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How to Find a Liver Specialist Who Really Knows Hepatitis B

Image courtesy of stockimages at FreeDigitalPhotos.net
Image courtesy of stockimages at FreeDigitalPhotos.net

By Christine Kukka

If you have chronic hepatitis B or are newly-diagnosed, it’s important to see a liver specialist who has experience with hepatitis B.

Having a specialist with hepatitis B expertise on your team not only safeguards your health, it also lessens the stress of having a chronic liver disease. “My specialist gave me all the possible scenarios, but most importantly, he gave me my life back,” one hepatitis B patient recalled.

When first diagnosed, it’s often a primary health provider (PCP) or for children a pediatrician who gets the test results and calls to break the news. Doctors may run additional blood tests and/or immediately refer you to a liver specialist. They may recommend a specialist who accepts your insurance or practices in the same healthcare system, but you may have to do some research to find the best specialist to treat your hepatitis B.

There are two types of specialists who treat liver diseases:

  • A gastroenterologist is an internist who has trained in digestive disorders including the liver, but how much liver expertise a gastroenterologist (GI doctor) has varies based on their training. It’s important to find out if they specialize in liver diseases.
  • A hepatologist is a physician who specializes in the liver. This doctor has the most expertise and should be up-to-date about new treatments and clinical trials. But not all hepatologists have treated hepatitis B. Many will have treated hepatitis C, but not hepatitis B, so you need to ask.

Tips for finding a specialist:

  • Are they in the Hepatitis B Foundation directory? The foundation has a Physician Directory of liver specialists who treat hepatitis B around the world. These doctors have voluntarily signed up  for the database. It is not an exhaustive list, there may be hepatitis B specialists in your area who have not yet joined the directory.
  • Call the practice ahead of time and ask questions. How many hepatitis B patients have they treated? Do they participate in any clinical trials?  Are they aware of current monitoring and treatment guidelines for hepatitis B?
  • What’s the doctor’s reputation? Does anyone in your community see a liver specialist for viral hepatitis? Whom do they recommend?
  • Will you actually see the specialist or an assistant? Do you see a specialist only if there is a need for treatment? If you go to a teaching hospital, do you see the doctor or an intern, fellow or resident?

You are entering into a long-term relationship with someone who may care for you for many years. You need their expertise, but you also need to feel comfortable working with them. Do they listen when you speak and make eye contact? Trust and rapport are very critical.

“It’s really important that they don’t judge me,” one hepatitis B patient explained.  Another patient said that finding a doctor who spoke his language, or had an assistant who was fluent in his language, helped immensely.

Once you identify a specialist, here are some questions to ask:

  • Is the specialist accepting new patients? How long do you have to wait to get an appointment?
  • What hospital or lab do they use, and are they convenient for you? It’s important for you to always use the same lab so you have consistent results that allow apples-to-apples comparisons.
  • Will the doctor call you with the results or will a nurse or other assistant communicate with you?
  • What would you like your care plan to be? Will you go for blood tests and then see the specialist? Typically, hepatitis B patients get blood tests once or twice a year to monitor their liver, unless they are undergoing treatment.

How to design a long-distance care plan if the specialist is far away:  Sometimes, the best hepatitis B specialist is a few hours-drive from where you live, but distance doesn’t have to be a deal breaker. Many people see a specialist for a first visit, and afterwards simply have their PCPs or local labs email lab results to the specialist. For this remote healthcare relationship to work, your PCP needs to be willing to partner with the specialist. Also, your specialist needs to be open to telephone consultations with you as needed.

Technology matters. Sharing medical records and lab tests electronically make a remote relationship work smoothly. If there are firewalls between practices, find out how to ensure your PCP and specialist share your medical records. Be prepared, you may have to be the conduit if the two healthcare systems don’t talk to each other.

Insurance and cost: Ideally, the hepatitis B specialist closest to you accepts your insurance or is in your provider network. That doesn’t always happen so finding out the charges in advance is important.

