Pubdate: Mon, 12 Oct 1998 Source: Washington Post (DC) Contact: http://washingtonpost.com/wp-srv/edit/letters/letterform.htm Copyright: (c) 1998 The Washington Post Company X Website: http://www.washingtonpost.com/ Author: Susan Okie Page: A01 - Front Page INMATES WITH KIDNEY DISEASE CALL TRANSPLANT POLICY CRUEL OTISVILLE, N.Y.--David Lee Smith needed a new kidney, and his brother, a proven match, was willing to give him one. But Smith delayed the transplant surgery and then, as he put it, "I got in trouble." A federal court in Texas found Smith guilty of selling crack cocaine and condemned him to life in prison. In doing so, it also sentenced Smith, now 43, to spend years tethered three times a week to a kidney dialysis machine. A transplant from his brother, Horace, that could prolong his life is no longer an option under a federal Bureau of Prisons policy. Smith and hundreds of other inmates in federal and state prisons across the country are at the crux of a complex debate about medical choices within the growing and rapidly aging prison population. State and federal corrections systems provide medical care for ailing inmates and rely on a network of prison hospitals, outside medical centers and private clinics to do so. But inmates with kidney failure and other life-threatening conditions require constant monitoring and expensive specialized care. Most prisons pay up to $40,000 a year per patient to keep such inmates on a thrice-weekly program of hemodialysis, which cleans the blood of impurities. Yet with advances in care, kidney transplants are now by far the preferred medical treatment. The death rate for hemodialysis patients is extraordinarily high -- about 23 percent a year. A successful transplant using a living donor reduces that risk to about 3 percent per year. A tangle of prison policies and budget constraints, combined with the restrictive eligibility criteria of outside organ banks, has prevented most inmates from getting kidney transplants. Even with family donors, prisoners are unlikely to be considered for transplants unless they are perilously near death or can pay the $80,000 to $120,000 initial medical costs of a transplant -- plus the expenses of transportation and security. Virginia is one of the few states that regularly refers patients for kidney transplant evaluations and pays for the surgery, considering it cost-effective and compassionate care. Three Virginia inmates have had transplants since 1995 and another seven are waiting for organs, officials said. The federal Bureau of Prisons, which supervises 134 inmates on dialysis, has not allowed a transplant in more than a decade and will not consider transplant requests except in extraordinary situations, officials said. In the outside world, federal Medicare insurance offers universal coverage for kidney transplants, recognizing the surgery's cost and health benefits. But federal prisoners lose that coverage while in custody. Inmates say high surgical costs make it virtually impossible for them to foot the bills. "We're aware of the statistics . . . regarding the benefits of family-donated kidneys, but there are a lot of other considerations," said David B. Good, national health services administrator for the Bureau of Prisons (BOP). "Most of the inmates that we have on dialysis . . . came in on dialysis. We still believe this is the appropriate care for them." Some inmates -- their complaints backed by medical opinions -- say that such restrictions are not just medically outdated and fiscally shortsighted, but inhumane. "The court sentences you to one thing. Then the Bureau of Prisons turns around . . . and denies me access to a kidney transplant. They're virtually sentencing me to a death sentence," said Michael Walker, another Otisville inmate with kidney failure who is serving 14 years for bank robbery. "I'm appalled" by the prison restrictions on transplants, said Juan P. Bosch, chief of the division of renal medicine at George Washington University Medical Center. "As far as I know, in the United States, every patient who wants a transplant and is [medically] a candidate for transplant should be registered" with a regional organ network to receive a kidney. BOP officials say the policy reflects the realities of kidney failure treatment in the population as a whole. About 214,000 Americans are on hemodialysis; only about 11,400 received transplants last year. More than 38,000 people linger on donor waiting lists. Some dialysis patients who can't find a living donor are forced to wait years for an organ. Despite Medicare coverage for the procedure, blacks, women and poor people are less likely to receive kidney transplants than whites, men and rich people, according to a study published last week in the Journal of the American Medical Association. David Lee Smith is one of 19 kidney-failure patients incarcerated at the federal prison here as part of a clustering concept that helps contain prison medical costs. Only Otisville and two federal prison medical centers - -- in Springfield, Mo., and Lexington, Ky. -- offer dialysis. Inmates with kidney failure are housed in these locations, often so far from their families that they rarely receive visitors. Three times a week, the Otisville prisoners are strip-searched, shackled and escorted