Hi Yall, As most of you know, the name Primary Biliary Cirrhosis is very deceiving. For years PBC wasnt 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. https://surveymonkey/s/PBCnamechange 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
Posted on: Sun, 27 Apr 2014 09:11:35 +0000
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