Thursday, July 29, 2010

Jackson’s Bill Now Law

Major legislation to increase organ donation in Massachusetts was signed into law today by Governor Patrick. Known as “Jackson’s Bill”, I authored the legislation in collaboration with the family of 4 year old pediatric organ transplant recipient Jackson Altieri, the New England Organ Bank and others. At the bill signing, Jackson, his mother Nicole Altieri, and grandparents Fran and Rebecca Aliberte were in attendance alongside Tammy Silveira and John Nicastro, J.J. Nicastro’s mother and father.

Today’s signature by the Governor culminates months of intense work by courageous family members who have turned loss, hardship and suffering into a law that will save and transform lives. We have been led by the indomitable spirit of 4-year-old Jackson Altieri to a new place in the history of Massachusetts, one in which our organ donation laws are stronger and the chances that a child will be lost waiting for a transplant are less than ever before.

Nationwide, there is a serious deficiency of organs available for donation. As of June 21, 2010, more than 108,000 people were in need of an organ, according to the United States Department of Health and Human Services, with less 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. This bill would take several steps to increase adult donor rates, including:

 Establish a means to register as an organ donor when renewing a registration or license online.

 Includes an option to become an organ donor on all registration renewals mailed out by the Registry of Motor Vehicles.

 Adds on license and registration renewal forms an optional donation of no less than two dollars to the Organ and Tissue Donor Registration Fund.

The bill stems from the work of Jackson’s parents and grandparents to improve the odds for children who need donated organs to survive. Jackson’s story, in conjunction with that of fellow Gloucester resident J.J. Nicastro, brought together the Cape Ann community and raised statewide awareness of the need for Massachusetts to do better in terms of pediatric organ donations.

While Jackson is now doing well, J.J. 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.

In 2007, the Cape Ann community mobilized to support both of these boys with blood drives, get well cards, charitable fundraising and a benefit concert at Gloucester High School’s Newell Stadium, known as the “Concert from the Heart”.

Pediatric organ donation rates are particularly difficult to raise, 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. To address these concerns, the bill repurposes and revitalizes an outdated administrative advisory council as the Advisory Council on Organ and Tissue Transplants to develop strategies to increase donation rates and establish a website within the Department of Public Health to raise awareness of the need for organ donors, with a special focus on increasing pediatric donation rates. The council would also be responsible for setting concrete goals and baselines for pediatric and adult organ donation rates in Massachusetts.

An Act Establishing an Organ and Tissue Donor Registration Fund (S.2515) was co-sponsored by Senator Thomas McGee (D-Lynn), Representative Ann-Margaret Ferrante (D-Gloucester), and has received strong support from the family members of pediatric organ recipient Jackson Altieri, the Nicastro family, Senators James Timilty (D-Walpole) and Steven Panagiotakos (D-Lowell), former Representative Anthony Verga (D-Gloucester), and the New England Organ Bank.

The original bill was also co-sponsored by Gloucester City Council President Jacqueline Hardy, U.S. Senator Scott Brown (R-MA), Senators 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 Representatives Katherine Clark (D-Melrose), 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).

Below is a copy of the signed bill.

07292010 Chapter190Actsof2010