Every year in Pennsylvania hundreds die waiting for an organ. Currently there are more than 8,000 people waiting in Pennsylvania.
Hearing
On Tuesday, organ donor family members shared their stories with members of the House Judiciary Committee in Harrisburg, with hopes of gathering support for The Donate Life Pa Act.
Tony’s story
“That’s my super power, being cute,” said Tony Forte, to a crowd of reporters around him. The 8- year old was diagnosed with a rare intestinal condition that affects his digestive track.
“He carries around a backpack about 18 hours a day. This backpack allows him to be free from tethered to I.V. lines in the hospital,” said Tony’s mother, Monica Forte.
“It really just sucks,” said Tony. “It’s horrible. It feels like 20 pound bricks in my bag.”
Tony could have a normal life. “I’m on a transplant list for a stomach, intestine and a liver,” said Tony.
His mom Monica shared his story Tuesday in front of House Judiciary members and others in a packed hearing. She urged lawmakers to pass House Bill 30, or The Donate Life Pa Act. She wants to see more education and awareness spread so more parents register their children. “There are not many children donors that are Tony’s size, so our purpose is to get that awareness out there,” said Monica.
“When he was smaller he said he wanted to be like Pinocchio. Tony pointed to the nurse and said mommy I want to be just like him. I don’t want to wear these strings,” said Monica as she fought back tears. “For tony to become a real boy, and free of his strings, that will take the transplant.”
Legislation
The Donate Life Pa Act would change Pennsylvania’s organ donation program and require more education regarding donation. Something that could encourage more parents to make their children donors. “With tony, with his billboard and his posters, they are in the state DMVs, but they could be in schools, they could be all over the place,” said Monica.
The bill would also allow a hospital administrator to authorize a gift when no next-of-kin or other close contact can be located.
This is a change that some are worried about. “It gets away from the tradition of gift, there is a gift, and who can give a gift, someone who is related to the donor, not someone who is designated by the state to make the decision,” said Richard Connell, Council to the Pennsylvania Catholic Conference & The Pennsylvania Catholic Health Association.
What the Donate Life PA Act does: [information from Gift of Life Donor Program]
HB 30 maintains the existing requirement that hospitals notify their organ procurement organization (OPO). The referral process already in place in Pennsylvania hospitals does not change at all.
•HB 30 updates the hierarchy of who may make an anatomical gift. Under current law, a healthcare agent or power-of-attorney designated by the decedent is not always authorized to make an anatomical gift. House Bill 30, consistent with the Uniform Anatomical Gift Act, corrects this by recognizing the priority of the decedent’s appointed agent. The bill also specifically recognizes other relatives such as aunts, uncles, grandparents and grandchildren.
• HB 30 provides for early testing for suitability. It provides for the OPO to conduct a minimally invasive blood or tissue test necessary to determine the suitability of a donor, preventing families from being unnecessarily approached regarding donation where a gift cannot be transplanted.
• HB 30 provides for a hospital administrator to authorize a gift. It specifically authorizes a hospital administrator to authorize a gift where no next-of-kin or other close contact of the decedent can be located.
• HB 30 expands membership of the PA Organ & Tissue Donation Advisory Committee. It provides for a member of a community health organization to serve on the board. It also directs that members be appointed in a manner reflecting geographic diversity with input sought from the Hospital Association of Pennsylvania and similar statewide groups.
• HB 30 provides for increased education regarding donation. It directs nursing and medical schools in Pennsylvania to include organ and tissue donation in their curriculum. It also directs the state boards of medicine and nursing to encourage physicians and nurses who have not yet received instruction regarding donation to do so.