and health care providers, chastise the administration for what they see as a Bandaid approach -- helping individuals while rejecting greater federal financial commitment to all heart and liver transplant patients.
They blame the White House for pressing the states to expend Medicaid funds -- already depleted by Reagan budget cuts -- on such extraordinary and expensive procedures, thereby reducing regular care available to greater numbers of indigents. (There have been about 500 liver transplants in the United States, at an average cost of $250,000, while the average cost of the approximately 600 heart transplants performed in the country has been $114,000.)
The money for "one heart transplant might pay for 6,000 health screenings for kids that could result in saving 10 lives, but that's not a high-profile thing," said Hughes aide Andrew Wigglesworth, sarcastically.
At the same time, the administration has been accused of delaying a decision that heart transplants are no longer "experimental." The determination excludes them from full coverage by the federal government under Medicare, which is for the elderly and totally disabled. Under Medicaid, which is for indigents of any age, the federal government pays half of the cost if the state pays the other half.
"The medical consensus that heart transpants are no longer experimental is in," said U.S. Rep. Albert Gore Jr. (D-Tenn.), whose House-approved legislation increasing funding for transplants was opposed by the White House.
The U.S. Public Health Service urged such a change in 1980, but the Carter administration instead ordered an outside study, which was completed recently by the Battelle Human Affairs Research Centers in Seattle. Based on 441 heart transplants dating to 1968, the study shows them to be more cost-effective than liver transplants, which are no longer regarded as experimental and are now covered by Medicare in some cases. The study also demonstrates that heart transplant recipients live longer.
In general, said study director Roger Evans, 80 percent of the heart-transplant patients were still alive after one year, and 50 percent after five, compared to 39 and 26 percent for those with liver transplants.
Administration officials say they are only waiting for the final report to make a determination about Medicare coverage of heart transplants. Indications are that they are worried about the financial impact of extending the coverage.
In testimony before the House Ways and Means Committee in February, an official of the U.S. Health Care Financing Administration testified to the "precarious state" of funding for Medicare patients and said the funding could be further eroded by expanded coverage of heart transplants.
"We could mandate that transplants be paid for," said Dr. Gary Friedlaender, a Yale University surgeon and president of the administration-backed American Council on Transplantation, "but it could become an entitlement program we couldn't afford." The government, he noted, projected a $200 million annual price tag on its commitment to kidney disease a decade ago, when 11,000 patients applied for dialysis and kidney transplants. The program now costs $2 billion for 65,000 patients.
"We've got the technology that's jumped out in front," said Batten. "We're looking at events in search of a policy."
In the Clifton case, Batten conveyed the White House concerns to the state through the federal health care financing agency. In an earlier liver transplant case, he spoke directly with a state official. But what Batten regarded as gentle advocacy, some state officials saw as White House pressure for partisan, political ends.
"There was enormous pressure from the federal level," is how State Sen. Catherine I. Riley (D-Harford), chairman of the General Assembly's joint administrative, executive and legislative committee, saw it.
"The Reagan administration has shown a tragic disregard for citizens desperately in need of transplants by not supporting bills in Congress which would not only establish national standards for procuring organs but would also mandate a study of all aspects of such operations, including reimbursement," the governor said in a press release announcing that the state's department of health and mental hygiene would no longer regard heart transplants as experimental, therefore permitting payment in Clifton's case.
Hughes' action prompted an outcry from Riley's committee. The panel, which eventually agreed to allow the policy change to remain in effect through Sept. 30, held hearings on the funding question yesterday.
Maryland officials are now concerned that the state may become a mecca for transplant patients. So far, about half a dozen states have agreed to cover heart transplants with Medicaid money.
"If one state has to do it, all should or none should," said Riley. "The doors have been opened. Whether it's right or not, I don't know. God gave us the brains that have developed technologies, and, therefore, it can't be wrong to use them, but there are a lot of questions. The best brains in the country should be dealing with this issue."
The onus, said the American Council on Transplantation's Friedlaender, is on the public.
But to Sherry Clifton, the $30,000 deposit required by the Medical College of Virginia in Richmond seemed virtually insurmountable and the rules and regulations the couple faced seemed contradictory if not downright incomprehensible. Her husband was rejected by Medicare before being approved for Medicaid.
As she tried to weave her way through the bureaucratic maze, she said, "I felt confused, hurt, a little disgusted, angry. I'm an American citizen. I see what's going on in America, how the United States takes it upon itself to help everybody -- all the postwar things we did for Japan, and the Vietnamese refugees -- and I'm calling agency after agency, and everybody's saying, 'We don't do this,' and I'm saying, 'Where am I? Am I still in America or off in the Twilight Zone?' "