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Reflections from Hep B Free Phildelphia’s HBV Screening Event – CHOP site

Last week ended with an exciting city-wide hepatitis B screening event in downtown Philadelphia.  This event was sponsored by the Hepatitis B Foundation and Hep B Free Philly as part of the Hep B Free Philadelphia campaign. Hospitals included Hahnemann University Hospital, Thomas Jefferson University, Children’s Hospital of Philadelphia (CHOP), and Albert Einstein Medical Center.  Naturally each site was a little different and had their unique challenges. Throughout the four sights there were Hepatitis B Foundation and Hep B Free Philly volunteers, and 100 college-student volunteers. Student volunteers were a mix of pre-med and medical students, public health students, tutors in Chinese, Vietnamese, Korean, Spanish and French, and students interested in doing community out-reach. Twenty community –based organizations were also involved in order to reach out to high risk communities throughout the city of Philadelphia.  During this event, 200 at-risk participants were screened for hepatitis B. Those participants that do not have HBV will be invited to receive their free HBV vaccine.  This info will arrive in the mail with their test results.  Those with HBV will be provided with a linkage to care.

I thoroughly enjoyed my participation at the CHOP location. Although I was not involved in the planning and set-up process, it was clear that the logistics involved in making this multi-screening event come to fruition was extensive.  Testing sites needed to be secured. Community out-reach needed to be done long in advance in order to reach out to high risk communities. Supplies were purchased and carted (via a red-wagon at the CHOP site!) to the various sites. Phlebotomists were hired for the day. Student volunteers were organized. At CHOP, our French translators were essential in making the screening event work.  It was great to see the students take an active part in the event. Some went off campus and distributed flyers. Others manned the give-away desk.  A number of volunteers helped patients with paper work and translations, while a number of students directed and maintained the flow of traffic from one station to the next.  All volunteers worked to make the operation run smoothly.

During the CHOP screening event, participants received their paper-work and went into the auditorium and answered screening questions, signed consent forms, and filled out their self-addressed envelope for their test-results.  Paper work was reviewed by volunteers for signatures and accuracy, and appropriate labels were placed on paper work and tubes by Chari and Jessie – a very tedious process. One small tube of blood was drawn by highly qualified phlebotomists.  Since we were at CHOP, our expertise included pediatric phlebotomists and smaller, pediatric tubes, and tiny needles for kids.  From experience I can tell you this is a real bonus! We did not have many small children screened at our site, but we were happy to accommodate those little ones that were screened.  Each child also got a sticker, a band-aid and a coloring book and crayons following their screening or the screening of their parents.  Water and crackers were available for all that were screened, and each family got a “B A Hero” tote bag.

Following the blood draw, participants were invited back into the auditorium to learn more about hepatitis B, whether it was to address specific questions or in small or larger group presentations.  This is where I spent most of my time.  The majority of participants screened at CHOP were African immigrants. Most were French speaking, so the need for a French translator was essential to our outreach mission.

In the past I have enjoyed providing HBV training in China, but this is my first time working with the African Immigrant population.  It’s always a pleasure to work with different ethnic communities.  In Philadelphia, the prevalence numbers of those with HBV are between 8% and 13% in the African Immigrant community, so getting the HBV basics across is very important in this community. One man was quite empowered by what he learned and asked if he could take some of our HBV information sheets home so he could distribute them to friends and neighbors. We also had a religious leader come for screening at the very end of the event. Hopefully he will bring his message back to his faith community, and it will encourage others to be screened at another time. It doesn’t get any better than that!

Personally, I found the screening event a very rewarding experience. Hep B Free Philadelphia is committed to continutedl outreach and screening in the Philadelphia area for those that missed last week’s event and would like to be screened. Please check it out if you are local and interested in volunteering.  If you’re not local, you might find a Hep B Free organization in your own city.  Get involved!  B A Hero! Save lives! Stop Hepatitis B!

Visit: www.bfreephilly.org

Check out: Reflections from the 10/22 Screening  Event at Thomas Jefferson University

Viral Hepatitis Meetings in D.C.

