PBCers Please Read - PBC Name Change
Sun Apr 27, 2014 2:41 am (PDT) . Posted by: pbcers
As most of you know, the name Primary Biliary Cirrhosis is very deceiving.
For years PBC wasn't diagnosed until late disease stage and the patient
was already in cirrhosis. The past 18 years have brought great improvements
for the PBC patient by way of early diagnosis and medications which slow the
disease progress. Today, most diagnosed with Primary Biliary Cirrhosis
will never reach the cirrhosis stage or need a transplant, but we still live
with the stigma involved in the name. Cirrhosis!
Although we tried in 2000, we had no backing to change the PBC name. We
had to depend solely on educating the general public, more PBC awareness in
the medical communities and living with the consequences the name brought to
Now in 2014 it is different. PBC research, medications and the rules in
the Affordable Care Act (Obamacare) have brought to light the need to change
A few weeks ago at the EASL Conference (European Association for the Study
of the Liver) held in the UK, Dr. Robert Gish of the US started a panel
discussion regarding the need to change the name of PBC. The possible names
considered are Primary Biliary Cholangitis and Primary Biliary Cholestasis,
trying to stay with the acronym PBC.
Some of the justifications Dr. Gish discussed:
1. (UK) Life Insurance for home purchases.
2. Life insurance in general.
3. Psychological burden of the word cirrhosis when no cirrhosis is
present to patients and families.
4. (US) Electronic Health records and metrics, quality measures all linked
to the diagnosis of cirrhosis when patients do not have cirrhosis.
5. To be grammatically and pathologically correct.
6. ICD 10 will be approved next year. (The ICD 10 is the International
Classification of Diseases, 10th Revision, a revision which physicians and
other providers use to code all diagnoses, symptoms, and procedures recorded
in hospitals and physician practices.)
The PBC name change has become a global effort. PBC support groups, liver
disease foundations, pharmaceuticals and members of the medical communities
are joining together to get this done. It will be discussed at the EASL
conference in Milan and the PBCers conference in Las Vegas. Some well known
liver disease specialists Keith Lindor, John Vierling, Chris Kowdley, Eric
Gershwin and James Neuberger have joined Dr. Gish in this effort that will
help PBC patients around the world.
I think we finally have a good chance of getting the PBC name changed, but
we NEED YOUR HELP. Below is a link to the name change survey that will be
used in the panel discussions. Those who are heading this effort need to
make sure they have the full support of PBC patient. The survey will provide
this information. It takes just a few minutes to complete, so please take
the time to answer the survey questions. This is to help ALL of us.
I would like to thank Dr. Gish for having the foresight to get this effort
started, and bringing it together not only for patients in the US, but
worldwide. I would also like to thank Robert Mitchell-Thain of the PBC
Foundation for bringing all the PBC support and liver disease groups together and
compiling this much needed survey.
Right now the volunteers and I are working long hours organizing our Las
Vegas conference. After the conference, we will be able to offer our full
support in the PBC name change effort. We hope you will join us.
Hope everyone has a safe and good weekend.
PBCers Organization, President
http :// PBCers.org