onto a bus for a 35-minute trip to the Middletown Dialysis Center, a private clinic under contract to treat up to 25 inmates a year at a cost of about $40,000 per patient. Under the watchful eyes of guards, each prisoner is hooked up to a machine for four hours, the blood pumped to remove waste and excess fluid. Some of the prisoners have been told by doctors that they are good transplant candidates and have relatives willing to give them kidneys. But their dealings with prison officials have been disheartening. Inmate Sylvester Clay, 39, said he inquired about a transplant in a letter to BOP officials several years ago but lost hope when he received their answer. "The policy says unless I am willing to cover all the costs -- for security and everything -- that's the only way I could get it," he said. Michael Walker, a tenacious man with a scholarly manner, has filed several unsuccessful lawsuits and has written dozens of letters to federal officials concerning his care. Medicine bottles, boxes of correspondence and a thick law journal vie for the scant storage space in the 8-by-12-foot cell he shares with another prisoner. Walker came to Otisville in 1994 from the U.S. Medical Center for Federal Prisoners in Springfield, Mo. Shortly after his arrival, he suffered an episode of pericarditis -- an accumulation of fluid around the heart -- for which he blamed inadequate dialysis at the Springfield facility. He underwent surgery and recovered but said his ability to exercise remains impaired. Inmate Abdullah Saubar, 50, twice received kidney transplants through organ networks while a state prisoner in Massachusetts, where he says his operations were paid for by the state. He was forced to go back to dialysis after the transplants failed. Saubar said he does not want another transplant -- but he may need one to survive. After 21 years on dialysis, blocked blood vessels have made it increasingly difficult for nurses to hook up the dialysis machine. A thin, frail-looking man, Saubar during an interview wore a bandage on his neck, covering an intravenous catheter that doctors placed there for dialysis. In recent months, the Otisville prisoners say their situation has seemed more perilous because of the deaths of two inmates who were on dialysis. Inmate Ernest Baker, 53, collapsed in front of the others in January while getting off the bus at the dialysis center. Walker said Baker had been hospitalized with heart problems three days earlier and complained that he had received no dialysis during his hospital stay. Kidney failure patients ordinarily need dialysis three times a week and sometimes more often when they are sick. As the bus was unloaded, Baker was taken out in a wheelchair, his legs shackled, Walker said. "He was moaning and groaning and couldn't sit up straight," Walker recalled. "As he was getting off the bus, I and several others watched him. His eyes rolled back in his head." Paramedics could not resuscitate Baker. "We were informed . . . that night that he had expired," Walker said. Inmate Ernest Gordon suffered for several years from low blood pressure and dizziness, both occasional side effects of dialysis. In June, the inmates said, Gordon, 44, passed out at the dialysis unit and died at a nearby hospital. Robert Kirschner, the kidney specialist who owns the clinic, said autopsies showed that neither death was caused by the dialysis treatment. "They're getting good care, whether they appreciate it or not," he said of the prisoners. Nevertheless, Kirschner said, he has written letters for some inmates recommending them as good medical candidates for transplants. He said he does not know the reasons for the bureau's restrictions on transplant surgery. Kidney experts say that simply being on long-term dialysis puts life at risk. Cardiovascular disease produces blocked blood vessels in the heart and elsewhere in the body, and causes 60 percent of deaths in people on dialysis, said Garabed Eknoyan, a professor of medicine at Baylor College of Medicine and president of the National Kidney Foundation. This is partly because many people with kidney failure also have high blood pressure or diabetes, which are risk factors for cardiovascular disease. However, dialysis itself appears to increase their risk of heart and blood vessel disease, Eknoyan said. The best candidates for kidney transplants are relatively young patients who are in good shape except for their kidney disease, said Bosch of George Washington University. People with severe heart disease or diabetes often are eliminated as transplant candidates, as are patients infected with the AIDS virus or chronic carriers of the hepatitis B virus. A history of drug abuse -- which is common in prison populations, and sometimes causes kidney failure -- also may exclude a person from consideration for a transplant. BOP spokesman Todd Craig said that under the agency's policy, a prisoner judged likely to die within six months to a year without a transplant may be considered for "compassionate release" so that the surgery could be performed outside. When a prisoner is released, the surgery qualifies for Medicare coverage. But doctors say the bureau's policy makes little sense given the optimum conditions for a successful transplant. The longer the surgery is delayed, the