Last week was an eventful week for this HBV blogger.  I was fortunate to be able to attend the National Viral Hepatitis Technical Assistance and the National Viral Hepatitis Round Table (NVHR) meetings in Washington D.C. last Tuesday and Wednesday. These meetings were followed by Capitol Hill visits on Thursday by viral hepatitis advocates to their legislative offices.

In attendance at the meeting were state viral hepatitis coordinators from around the country, other state health department personnel, government representatives from various agencies and organizations, and numerous viral hepatitis advocates from various non-profit organizations. It was a great opportunity to meet colleagues from all over the country dedicated to combating viral hepatitis in the United States.

Please keep in mind that my background is patient oriented, and that I do not have a master’s degree in public health, nor do I have experience working in the public health system.  Keeping up with the political front is challenging as is keeping up with the public health system. I’m still trying to figure it all out. Both have their own language and acronyms. After a couple of days of meetings, I have a great deal of respect for those working in public health at both the federal and state level.  I also have a great deal of respect for those working to push policy on behalf of viral hepatitis. There’s always more to learn, but you can still make an impact by jumping in and getting involved at a number of different levels.

A couple of messages were loud and clear at the meeting and you didn’t need to be an expert to understand them. Perhaps the biggest message is that funding for viral hepatitis public health programs is very limited and the burden is well beyond the level of funding.  This comes as no surprise since these are difficult times for both state and federal government programs.  This lack of funding will require that all health departments, government organizations and agencies, advocacy groups and non-profits pull together using what I call the 3-C’s:  communication, coordination, and collaboration.  Don’t forget to be creative, resourceful and wrap it all up with a coordinated IT system.

What was nice about this forum is that people were able to see what was going on in other states.  Bringing people together infuses new information into the group, while creating relationships where people want to help one another.  This is imperative if we are to address viral hepatitis needs with a minimal budget. One viral hepatitis coordinator reminded people during a break-out session that there are small pots-of-money out there, but you’re going to have to be creative when looking for grant opportunities.

Chris Taylor from the National Alliance of State & Territorial Aids Directors (NASTAD) asked me, and others to do a video-taped interview where I was asked about my personal hepatitis B story. This was a great way for me to make a contribution, and I was happy to help. Telling your story can be a compelling way to raise awareness and get involved.

Natalie Cole was in D.C. doing a press conference promoting her “Tune In to Hep C” campaign. NASTAD arranged for her to make an appearance at the NVHR meeting.  It’s always great to have a celebrity figure to promote a cause and raise awareness with the general public. They are able to reach so many people at one time!

Thursday’s Capitol Hill visits were a great opportunity for viral hepatitis advocates to get in front of their own Representatives in Congress, or their state Senators. Each person on the visit brought her talents to the table.  Some were up on politics, policy and the process, while others dealt with the hepatitis at the public health level.  Finally, there are people like me that are most familiar with hepatitis B on a personal level.

The meetings made it clear that we all need to collaborate and be creative if we are going to combat viral hepatitis.  Americans living with viral hepatitis may be wondering what Washington or their home-state is doing about viral hepatitis.  Things are being accomplished.  Based on the Institute of Medicine (IOM) report, we have the HHS Action Plan for the Prevention, Care & Treatment of Viral Hepatitis that was introduced last May.  Planning and process is currently being written around the plan.  People are in place and they are working hard, but the system and its processes are huge, complicated, and slow moving.  It is certainly not a perfect system, but we can all contribute at some level to make this an issue important to those that do drive policy, and ultimately fund programs.

Where do you fit in?  If you are in policy or public health you know you have a big job ahead of you, but it is essential that you keep looking for ways to move the system more effectively and efficiently. If you’re living with HBV, you might think you can’t make a contribution, but that is not true. This is where “arm-chair advocacy” comes in.  Not everyone is going to head to D.C. to meet with their Senator or Congress person. However, you can make your voice heard.  Visit your representative when she is home for constituent work week.  A simpler, but equally effective alternative is to write, call, email or tweet your Representative or Senator.  Let your Representative know that you are living with hepatitis B, and that you want him to support viral hepatitis legislation. Use your voice and make your vote work for those living with HBV in your state!

Living with HBV and Dealing with “Itchy” Skin

The previous Hepbtalk blog discussed skin manifestations associated with hepatitis B and liver disease. This is a follow-up with some suggestions on dealing with rashes and pruritus (itchy) skin. Unfortunately, I have experience with this.

