Nonprofit leader acknowledges public concerns and seeks stakeholder collaboration during pivotal moment for the U.S. donation and transplantation community
On Monday, Interim CEO of United Network for Organ Sharing (UNOS), Maureen McBride, Ph.D., addressed the Organ Procurement and Transplantation Network (OPTN) Board of Directors and called for the donation and transplant community to address public concerns by expanding ongoing efforts to improve the U.S. organ donation and transplant system.
“Our national donation and transplant system saves thousands of people’s lives every year. But as long as there are patients on the waiting list, there is more we need to do,” said Dr. McBride. “Our critics agree – they have been vocal. Our supporters, too, have offered constructive feedback. … Here is where we all agree: We can do better. We must do better. We will do better.”
Dr. McBride outlined several areas for improvement, including organ utilization and transportation, equity in access to the waitlist, oversight and coordination with the government, technology and patient engagement.
“It’s clear that each year, too many donated kidneys never find a recipient, and that number is growing,” said Dr. McBride. “This is unacceptable.”
Acknowledging previous board work to improve organ utilization – including implementing recommendations from the National Kidney Foundation’s Consensus Conference to Decrease Kidney Discards – Dr. McBride stated that the OPTN must seek additional opportunities to address the issue. Suggested actions included examining methods to increase usage of older and more complex donor organs as well as prioritizing discussions and potential solutions for safe and efficient organ transportation.
“Practical, logistical, and regulatory obstacles to the safe and efficient delivery of donor organs should be identified, remedied, and monitored,” said Dr. McBride.
Dr. McBride went on to address issues of inequitable patient access to the organ transplant waitlist. While the OPTN has the data and resources to maintain equitable services for waitlisted patients, there remains a challenge in helping pre-waitlisted patients, whose needs and data currently fall outside of the OPTN’s purview.
“I am committed to seeking HRSA’s continued support for access to the data,” said Dr. McBride. “In my view, it is time for us to take bigger, bolder steps to increase equity across the entire donation and transplant landscape, not just one part.”
Dr. McBride also acknowledged system improvement efforts by lawmakers and members of Congress, including the U.S. Senate Committee on Finance, expressing her belief that oversight should include all members of the donation and transplant system.
“In August, the Senate Finance Committee stated that ‘Everybody wants this system to work with as few errors as possible.’ We completely agree,” said Dr. McBride. “My vision for the OPTN is one in which we work alongside, closely and collaboratively, with members of Congress, HHS, HRSA, CMS and others in the federal government to do the hard work of driving change and instituting substantive reforms.”
Noting OPTN technology as another focus of congressional attention, Dr. McBride spoke of the need to match public expectations and continuously evolve IT and other technologies that the system relies upon.
“We stand ready to alleviate those concerns, serve as a resource and engage in one-on-one conversations to provide assurances – to HHS and Congress, patients, and the general public – that our systems remain secure and effective.”
Lastly, Dr. McBride addressed the importance of patient engagement, referencing feedback from patient representatives that their input might have limited impact on board decisions and that non-volunteer patients require more comprehensive information to help them or their loved ones.
“We will commit to ensure you have the support you need to make a meaningful contribution and that you feel you are heard and valued,” said Dr. McBride. “For patients not yet involved in the OPTN policy process, I’ve heard that they want an easy-to-access source of information – content and resources that will help them on their transplant journey … Work already is underway to offer more educational resources to meet those needs.”
Stressing that each topic of concern aligns with ongoing initiatives to better serve the donation and transplant community, Dr. McBride urged the OPTN Board of Directors to join her in seeking these improvements.
“I am calling on everyone in this room … to work with me to make these changes,” said Dr. McBride. “All of us have worked very hard to drive significant progress to date and we all are committed to doing even more. This is our profound responsibility – one we can never take lightly.”
Dr. McBride was appointed Interim Executive Director of the OPTN in October. She has been with UNOS since 1995, most recently serving as the organization’s Chief Operating Officer until she accepted the role of Interim CEO.
A copy of Dr. McBride’s remarks can be found here.