In January 2011, Randy Rosiello, whose son Matthew was born with a rare liver disease, was "watching [her] child die," she told ABC News. "He went from 120 to 85 pounds in a three-month period."
Matthew Rosiello, now 23 and a D.J. in Staten Island, N.Y., was born with biliary atresia. The family, said his mother, spent "every holiday, birthday, anniversary in the hospital." Because Matthew spent so much time there, Rosiello became a nurse.
While biliary atresia often means that a child has a liver transplant before he or she enters kindergarten, Matthew had received no such transplant. One of the problems? He lived in New York state.
For Matthew to survive, figured his mother, they would have to move.
According to a standardized score, known as a MELD score, even in January 2011, Matthew's liver was not yet "sick" enough to put him next in line for a transplant. The score is based on three laboratory findings – one a measure of kidney function, the other two measures of liver activity and function – which taken together provide a rough summary of the ability of these organs to keep the body functioning. The score is used in 11 U.S. regions to determine who gets the next precious organ.
In Matthew's case, however, his relatively low MELD score belied the seriousness of his condition. Biliary atresia does not often lead to kidney dysfunction, so the MELD score tends to be lower. But even though his MELD score was not high, Matthew had recurrent infections from his liver disease, worsening liver function and health that would only be fixed with a liver transplant.
Also working against Matthew was the fact that the MELD threshold for getting an organ can differ dramatically from one region to another. New York happened to be among the states with the steepest criteria to obtain a liver, according to the New York Organ Donor Network, a nonprofit, federally designated organ procurement organization (OPO) that recovers organs and tissues for transplantation. The network notes that the state ranks No. 48 out of 50 in terms of the number of living donors per capita. In addition to the state's low donor rate, it also has many people who need organs.
For Matthew, who in 2011 was sicker than he'd ever been, it would mean a wait in New York for up to five years.
"His MELD score was still not high enough for him to obtain a liver transplant in New York," Randy Rosiello said.
There was one last hope for Matthew – moving. Dr. Leona Kim-Shluger, Matthew's doctor at Mount Sinai Medical Center, advised the family to list his request for a transplant in other states to increase his chances. Matthew was placed on transplant lists in Connecticut and Ohio, two regions that have both shorter wait times and experienced transplant centers.
The family chose Ohio.
It was an expensive proposal. Matthew, along with his family, reached out to his New York community through the news media and fundraising efforts. It worked: With more than $30,000 to make the move possible, they packed their bags and made their first trip to Cleveland. Randy Rosiello quit her job, and her husband took multiple days off work to help.
The Rosiellos were lucky in one sense: They could afford to relocate. For others, such a move would be financially prohibitive. "I think it's disgusting that you have to literally sell your home or die waiting," Randy Rosiello said.
In the bigger picture of organ donation, the conversation about fairness has been a common refrain. Complicating this picture is the cold, simple math – more people need an organ than there are organs to go around. As of May 2013 there were 15,826 patients awaiting transplant in the U.S., according to Anne Paschke, a spokeswoman for the United Network for Organ Sharing, a nonprofit that manages the country's organ transplant system. Last year, only 6,256 patients got the organ they needed – and 1,497 patients on the waiting list died.
Medical experts' continuing mantra is for more in the public to sign up as organ donors. Special efforts, such as New York's "Hate-the-Wait" campaign launched during Organ Donor Awareness month (April) to further encourage organ donation; one of the messages of the campaign is that in New York alone, every 15 hours a patient dies waiting for an organ. And a Johns Hopkins study published in June noted that since Facebook included a link to organ donation registries and put in an "I'm a Donor" option, registration climbed dramatically.
But pragmatic voices point to the fact that there will simply never be enough organs for everyone in need through current means. Allocating them fairly continues to be a burden that rests squarely on the shoulders of the UNOS. Recently, the Department of Health and Human Services has urged this federally governed organization to come up with a way to broaden the system so that organs can move more easily across state lines and between different regions of the country. This effort has been ongoing since 2000 – but organ sharing across state lines has only been implemented for the very sickest patients on the waiting list. Most recently, UNOS met in March to discuss possible solutions to address the huge disparity in deaths and transplant rates across regions, and it is trying to come up with a "new map" to address this issue.
Meanwhile, for Matthew Rosiello, crossing state lines paid off. After multiple trips, tests, and even preparatory surgery, he was finally cleared for transplant and was placed on Ohio's list. On July 7, 2012, he and his family got the good news – a liver was available, and he received the transplant at the Cleveland Clinic. Matthew, now 23, is a DJ back in Staten Island, N.Y., who has made it his "life's mission" to educate others about liver disease and encourage organ donation.
"Matthew was given the gift of life," Randy Rosiello said. "That gift should not be wasted."
Matthew participates in awareness effort through Mt. Sinai, in New York City. "If more people were organ donors," he says, "there wouldn't be so many people waiting on the list and dying each day."