Most people living with HBV have episodes with rashes that itch, or with an itch without the rash. Rashes can be caused by all kinds of things, but the skin truly does let us know when there is something going on with our body. We may not be able to eliminate the itch, but we can work on providing the body with a little relief, and to be sure we do not do anything to make the persistent itching worse.

First, consider the root of the problem. It is possible that your rash and itching are unrelated to the current status of your HBV infection.  Unless you have serious liver disease, this might be difficult to pin down since many living with chronic HBV have compensated livers that perform all of the necessary liver functions required for life.  That does not mean you aren’t going crazy with itchy skin, but it is important to look at other factors that may be contributing to your pruritus.

  • Are you currently being treated with IFN or PEG for your HBV?
  • Have you recently started a new medication?
  • Do you have allergies, seasonal, food or otherwise?
  • Do you have other symptoms that might relate to another virus or infection?
  • Have you recently switched laundry detergents or rinses?
  • Have you recently switched any of your personal care items – shampoo, soap, creams, deodorant, etc.

Try to determine if there is a pattern associated with your skin problems.  Any of the above can cause rashes or pruritus without the added complication of HBV or advanced liver disease from HBV. I was convinced that HBV was the root of all skin problems, but I was wrong. That’s why it’s good to look at other possible sources so you can at least eliminate the things you have control over.

Here are some simple things you can do to help reduce the degree of pruritus:

  • Choose products that are unscented including laundry detergent and dryer sheets, along with shampoos, conditioners, creams and other personal care items. Unscented products are better for you liver, anyway. Everyone in my house is clean, but there is no fresh, clean smell.
  • Avoid soaps and use gentle skin cleansers like Cetaphil (another favorite in our house).
  • Use moisturizers that contain a minimum of alcohol, since alcohol is drying.  There is sometimes a balance with thick vs. thinner creams. We bounce back and forth between Cetphil and Eucerin, but you might have to test a few of them before you find the one that works best for you.
  • Take tepid rather than hot showers and baths, but be sure to bathe daily.
  • Wean your kids out of the tub ASAP.  This broke my heart, but the extra time in the bath is drying.  (However, oatmeal baths are recommended, even though this didn’t work for us). Don’t spend too long in the shower.  Learn to take a 5 minute shower.
  • When you come out of the shower, do not completely dry yourself, and immediately apply gentle cream or lotion from head to toe to lock in the moisture.
  • Use topical steroids in order to combat affected skin patches.  For kids we found the ointment, though a little messier, was more effective. Take care when topicals are used for extended periods of time.  It thins the skin, which can be especially problematic in the summer. Don’t forget sunscreen, too!
  • Keep nails cut short to avoid the temptation.  We even tried gloves and socks at night.  Try to avoid scratching with sharp objects, but be sure to properly sanitize them if they are used inappropriately. We often had concerns with “weepy” skin and needed to keep it covered in public.
  • If you choose to add humidity during the winter months be careful to balance that with possible dust mite allergies.  We initially used warm mist humidifiers and that was a big mistake, even though it feels great.  Unfortunately it took us a while to make that link.  As it turns out, a more moderate temperature is better – that and additional circulation with a ceiling fan.
  • Stay hydrated by drinking plenty of water
  • After swimming in a chlorinated pool, be sure to rinse immediately and apply moisturizer.
  • Pruritus is worse at night, so take an anti-histamine like Benedryl or prescription Atarax to help with the itching.  Atarax is effective for a longer period of time, so it’s a favorite in our house.

Although the “itching” in our house brought many tearful nights, and nasty looking skin patches that persisted for years, it did get better over time, with changes. It is important to note that is was much worse during treatment with interferon. Pruritus truly is a horrible, sometimes unrelenting symptom for those with more advanced liver disease.  Although the above ideas are worth investigating, it is important that you discuss severe pruritus with your doctor.  There are more potent prescriptions available that might help reduce the relentless itching.

Got any tips for reducing the itch? Feel free to comment and share your ideas with others living with HBV.

Got HBV? What is Your Skin Trying to Tell You?

