Policy changes might mean longer waits for donated organs
Decisions in Washington could have local impact
Potential changes from Washington could mean that patients awaiting a liver transplant in your community could be passed over for a patient several states away -- even if the donated organ was from your area. In late February, Health and Human Services Secretary Donna Shalala sent a letter to members of the U.S. Congress outlining the government's stance on the current system for organ donation and distribution. The current donation and procurement system is administered under the National Organ Transplant Act of 1984 and the Organ Procure ment and Transplantation Network created as a result of the legislation.
The letter stated that the goals of the National Organ Transplant Act have not been met because in some regions of the country, patients have long waits for available organs. Conversely, the letter states that in other regions of the country, organs go to patients who are not critically ill and could wait longer for an available organ.
"We have not yet achieved equitable distribution to those with greatest medical need," writes Shalala. "In some areas of our nation, patients wait five times longer or more for an organ than in other areas. Where waiting times are the shortest, organs may go to patients who are less ill, while at some moment, in areas where patients wait longer, organs often are not offered to patients with greater medical need."
The current allocation policy for the Organ Procurement Network is to give preference to local use of organs regardless of a more urgent need for the organ elsewhere. In 1996, for example, more than 60% of livers were used in the local area where they were procured, and more than 50% went to patients who were not sick enough to be hospitalized, according to Organ Procurement Network data.
Shalala's letter does not outline a new policy, nor does it provide a time frame of when one would be published. Transplant specialists predict the new policy would stipulate that all organs would be distributed through a national list of patients ranked by medical need. (A copy of the letter is inserted in this issue.)
And while the policy change would affect procedures in the nation's 124 liver transplant programs initially, concerns are the policy then would be enforced for other procedures. "If [the policy change] goes forward, it would impact more than livers," warns John Rabkin, MD, chief of liver transplantation at Oregon Health Sciences University in Portland.
"The issues addressed by Secretary Shalala are mostly associated with the procedures surrounding liver transplants," adds Joel Newman, spokesman for the Richmond, VA-based United Network for Organ Sharing (UNOS). "Unlike other organs, with the exception of hearts, liver transplant procedures are performed under a sense of urgency for the benefit of the donated liver and the recipient."
Coming on the heels of Shalala's comments was a study confirming that certain groups do in fact wait longer for organs. A study published in the March 5, 1998, journal Medical Care reported that women, Hispanics, and Asians wait longer than most Caucasian men for organ transplants.
Researchers from The Johns Hopkins School of Public Health in Baltimore looked at more than 7,400 patient records from the UNOS/Organ Procurement Network liver waiting lists. Records from a 27-month period were examined. The study found that women waited an average of 110 days to receive a liver, 19 days longer than men. African-Americans didn't wait significantly longer than Caucasians, but Asian-Americans waited an average of 138 days. Hispanic-Americans waited an average 107 days. (See tables, pp. 38-39.)
About 55,000 people are on a national organ transplant waiting list, according to UNOS. The organization estimates that about 11 people die each day while waiting for a suitable organ transplant. The Organ Procurement Network, administered under contract by UNOS, is a federally mandated volunteer organization.
If the policy changes occur, "the local primacy will be lost, and patients in certain parts of the country will be at greater risk of not getting an organ," Rabkin says. "There will be less local transplantation, and many local programs will be forced to close. The question the policy asks is, `Is there a balance between medical utility and equity?' and Secretary Shalala hints at solving equity concerns, but there's really no uniform agreement on solving the problem. Right now, there is equal access. You list at your local center, but there's a misconception among politicians and government officials that patients list at multiple centers, and that just doesn't happen."
In fact, the opposite effect will occur if the policy is changed, he says. The policy would disadvantage the medically needy or indigent. The Medicaid population in Oregon, for example, would be at a greater disadvantage because they would have to depend on procurements from within the state, he adds.
There's no doubt that the smaller organ transplant centers will fare a harder time under a national distribution policy, he warns. Under the current distribution policy, organs first are offered to patients locally, then regionally, then nationally. Transplant centers control the network.
"Depending on the local waiting list, our center might have a certain number of patients on a waiting list, but a larger city, such as Chicago, might have as many as a half dozen transplant centers serving several hundred patients," he says.
Larger centers caring for sicker patients are supporting a change in the distribution policy, he points out. For example, the University of Pitts-burgh Medical Center, which has one of the largest transplant programs in the nation, is lobbying for a change to a nationalized system based on medical need. Larger transplant centers also have the backing of several national organizations, including the American Liver Foundation in Cedar Grove, NJ.
"Sometimes patients may live near a transplant center, but that center may not have the expertise to treat a patient's particular condition, or they may not have the financial means to list at another center. Whatever the reason, data from the Organ Procurement and Transplantation Network show that one in four patients travel outside their state of residence to undergo liver transplantation," says Lisa Rossi, spokeswoman for the University of Pittsburgh Medical Center.
Another adverse effect for patients will be poorer outcomes, Rabkin notes. "Under a nationalized system, a patient would, in effect, have to get sicker before they could get an organ. And outcome data for sicker patients usually have higher rejection rates."
Some states are taking a stronger approach to ensuring that local patients get access to organs. In Louisiana, the legislature signed into law a measure that ensures all potential patients are screened for an available organ before it is made available to centers outside the state, says Louise M. Jacobbi, executive director of the Louisiana Organ Procure ment Agency in Metarie.
State legislators in Maryland are tackling the organ shortage by requiring more action on behalf of hospitals. The Maryland General Assembly is expected to pass the William H. Amoss Organ and Tissue Donation Act in its current session. The bill requires hospitals to contact the appropriate organ, tissue, or eye recovery agency on or before each death in the hospital.
Despite the controversy over the distribution policy, transplant experts agree on one component of the process: There's more work to be done in the area of increasing the level of organ donations.
"We should be focused on creating and operating transplant centers that serve the local community. If we accomplish that task, we won't have a waiting list that exceeds the available supply," Rabkin says. "This, of course, can be accomplished, provided the procurement efforts match the demand for organs."
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