Getting Help

Dr. Kenneth Cox and Oral Vancomycin: A Treatment for PSC

More than 30 Bay Area children have escaped the sad fate of the vast majority of PSC patients because of a chance discovery by Dr. Kenneth Cox at Stanford University Hospital.

In 1993, Dr. Cox was treating a teenage boy with a colon infection using the antibiotic, oral vancomycin. The boy also had PSC, and Dr Cox noticed that, while on this antibiotic, the boy’s PSC symptoms disappeared. Dr. Cox thought it was a coincidence but he gave oral vancomycin to a few other children with PSC under his care at Lucile Packard Hospital. The results were the same, and even more telling, when he took the children off oral vancomycin, their PSC symptoms returned.

For eighteen years Dr. Cox has treated PSC patients with oral vancomycin, and many more pediatric patients of Dr Yinka Davies have joined them. In all, more than thirty children, some of them now young adults, have been taking oral vancomycin as long-term therapy, and their results are documented in three published studies (dates as links).

Only four of the children on oral vancomycin in the Stanford trial progressed, and their PSC had reached an advanced stage before treatment began. The others continue to live energetic, healthy lives and their livers have not deteriorated. Many have even shown improvement of their bile ducts and liver function. Dr Cox and his team have found that treatment with oral vancomycin needs to begin as early as possible in the course of the disease, and dosages should be adjusted on an individual basis by a doctor who regularly monitors liver enzyme levels.

Despite its remarkable success rate, the rareness of PSC and the small size of the Stanford study have prevented oral vancomycin from becoming known and finding acceptance as a treatment. Throughout the world, and even in the San Francisco Bay Area, most parents of newly diagnosed children with PSC enter a very different reality. Thousands of children, in the U.S. alone, have been diagnosed with PSC since the time of Dr. Cox’s first discovery. They are told by their well-meaning doctors that there is nothing to do but wait, first to get sick enough to qualify for a transplant, then to go through the process of finding a match and the ordeal of the major surgery itself.

A glimpse into the other reality that is the status quo throughout the world, without oral vancomycin, is given by a study that followed 52 children with PSC over a 16-year period while they were seen at a major U.S. medical center. Eleven children had transplants and the mean (50%) survival rate without transplant was 12.7 years. The toll of suffering on these children and their parents must be read between the lines.

This information gap, and the suffering it causes, motivated a small group of parents of children with PSC to form an unusual nonprofit, the Children’s PSC Foundation. They are working to spread the word to new patients, to help them find their way into sound treatment, and working on the research that will eradicate PSC completely. To get information on how to join the trial, send us an email.