The liver is the largest solid organ in the body, and your skin is the largest organ.  It only makes sense that the skin may be a window into what is going on inside your body and your liver.  The problem is trying to figure out what your skin is trying to tell you!

The most common skin manifestation associated with “hepatitis” is the yellowing of the skin (jaundice) and the sclera, or white part of the eye.  Jaundice  may be associated with a newly acquired or acute hepatitis B infection.  It certainly gets your attention and gets you to the door of your doctor, which is a good thing.  However, keep in mind that HBV is often asymptomatic, with few or no obvious symptoms, and jaundice is a more severe symptom of an acute HBV infection. Jaundice may also occur in those with advanced liver disease, and a decompensated liver. Jaundice is due to an accumulation of bilirubin, a yellow pigment, in the blood and tissues.  Your liver is responsible for controlling the levels of bilirubin.  If your liver is having problems performing basic, yet essential functions, yellow skin, eyes, dark urine, and itching (pruritus) may all be due to an inability to filter excess bilirubin.  Please see your doctor immediately if you experience jaundice of the skin or eyes.

It is also not uncommon for those with more advanced liver disease such as cirrhosis to have palmar erythema, which presents like red palms –especially around the base of the thumb and little finger.  Keep in mind that there may be other reasons for experiencing red palms, such as high blood pressure, pregnancy, or elevated estrogen levels. Talk to your doctor if you have concerns.

Spider nevi or spider angioma are another indicator of more serious liver disease. These are not to be confused with spider veins. It is also important to note that 10-15% of healthy adults and children have spider nevi, with no underlying disease. They range in size from 0.5 to 1 cm in diameter, with a dark center, radiating out to fine, red lines. When the center is depressed with the finger, the radiating lines disappear, and then re-appear, when the finger is lifted. Spider nevi may be caused by an increased level of estrogen in the body.  Naturally these may also appear during pregnancy, and in women using oral contraceptives. Following pregnancy and the discontinuation of contraceptives, the spider angiomas will disappear on their own. Like so many basic, but essential functions, the liver is responsible for breaking down and removing excess estrogen. Spider nevi associated with liver disease tend to be large in number and appear on the upper part of the body, face, and neck – especially on the backs of the hands and arms. Once again, it is a good idea to point out these out to your doctor.

Gianotti-Crosti Syndrome is a rash associated with HBV and EBV (Epstein Barr Virus). This rash almost always occurs in children, with 90% of kids under the age of four. The rash may last from two to eight weeks. Basically, it’s just a response to a virus, and nothing to worry about – just an indicator. Kids often have a rash for one reason or another.  If the rash is excessively itchy, talk to your pediatrician about using a topical steroid. Every parent of a child with HBV is convinced their child has some sort of HBV associated rash. (Speaking from experience…) Even the pediatric liver specialist was unsure, so she got a consult with a pediatric dermatologist.  The rash was unrelated to HBV.

Wondering about your finger nails?  There’s a condition called Terry’s Nails which is present in many of those with cirrhosis. The nail appears mostly white, similar to the appearance of “ground glass”, and possibly with a little pink strip at the top of the nail bed.  This is due to a decrease in blood flow to the nail bed and an increase in connective tissue.  Remember that your doctor will not be able to see any of this if you wear nail polish to your appointment.

How about your basic rash that is associated with hepatitis B?  Rashes are most often associated with acute hepatitis B infections, although a recurring rash may occur in those chronically infected.  Talk to people living with HBV and they’ll tell you they have occasional rashes and annoying itching, even if their doctor may tell them they do not.  Could be totally unrelated, or it could be erythematous papular lesions, or palpable purpura.  In other words, your basic red or purplish, raised, bumpy rash. It’s not easy to find specific information linking your basic rash to HBV, but when you consider how the skin is a window to your general health, it makes sense that you may see skin manifestations that reflect your immune system response to your HBV infection as it cycles through various stages, phases and flares.

If you are living with HBV, you know the importance of monitoring your HBV status and your liver health.  Annual, bi-annual, or the schedule recommended to you by your liver specialist, will keep you on top of what is going on with your HBV and any associated liver disease.  However, it is good to take notice of any changes in the skin and nails as the liver is a non-complaining organ.  Sometimes we have to look for evidence that something is going on. That being said, I feel the need to rush to a mirror and check myself out after having researched and written this blog.  The skin may be a window to our general health, but it is not always easy to figure out what it’s trying to tell us. If you have any questions, don’t try to self-diagnose. Talk to your doctor and bring any of your concerns to his attention.

