Three things I learned at the Cholangiocarcinoma Foundation conference

The annual conference of the Cholangiocarcinoma Foundation is a pretty special event. The Foundation has a core of dedicated, altruistic patients and caregivers who help everyone who attends to feel like part of a community. Teresa and I were eager to connect with other members of our patient community, and we did. At the same time, the event is a snapshot of the state of scientific research into this disease. One day is “science for patients,” and not too hard to follow. The other two days are full-throttle “science for scientists,” and way too advanced for me to understand perfectly – but making the effort to try to keep up gradually paid off and I felt like I left the conference understanding a lot more than I had when I arrived three days earlier.

There’s a lot I could say, and may say in future posts, about the science, but right now I want to comment on three more straightforward propositions that came clear for me at the conference.

First, doctors who give prognoses are not necessarily right. I already knew this in theory, of course, but it was great to hear people talk who’d been told they had only some number of months to live – years ago!

Second, there are some really long-term survivors of this illness. Again I knew that this should be true, and I’d even met one or two before. But when we encountered a 10-year survivor and an 8-year survivor at this conference, both of them going strong, I was impressed. I have the feeling that part of what has made this disease’s statistics look so grim is that it has been so little understood and so inexpertly treated, and this conference in and of itself is a step to change all that.

Third, and on a very different note, Teresa and I learned more about the actual world of treatment as it is right now, and in particular about the actual world of insurance. We met two or three families whose insurance covers them only in-state. This disease requires expert treatment by doctors who know its features well, but it’s a rare disease so the doctors who can acquire that kind of expertise are located at just a few places around the country. So what do these families do if none of the major cancer centers is located in their state? What political calculation was it that risked the health of people like these?

So we encountered community and science, hope and injustice, all in the course of just a few days. A valuable conference to attend.