0525 heart 8 sds

In this file photo, a member of a heart transplant team at Penn State Milton S. Hershey Medical Center unpacks a donated heart flown in from another part of the state. Sean Simmers

(Sean Simmers)

Organ transplant advocates say Pennsylvania's failure to adopt practices used in most other states has made it the national leader in denying organ donations. Now, a debate over a bill to change that has devolved into accusations of lying, with a recent letter from the state coroners association filled with inaccuracies and distortions about an issue that can mean life or death for people waiting for organs.

Coroners in Pennsylvania blocked organ donations 28 times since the beginning of 2014 -- more than the combined total of 36 other states. New Jersey, for instance, hasn't had a denial in 20 years, according to the Gift of Life Donor Program.



The denials usually involve people who have been declared brain dead and who were registered as donors, or whose family chose to donate their organs. The denials happen when a county coroner -- Pennsylvania has an elected coroner in most counties -- decides a body or organs are needed for a criminal or death investigation.



The 28 denials only involve occasions when a coroner blocked donation of all organs; they don't include instances where a coroner keeps one organ but releases others for donation. With three to four organs typically coming from each donor, the 28 denials mean roughly 125 organs, including hearts, lungs and kidneys, were lost. With 8,000 people in Pennsylvania waiting for an organ, and close to 500 dying annually while waiting, every organ could mean life or death for someone, advocates say.



"You could be saying no to someone's only chance," says Richard Hasz, vice president of clinical services for Philadelphia-based Gift of Life.

Transplant advocates seek to update Pa. law



Advocates want Pennsylvania to adopt the "Uniform Anatomical Gift Act," a standardized law that's used by 47 other states that they say will all but eliminate instances of coroners needing to deny organ donations because of investigations. Provisions of the act are contained in House Bill 30, which would update Pennsylvania's organ donation law for the first time since 1994.



But the Pennsylvania Coroners Association staunchly opposes key parts of the bill. While expressing support for organ donation, the coroners say they have an equally important duty to preserve evidence needed to convict criminals and attain justice for crime victims and their families. HB 30 will interfere with that, the coroners say. They further say they allow organ donation in the vast majority of cases, and are being made to look like villains by Gift of Life.



"They only focus on the few people who might have died waiting on organs," says Lycoming County Coroner Charles Kiessling, referring to the organ procurement organization, or OPO, which collects donated organs. "Our focus is on justice for the deceased person and their family ... We have to be able to do our jobs and not answer to the OPOs."

Map from savealifenowpa.org show the states that, combined, have fewer organ donation denials than Pennsylvania since the beginning of 2014.





Transplant advocates, however, argue there's no reason an investigation should conflict with organ donation. They point to the National Association of Medical Examiners, which says "the procurement of organs and/or tissues for transplantation can be accomplished in virtually all cases without detriment to evidence collection, postmortem examination, determination of cause and manner of death, or the conducting of criminal or civil legal proceedings."



Coroners claim defamation, but who is distorting the most?



The main disagreement involves the process by which a coroner could deny a donation. Under current law, a coroner can block a transplant simply by calling the hospital. Under HB 30, coroners or their representative would have to come to the hospital at the time of organ removal. If the coroner denies the donation, he or she would have to put the reasons in writing. The coroners association objects to both, saying they need full authority to block removal of organs needed for an investigation.



Gift of Life says requiring coroners to come to the hospital will enable them to have all pertinent information, such as reports, X-rays and lab results. The coroners also could take pictures. Gift of Life contends that if coroners avail themselves to that information, they are highly unlikely to find it necessary to deny organ donation. Or they will realize they only need one organ for their investigation, and there is no need to deny removal of others.



"They would be able to see with their own eyes if there is information that could be gathered before or during organ recovery that could still allow the donation," said Stephen Tornone, a lawyer for Gift of Life.



Tornone and others further say the requirement to put reasons for denials in writing will hold coroners "accountable" for denials, and provide a full explanation to families of would-be donors, who they say often become upset when a wish to donate is blocked.



Coroners' letter doesn't withstand fact-checking



The fight over HB 30 has devolved into claims by both sides that the other is waging a misinformation campaign.

A recent letter written by the coroners association that was signed and released to the news media by coroners across the state contains several inaccurate or misleading statements.

For example, the letter says HB 30 "will eliminate a family's right to have any say over what happens when their loved one dies."

But according to the text of the bill and interviews with several sources, the rights of a family change only slightly. Under existing Pennsylvania law, if someone has listed themselves as an organ donor, that decision cannot be overruled by their family. If the person hasn't indicated whether or not they want to be a donor, the decision shifts to a hierarchy of people, starting with the spouse.

Under HB 30, if the person hasn't indicated their desire to donate, and had designated someone else to make health care decisions for them, that person would be first in line to decide. Next would be spouse, an adult child, a parent, etc.

Similarly, the coroners wrote that "a minor when getting a driver's permit will be able to say yes to organ donation," suggesting parents will have no say whatsoever. But the letter fails to mention that a driver who is under 18 can be listed as a donor only with written parental consent. Furthermore, that's how it is under present law; HB 30 wouldn't change that.

