Honor organ donors by saving procurement organizations
When our 18-year-old daughter Maddie died of an asthma attack, we chose to honor her wish to be an organ donor. Before wheeling her away for transplant surgery, a nurse took my husband’s hands and said, “I will treat her with the same respect and dignity I would my own daughter.”
That nurse was with Gift of Hope, the Illinois-based organ procurement organization that is still helping us cope with the loss of our gorgeous and giving girl. We are extremely concerned, because a rule proposed by the Centers for Medicare& Medicaid Services threatens to dismantle Gift of Hope and the other 57 federally-funded, community-based procurement organizations around the country that make organ transplants happen.
This rule aims to fix procurement organizations that allegedly don’t performwell. But the fact is organ procurement organizations are the linchpin of a U.S. organ donation system, acknowledged to be the best in theworld. Some could use improvement, but most of them— like Gift of Hope— are staffed with the most caring, compassionate, experienced people we’ve ever met.
Yet the new rule would allow for replacing up to 75% of procurement organizations with inexperienced, for-profit startups that do not knowthe complexity of initiating and facilitating a transplant, much less 35,000+ annually, which is howmany procurement organizations currently orchestrate.
We never thought we would need the organ transplant system. No one does, until they do. Believe me, if that day comes for you or a loved one, you will want a procurement organization nurse who has made it his or her life’s work to help grieving families find hope in tragedy. You will want a procurement organization that knows every turn of this complex and interconnected system. A single transplant can involve coordinating as many as 200 invaluable participants.
As a donor family, we support thoughtfully considered, comprehensive reform to make this system even better. This Centers for Medicare& Medicaid Services rule is not thoughtful nor comprehensive. Not once in its 168 pages are thewords “donor family” mentioned. This is not just an insult to the gifts we have given; it reflects the lack of understanding of what this system requires and what, at its heart, it is about. It does not exist without us and our lost loved ones.
Organ donation starts with a tragedy that leaves a family in complete crisis. Organ procurement organizations reach out to such families in their darkest moments, build trust, and work with them to allow their loved one to give life to others. Yet procurement organizations don’t function in a vacuum. They work hand in glove with donor hospitals on the one end and transplant centers on the other. So if we’re going to improve the system, we have to improve all three major parts of it— not just threaten procurement organizations with closure.
The people who represent Gift of Hope helped us do the hardest thing imaginable: let go of Maddie’s hand for the last time to honor her last wish. Every day, procurement organization colleagues across the country help people let go of life in order to give life. It is not a job for the inexperienced, untrained, untested or unsure.
Please join us in support of organ procurement organizations by calling your congressional representatives and asking that they insist the Centers for Medicare& Medicaid Services improve our transplant system overall, not attack one crucial sector of it.