less hopeful the prognosis, they say. Part of the problem facing the prisons is cost. Without Medicare coverage, federal and state prisons pay the full cost of inmate health care. (In the federal system, this breaks down to about $9.70 per day for each of its 120,000 prisoners.) Transplant surgery is costly and requires intensive medical follow-up. But George J. Annas, chairman of the health law department at Boston University's School of Public Health, said transplants are less expensive than dialysis in the long run. "It's not as if they're going to save money" by denying transplants to prisoners, Annas said. "If it is punishment, it would be cruel and unusual punishment. That's not the penalty for any crime, being barred from getting a transplant." When prisoners have willing organ donors, he said, "then you don't even have the problem of taking kidneys away from people who haven't committed crimes." But even if the bureau eased its restrictions, finding kidneys for prisoners without family donors would be difficult, experts say. Some transplant programs are reluctant to accept prisoners as candidates, predicting that inmates will not follow the strict medical regimen required to keep a transplanted organ healthy, said Eknoyan. "A lot of these individuals are noncompliant," said Eknoyan. "We've had the bad experience of people who . . . don't comply with the treatment [to suppress the immune system], and reject the organ. It becomes a wasted resource." Other physicians argue that prisoners should be evaluated individually rather than being categorically denied a treatment that clearly can prolong survival. Inmates with kidney failure in state prisons also rarely receive transplants, according to interviews with officials of a number of state prison systems. In some cases, states refuse to pay for them. In others, prison policies and the reluctance of transplant programs to consider prisoners combine to prevent inmates from getting the treatment, said Bob Spieldenner, a spokesman for the United Network for Organ Sharing. To get on a kidney waiting list, a patient must be evaluated at a medical center and accepted for a transplant program, he said, but some prison systems are reluctant to even pay for an evaluation. California's prison system, with 91 dialysis patients, last provided a kidney transplant to an inmate in 1989, said Christine May, a spokeswoman for the state's Department of Corrections. She said prisoners may be evaluated for transplants but must meet standard eligibility requirements to be placed on a waiting list. If they are allotted an organ, the state will pay for the treatment. Maryland, with about 30 state prisoners on dialysis, follows the federal model. The state does not allow transplants for inmates, said Maxine Eldridge, a spokeswoman for the state's Division of Correction. "If they are in need of an organ, we would consider them for medical parole," she said. Glen Castlebury, director of public information for the Texas Department of Criminal Justice, recalled a case several years ago in which an inmate's family had agreed to pay for a transplant. The prison system agreed to provide transportation and security, he said. "But it did not happen," he said. "The organ bank had a reluctance about it because the offender recipient was . . . an IV drug abuser." In Florida, with about 50 inmates on dialysis, "a couple of cases" have been considered for transplants in recent years, said John Burke, deputy assistant secretary for health services administration at the Department of Corrections. But the inmates either did not meet organ networks' criteria or their health deteriorated before a transplant could be performed, he said. Massachusetts Department of Corrections spokesman Anthony Carnevale said decisions about transplants are made on a case-by-case basis. He said he could provide no information about individual cases, such the two transplants Saubar said he had at state expense. Virginia has about 30 inmates on dialysis and was one of the few states surveyed that routinely refers prisoners for transplant evaluations and covers the cost of treatment. "Just the same as on the outside, it is financially and socially better to have a transplanted patient than a dialysis patient," said M.J. Vernon Smith, chief physician of the Commonwealth of Virginia Department of Corrections. In three transplants since 1995, one kidney came from an inmate's relative and two others from organ banks, said Smith. Seven more inmates are awaiting calls from organ networks. "That's the standard of care on the outside, to which I conform," said Smith, a urologist who said he personally transplanted kidneys into eight or nine state prisoners during 25 years of practice at the Medical College of Virginia. George Washington University's Bosch said that kidney transplants have become relatively simple operations in recent years and that prisoners shouldn't be denied access to a treatment the government provides to other Americans. "The idea that by giving it to them, you would restrict the kidneys available to the honorable citizens of America is not a fair argument, because many non-honorable citizens are getting kidneys outside" prisons, he said. "Who is going to make the test of honorability ?" - --- Checked-by: Richard Lake