Progress for Laura’s Law: Organ donation legislation passes in the House

By Daniel DeMaina

Melrose Free Press

February 18, 2010

Organ donation statistics According to the Organ Procurement and Transplantation Network (OPTN), a private, non-profit organization under federal contract established by Congress in 1984, as of Feb. 5, there were 2,859 people in Massachusetts on the organ transplant waiting list. Of those people, 1,878 had been waiting for a year or longer and 527 of those had been on the list for five or more years. Last year, there were 733 organ transplants in Massachusetts. As of Tuesday morning, there were 105,691 people nationwide waiting for organ transplants, according to the OPTN. Last year, there were 26,081 transplants.

State legislation that strives to increase awareness about organ donation and make it easier to donate — and which is named after late Melrose resident Laura Linehan — passed the House last week and is now headed to the Senate.

Filed by lead sponsor Rep. Katherine Clark, D-Melrose, the bill would provide organ donation information and the ability to register as a donor with state income tax forms; establish a state donation account for organ donation awareness and education; and restart a state organ donation advisory council focused on public education.

The bill now heads to the Senate, where Clark said it has “great support.” Sen. Tom McGee, D-Lynn, who represents Melrose Wards 6 and 7, co-sponsored Clark’s bill and Sen. Bruce Tarr, R-Gloucester, and Sen. Karen Spilka, D-Ashland, have filed similar legislation.

“We’re expecting it will be well received,” she said.

Officially titled “an act relative to organ and tissue donation and transplantation,” the bill is known as “Laura’s Law” after Linehan, who died in April 2008 on the operating table at St. Luke’s Hospital in Florida while undergoing surgery for a liver transplant.

She and her mother, Ann Linehan, had moved to Jacksonville in January 2008 after learning that inequities in the organ transplant system result in those needing transplants receiving them quicker depending on where the person lives “Mother, daughter head to Florida in search of liver transplant,” Free Press, Feb. 21, 2008).

After her daughter’s death, Linehan spearheaded the creation of Donate Life Melrose, a branch of the national advocacy organization Donate Life America, which Clark credited this week for driving the new legislation.

“I am so grateful to the Linehan family and to Donate Life Melrose for all the work that they’ve done on this,” Clark said. “It’s an exciting piece of legislation that was really driven by their advocacy and wanting to honor Laura Linehan in a really profound way.”

Linehan told the Free Press this week that was she excited about the bill passing the House, adding that she had been anxiously waiting for the Legislature to act on the bill, which Clark had filed in January 2009.

“I was beginning to wonder if it would ever go through, so it sort of came out of the blue last week and I wasn’t expecting it just then,” she said. “We were thrilled. It seems like so many good causes get lost and this certainly is a good one.”

Linking to donor registry

One of the key components of the bill — including information on organ donation with state tax return forms and, on electronic tax forms, a link to the Registry of Motor Vehicle’s (RMV) donor registration site — came directly from Linehan, Clark said.

Linehan said she was filling out her daughter’s posthumous state income tax return and noticed that it offers taxpayers the opportunity to donate to various funds including the Organ Transplant Fund, a state account established in 1986 to assist Massachusetts residents with the uninsured cost of their medically approved transplants and related expenses. Linehan thought having a link on the electronic form to the RMV’s donor registration site would seem like a natural addition.

“That’s huge for me because I’m looking for exposure in areas that are not already being tapped and the Department of Revenue is one of those,” she said. “People do their state income tax return every year, or they’re supposed to, anyway … I’d like this to be in every department in the state. It’d be great if it were through the Department of Public Health and every other department the state has that could connect people to the registry. The more exposure the better.”

In addition to the link to the donor registry on electronic forms, printed income tax forms would include information on how to become a donor, Clark said, to hopefully improve upon the state’s relatively low rate of residents signing up to be donors. Other online tax vendors such as Turbo Tax would include the link as they update their state forms, she added.

The bill would also establish a new fund to be used expressly for organ donation awareness and education, with the fund replenished through voluntary contributions through the RMV’s Web site, Clark said.

Linehan said that solving the problem of patients waiting for long periods of time for a transplant begins with finding more donors, which in turn begins with funding for organ education and awareness.

“The more people that we’re able to get out and reach, the more donors. It’s just that simple,” she said. “I was talking to the people from the Organ Transplant Fund around the time Laura died and they were telling me how strapped they were for funds. That’s a voluntary donation as well. They don’t do very well and I’m really hoping that this does better. If everybody gave a dollar, it sure would add up.”

Strategizing on education

The bill would also revive a dormant organ donation advisory council that originally focused on coordinating between public and private agencies concerned with organ and tissue donation and transplantation and other state-level administrative functions.

The revived advisory council would oversee the newly established organ donation fund and assist state officials in developing strategies to increase organ donations, including creation of a new Web site and establishing a program through which employers would match the donation of employees to the organ donor registration fund.

Clark said that the council members would not be paid and would consist of a mix of people affected by organ transplants. In addition to state officials, such as the commissioner of public health, and those in the medical field, such as the president of the Massachusetts Medical Society, the council would include 10 gubernatorial appointees with experience in the field of organ and tissue donation or transplants to be appointed by the governor.

The bill would also direct the Secretary of State's office to study the feasibility of becoming a donor when a person registers to vote. The reason for a study first, Clark said, is because while the goal is to create more opportunities for people to register as donors, officials are wary of putting another mandate on local election clerks or the RMV that would be cost prohibitive.

Copyright © 2010 Melrose Free Press.

This article posted February 21, 2010.