Living liver donors offer hope to those waiting for transplant, as advocates push for donor protections

She juggled two jobs while battling a pair of autoimmune diseases and started a campaign to find a liver donor. But Amy McGorry isn't done focusing attention on the growing crisis of liver disease and the need for life-saving organ donation.

Later this month, the Sea Cliff resident will join others from Long Island and across the country whose lives have been impacted by liver disease to meet with lawmakers on Capitol Hill, call for better treatments, access to care and safeguards for living organ donors.

Organizers from the American Liver Foundation asked McGorry, a longtime television reporter now working at NewsdayTV, to attend and share her personal story. Tissue damage from her long-term bouts with autoimmune hepatitis and, later, primary biliary cholangitis, have left her in an urgent search for a new liver. Because the waitlists are so long for organs from a decreased donor, her best chance is finding a person willing to donate a piece of their liver.

A growing option

Liver transplants with organs from living donors hit an all-time high in 2025, at 709, according to data from the Organ Procurement and Transplantation Network, which maintains a national organ registry. The majority of liver transplants — 11,635 — still took place with organs from deceased donors, but they've become a growing option for people who may never reach the top of the transplant list.

While most people have heard of transplanting a kidney from a live donor, few know a person can donate a piece of their liver to someone in need. A few months after the surgery, the liver will regenerate back to its regular size in both the recipient and donor.

Live liver donation surgery is now done with robotic and laparoscopic surgery, allowing for smaller incisions and faster healing times, said Dr. Russell Rosenblatt, a transplant hepatologist at Weill Cornell Medicine and NewYork Presbyterian, where McGorry’s transplant doctors are located.

"And you have the opportunity to save someone’s life," he said. "It’s just an incredible honor."

OPTN data shows about 9,000 people in the United States. are on the waiting list for a liver. About 1,700 die each year waiting for a liver transplant, according to Johns Hopkins Medicine. 

Living donations allow patients to look for a donor on their own — provided they pass health screenings and are a blood type match. 

"Going through this harsh reality of facing a disease and needing a liver when the supply does not meet the demand made me realize I had to do something," McGorry, 56, said of her decision to get involved with advocacy as she searches for a live donor. "I want others living with PBC to feel supported and hopeful and together."

Protecting live donors

While in Washington, D.C., McGorry and other advocates will focus on the Living Donor Protection Act, which is currently before the Senate. The bill states insurance carriers cannot "deny, cancel, vary premiums, or otherwise impose conditions on policies based on an individual's status as a living organ donor," according to a summary on Congress.gov.

In addition, the bill deems recovering from organ donation surgery "a serious health condition that entitles eligible employees to job-protected medical leave."

While New York provides living organ donors reimbursement for travel, lost wages, dependent care and medical care not covered by insurance, that’s not the case in other states, said Valerie Rinck, National Director of Advocacy for American Liver Foundation.

"It’s amazing for the State of New York to have such robust protection, but unfortunately state level protections are inconsistent and leave significant gaps for a lot of our patient population that are seeking living donors," Rinck said. "A federal Living Donor Protection Act establishes that nationwide baseline to ensure donors are not penalized for donating."

While New York State employees are entitled to paid leave for organ donation, protections for private sector employees are far less consistent, she said. While some individuals may qualify for job-protected leave under the Family and Medical Leave Act, coverage is not always clear or sufficient for living donors.

"Right now, there’s this big gray area," Rinck said.

Living with hepatitis

McGorry was one of six kids in a family that lived in Bayside and spent every summer on Shelter Island. She attended Stony Brook University, was a cheerleader, studied physical therapy and dreamed of being a meteorologist on television.

She worked as a physical therapist while honing her chops at local television stations before spending 17 years at News12. McGorry jokes that her physical therapy work "supported her TV habit."

Instead of focusing on meteorology, she became a general assignment reporter and enjoyed a wide variety of assignments.

"I’ve covered the Super Bowl. I’ve covered the World Series," she said. "I’ve covered every snowstorm, which was my passion."

