In June 2014, while my son was asleep on an operating table, I laid down to serve as his living organ donor. A surgeon removed a third of my liver and implanted it in his 2-year-old body, replacing his diseased organ with mine.
Living organ donation is a remarkable opportunity. It is also massively expensive. Healthy donors become patients themselves. They must take time off of work (often unpaid) and make sure that their other responsibilities are covered. While these barriers didn’t prevent our family, for many others they do.
Thanks to new rules proposed by Team Trump last month, the feds will help living donors by covering expenses such as lost wages, child care and elder care. As Health and Human Services Secretary Alex Azar recently said, “When an American wishes to become a living donor, we don’t believe their financial situation should limit their generosity.” Amen.
But we also have to make sure our nation’s deceased-donor system is working, too. Not everyone has access to a living donor. Organ donation is overwhelmingly popular, with 95 percent of Americans supporting deceased-organ donation. Even so, every year, 28,000 potential organs go to waste.
Proposed federal rules changes could help.
These losses result from failures of government monopoly contractors called Organ Procurement Organizations, or OPOs. OPOs are responsible for showing up at the hospital to coordinate with next of kin and then managing logistics of transporting organs to transplant centers.
The OPOs are incredibly inefficient, recovering organs from only about 35 percent of potential donors. The failures translate directly into loss of life. Approximately 115,000 people are currently on a waiting list for an organ, and 33 are removed from the waiting list every day because they have died or become too sick to transplant.
That’s where the new rules come in. For years, OPOs have been self reporting their own successes and failures. And that data has been “functionally useless,” according to former US Chief Data Scientist DJ Patil. Under new rules, the feds would calculate each OPO’s donation and transplant rates and rank performance; OPOs would need to meet performance thresholds or become decertified.
Thirty-seven of the 58 existing OPOs could be out of compliance.
New York City has some of the worst rates. According to University of Pennsylvania research, LiveOnNY (our OPO) recovers just 31 percent of potential donations. This OPO has been flagged for decertification twice since 2013, but since federal regulations were written so badly as to be unenforceable, LiveOnNY has been able to keep its contract anyway.
Since 2013, more than 6,000 New Yorkers have died waiting for an organ to become available. Under the new rules, LiveOnNY would need hundreds more successful organ recoveries to be compliant with minimum standards. I spent years as a doctor making the calls when a potential organ donor was in my hospital, being put on hold and expecting the organ-procurement process to fail. How many New Yorkers have to die before the contractor is finally held accountable?
If these new rules get implemented quickly, OPOs around the country will no longer be able to avoid accountability, and that simple fact will dramatically increase the level of performance necessary for maintaining contracts.
Putting this into context: If all OPOs reached bare minimum standards, that would mean 1,105 more donors this year, and 4,903 more organs for transplant.
Consider this: Last year, 372 patients waiting for lungs were removed from the waiting list because they had died or became too sick to transplant, as were 646 heart patients.
Imagine what 1,105 more donors could have meant for them?
And because standards will increase over time, the number of deceased donor transplants could increase by as many as 10,000 annually by 2026. Think of that — 10,000 lives saved each year.
I was able to save my son’s life, but we shouldn’t have to rely on living donors to make up for OPO failures, which is what it feels like we have done in New York. This system has to change. Some of our most vulnerable neighbors are dying unnecessarily, and patients simply can’t wait any longer.
Dara Kass is an emergency-room physician in New York.