President-CEO Texas Organ Sharing Alliance
Every day in this country, 78 people receive a lifesaving transplant thanks to generous organ donors and their families. These precious second chances at life could come to a screeching halt if a proposed rule by Centers of Medicare/Medicaid Services is enacted. The proposed metrics from CMS are meant to increase donation rates but in doing so, significant factors have been overlooked that could affect the more than 100,000 patients in the U.S. awaiting a transplant they desperately need.
Across the U.S., groups of dedicated individuals from Organ Procurement Organizations work with donors and families to facilitate the donation of these lifesaving gifts. There are 58 organizations federally designated to specific areas to provide organs using the United Network for Organ Sharing to identify patients in need. In Central and South Texas, Texas Organ Sharing Alliance is responsible for more than seven million people in communities from Waco to South Padre Island.
While there are many OPOs, the waiting list grows every 10 minutes, making the need for transplants a rising concern. But if passed, these changes could essentially mean that 75 percent, potentially 44 out of the 58 OPOS, would be out of compliance because they didn’t meet a top 25th percentile threshold.
A decertification puts already suffering patients at risk. The logistical hurdles for any remaining OPO to take over a donor service area from a now-decertified OPO would be expensive. And even if they passed and manage these proposed hurdles, OPOs would struggle to meet this threshold each year, which would set an ongoing disaster that would cost patients their lives.
One of the new metrics include using death certificates to determine an OPO’s donor potential. Current studies show that 30-60 percent of death certificates incorrectly list the cause of death with secondary conditions being inconsistently documented. Consider a patient who dies of a head injury. If they were positive for COVID-19 or even had cancer, it might not be listed as a cause of death, but it would certainly be a rule-out for organ donation. A better method would be to use the number of ventilated deaths in a hospital for donor potential metrics.
The role of the OPO is to recover organs. OPOs should not be held accountable when organs aren’t used for transplant. This is a decision made by the transplant patient’s medical team and the patient themselves. The proposed CMS rule to hold OPOs liable for instances in which suitable organs are not used for transplant is unnecessary. The transplant teams are the best advocates for their patients and should remain the decision makers.
There is good evidence that the number of beds in a hospital correlates with the number of potential and actual donors. Texas, with its large numbers of small rural hospitals, is at a disadvantage. Texas OPOs have to cover large geographic areas and must place their personnel effectively to manage the organ donation process. Language, culture and the large Latinx population also pose challenges for communicating and educating the public about organ donation and for obtaining informed consent. The population in South Texas, including the Rio Grande Valley, is especially affected as many suffer from co-morbidities such as diabetes that can make donation less viable.
TOSA supports improvements to the donation and transplantation field that are practical and based on sound data to help save more lives. TOSA has consistently improved processes and outreach in our designated service area that has led to record-breaking years for each of the past five years. In 2019, 207 donor heroes provided 620 organs to 555 patients waiting for lifesaving transplants. That momentum could come to a grinding halt and lives will be lost if the proposed changes take effect.
To help ensure these successes continue, we encourage the community to contact their representatives to ask for a thorough review of these changes to help us save lives.