Trump executive order aims to increase organ donation
An executive order that President Donald Trump signed Wednesday aims to increase the number of organs available for transplantation and to improve treatment of kidney disease in hopes of preventing the thousands of deaths every year among people waiting for an organ.
Although few details were available about how those efforts would be achieved just yet, leaders of the transplant community in the Pittsburgh region — a major national transplant center that attracts patients from around the country — lauded the president for the moves.
“I think it’s a wonderful thing in a system that’s overdue for revamping,” said Dr. Amit Tevar, director of kidney and pancreas transplants at UPMC. “The things that the government is talking about doing — early referral to transplant, more living donors — having a push to make that happen is welcome.”
The president’s executive order targets three main priorities:
• Increasing the number of living donors by removing financial disincentives to donate a kidney, portion of a liver or intestine by making payments to donors to try to ensure the cost to them is nearly zero, including payments to take off work for the transplant and to recover, and even to pay for child care.
• Shifting the overwhelming majority of kidney disease patients who are treated at dialysis centers — 88% of them — to in- home dialysis that is more convenient for the patient and cheaper for the federal government that pays for it, as well as creating financial incentives to detect kidney disease earlier so patients do not have to go on dialysis.
• Increasing the number of cadaver organs available to be transplanted by better monitoring the 58 organ procurement organizations, or OPOs, around the country that oversee the harvesting and distribution of organs in their regions, and by setting verifiable, federal standards that all OPOs have to meet.
If the federal government is successful in implementing these goals, the government believes it could make 17,000 more kidneys and 11,000 other organs, including livers, hearts and lungs, available for transplant — on top of saving billions of dollars in federal expenditures.
If it is successful, that could put a significant dent in the country’s current waiting list, where about 120,000 people are currently waiting for an organ transplant, 90% of them waiting for kidneys. About 6,000 to 7,000 people on the waiting list die every year before they can receive an organ.
The news of the president’s order came as a surprise to the transplant and donor community.
“This is the first we’ve heard of this,” said Dr. Ngoc Thai, director of Allegheny Health Network’s abdominal transplant program. “But I was pleasantly surprised by this. Anything we can do to increase donations and facilitate better treatment is a good thing.”
Last year, the four Pittsburgh hospitals that perform transplants — Allegheny General Hospital, UPMC Children’s Hospital of Pittsburgh, UPMC Presbyterian and the Veterans Affairs’ Oakland hospital — handled 734 organ transplants among them, a third of the 2,241 transplants performed in the state in 2018.
The Pittsburgh VA would not make anyone available to comment Wednesday.
The Pittsburgh region also is home to the first OPO in the nation, the Center for Organ Recovery & Education, or CORE, which oversees recovery of cadaver organs here.
Susan Stuart, CORE’s executive director, said the organization welcomed the national standards for OPOs.
“I don’t understand the details of how they’re going to do that,” she said, “but I think that’s great.”
But she hopes the standards “are fair and don’t disincentivize OPOs from going after donors who might only have one recoverable organ when metrics [ for that deceased donor] say you should get three organs.”
She said CORE recently recovered just a kidney from a deceased donor that was transplanted successfully into a recipient even though some OPOs would not do that because it hurts their metrics under the current grading system.
The current grading system for OPOs and transplant centers is also out of sync, she said.
Although the grading system gives OPOs higher marks for recovering every available organ from a deceased donor — even if there are flaws with the organs — since the transplant centers are penalized if those same flawed organs are transplanted and don’t survive very long, they often reject those organs, even though it might help a transplant recipient to have the organ even for a short time.
She said CORE regularly deals with this issue of socalled “complex” organs that may be, for example, from a diseased person, because part of CORE’s region includes West Virginia, which has among the nation’s highest rates of people living with obesity, diabetes and hepatitis C.
Revamping the system “is going to be helpful with complex donors,” she said.
One part of the president’s order that could have a dramatic impact is the effort to get health care systems to do more to recognize kidney disease earlier, said Jack Silverstein, a kidney transplant recipient and co- founder of the Western Pennsylvania Kidney Support Network.
“The greatest thing is to not even go on dialysis,” said Mr. Silverstein, 73, who had his transplant 17 years ago. “The problem is, most doctors don’t do the pre- testing [ to detect kidney disease] early enough and don’t get them to a specialist fast enough.”
In the support network — which has nine local chapters and more than 600 transplant recipients, donors and their families who come to talk about common problems — Mr. Silverstein said he regularly hears from people “who find out they have stage 4 [ kidney disease] before they even knew they had the disease.”
It’s at stage 5 that patients are typically placed on dialysis.
Dr. Tevar hopes that the incentives to increase donation — from both living and deceased donors — mean that more people can receive a transplant before they even have to go on dialysis.
“I think the thing we struggle with the most is having early diagnosis [ of kidney disease] and early referral for transplantation,” he said. “Some people don’t see a specialist until it’s time to go on dialysis, and by that point it’s often too late” to stop the progression of the disease.
Dr. Thai said performing more kidney transplants not only is cheaper for the federal government, “we know that patients do much better after a transplant than being on dialysis.”
“They feel better. They can go back to work. And it’s more cost- effective,” he said.
What everyone is waiting for now, in the wake of the executive order, is how it will be rolled out.
There will probably be committees formed to create a system to, for example, figure out the best way to grade OPOs and the best financial incentives to get doctors to detect kidney disease earlier.
“Let’s just hope it happens sooner than later,” Ms. Stuart said.