  • Will the specialist bill your insurance or will you need to pay the fee upfront and manage the insurance reimbursement yourself?
  • How much do you have to pay out-of-pocket if the specialist is outside your network, or if you are not insured? Some specialists charge a lower fee to uninsured patients. You may be able to have an annual consultation with a specialist and bring your lab results.

One hepatitis B patient reported he was not entirely happy with the specialist his PCP referred him to. “At the time, I had great insurance so all the tests he ordered weren’t a lot of money out-of-pocket,” he said. “But then I changed jobs and I couldn’t afford all of his tests, and he wanted me to go on treatment though my lab reports didn’t justify it.

“I went looking for a new one and found one in the Hepatitis B Foundation’s website,” he said. “I had to drive farther to see him, but his knowledge and patience were very comforting and he spoke my primary language. He really helped me regain confidence in life. ”

Prepare for your visit: Before you see the specialist, put together a list of questions (see sample questions) and have your lab reports available — either bring hard copies or call ahead of time to make sure the doctor has access to your latest labs and medical records.

After you meet with your specialist, take some time to reflect. Are you happy with the doctor? Did he or she communicate well? Are you clear about what you need to do in the weeks and months ahead to take charge of your health? If the answer is yes, congratulations, you have assembled a good healthcare team.

Distinguished Doctor and Contributor to the Viral Hepatitis Community Dies

Dr. Emmet B. Keeffe, Professor of Medicine Emeritus at Stanford University in Hepatology, passed away unexpectedly on August 8, 2011 after a distinguished career in hepatology. He was sixty-nine years old.

Please join us in extending our condolences to the family, and many friends, colleagues and patients of Dr. Emmet Keeffe.  We are all saddened by his death. Dr. Keeffe was a major contributor in the viral hepatitis community and made significant contributions throughout his 42 years practicing medicine.  Dr. Keeffe had an impressive list of professional achievements, administrative appointments, honors and awards. His clinical research interests focused on the treatment of chronic hepatitis B and C, where he was a principle investigator for many clinical trials treating numerous patients.  Dr. Keeffe has been published extensively throughout his career.

Dr. Keeffe was a true thought leader in the field of hepatitis B who grasped all aspects of this liver disease. He created bridges of understanding between the science, medicine and patient experiences for the entire hepatitis B community. We will miss his active involvement and support of the Hepatitis B Foundation, but most importantly, we will miss his vital contributions to the science and medicine of chronic viral hepatitis.

Emmet B. Keeffe, MD

April 12, 1942 – August 8, 2011

 

Choosing a Liver Specialist to Treat Your HBV

Got HepB?  Which doctor is right for you?  Do you need a hepatologist, gastroenterologist (GI doctor), or an infectious disease doctor?  Is the patient an adult or child?  If you’re new to HBV, these specialty doctors are likely foreign to your doctor line-up, and weeding through the specialty titles and training can be confusing.   However, if you have HBV, it’s essential that you find a knowledgeable liver specialist to monitor and potentially treat your hepatitis B.

A hepatologist is a doctor that specializes in diseases associated with the liver.  Hepatology is a sub-specialty of gastroenterology.  This is an obvious choice for patients with HBV, but it may be difficult to find a hepatologist in your vicinity.

A gastroenterologist, or GI doctor, specializes in the function and disorders of the GI tract, which includes the esophagus, stomach, pancreas, intestines and the liver.  This covers a very broad spectrum of functions and diseases.  The key is to find a GI doctor that has experience treating patients with liver disease – specifically, viral hepatitis, and hepatitis B.  If your GI candidate spends much of his week performing endoscopies, he is likely not a good choice for a liver specialist.

Because hepatitis B is an infectious disease, it would seem logical that an infectious disease specialist would be the best choice.  However, this is not usually the case with hepatitis B, or viral hepatitis, but rather HIV and other infectious diseases.  Your best bet will most likely be a hepatologist or a GI doctor.