B A Hero…Free Hepatitis B Sreening Day!

Hep B Free Philadelphia is putting on a city-wide “B A Hero” free hepatitis B screening day on Saturday October 22, 2011. Free hepatitis B screenings will be available at the following hospital sites:

  • Jefferson – Focusing on the Chinese community and will be a bi-lingual event
  • Einstein – Focusing on the Cambodian community and others, and will be a bilingual event
  • Children’s Hospital of Philadelphia (CHOP) – Focusing on the African community and the screening of entire families, including kids.  Event is bi-lingual (French/Haitian Creole)
  • Drexel – Focusing on the Chinese and Korean communities.  Event will likely be tri-lingual.

Please join us.

B sure and B tested

All screening and education is Free!  Fun give-aways for everyone screened!

 All test results are private and will be mailed to the individual.

 

Thoughts on Disclosure for Children with Hepatitis B

If you are a family with a child with HBV, or a family considering the adoption of a child with HBV as a special need, it is important to consider how you will manage your child’s hepatitis B information. As an adult you are making your own personal disclosure decision, but when you are dealing with your child’s personal information, it is a decision that needs to be made with the entire family to be considered. Think long and hard. Once this information is out, you cannot take back.

Something that I did not truly consider when we were making this decision was the fact that this was not really my information, but rather my child’s information. Our child was a baby at the time. We could not know her personality, and what kind of a person she would become with time. We were fully immersed in the baby scene, and were not even thinking about the teenage years. Little did I know that teens have an opinion about everything. My kids lost interest in discussing their adoption story at the store check-out by the time they entered elementary school. Certainly no one wanted to be the adopted kid with hepatitis B. No one wanted to be the adopted sister of the adopted kid with HBV. I cannot speak for other kids, but that was the case with our own children. In general, kids want to blend.

Initially we were concerned about sending the wrong message to our children by not disclosing this information. There should be nothing to hide, so we forged ahead with our information in a couple of small, selective circles. These were carefully chosen groups, nothing permanent like our neighborhood, since we could not afford to move if there were repercussions. Disclosure was abruptly halted after a confrontation with the early intervention team at our home school. Had we not been under the advisement of counsel, I fear the situation would have resulted in a breach of information we might not have been able to contain. I have heard similar stories from other adoptive parents, and it makes me cringe every time.

Parents are fiercely protective of their children – especially when they are young. I have heard heart-wrenching stories of broken friendships, neighbors that no longer speak, and the distancing of family members, all over the disclosure of information that perhaps should not have been imparted. But who knows who will be accepting and tolerant, and who will refuse to let your child play next door? Sadly, people lack basic information about HBV, and even in the U.S., there is a stigma associated with infectious diseases. They do not know anything about HBV, or how it is transmitted. They may not even be aware that their child is vaccinated against hepatitis B. They may choose to err on the side of caution, and choose not to have your child play with their child.

Although we made a family decision to not disclose, there were people that we chose to tell. Disclosing to family did not go the way I had expected, and I’m glad there are a few states between us. Fortunately with time and distance, people forgot about it, because they never fully understood it from the beginning. Disclosure to selective friends worked for us, but there were few that were told. We disclose to all treating physicians.

On the pro-disclosure side, I am aware of families that have disclosed their child’s HBV information and it works well for them. They are pleased with the support they receive from friends, school, church and family. They have made the decision to educate and raise awareness as a family. I commend that. Perhaps I am even a little envious, because that is how it should work! Unfortunately it did not work well for our family, where we live. Now that my daughter is in high school, she is okay with her HBV status. Fortunately she’s not truly “out there” with her information, but she has contributed in her own way to raising HBV awareness in selective circles.

To disclose or not to disclose, it’s a family decision. Think about it, and do what is best for your entire family.

