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Life and death decisions about who gets organs

17 Sep
Life and death decisions about who gets organs

September 17, 2013
Pittsburgh’s Post-Gazette
An editorial by Jim Gleason

     A story out of Newtown Square, Pa., is known to many millions of people: Sarah Murnaghan, now 11 years old, received two lung transplants in June after highly emotional attention in news and social media and a public debate over the merits of transplant allocation policy. Sarah has end-stage cystic fibrosis, and a judge ordered her added as an equal to the adult and adolescent lung transplant lists when she was originally at the bottom of those lists because she was too young.

     Every thinking, feeling human being should wish Sarah and her family well in her continued treatment and recovery.

     But some facts have been largely overlooked: In the months since Sarah Murnaghan’s story first gained public attention, about 5,500 men, women and children received transplants made possible by the generosity of deceased donors and the work of the national transplant network administered by the United Network for Organ Sharing. Sadly, about 1,500 others awaiting transplants died because no donated organs were available to meet their needs.

     When confronted with a large, tragic situation, we often seek personal meaning in the story of one person, such as a child. We can’t grasp the immensity of the earthquake and tsunami that struck the Indian Ocean in 2004. We can, however, e-mail to our friends the pictures and stories of the children who were rescued and needed to be reunited with their families.

     We can’t take in the immense human toll of Hurricane Katrina, but we can sympathize with Charles Evans, a precocious 9-year-old who sums up the plight of many in New Orleans’ 9th Ward. If we can be assured that one child’s needs are met, we can somehow feel just a bit better about the fate shared by thousands.

I, too, see transplantation in uniquely personal ways. I received a heart transplant nearly 20 years ago. My wife lost an adolescent son, who helped save and enhance other lives through organ donation. I am president of Transplant Recipients International Organization, a group devoted to addressing the needs and interests of transplant recipients and their loved ones. I also am a member of UNOS’ board of directors, which votes on national organ transplant policies. We decision-makers are not thoughtless, faceless bureaucrats. We are donation and transplant professionals, transplant recipients, living donors and relatives of deceased donors.

     We all are informed by strong personal experiences, whether they are first-hand experiences like mine or the relationships that transplant doctors have had with hundreds or thousands of patients. We want to ensure that as many people as possible have the chance for renewed life through transplantation.

     As much as we are moved by our personal emotions and opinions, to have a national system that is fair to the needs of more than 119,000 transplant candidates, we must also weigh carefully what medical experience and data suggest will be the most effective and beneficial policy given the supply of organs we have today. We do not take lightly any decision we make, knowing that as long as there is an organ shortage, some people in desperate need will benefit and others will not.

     Allocation policy can change and will continue to change as needed to help candidates with the organs we have available. But the larger lesson is lost in the focus on policy. Every transplant begins not with a policy but with a personal commitment to save and enhance the lives of others through organ donation.

You can decide, right now, whether someone needing a transplant will live — through your decision to be an organ donor. In fact, your decision can help save multiple lives — in some instances, as many as seven organ transplants can be made possible by one donor.

     If the nearly 100,000 people who signed the change.org petition asking for a policy change for Sarah Murnaghan continue to advocate for organ donation by committing personally and by getting 10 more friends and family members apiece to make the same decision, that would be a potent force in Sarah’s honor to ensure that the next person in need — perhaps a child, or a grandparent, or a veteran, or a first responder — will have the same opportunity for renewed life and health.

     If would be a great tragedy if, as we all take justifiable comfort in knowing one person’s needs have been met, we lose sight of the many who still can be helped and the role we all can play in helping them.

     Jim Gleason lives with his wife, Pam (a donor mom) in Beverly, N.J., and blogs at gleasonjim.wordpress.com  E-mail him at GleasonJim@aol.com.
This editorial first published September 17, 2013 12:00 am