Massachusetts Gov. Deval Patrick signed into law Thursday “An Act Establishing an Organ and Tissue Donor Registration Fund,” a bill supporting the expansion of organ and tissue donation efforts in Massachusetts, which was developed in collaboration with local lawmakers and families committed to making a difference for those in need of transplants.
According to Patrick, the new law will help increase awareness about the importance of organ and tissue donations, as well as facilitate donor registration.
“This bill is a major step forward in addressing the critical need for tissue and organ donations in Massachusetts,” said Patrick. “Organ and tissue donations save lives, and I am proud that Massachusetts will be expanding its efforts to educate the public about the importance of this issue.”
The legislation establishes a fund that will accept public and private gifts, grants and donations that will support donor registration and revitalizes the Department of Public Health’s Advisory Council on Organ and Tissue Transplants and Donations. The Council will coordinate the efforts of all public and private agencies concerned with organ transplantation, advise the commissioner of the Department of Public Health and the director of organ transplants, and develop strategies to increase organ donation. The bill also directs the Council to create a website with educational materials about organ donation.
Additionally, the bill will enable Massachusetts residents to register as organ donors online through the Registry of Motor Vehicles website.
The bill stems from the work of the family of 4-year-old pediatric organ transplant recipient Jackson Altieri, fellow Gloucester resident J.J. Nicastro, and Laura Linehan from Melrose. Their stories raised statewide awareness of the need for Massachusetts to improve the odds for children who need donated organs to survive.
While Altieri is now doing well, Nicastro was not as fortunate. Living from day to day through the use of an artificial heart, he succumbed to the effects of myocarditis before a heart became available for transplant.
Linehan was born with tyrosinemia and had received a donated liver when she was 2 years old. However, during the transplant procedure, she was infected with hepatitis C from a blood transfusion and required a new liver. Linehan and her family moved to Jacksonville, Fla. because the waitlist was shorter there than in Massachusetts. She eventually received a new liver, but due to the extensive amount of time that passed, her body was just too weak to survive the transplant surgery and she died later that evening at the age of 20.
“The passage of this bill by the Senate today reflects the tireless efforts of Jackson’s parents and grandparents to increase the odds that no child’s life will hang in the balance of a protracted wait for a donated organ,” said sponsor state Sen. Bruce Tarr, R-Gloucester. “Their commitment to making a difference is exemplary.”
Nationwide, there is a serious deficiency of organs available for donation. As of June 21, more than 108,000 people were in need of an organ, according to the United States Department of Health and Human Services, with fewer than 7,000 transplants performed in a preceding three-month period. Massachusetts is an unfortunate laggard in organ donation rates; while some states have organ-donation rates over 70 percent, Massachusetts is below 40 percent.
Pediatric organ donation rates are particularly difficult to raise, sponsors noted, both because parents are uncomfortable confronting the possibility of their child’s passing and because no commitment to donate a minor’s organs is legally binding. One of the responsibilities of the revitalized Advisory Council on Organ and Tissue Transplants would be to set concrete goals and baselines for pediatric and adult organ donation rates in Massachusetts. The new DPH website will also have a special focus on increasing pediatric donation rates.
Richard S. Luskin, president and CEO of New England Organ Bank said, “The passage of this bill would be an important step forward in our shared goal of ending deaths on the transplant waitlist. Over 300 New Englanders died on the waitlist last year alone, and that is unacceptable. This legislation allows for new and simple ways for individuals to designate themselves as donors so that their wish to donate may be honored and that more lives be saved.”
“Organ donor legislation is a major life-giving piece of legislation, which will give hope to many,” said state Sen. Susan C. Fargo, Senate chairwoman of the Joint Committee on Public Health.
Added state Sen. Thomas McGee, D-Lynn, one of the bill’s co-sponsors with Rep. Ann-Margaret Ferrante, D-Gloucester, “This bill goes a long way to encourage organ donations and raise awareness on the issue. Because of the tireless efforts of the families involved, legislators were able to work together to craft this important piece of legislation.”
Noted lead sponsor Rep. Katherine Clark, D-Melrose, “The creation of an organ donor registration fund will literally be lifesaving for people on the organ-transplant waitlist. There are many patients waiting for lifesaving transplants and this law will provide the necessary financial, organizational, and educational means to increase the number of donors in Massachusetts.”
Agreed Rep. Jeffrey Sanchez, House chairman of the Joint Committee on Public Health, “With the passage of this law, there will be more organ donors to help patients have their prayers answered in a shorter amount of time.”
Other co-sponsors of the original bill included Sens. Richard Tisei, R-Wakefield, Michael Knapik, R-Westfield, Robert Hedlund, R-Weymouth, Anthony Galluccio, D-Cambridge, Susan Fargo, D-Lincoln, Karen Spilka, D-Ashland, Steven Tolman, D-Brighton, Robert O’Leary, D-Barnstable, Susan Tucker, D-Andover, Richard Moore, D-Uxbridge, Stephen Brewer, D-Barre, John Hart, D-Boston, and Brian Joyce, D-Milton; and Reps. Mary Grant, D-Beverly, James Vallee, D-Franklin, Cory Atkins, D-Concord, Kay Khan, D-Newton, Bradley Jones, R-North Reading, Peter Kocot, D-Northampton, Theodore Speliotis, D-Danvers, and Christine Canavan, D-Brockton.