Options for HBV Vaccine Non-Responders

 

Are you a hepatitis B vaccine non-responder? Approximately 5-15% of people who receive the vaccine are considered non-responders. This is especially important for health care workers, families living in households with people that have HBV, and others who may be at increased risk of exposure to HBV.  A vaccine non-responder is someone that does not build up an adequate immune response after receiving two, 3-shot series of the HBV vaccine.  In other words, they complete one series of the HBV vaccine, and follow it with a surface antibody test (HBsAb or Anti-HBs) 4-6 weeks following the last injection of the series.  If the anti-HBs titre is not greater than 10IU/l, than the series is repeated, preferably with an HBV vaccine from a different manufacturer, and the person is once again tested for immunity by testing for adequate anti-HBs. (See previous blog, “Got Hepatitis B? Keeping loved ones safe though HBV vaccination” for details)

Fortunately there are other options for those concerned with being an HBV vaccine non-responder. There is a higher concentration of the HBV vaccine recommended by the CDC that is used for patients undergoing dialysis, and for those that are immune suppressed.  It is a 40µg/ml concentration. If it has been one year or less since you completed the three-shot series of the regular concentration of the vaccine, you can try one intramuscular dose of 1.0 ml of the 40µg HBV vaccine.  If it has been more than one year since your last three shot series of the vaccine, you can repeat the entire three-shot series with the 40µg concentration of the vaccine.  Follow up with an anti-HBs titre test 4 to 6 weeks following the last injection to ensure it is greater than 10 IU/l, and that you have adequate immunity.

If you continue to remain a non-responder, you can try a series of as many as five intra-dermal injections, given every two weeks, using the 40µg concentration of the HBV vaccine.  Dose one consists of 0.10 ml of the 40µg/ml vaccine, followed by the same dose two 2-weeks later.  At that time an anti-HBs titre test would be drawn to check for immunity.  If there was not adequate immunity, a third-intra-dermal dose of the vaccine would be given two weeks later.  Anti-HBs titres would be checked every two weeks and the patient would be given another intra-dermal injection up to a total of 5 intradermal injections of the 40µg concentration of the HBV vaccine. Don’t forget to ensure that your anti-HBs titre is greater than 10IU/l.

Please note that the schedule for the series might vary depending on the study your doctor chooses to follow.  However, it is recommended that the higher concentration (40µg) of the hepatitis B vaccine be used for best results.

To Disclose or Not to Disclose, That is the Question

Choosing to disclose, or not to disclose your hepatitis B status is a very personal decision.  The key thing to keep in mind is that once this private information is out, it cannot be reeled back in.  It’s best to stop, and give it serious thought before you move forward with your decision.

Being diagnosed with a chronic illness can be overwhelming.  Many are shocked by their HBV diagnosis. Some have been living with HBV since birth, but because it is often a silent infection, with few to no symptoms, they are surprised they are infected.  Others may have no idea how they were infected. A support network of friends, family and loved ones is important at this time.  Sadly, your news may elicit a variety of responses, from loving support to complete avoidance.  Unfortunately, there is often a stigma associated with HBV.  People are afraid of what they don’t understand, and most are ignorant about infectious diseases.  It’s something that happens to someone else.  Little do they know that HBV does not discriminate.

Here are some important points to consider:

