David Carroll measures out his life in grams of food, in four-hour visits to a kidney dialysis center and in periodic bouts of anger with a government that seems to have none of his discipline or human concern.
Mr. Carroll is one of 4,200 Marylanders who find themselves at the end of a fraying medical and financial lifeline.
A machine taking over the blood-cleansing chore of his kidneys three times a week keeps David Carroll alive. Drugs he must take in concert with this treatment cost $500 a month -- a cost covered by the state's Kidney Disease Program.
"Nobody can actually afford this treatment," says Mr. Carroll, a 58-year-old former Bethlehem Steel Corp. employee. "This is your catastrophic illness. There's no way a middle-income person could pay for this."
His condition cannot be reversed and, as a diabetic, he says, he is not a good candidate for a transplant. He has come to terms with this reality.
"We know in the end," he says, "that this is what will take us out."
He has more patience with his disease, he says, than with federal and state governments, which have fallen into a lengthy and abstract debate about who should pay for kidney treatment and how.
Federal officials are threatening to end a program adopted in Maryland this year -- a tax on doctor's office visits and other medical services -- that increases the nominal cost of Maryland's medical programs and produces an additional $55 million in federal Medicaid funds, some of which pays for the kidney program.
"It's a bureaucratic mish-mosh that's catching us in the middle," says Mr. Carroll. "We have enough to think about."
He thinks about what will happen to him and to his fellow patients if the program is dropped or curtailed. What is most likely to happen to patients on this program, most of whom are poor, would be calamitous, he and others say.
"The first thing that will go will be the meds [the drugs]. We'll be on a long slide to death," he says.
"They will break their bones, which become brittle without the necessary drugs. They will die of stroke because their blood pressure will go sky-high. They will have respiratory problems," says Pearl Lewis, the mother of two children with serious kidney disease. A victim of Crohn's disease and a survivor of many operations, Mrs. Lewis has become an advocate for kidney patients and others.
"I've seen what it is to suffer and to fear for your children's lives," she says. "When my son got sick in Virginia, he didn't have any insurance. They didn't have a kidney disease program in Virginia. If he'd been in Maryland, he'd have been OK."
Her son has since gotten health insurance and a transplant. Herdaughter has regained some kidney function. Mrs. Lewis has continued her advocacy, working with Mr. Carroll and others in Maryland, including Joseph Morton of Woodlawn, whose wife died recently of kidney disease.
All three have been at war periodically with Nelson J. Sabatini, Maryland's secretary of health. Last year, they struggled against him to maintain the Kidney Disease Program and they have hailed his plan for obtaining more money from Washington.
"I've had my disagreements with Nelson," Mr. Morton said, "but on this one I support him 100 percent."
Twenty-two other states have adopted a program similar to Maryland's, setting off alarms in the federal health-care bureaucracy. Thecumulative costs of these programs could be higher than $12 billion by the end of fiscal 1993. Washington officials say Maryland's tax on doctor's office visits is "sleight of hand" to jack up the federal share. By imposing a tax on doctor's fees, Maryland increases the cost of its program. And since the federal government reimburses Maryland for 50 percent of its costs, the state gets 50 percent of the tax -- $55 million for the fiscal year that began July 1 and ends next June 30.
The state insists it is doing what Congress intended it to do. But the Health Care Financing Administration already has denied $13 million in reimbursements requested under the Sabatini plan for fiscal 1991. Soon, HCFA is expected to promulgate regulations that will forbid Maryland and other states from using provider taxes.
Maryland says it will sue. And an aide to Representative Henry A. Waxman, D-Calif., said last week that unless states do go to court the regulations will be difficult to combat -- though Mr. Waxman insists HCFA is violating an agreement made with him and other legislators last year.
The law, according to Mr. Waxman, says "the secretary [of health and human services] has no authority to deny or limit payments to a state for expenditures, for medical assistance for items or services, attributable to taxes imposed with respect to the provision of such items or services."
HCFA's administrator, Dr. Gail R. Wilensky, and other federal officials have indicated they plan to press forward with their regulations.