Don’t let new federal rules threaten groups that coordinate organ donations

Our first-born son was 10 weeks old when he died. We were on our way home from his christening, and we were involved in a car crash. I wasn’t even back from maternity leave when we lost our son.

His death devastated our family. We chose to donate organs so that others could live. Giving life to others was the only positive of this most tragic circumstance.

I witnessed the modern-day miracle of transplant. I know how powerful our nation’s organ donation system is. As a health care professional, I also understand how complex that system is. And I’m worried that the system that makes these miracles happen – for me and for thousands of other donor families and transplant recipients – is at risk.

Each donation case can involve as many as 200 people. It’s carried out by trusted partners called Organ Procurement Organizations, or OPOs. These nonprofit organizations support families who have lost a loved one and coordinate the many details of matching donated organs and tissues with waiting transplant candidates.

Our OPO in the Fort Worth area is called LifeGift, and it’s one of the highest-performing OPOs in the country. In fact, the U.S. has the highest performing donation and transplant system in the world. But a newly proposed regulatory change by the Centers for Medicare and Medicaid Services puts the national donation system at risk of being dismantled.

As it is currently written, the federal rule change could result in decertifying up to 75% of OPOs across the country, with no alternative for facilitating organ donation when they close. Imagine if 75% of hospitals across the country closed abruptly with no plan for how to care for their patients.

While LifeGift isn’t under threat, a dramatic change to this system based on flawed data endangers the patients relying on the system to save their lives. There is a better way to increase organ donation and get more patients transplanted, and that begins with inviting all parties involved in the donation and transplant process to come together and work towards meaningful improvement.

Of course, I don’t enjoy reliving the death of our son, but I believe in organ donation so much that I think it’s important to share with others. For my husband and me, organ donation was a huge part of our healing process. It helped to bring us through to the other side.

It also gave me something to share with our families at Cook Children’s Health Care System in that same situation. Staff will call me and ask me to visit with families. And so I do. I tell them that organ donation is one positive thing that can come out of a truly horrific situation.

Years from now, I hope they will look back and say, “Thank goodness we made that decision as a family.” I know that’s the way my husband and I feel.

We cannot dramatically disrupt a system that does so much for so many people. That’s why I am asking my congressional representative to urge the Centers for Medicare and Medicaid Services not to rush through this new rule, which has too many unintended consequences, but to advance with deliberate speed and thoughtful consideration. I hope you will consider asking your congressional representative to do the same.

Change is essential for the ongoing improvement of health care systems. Oversight is essential to ensure systems are operating efficiently, safely, and with patients’ best interests in mind. The transplant and donation community, including LifeGift and its fellow OPOs across the country, appreciates the importance of oversight, because the organ transplant system is extremely complex and the stakes are high.

We all want rule changes that support and protect organ donation and transplants. But we must ensure that the right changes are being made. Federal officials must thoroughly assess all parties involved in the system with a keen eye as to how they work together. When the mission is to save lives, we must get the changes right the first time.