  • Location – Where do you live?  If you live in a large city or community, you may be able to better pick and choose who learns of your HBV status. In a larger community you may have a little more flexibility to move around, or make changes if your HBV disclosure is a problem.  If you live in a small town, with few employment opportunities, and a hand-full of nosy neighbors, you might want to think long and hard about telling anyone in your community.
  • Family – Only you know your family.  Depending on your ethnic background, there may be a cultural stigma associated with having HBV. Break the news gently and be prepared to supply easy-to-understand information. Remember there is the possibility that you acquired your HBV infection at birth, and other family members may be at risk and need to be tested.
  • Work – Unless you are symptomatic and missing work due to your HBV, it might be a good idea to keep your hepatitis B status under wraps.  In many countries, an HBV infection destroys careers.  Even subtle discrimination can ruin your reputation at work.  If you require time off due to HBV, be sure to take it up with human resources.  Your information will be kept confidential.
  • Sexual partners – It is more important than ever to ensure you are having protected sex if you are not in a monogamous relationship. If you have HBV, you do not want a coinfection with another infectious disease like HCV or HIV.  Insist on protection, and use a condom.  You owe it to yourself and your partner(s).  Be sure any significant others are vaccinated.  If you believe they have been exposed, then they need to be tested. The flip-side is the concern with a relationship that turns serious, where you have not yet disclosed your HBV status. This is a difficult balance.  They may be hurt or angry that you did not disclose, earlier, and yet you don’t want to enter every new relationship spilling all of your private info.
  • Friends – Friends have been made and lost over personal information such as HBV disclosure. If they can’t accept you, living with HBV, who needs that kind of friend?  This is true, as long as they will respect your privacy and choose not to disclose your private information to others. Take a good look at your friends, and remember that many really are acquaintances.   Acquaintances do not need to know the details of your HBV status.  It’s your choice who you decide to tell.
  • Medical professionals – All health care providers must practice infectious disease protocols and standard precautions.   It keeps everyone safe.  That being said, it is important that your doctor is aware of your status.  He is making treatment decisions and prescribing medications that could effect your liver health. HIPAA regulations will keep your private information protected at medical offices.
  • Support groups – It might be difficult to find a traditional hepatitis B support group, but there are wonderful on-line HBV support groups out there.  This is a great environment to query others living with HBV about who they choose to tell and not tell.  It helps to hear it from others that truly understand what you are going through.  Friends and family may love you, but it’s very possible they won’t fully understand what you’re going through.   As the newness of your HBV diagnosis wears off, I can promise that things will get better.  Give yourself a little time….

Disclosure truly is a personal decision. There is no right or wrong answer.  Much depends on your personality and what you can live with. When you make the decision to disclose, you need to make the commitment to educate.  This is admirable because it takes courage to stand up, raise awareness, and be out there with your personal story.  The response from others may surprise you – for better or for worse!  Just remember that before you decide to disclose, you had best be informed.  Educate yourself, so you can educate others on the HBV basics and help raise awareness.  Let friends know  how HBV is transmitted.  Encourage hepatitis B vaccination. Arm yourself with simple explanations.  Your goal is not to scare your audience, but rather raise their awareness of those living with hepatitis B.  Remember it’s your decision, but take your time…

Living With HBV and Drinking Coffee

The pros and cons of drinking coffee have been wildly debated for years.  However, for those with Hepatitis B and other liver diseases, the addition of a couple of cups of coffee per day to slow down the progression of liver disease, along with decreasing the risk of diabetes and heart disease just makes sense.

Dr. Melissa Palmer was a guest speaker at a previous Hepatitis B Foundation patient conference. The information from her presentation had all sorts of nutritional nuggets for those with HBV (Check out Dr. Palmer on podcast if you would like to have a listen!) She stated, based on studies, that coffee and caffeine intake has been associated with improvements in liver ALT and AST levels.  There also seems to be a correlation between increased coffee consumption and warding off cirrhosis and HCC.

Just recently there are was an article that discussed the benefits of coffee for those patients with HCV, undergoing treatment with pegylated interferon (PEG) and ribavirin therapy.  It claimed that drinking three or more cups of coffee a day not only reduced some of the difficult side-effects associated with treatment of PEG, but it also increased the treatment success.  However, like so many of these coffee studies, it was a small study and had to be adjusted for other factors.

We all know that HBV and HCV are very different viral infections, but you have to wonder if any of the benefits of coffee that is seen in those being treated for HCV can be extrapolated to include those with HBV being treated with Pegylated interferon or antivirals.  Dr. Palmer did mention that coffee did seem to have a greater impact on those with hepatitis C, although I have no idea why.

Regardless, if you’re living with HBV, you have to think about the pros and cons of adding coffee to your daily list.  Since all studies seem to show an increased number of cups of coffee having a more positive impact on preventing liver disease progression, or warding off cirrhosis or potentially reducing PEG side effects or benefiting treatment, you have to consider just how much caffeine you can take.  It does not appear that caffeine is the only factor involved, but rather the coffee bean itself and associated antioxidant features.  This seems to be the case because tea, despite all of its benefits, does not appear to have the same protective effect on the liver.