The letter was written by Susan Shanaman, a lawyer and lobbyist for the coroner's association. In an interview, Shanaman insisted the statement was accurate, and it wasn't misleading to omit that parental consent is required. She said including such details would make the letter too long.

Among the letter's other inaccuracies is a statement that HB 30 "will override any investigations into the cause and manner of violent or suspicious deaths by the Coroners, thus drastically impacting the ability to gather bodily evidence in the case of homicide or other wrongful death." Yet HB 30 states "The coroner or medical examiner shall have the final authority to disallow an anatomical gift."

Perhaps the most irresponsible statement in the letter relates to the fact that HB 30 will require high school students to be taught about organ donation. The curriculum is currently voluntary; it was created several years ago by the Lancaster-Lebanon Intermediate Unit and signed off on by former Gov. Tom Corbett and the state secretary of education. HB 30 would make it mandatory, although parents who don't want their child exposed to the curriculum could opt out.

According to the coroners' letter, HB 30 will "mandate" children are taught "that minorities are ineligible to receive donated organs from white individuals."



But in reality, the curriculum states, "Successful transplantation often is enhanced by the matching of organs between members of the same ethnic and racial group. For example, an African American patient is often less likely to reject a kidney if it is donated by an individual who is also African American. A shortage of organs donated by minorities can contribute to longer waiting periods for transplants for minorities and potentially death."



Asked about the justification for such a statement, Shanaman said, "I think it's questionable" that an African American might be less likely to reject a kidney from another African American. She further said such thinking could "suggest a new form of medical discrimination."

African American transplant doctor appalled by letter



Dr. Naudia Jonassaint, a transplant hepatologist at the University of Pittsburgh Medical Center, said that with some kinds of transplants an organ from someone of the same racial background can increase chances of success.

For example, it makes no difference for liver transplants, where only blood type need match. But for bone marrow transplants, a very close genetic match is needed, and can require a donation from someone of the same race, she said. With a kidney transplant, a racial match isn't required, but it could result in the recipient requiring less anti-rejection medication, which is a benefit.

Jonassaint, who is African American, said it's "inflammatory to take that statement and turn it around and say blacks wouldn't be allowed to receive organs donated by white people."



State Rep. Joseph Petrarca, D-Westmoreland, the primary sponsor of HB 30, said "To put racial overtones on this is outrageous ... They are throwing anything and everything they can hoping something sticks."



When pressed, coroners defer to lobbyist



Beyond that, interviews with Shanaman and two county coroners indicate they are unfamiliar with parts of HB 30, and even with parts of the present law, which has been in effect for 22 years.



Cumberland County Coroner Charles Hall sent a copy of the letter under his name and letterhead to PennLive, requesting "a fair representation of all the facts." In an interview, Hall portrayed HB 30 as stating a "family has no say" if a minor chooses to be listed as an organ donor on their driver's license. Told that minors under 18 would need parental consent, Hall said, "that's not my understanding." Asked about other statements in the letter, Hall referred questions to Shanaman.



Kiessling, the association president, insisted, incorrectly, that present law allows families to override the wishes of a deceased relative who has is registered as a donor, and HB 30 would take that away. Asked about other statements in the letter, he said he hadn't closely read it.



Shanaman insisted that organ retrieval teams commonly whisk bodies to Philadelphia and Pittsburgh for removal of solid organs such as hearts, kidneys and livers, and it would therefore be unreasonable to require coroners to be present when they need to deny the donation. But Gift of Life officials said organ removal typically occurs at the hospital where the donor is on life support, and provided a report which shows where organ removal took place.



They said the only donors that are moved are those providing tissues such as skin or corneas, which don't require removal while the donor is in life support, and therefore aren't as time sensitive. Furthermore, HB 30 states that the local coroner must give permission for a body to be moved, and thus could stop the transfer of any body needed for an investigation.



Shanaman cut short an interview, saying she would call back shortly to arrange an in-person interview. But she eventually sent an email saying she wouldn't meet, and requested emailed questions. She didn't respond to further requests to meet in person or talk by phone.



The update is all but killed



Transplant advocates have been trying to update Pennsylvania's law for several years. The state Senate has already passed its own version of HB 30. Petrarca said he thought a compromise had been reached last week, but the coroners at the last minute declined to accept the requirement to come to the ICU in instances of denial and to put the reasons in writing. Petrarca contends that if House leaders allowed a vote on the bill as is, it would pass. As it stands, the House doesn't come back into session until Oct. 17, and there are only a handful of voting days left in which to resolve differences with the Senate bill. That means the bill is on the verge of being killed for the remainder of the year, and possible for the foreseeable future.



In arguing its case, the coroners association points out that Gift of Life, which serves the eastern half of Pennsylvania as well as Delaware and New Jersey, commonly leads the nation in donated organs. They say that wouldn't be possible if Pennsylvania coroners are unnecessarily blocking donations. Gift of Life officials say it's because the region has a lot of people who list themselves as organ donors.



The coroners have taken issue with the fact that Gift of Life has highlighted the Pennsylvania counties where denials have occurred, including two counties, Lehigh and Westmoreland, where coroners have denied organ donation eight times since the beginning of 2014.



"Eight is a big number in our world," says Hasz, the Gift of Life executive.

Graphic from organdonor.gov gives a historical view of the organ waiting list.

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