PBC Foundation

PBC Name Change notice released via PBCers.org (* Partially repetitive to what's been posted here and with a few diifferent details)

PBCers Please Read - PBC Name Change

Sun Apr 27, 2014 2:41 am (PDT) . Posted by: pbcers

Hi Ya'll,

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

our lives.

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

the name.

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.

surveymonkey.com/s/PBCnamec...

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.

Linie

Linie Moore

PBCers Organization, President

http :// PBCers.org

19 Replies
oldestnewest

Thanks for all the new information I have completed the survey now.

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many thanks,i have completed the survey....

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Thank you for adding a further posting JenneryLayne.

I would not agree to using the C in PBC as cholangitis. I think this too can be a bit detrimental. To me the ending of 'itis' means something different as one can have tonsill-itis, laryng-itis, etc and they are usually temporary.

The word 'itis' being a suffix means 'inflammation' and that to me though in PBC we can have inflamed livers or ongoing inflammation it would come across as something that would still baffle the ordinary person. I'd never heard of PBC prior to several months before I was diagnosed back in 2010.

I have read somewhere that PBC is a cholestatic disease and that to me says more than cholangitis.

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Thanks for the info. I've completed the survey x

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Thanks, JennerLayne, for the post.

As someone who was there at the initial conversation with Bob Gish, I was interested in one or two of the, erm, "details" that were part of this post. I am a member of the PBCers digest and did have a wry smile as I read for myself the interesting take on this initative.

I don't care who gets credit for what, or the degree of factuality (made up combination of fact and actuality, for the record) that goes with it. I don't care if some patient organisations had to be convinced that this was the right thing for their members. I don't care if people want to take ownership of certain aspects or not. It belongs to all of us. The "We" is every single person affected by PBC: patients (as yet diagnosed or not), carers, family, friends, medics, pharma.

What I do care about is how people with PBC are affected on a day to day basis. This initiative is important because it has the potential to change peoples' lives: in very direct terms. So far, the Foundation has had almost 500 responses to the survey and that is increasing daily. The mandate is very clear. "We" are speaking in a very clear voice. It is a collective voice and a powerful one.

This survey isn't about us being associated with alcoholics, per se. This initiative is about addressing active discrimination that occurs. It is about taking away the tick box mentality that comes with the word cirrhosis. It is about righting a wrong with the description of a condition that is inaccurate for an enormous percentage of the people with that condition. It is about people with PBC not being frightened at the time of diagnosis unnecessarily.

I have been invited to address EASL in Milan at the end of May to put forward the patient organisations' viewpoints (and hence, the views of our members) and I intend to do that as strongly as I can. From there, we shall discuss it in Vegas and then, all going well, in Boston with AASLD. (The American equivalent of EASL) I shall be working with other patient orgs to ensure that what we say in Milan will be from a collective and not just the PBC Foundation's view. This is hugely important.

"Itis" itself alludes to inflammation. There is nothing temporary about PSC and they have itis in their condition name. PBC is said to be an inflammatory liver condition, amongst other things. You know... The new name might not be perfect but the chances are it's going to be one hell of a lot more accurate and less discrimination-inducing than Primary Biliary Cirrhosis.

The consensus is huge. It spans throughout Europe and America. I hope we can involve other organisations and make this a truly global movement. There are very very few people who don't see this as a good thing. But it will take focus, effort and time.

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Well said, PBCRobert. I do hope to see you in Vegas and thank you for the stellar work you are doing!

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PBCRobert: Is there anything you can share with us stemming from EASL in Milan?

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Thank you Robert for all you do!

sap

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Survey completed, thank you for sharing JennerLayne.

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Thank you - I have completed the survey

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Thank you!

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Thank you for the information, I have completed the survey now.

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Completed. Thanks. ;)

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Thanks. I have filled on the survey.

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Thanks. I have filled on the survey.

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Thank you so much Miss Linie Moore. Done with the survey.

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Hello,

How wonderful this news is the name Change should have occurred a long time ago.

I was diagnosed many years the name itself was scary. Your correct their is a stigma with the term , I never have been a drinker and people quickly assumed the worst.

By, the way when is the Vegas trip.

Reply

The conference is in Las Vegas during the last week in July. I am posting a blurb I just pulled from th PBCers Digest this morning and below is the information. I promise to take detailed notes and repost the info each day on this forum.

On behalf of the PBCers Organization,

our President, Linie Moore, and the Organizing Committee, I would like to

invite you to our 12th conference – 2014 PBCers

Organization Conference: Educate, Inspire & Achieve to be held in Las Vegas from July 28 through

30. If you choose to attend the conference you will learn that we

all face overwhelming challenges every day in learning about and living with

autoimmune liver disease. We come from all walks of life; we will have

traveled from far and wide. Many of us have never met. Yet we all

have something unique in common that motivates us to attend this patient

advocacy conference.

Education. As most of us have learned, anyone can post

information - good and bad - on the Internet. Here we get to listen and

connect with dedicated experts in the field of autoimmune disease, specifically

autoimmune liver disease. These leaders will share their knowledge and

expertise, speak with us on a personal level, and help us to understand how we

can live better, more productive lives. In addition to our pre-eminent

physicians, there will be specialists discussing autoimmune disease on other

levels. Our sponsors, a dentist, a nutritionist, a mind and body expert,

and a Social Security Administrator, among others, will help us to view our

health and bodies in new and different ways so that we can develop strong

coping skills and achieve good health. These special guests inspire us to

achieve a better quality of health and life, allowing us to share with and

inspire others to advocate for themselves.

Inspiration. This is a time of great hope for PBCers. There

are numerous clinical studies and trials taking place around the world with the

hope that there will be more pharmaceutical options to treat PBC and its

symptoms. There are new, non-invasive technologies in the United States

for studying the liver. Recently, there has been a worldwide call to

change the name of PBC so that the stigma of “cirrhosis” will no longer be the

face of our disease. As a result of these studies and movements, we can

face a future with less need for autoimmune liver disease transplants and

patients will live full and productive lives.

Achievement. It isn’t easy to plan a conference. The Organizing

Committee members work together from New York, Pennsylvania, Texas, California

and Oregon. We don’t get to meet over lunch to strategize and discuss all

the components to create this well-oiled machine. We count on the

membership, family and friends for donations, all of which go to research and

education. Our auctioneer, Janice, will use all of her persuasive powers

to encourage you to purchase items during the auctions. Visit Carol at

the crafters’ table and buy a gift for a family member or friend. Look

for the organizers, Sandra, Sharon, Jeannette, Jeanine, Linda, Cathy, Buck, and

me, and please say hello. Attend our exciting and interesting breakout

sessions so that you can connect with people you may have met through the

PBCers Digest or our Chat Room. There you can ask the questions that

never seem to get answered. Friendships made at the conference are

forever. Through your participation and involvement, we can all achieve

our personal and collective goals, and make the 2014 conference the most

successful yet!

I hope you will consider making the

trip to Las Vegas. We will welcome you with open arms. It's going to be an

exciting three days filled with Education, Inspiration, and Achievement.

Andrea Stewart

Conference Organizing Committee

Reply

Hello,

How is the process of having the name change moving forward. I read your post and would like to hear about the progress. Also, when or what website is for pbc'ers located in the USA . Are their support groups?

Also, when and where is the conference in Vegas?

Thanks

sap

Reply

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