WASHINGTON – Sally Roberts Mayer and Stanley Mazur are in a race for their lives — a race for which they mostly have to sit and wait.
Both are on Maryland’s waiting list for a kidney transplant. Both have relatively rare B-positive blood, making a match difficult.
Mazur, a Baltimore resident who undergoes four hours of dialysis every day, can do little but wait. Doctors told him when he signed up for a kidney two years ago that he could expect to spend three to five years on the list for a compatible kidney.
Mayer, too, was told she faces a three- to five-year wait. But the Arizona woman is doing everything she can to “beat the clock.”
The 51-year-old Phoenix resident has her name on patient waiting lists at four of the nation’s top transplant centers, including Johns Hopkins Comprehensive Transplant Center in Baltimore.
She carries a cell phone, a pager and flight itineraries with her at all times and even knows how to charter a private flight in under 30 minutes, just in case she can’t get on a commercial flight fast enough.
“If they call me, I have a bag packed and I’m ready to go. I could be out of here in half an hour,” she said.
Mayer and Mazur’s stories cut to the heart of a heated debate about the national organ allocation system, which tries to link organs first with patients in the immediate area, without regard to the needs of patients elsewhere.
For Mayer, that means getting on waiting lists in several places and doing everything she can to get herself to a compatible kidney wherever it is found.
For Mazur, it means hoping that a compatible kidney will come to him. But his wait is complicated by the fact that he has no priority over the patients from across the country who flock to Maryland for the expertise of its transplant centers at Johns Hopkins and the University of Maryland.
While organs are often “stopped at the border,” according to Health and Human Services Secretary Donna Shalala, there are no limits on how many states a patient can register in and no priority is given to local patients on a waiting list.
The organ allocation system, which is currently under review, has created gaping discrepancies in transplant waiting times, as shown in a report released by the United Network for Organ Sharing in late January. Patients in Maryland, for example, face some of the longest waits in the nation, according to the report.
“The system is really crazy,” said Mazur, who is 117th in line for a new kidney in the Baltimore area after two years on the waiting list.
“It’s very upsetting when I see that some places, like Utah, have waits of 45 days. If I didn’t have to support my family, put my son through school, maybe I’d move to Utah,” he said. “If I have the time to take six months, move to a state, establish residency, fly back and forth, then I can get a kidney?”
Mazur hopes that the United Network for Organ Sharing will relax geographic criteria when it submits its new rules for organ allocation in October, and make it easier for organs to go to patients outside the area where they were donated.
Mayer likes the policy the way it is. She thinks it would be a bad idea to begin shipping organs across country for transplant.
“If you talk to doctors, and unfortunately I talk to them quite a bit, they say the longer an organ is preserved, the less chance it has of working for a long time,” she said. “My doctor (in Los Angeles) told me that he wouldn’t want me to have a kidney that had traveled more than eight hours.”
Mayer also points out that, for kidneys, the national allocation policy is slightly different. While they are still allocated locally first, a perfect donor match trumps that policy and the kidney goes to the patient regardless of where he is registered and regardless of how long he has been waiting.
Mayer, who suffers from polycystic kidney disease, defends her decision to sign up at several transplant sites, including Hopkins. She points to a special Hopkins program for patients who suffer from her disease, which is hereditary, that allows family members who have the disease to split compatible kidneys.
“Wouldn’t you want to go to the best place you could?” Mayer asked. “At Hopkins, they’re doing more experiments, many more innovative things,”
Mazur, who suffers from end-stage renal failure, said he bears no ill will to patients like Mayer who come here from out of state for treatment.
“Why wouldn’t you want to go to Hopkins?” he asked, citing the center’s achievements. But if a facility attracts more patients, he said, it should be allowed to get a greater share of the organs harvested from around the country.
Mazur does have at least one advantage over Mayer in the wait for a kidney: Because he is already on dialysis, he collects points for every day that he is on the waiting list while she will not collect points until she has to begin dialysis.
But those points are hard-won points for a man who describes himself as “desperate” and realizes his time is running out.
“The doctors at Hopkins are trying to keep me alive so I can actually be an organ recipient,” he said.