HARRISBURG - Monica Forte sat in a House hearing room Tuesday, her son Tony wired to an IV in a backpack beside her, and tearfully begged lawmakers to pass a bill to update Pennsylvania's organ-donation law.
"There are not enough kids as pediatric donors," Forte told a legislative panel.
Tony, who turns 9 next month, was born with an intestinal disease and is on the waiting list for a stomach, liver, and small intestine transplant.
He is one of 200 children on the state's waiting list for organ transplants.
Forte says Tony also is, literally, the poster child for an organ-donation group pushing a proposal to create consistency among county coroners across the state and expand education about organ donations.
The legislation has touched off a battle between coroners and families of those needing transplants who are fearful that time will run out before their loved one gets the organs he or she needs.
Coroners fear the legislation could impede their ability to conduct investigations by giving more power to organ-procurement entities in cases of death.
"They believe that the bill goes a little too far in terms of taking away the jurisdiction of the coroners to investigate these deaths," Susan Shanaman, a lobbyist for the Pennsylvania State Coroners Association, told the House panel.
Howard Nathan, president of the Philadelphia-based Gift of Life Donor Program, which coordinates organ donation in eastern Pennsylvania, said the bill does not infringe on the authority of the coroner. Rather, it seeks to create uniform practices among coroners, as most other states, including New Jersey, have done, he said.
The House legislation, similar to a bill in the Senate, also would provide better coordination among hospitals, and expand organ-donor awareness education among high school students and health-care professionals.
Pennsylvania is an "opt in" state, which means potential donors must check a box on their driver's license form to become part of the program. In other states, an individual is considered a donor unless he or she chooses to opt out.
David Freed, the Cumberland County district attorney and president of the state prosecutors' association, said his group is concerned about jurisdictional issues when a crime that results in a person's death crosses county lines and when a family objects to organ donation.
Freed told the Subcommittee on Family Law about a recent case in Clearfield County in which a child's organ donation status became a legal dispute after the body was sent to a hospital in Pittsburgh.
"We believe law enforcement where the crime occurred should have jurisdictional situation," Freed said.
The Pennsylvania Coalition Against Domestic Violence said it wants an amendment that would preclude the perpetrator in a deadly domestic-violence incident from making a decision about his or her victim's organs.
Advocates say children are four times as likely to die because small-size organs are not available.
Forte hopes more awareness will mean the difference for her son, as doctors have told her his prolonged use of intravenous nutrition is taking a toll on his other organs.
"We live by the phone," she said.
BY THE NUMBERS
Pennsylvanians waiting for organ transplants.
of those waiting are children.
organ transplants are conducted annually in Pennsylvania.
people on the waiting list die every year.
Source: Gift of Life Donor ProgramEndText