Few people knew McGorry was also quietly trying to fend off autoimmune hepatitis, which she had been diagnosed with after college. About 12 years later, doctors told her she had primary biliary cholangitis, a disease of the bile ducts that causes them to scar and narrow. This condition makes it difficult — and eventually impossible — for the liver to handle its many functions, which include filtering blood and helping digestion.

McGorry focused on eating healthily, exercising and taking her medicine, but it wasn’t easy. The medications suppressed her immune system, making her more susceptible to colds and other illnesses.

"I didn’t want to live under that umbrella," McGorry said. "I want to be a reporter. I want to connect with people. I want to be happy. I was able to hold that for decades until this past summer."

A series of health episodes in 2025 led to the discovery in February that McGorry’s condition had worsened and she needed a new liver. She was shocked.

"I never thought I would get to this point," she said.

As sick as she is, McGorry’s illness does not place her higher on the transplant waiting list due to a formula that calculates her model for end-stage liver disease, or MELD score.

"It’s based solely on lab tests," said Rosenblatt, who is also medical director of Living Donor Liver Transplantation at NewYork-Presbyterian and Weill Cornell Medicine.

"And it's not going to be perfect for everyone," he said. "There are some people who are very sick, suffering tremendously, have horrible symptoms and are at a very high risk of dying, but the MELD score doesn’t capture that appropriately."

McGorry started searching for a donor, posting on social media and connecting with groups like the American Liver Foundation.

The response has been positive, with people reaching out from all over, she said. But it's still unclear if any of them will be a match for McGorry’s O positive blood and pass the screenings.

Need for more donors

More than 108,000 people in the United States are waiting for an organ transplant, according to the United Network for Organ Sharing. In order to meet that demand, experts say there has to be an overall increase in donors.

"We’re being more aggressive with deceased donations," said Dr. Nabil Dagher, a transplant surgeon and director of the Northwell Transplant Institute. "Organs you wouldn’t have transplanted before, you transplant now. [Donors] that did IV drugs, for example, we were worried we were going to give [patients] HIV or Hepatitis C."

But better testing methods showed the organs once considered high-risk were safe.

Dagher said patients with primary biliary cholangitis are "underserved" by the MELD scoring system because their scores don’t get very high until they are very sick.

"If you have a common blood type and your score is low, then you have 100s of patients ahead of you," he said. "The live donor option is very important. ... Those folks with low scores really have few other options."

A decade ago, about 22% of New Yorkers signed up to be organ donors. Now it’s about 53%, said Aisha Tator, executive director of Donate Life New York State. But it’s still not enough. There are about 8,000 people waiting for a transplant in the state.

Tator said New York has one of the highest rates of living donation in the country because it has the third-highest need for transplants. 

Along with asking people to sign up when they get their driver’s license, Tator said the organization has worked with legislators to add it when people register to vote, obtain certain state licenses, and as part of electronic health records.

"Putting this question in all of these various different settings ... it’s creating a culture of donation," she said. "This is something very normal that over 8 million New Yorkers have done."

Barriers to early diagnosis

Patty Medina, a community health worker from Queens, has another personal story to tell lawmakers when she heads to Washington with McGorry and other advocates from the American Liver Foundation. 

Medina’s grandmother Paula de la Cruz did not find out she had liver cancer until doctors told her she had two months left to live. Growing up in California in a family of Mexican immigrants, Medina often served as the translator for her grandmother and mother. Words eluded her when doctors delivered her grandmother’s prognosis.

"My whole world was shattered. ... She was our matriarch and I had to tell my mom that her mom is dying," Medina said. "I reflect back on that moment because I realized this was the result of facing significant systemic barriers to early diagnosis, treatment, and having that culturally responsive care."

The message she hopes to deliver to lawmakers is for the need to invest in liver disease prevention, early detection and equitable access for health and transplants.

"I have seen firsthand how language barriers, limited resources and just delaying care can impact patient outcomes," Medina said. "So why not invest now? Why not make policies that are going to strengthen and create healthy communities?"

By Lisa L. Colangelo

lisa.colangelo@newsday.com@lisalcolangelo

Lisa joined Newsday as a staff writer in 2019. She previously worked at amNewYork, the New York Daily News and the Asbury Park Press covering politics, government and general assignment.