We seem to have seen a lot of cases these past few weeks about transplant programs closing for one reason or another. Some close because of bad outcomes, other because it has lost too many key personal to safely continue. Regardless of the reason, this is a very challenging time for transplant candidates and their families because the end result is the same: they are not on the waitlist anymore, and they have to start over somewhere else. How can someone avoid this kind of situation??
Multi center listing
Every transplant candidates have a right to be placed on the wait list of more than one hospital. The challenge is more about logistics and finances than anything else. The next closest transplant center for the specific organ may not be that close to begin with. A patient may have to travel across or out of state. Some states like Texas offer several options all within 200 miles of each other. They are large states with more than one Organ Procurement Organization (OPO) which makes it easier to find another center outside of the main OPO. In some less populous part of the country, a single OPO might cover 2-3 states.
It is true that some testing might not need to be repeated but the process is the same as far as all the appointments with dietitian, social worker, transplant coordinator, etc. Each patients need to be presented to Medical Review Board (MRB) aka patient selection committee. One transplant center may approve a patient and the other might decline the candidacy. You have a right to know why you have been declined and the transplant center has an obligation to tell you.
Do your due diligence
The nice thing about transplant is that (almost) everything is transparent. All statistics from every transplant centers and OPO are available on this website www.srtr.com. The public has the option to research a specific transplant center and look at their level of activity and success rate.
The caveat with these stats is they are not “live”. The statistical numbers represent what happened over a year and a half ago but covers a 2 and a half years period. Yes, it is a little complicated for the public to understand. It might not tell the whole picture but it gives you an idea if a transplant center has worst outcomes that expected. This is really what matters. Are the outcomes worst or better than expected? If a transplant program had a bad run and is now correcting its outcomes, it will take over a year to show in the statistics.
Making the decision as a patient
At the end of the day you can decide where you want to go for transplant especially with Medicare. Private insurances won’t offer that same flexibility so they kind of dictate where you go. Even transplant centers with long storied reputation could get in trouble at anytime with poor management (CHI St-Lukes in Houston Texas having issue with its heart transplant program). At least by doing your homework you are putting all the chance on your side for a great outcome. Let us know if you need help understanding the information available.