Changes at OPTN – Enhancing Liver Distribution
You may be aware that OPTN (Organ Procurement and Transplantation Network or UNOS) is proposing a change to the way it distributes livers to those awaiting a transplant. Essentially the program has become a boondoggle of bureaucracy and dysfunction. For the past five years various groups, committees and stakeholders have been working to refine the process whereby the allocation of available livers are distributed to patients. With so many regions (currently 11) and the need for an impartial and universal way to allocate the organs in a vast area with a significant shortage of donated organs, working out the logistics of this process has met with much resistance and frustration upon the various people involved. The focus on a circle approach to gauge distance to available organs seems the least of the problem in my opinion.
The full Proposal is viewable on the OPTN website: https://optn.transplant.hrsa.gov/governance/public-comment/enhancing-liver-distribution/
While I applaud the efforts to improve what is clearly a broken system of organ allocation, it does nothing to address the root cause of the problem, the shortage of transplantable organs for those waiting for this gift of life.
The OPTN is taking public comment on the proposal and I have given my two cents of wisdom to the process. See my comments on the public comments forum below:
“As an autoimmune liver patient (PBC) in Region 5, I was told bluntly by my gastroenterologist that I would not get a transplant in California because the demand is too high and the supply too low. That seems strange in a state where progressive views on health are the norm. While the proposal seems to have some of the elements of improvement we’ve been long advocating for, it still does nothing to address the shortage of donated organs available for transplant. Our state is particularly hard-hit with viral hepatitis and as a result, many more patients require transplant, especially in some ethnic groups. Adding to points to a MELD score for geographical proximity seems to favor those economically able to live near major transplant centers Perhaps the focus should be on more liver transplant centers in order to meet the patient needs. Focusing on transport costs cheapens the value of the patient’s life. Any change in UNOS policy for allocation should also address the supply shortage and offer solutions to reduce the wait times for all liver patients who await transplant. Furthermore, the premise of MELD scoring is now an outdated model of gauging liver health for transplant. Not all liver diseases are equal and some patients become quite ill, and in fact too ill for transplant while waitlisted. We need to have a viable way to gauge true patient status, not just the liver chemistries. Life threatening complications of liver failure are not ranked and yet can quickly indicate the need for a transplant urgently. Lastly, the proposal does not address the arbitrary ranking of “too ill to transplant” that some centers use to protect their programs from lower successful transplants. With incentives to report success, centers will continue to protect their rank by listing a patient “too ill to transplant” rather than risking the death of the patient on the list. For these reasons, I do not support this proposed rule change. I encourage the OPTN to revisit the issue, involve patient groups and advocates to make the process more patient centric and recognize that everyone who needs a new liver to live should be able to obtain one, regardless of their geographical location within the US.”
Unfortunately, I fear that those of us that beat the drum of advocacy will be drummed out by the bureaucracy which dominates the policy makers ears. Change is truly awe-inspiring and not difficult to do when there is true will to do so. I encourage those at OPTN to reset this initiative and set the bar higher to reach a truly meaningful change in culture, one that considers the patients rather than the petty bureaucracy squabbles that dominate the process currently.
PBC Advocate 