If the patient is a child, it is imperative that the child see a pediatric liver specialist.  Some of the best and brightest, cutting edge doctors are both pediatric hepatologists and GI docs.  Children with HBV are monitored and treated much differently than adults.  The labs look different, and the treatment protocols also differ.  You need a pediatric specialist.

Ultimately, the key is finding a liver specialist that has experience monitoring and treating patients with hepatitis B.  You need to ask the important questions.   How many patients are they currently monitoring and treating with hep B?  How is your doctor keeping abreast of the latest and greatest advances in the management of hepatitis B?  Does she attend conferences on viral hepatitis?

HBV is a chronic disease, so you are potentially entering into a long term relationship.  Be sure to ask questions that are important to YOU.  How are test results disseminated?  Are frequent visits required?  Is your doctor open minded – perhaps willing to consult with other experts treating patients with HBV?  It would be great if this specialist is affiliated with a large hospital or university center.  This may provide additional options such as clinical trials, should they become available.  Plus they tend to have a larger patient population, hence more case specific experience.

Typically, the need to visit your liver specialist is not that frequent, unless you are undergoing treatment.  Even then, much of the monitoring and follow-up are in the blood work, and much of that can be drawn locally, with the results sent to your liver specialist.  Some treatment protocols require more monitoring and blood work than others, but even so, it is typically for a short period of time.  This fact is significant, as it expands the size of your geographic circle of potential experts.

The Hepatitis B Foundation maintains a wonderful database of liver specialists for both adults and children.  From there you can check out your potential expert with members of HBV support groups that may have personal experience with your candidate.

Good luck choosing your liver specialist!

Who’s On Your HBV Team?

No matter where you are with your hepatitis B – chronically infected since birth, or recently learned you are HBV positive, you want to be sure you are surrounded by all of the right people to give you the medical guidance and emotional support you need.

Start with your primary care physician (PCP).  You want a doctor that listens to you and is willing to work with your liver specialist.  Your PCP’s office may be coordinating your annual or bi-annual lab work for HBV monitoring and is your first line of care .

HBV can be complicated when it comes to making decisions about whether or not you need monitoring, treatment, or monitoring for liver cancer (HCC).  There are many phases of HBV, and you want to be sure you are followed through ALL phases.  You need a liver specialist that has experience working with patients infected with HBV.  This doctor is nearly always a Gastroenterologist (GI doc) or a Hepatologist.  If the patient is a child, you need a pediatric GI doctor or hepatologist.  Although well qualified, an infectious disease doctor is not really the best fit because of the involvement of the liver.  Once again, experience with HBV infected patients is crucial.  These specialists are often found at large, or University Hospital centers.

Check out this directory of liver specialists in your area.   Keep in mind that living a couple of hours from your liver specialist should be fine.  Visits are typically annual or bi-annual.  Visits may increase depending on treatment you may require.  Lab work can usually be coordinated with your local lab via your PCP.

Get to know your local pharmacist.  They are a wonderful source of information on everything from prescribed HBV medications to choosing the best OTC cold medicines, or pain relievers.  I am on a first name basis with my pharmacist, and try to visit when the volume of customers is low, so no one feels rushed.

Living with a chronic illness can take its toll on your mental health.  Each patient is unique, but generally all patients cycle through initial fear or denial, isolation, worry, and acceptance.  If you feel you are depressed and need help coping with your HBV, seek advice from your PCP, liver specialist, or a mental health expert.

Consider joining a support group.  Sometimes it’s lonely dealing with a complicated, chronic illness like HBV.   Support groups are a great forum for addressing the many concerns when dealing with various aspects of your HBV, from the best treatment protocols to sex and dating.  I belong to two HBV support groups and I find the interactions extremely informative, and the list members caring and very supportive of members in all stages of their HBV.

Take a look at The Hepatitis B Foundation’s website.  There’s a multitude of information from simple HBV basics to in-depth information from world-renowned liver specialists and researchers, along with personal stories.  Ask away if you have any questions.  HBF is here to help, and we hope to be part of your team.