You will be delighted to read that we are knocking on the doors of a wonderful opportunity.
There is an international initiative right now building momentum towards a great day for all people affected by PBC. We (more on that later) are on the cusp of changing the name of "Primary Biliary Cirrhosis."
We know that most people with PBC don't have cirrhosis. We also know that people with PBC have issues obtaining even the simplest of things: life insurance, mortgages, travel insurance. And yes, we know, too, that you don't drink.
So, the time has come. We are about to implement an enormous change. But who are "we"?? Well...
There is support amongst other patient organisations. We have been working particularly closely with Deutche Leberhilfe and ELPA and we have the support of many others. We have the support from many prominent PBC physicians, including some of the most world eminent PBC specialists on both sides of the Atlantic all fighting in our corner. We even have the support from many in the pharma industry.
We have been asked, as an organisation, many times by our members if we could change the name of PBC. I, for one, never expected to see this day in my lifetime and I cannot describe to you the joy deep within me that this is where we are: right on the edge of making one sweeping change that will improve everyday life for thousands of our members. We clearly have the mandate from our members but what we need now are statistics to support that assertion.
So, we have compiled a questionnaire that we need you to answer. We have been invited to speak to PBC specialists in Milan at the monothematic PBC conference hosted by EASL (European Association for the Study of the Liver). With the answers given in the survey, we want to show the medics how strongly our members feel about the word "Cirrhosis" still being in the name PBC. We want to show that Primary Biliary Cirrhosis is more than just a name. We want to show that, just with the inclusion of that one word, people with PBC are actively discriminated against.
So, will you help us??
All we ask is that you take a few moments to fill in this survey. I hope it is visible as a link. If not, just copy the text and paste it into your web page address bar. With your answers, with your opinions, with your experiences supporting us, we can take this to the doctors at EASL and fight to make the change possible.
We are almost there. Help us on the final hurdle.
Yours, as ever,