The following is a guest post from Donna Cryer, president and CEO of the liver disease nonprofit Global Liver Institute.
On Wednesday, the president signed an executive order highlighting a series of initiatives designed to encourage more kidney transplants and treatment at home. But hidden behind these high-profile positive kidney actions were a few equally important measures that will impact all organ transplantation, especially livers.
The first calls for removing the financial disincentives to living donation and ensuring appropriate financial support for donors. The second calls for a complete reform of the organ procurement and management system in the United States to significantly increase the supply of transplantable organs.
Six people die every day waiting for a liver transplant. Currently 13,192 liver patients are waiting for transplant, and the U.S. is ranked No. 5 in the world with a more than 50% lower donation rate than countries such as Spain. We applaud the president’s actions that look to attack our broken organ donation system through removing living donor barriers and modernizing our organ procurement system.
When looking at the value of the living donor measure, we know that many people are willing to become living liver donors. In a recent survey by WebMD and UPMC, respondents overwhelmingly expressed a willingness to consider becoming a living liver donor. A full 70% of people surveyed said they would be willing to consider becoming a living liver donor for a family member or someone they knew. And 39% said they would be willing to be a living liver donor even for someone they did not know.
In practice, however, the numbers tell a different story. The number of living liver donations is a fraction of the total number of liver transplants. In 2018, there were only 401 living liver donations out of 8,874 transplants.
For many would-be donors, financial realities keep them from donating. The prospect of time off from work and the difficulty of caring for family members during recovery time is enough to keep many potential donors from following through and becoming donors. The president’s order seeks to ease the economic burden of living organ donation through the expansion of the living organ donation reimbursement program and implementing a pilot program to expand the qualifying expenses to include coverage for lost wages and family expenses.
When looking at the organ procurement system reform, the current reality is that there is a clear disconnect between the organs that are being donated and the ones that are being recovered.
A recent Washington Post analysis found that of 2.7 million death records from 2016, as many as 27,000 people met established criteria for organ donation — more than twice the number of actual donors that year. This means that at its current average of about three organs per donor, the organ procurement industry could have produced more than 75,000 organs for transplant that year — enough to put the nation on pace to wipe out the waiting lists within a few years.
The executive order rightfully calls for a complete reform of this system, which is led by 58 government-granted monopolies, called Organ Procurement Organizations (OPOs). In theory, OPOs are evaluated on the percentage of clinically eligible donors from whom an organ is recovered. In reality, however, OPOs are allowed to self-interpret and self-report the criteria that constitute this “eligibility.”
The Global Liver Institute understands that organ donation is full of compassionate, dedicated professionals; however, as the data shows, on the issue of evaluating and holding OPOs accountable, self-governance for government-granted monopolies has clearly failed. Clearly, what gets measured matters.
The U.S. organ donation system in its current form is broken, and until there are zero patients dying on the waiting list for an organ our job is not done. We appreciate the president’s actions, and the positive initial step he has taken to ensure that potential donors don’t face the hardships of child care expenses or foregoing lost wages.
We also commend his actions that reform our organ procurement and management system thus holding these crucial organizations accountable through defining clear standards that will greatly improve organ recovery rates. However, even with these positive initial steps we cannot stop until the waitlist is fully eliminated.