Restoring Life
Donate Life PA Act updates state organ donation law
IDonate Life PA Act updates state organ donation law.
When Rosalie Hetrick realized it could be years before she’d receive a kidney through the national waiting list, she resolved to take matters into her own hands.
A longtime carrier of polycystic kidney disease, Hetrick, who lives in Norristown, was added to the transplant list in 2015 when her kidney function dropped below 20 percent. Even so, it wasn’t long before her doctor started talking about dialysis.
“I thought the plan was to get a transplant?’” Hetrick asked, confused.
“Not if you don’t look harder for a donor,” her doctor replied. “That may not happen.”
The average wait time for a kidney from the national deceased donor waiting list is five years. Sometimes it’s less, sometimes it’s more. Suffice it to say, someone in Hetrick’s position can never be sure when their number is going to get called.
This real-talk from her doctor gave Hetrick “the boost” she needed to look outside of the list. She asked friends, family, and acquaintances for a kidney. Eventually, “I put it on Facebook,” she said. Where better to issue a widespread call for help?
As luck would have it, a Facebook friend by the name of Ann-Marie Hulstine answered that call and offered a kidney to Hetrick. The transplant operation took place in February.
“When I put it out there, Ann-Marie didn’t hesitate, and she didn’t hesitate during the entire process. It was kismet, or the grace of God,” said Hetrick. “I have not found a way to tell her how grateful I am. I don’t know how you thank somebody for giving you life again.”
Hetrick’s story is inspiring, emotional; it’s a tearjerker about human kindness and life restored. But her story also hints at a growing problem in the U.S. According to government statistics, more than 114,000 Americans are currently on the ever-growing organ transplant waiting list—and they’re dying at rates of roughly 20 per day.
With the recent passage of a new law, state legislators are aiming to tell a different story, one where more people register as organ donors so that fewer people are waiting years for a life-saving transplant (or resorting to a Hail Mary plea on Facebook to find one).
The Donate Life PA Act, which passed unanimously in the House and Senate at the beginning of October, aims to increase the organ donor pool in Pennsylvania, mostly through increased awareness and donor registration opportunities.
For one thing, the new law “provides for all high schools to have access to a model curriculum to teach teenagers about organ donation and transplants,” said Howard M. Nathan, CEO of Gift of Life Donor Program in Philadelphia.
By educating students—grades 9 through 12—the hope is to inspire them to register early on. Students can register to be organ donors when they’re 16 with parental consent.
According to numbers from Gift of Life, Pennsylvania currently has around 4.7 million registered organ donors. Of those millions, Montgomery County has roughly 360,000 donors and Chester County hovers in the area of 231,000, Nathan said.
While these numbers seem large, they can be deceiving.
“Organ donation is a somewhat rare event,” Nathan said. “Less than 2 percent of all people who die in hospital” are medically suitable to have their heart, lung, or kidney transplanted. “And it’s not because people aren’t willing to donate; it’s because the number of people who could be donors is small.”
There are vast criteria for deeming an organ viable for transplantation, including a review of the patient’s medical status, past medical history, and the manner of death. Furthermore, the majority of organs extracted for donation come from patients who have been declared brain dead and are being kept alive through mechanical ventilation.
These many necessary requirements tend to take large donor numbers—like 360,000 in Montgomery County—and whittle them down to slivers.
Last year, the Gift of Life Donor Program had 565 donors, which translated to 1,546 organs transplanted. But if you consider the total number of patients currently waiting for organs in Pennsylvania—around 7,300— ”that doesn’t sound like a lot,” Nathan said.
That’s why increasing overall registrants is one of the surest ways of helping patients in need.
“What’s interesting is, when we survey people in general, about 85 percent of the public say they want to be an organ donor,” Nathan said. With about 48 percent signed up in Pennsylvania, that makes for “a gap between the people who sign up and the people who say they want to be donors. We’re trying to make people understand.”
Other provisions under the Donate Life PA Act, which was signed by Gov. Tom Wolf on Oct. 23, include increasing opportunities for adults to register as organ donors. It also ensures a full assessment of organ donation potential by county coroners and health care professionals, with added assurance that any denial of organ donations will be well-documented.
“The coroner has jurisdiction,” Nathan explained. “Even if the individual or family has said yes” to an organ donation, the coroner has authority to deny it. Occa-
sionally, an organ may be turned down for donation due to the needs of a criminal investigation.
“Over the past four years there have been about 40some turndowns,” said Nathan. The new law “allows procurement organizations to have huddles before the coroner turns it down.”
As lawmakers and advocates continue developing new methods of encouraging Americans to register as organ donors, many patients in need are hedging their bets and taking Rosalie Hetrick’s route. They’re looking for living donors wherever they can. They’re beseeching friends, family members, coworkers, and the nebulous hordes of social media.
When asked her feelings on the Donate Life PA Act, Hetrick said she’s especially in favor of the provisions for access to model curriculum in high schools: “I’m all for anything that brings awareness. The more you can shed light on this, the better.”
Rosalie Hetrick diagnosed with polycystic kidney disease, was added to the transplant list in 2015 when her kidney function dropped below 20 percent.