They say that waiting is the hardest part and unfortunately as of Feb. 27, there are 177 patients with extrahepatic biliary atresia waiting for new livers in the U.S. Overall there are 15,750 patients waiting for a liver transplant. Below is a table with data collected from the Organ Procurement & Transplant Network (OPTN) showing the biliary atresia patients by age and gender. I was surprised to see the relatively high number of adult biliary atresia patients on the waiting list, including two women over 35. I didn’t put it in the table, but both of these women are waiting for their first liver transplants (i.e. not repeat transplants). Among the 35 patients in the 18-34 age group there are 2 patients waiting for repeat transplants.
Anyone interested in transplant statistics should definitely head over to the OPTN website. In all of medicine, there is not another public resource that can compare to the OPTN database. Here you can view waiting list and transplant patient demographics and build reports based on national, regional, state and center data. I chose to sort the national liver waiting list by diagnosis, age, and gender but there are so many other options. I could have sorted by time on the waiting list, blood type, ethnicity, MELD/PELD score, transplant center and so on. It’s pretty amazing the information you can find out about the waiting list.
Here is the path I followed to collect the information for the above table: OPTN.ORG → Data → View Data Reports → Build Advanced → Step 1: Waiting List → Step 2: Age (9 items) → Step 3: Diagnosis (282 items), Gender (3 items) → Step 4: Counts, Portrait → Optional: Organ: Liver → Optional: Count: Candidates → Step 5: Submit Request.
Just remember that these reports are like snapshots of the data taken at a certain point in time. For example, the most recent reports are based on data from Feb. 27. I think this is updated every week or so. It’s not updated in real time so it’s not 100% current and accurate. But still, it’s a very interesting look at the transplant waiting list. 