There are more than 3,000 people in need of a kidney transplant in Massachusetts, and they wait an average of up to five years to get one. Now patients and advocates expect that wait times will likely increase because of a new national policy set to go into effect Feb. 13.
That worries Julianne Beauregard, 54, of Wakefield. Beauregard has had kidney problems most of her life and has been on dialysis for several years. In July, she had to switch from getting dialysis a couple times a week to every night as she sleeps.
“I wake up every night since I’ve been on this machine," she said. "It’s like a suction or vacuum internally. I would wake up and my jaw was clenched. I normally don’t sleep that way, but it makes sense if you are waking up in pain.”
Beauregard also has to take 21 pills a day, watch what she eats and check her weight and blood pressure constantly.
She thought this lifestyle might be nearing its end: Her doctors at Massachusetts General Hospital told her she’d get a transplant in three to four years. It’s been more than four.
“You’re not in the marathon for 26 miles — maybe it will be 35 miles and then you get to 30 miles and maybe it will be 50 miles, just keep running,” she said.
Under the current policy, donor kidneys stay within 11 local regions around the country. But the new policy will allocate kidneys up to 250 nautical miles from a donor hospital, which will place New York City in the New England donor area.
Since allocation is heavily based on how long a patient has been waiting and New York has a lot more people who’ve waited much longer for a kidney, medical experts predict that New York City patients will likely scoop up most available donor kidneys in this region.
Many transplant doctors in Boston expect to have to tell patients like Beauregard that the wait will be longer. Melissa Parente, executive director of surgery at Tufts Medical Center, said a test simulation applying the new policy to local organs showed that will likely be the case.
“Many, many, many of them [organs] were leaving for New York, New Jersey. And so patients that are at organ transplant centers in New England were much further down the list than we would normally see them,” she said.
Parente thinks policymakers overlooked some major geographic challenges.
“It’s a bit of a uniformed policy, although the country is not uniform,” she said. “So New England is surrounded by the ocean, which makes us a little bit different than somewhere in the midwest. The 250 nautical miles if you are in the middle of the country means that you truly do get 250 nautical miles. But obviously, for us, we are not getting donors out of the middle of the Atlantic Ocean.”
With the global pandemic already slowing things down, Beauregard thinks that adding a new policy in the midst of all this that will likely add wait time is frustrating.
"People that are in a situation like me, and they have other medical issues too, how long can they bear that?” she said.
But many have argued for years that the current system is unfair. The availability of donor organs in the 11 regions varies widely depending on how many patients suffer from kidney disease, how many are on the transplant list and how many donor organs are recovered.
The United Network for Organ Sharing, the nonprofit organization that manages national organ distribution, is hoping this new policy will address these geographic inequities.
“In the current system, we have artificial boundaries constructed that have led to an imbalance of organs across the country," said Dr. Vince Casingal, who chairs the group’s kidney committee. "This unfairness is seen based on how long someone waits, potentially just down the road from someone else."
The goal is that over the next few years, wait times across the country will be the same.
There are 57 government contracted Organ Procurement Organizations who are tasked with recovering donated organs and pairing them with patients. Under this new policy, some OPOs will benefit from it and others will suffer like the one in New England.
“We want to serve the patients that are waiting, wherever they are,” said Alexandra Glazier, CEO of the New England Donor Services, the OPO that serves Massachusetts. “So we try to take a nationwide view of allocation policy and recognize that change is needed and can be painful. Hopefully the end result is of value to patients everywhere.”
But others worry that under this new policy, this goal won’t ever be achieved because the non-profit agencies that procure organs are all very different. The one in New York City, for example, has nearly lost its contract for poor performance numerous times.
If OPOs aren’t all performing the same, it’s like a school project where one group does 90% of the work, another does 10% and the underperforming group gets the “A,” said Dr. Jay Fishman, the associate director of the transplant center at Massachusetts General Hospital.
“I have friends and colleagues in New York," Fishman said. "What they are saying is that I don’t have enough organs for my patients. And they are right. Organs are supposed to be a national resource. But to make it fair, everyone has to work equally well.”
Until these inequities in productivity are fixed, not much will change, said Greg Segal, who co-founded the advocacy group Organize after watching his dad wait five years for a heart transplant.
“The underlying structural problem is that OPOs are so grossly inefficient that we have been unnecessarily constraining the supply and then getting in fist fights about who should access that supply,” Segal said. “OPO reform is going to address the overall problem, and that’s where I wish policymakers would spend more of their time.”
Many also think expanding the geographic area for kidney distribution will add even more logistical issues to an already extremely complicated process, especially during a global pandemic, possibly resulting in more lost organs.
Everyone agrees, though, that with 13 people dying every day waiting for a kidney, there isn’t an easy solution to allocation. Changing distribution doesn’t add any organs to the nation’s severe shortage.
Julianne Beauregard knows this statistic firsthand. She has lost several family members to kidney disease. She worries that the new policy will only make matters worse.
“You really don’t know what can occur in six months, a year, two years extra," she said. "For a lot of people, they unfortunately won’t make it. That’s a horrible feeling to have just so that you can make it, in theory, more equitable for people down the road.”
An ongoing lawsuit seeks to postpone the new policy until the pandemic is over.