What about decaffeinated coffee?  I kept looking to see if it was specifically referenced, but I haven’t seen it. However, during the decaffeinating process, much of the bean is lost, and it may be treated with a chemical solvent, both which might nix the positive benefits.  If you’re going to give decaffeinated coffee a try, consider a coffee with a more natural decaffeinating process. Personally, I’d have a tough time balancing the jitters and racing heart rate associated with drinking more than a cup or two of high-test coffee a day, but we’re all individuals.  If you can drink coffee and sleep well at night, it seems like it can’t hurt your liver health to add a few cups to your daily regimen.

Having HBV and Using Immunosuppressants

Studies have shown a direct danger of HBV reactivation for those patients that were previously HBV infected, currently surface antigen-negative (HBsAg -), and using ‘biological response modifiers’ (ex. Rituximab, which has a black box warning).  These patients may be under-going treatment for lymphoma, rheumatoid arthritis, irritable bowl or other serious diseases.  Dangerous reactivation of hepatitis B can be prevented by the simultaneous, prophylactic  treatment with HBV antivirals.  Guidelines exist for screening patients, and the need for prophylaxis is understood, but unfortunately not known or followed by all treating physicians. This is a real danger to the patient, and can result in a fatal outcome.

The topic of general immunosuppressant use has come up repeatedly at previous HBF hepatitis B patient conferences among those currently living with hepatitis B. Patients took it upon themselves to ask the experts what they thought because they were constantly on alert for things that might impact their HBV status.  Immunosuppressants are drugs that are used to treat all kinds of acute and chronic conditions.  They tamp down the immune response by suppressing it.  This could be problematic for someone with HBV, because the virus  may replicate readily with the immune system suppressed. The evidence is out there for hard-core long-term immnosuppressants or targeted therapy as noted above,  but there’s not much out there about the general use of steroids for those with HBV.  It’s worth thinking about, and having the conversation with your liver specialist because we are always looking for ways to avoid further liver injury.  Here are a list of typical steroids that many of us use while living with HBV. They are listed top to bottom, from the least concern to greater concern.

  • Topical steroids – (least concern) creams or ointments applied to the skin for things like eczema and other dermatitis
  • Steroid inhalers – used for asthma and other respiratory related conditions
  • Oral steroids – numerous uses, varying doses, varying duration of use
  • IV steroids – May be given during surgical procedures as necessary or prophylactically, or in an emergency

There is little concern about steroids that are applied topically or delivered through an inhaler.  These may have other issues or potential side effects when used long term, but they should not affect your HBV status. We struggled with this one in our household, as potent prescriptions were prescribed and the topicals were applied daily for l-o-n-g periods of time. Discuss this with your doctor if you have concerns, but keep in mind that it should have no impact on your HBV.

The oral dosing of steroids will vary greatly by the condition, and then by the prescription, dosing and duration of use. If you are considering use of oral immunosuppressants, especially extended use, then don’t forget to remind your prescribing physician about your hepatitis B. They may not always recall that you have HBV.  Have the converstion with your liver specialist about your HBV status, whether or not you’re currently being treated, and the new immunosuppressive  drug you are to be prescribed.  Weighing the pros and cons will be dependent on an individuals’ HBV status. You want to be sure you’re safe!

Talk to your liver specialist about his thoughts on IV steroids and their use during surgical procedures.  Our liver specialist told us to avoid IV steroids if possible, although in the event of an emergency, the acute emergency trumped any HBV concerns. I also learned that steroids are sometimes given prophylactically for some types of surgical procedures. One surgeon, highly regarded in his field, was aware of the patient’s HBV status.  However, he was not an HBV expert and had never considered the prophylactic dose of steroids he typically used. We were in agreement, that if it did not appear to be needed, then it would not be used.  Once we had the discussion, I was content with his decision. If a situation arose requiring the use of IV steroids then I would know that the benefits of having the steroid outweighed any potential risk to the current HBV status.

Please don’t be afraid to be your own hepatitis B advocate.  Most doctors are not HBV experts. They’re experts in something else!  If you have concerns about immunosuppressants or other forms of treatment, then bring up the topic at your next visit with your liver specialist.  Then you’ll have the information you need so you can discuss these topics with other doctors, should the need arise. Keep a file of pertinent articles to reference, and the the contact information of your liver specialist in case your doctor would like additional input on a particular topic.