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Hepatitis B Diagnosis & Monitoring, Hepatitis B Treatment, Living with Hepatitis B

Hepatitis B and Vitamin D

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Vitamin D is essential for everyone, but how might vitamin D help those living with HBV? Vitamin D is especially important for children and older adults, as it aids in the body’s absorption and regulation of calcium and phosphorus, which helps form and maintain healthy bones and teeth.  Vitamin D is also a potent immune modulator, and aids in the prevention of hypertension, and cancer. Vitamin D levels appear to play a critical role in type I and type II diabetes, glucose intolerance, and metabolic disorders.  Studies have also shown a link between low vitamin D levels and NAFLD (Non-alcoholic fatty liver disease), independent of metabolic syndrome, diabetes, or insulin-resistance profile (for those without HBV). The lower the vitamin D level, the higher the risk for NAFLD, or fatty liver disease.  The liver plays such an integral part in digestion, regulation, storage, and removal of toxins – the list goes on.  You can’t live without it!  As a result, it seems logical that healthy levels of vitamin D would benefit those living with HBV, if adequate vitamin D levels help reduce the risk of NAFLD, metabolic syndrome, etc.

Vitamin D is a potent immune modulator.  It has been on the radar for the prevention and treatment of infectious diseases for years. If you are being treated for HBV, you may want to discuss the potential benefits of adding vitamin D to your current therapy.  It has been shown to benefit hepatitis C patients undergoing treatment.  There is currently a clinical trial in Israel looking into the possible benefits of adding vitamin D supplementation to hepatitis B patients undergoing Peginterferon, or treatment with nucleotide analogs.

While researching this blog, I ran across a couple references that mention Fanconi’s Syndrome and vitamin D.  This is interesting since Fanconi’s Syndrome may be acquired as a result of HBV treatment with tenofovir.  Fanconi’s Syndrome and supplementation with vitamin D is also mentioned on the Mayo Clinic site.  The problem is there are no studies that definitively discuss the benefits of vitamin D supplementation for those living with HBV.  I am no doctor, but there seems to be a connection between vitamin D and good liver health.

Start by talking to your doctor or liver specialist about the pros and cons of considering additional vitamin D in your diet. Request that your vitamin D levels be tested so you get a snapshot of your current levels. I had my girls’ levels checked.  They were adequate, but I regretted having them tested during the summer break when they are outside more often. I wonder how this reflects on their levels in the winter when they are rarely outside?  Food for thought.

The 25-hydroxyvitamin D (25(OH) D) blood test is used to measure serum levels of vitamin D. Normal serum levels, indicated by the Institute of Medicine (NIH), are 50 nmol/L (20 ng/mL) or greater.  Low levels are under 30 nmol/L (12 ng/mL).  See detailed charts for age specific requirements. There are all kinds of reasons for inadequate levels of vitamin D, so it is important to follow up with your doctor if your results are out of the normal range.  You may require additional testing.

It is important to maintain a balance and use common sense when considering supplementing your diet with Vitamin D.  Vitamin D is essential, but too much of a good thing can be dangerous to your health. Be sure to keep your doctor in the loop – especially if you are currently undergoing HBV treatment.

Check out Thursday’s blog for those looking for vitamin D details and sources.

Hepatitis B Diagnosis & Monitoring, Hepatitis B Treatment, Living with Hepatitis B

The Hepatitis B Foundation’s Hepatitis B Clinical Trials Page

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Did you check out Tuesday’s Hep B Blog, “Participating in HBV Clinical Trials” for those living with Hepatitis B?  It’s time to have a more in-depth look at the HBV  trial entries that are updated monthly on The Hepatitis B Foundation’s (HBF’s) Hepatitis B Clinical Trials web page. Roughly 350 trials out of the 112,278 clinical trials maintained by ClinicalTrials.gov pertain to HBV related studies.  The ClinicalTrials.gov site is a registry of trials that located in 175 different countries.  Changes to ClinicalTrials.gov are an ongoing process.

Each month the HBF’s Hepatitis B Clinical Trials web page is updated based on a thorough review of clinicalTrials.gov registry.   Trials that are new and are recruiting are added.  Completed trials are deleted, and modifications are made based on the “last updated date” of the each trial entry. All identified trials are active and currently recruiting patients. Modifications may include anything from additional site locations added to the trial, to new contact information, or even a change in protocol.  A few international trials are in an unknown state, but remain on our page until we hear word if the trial is completed, or no longer recruiting patients.  If you are local and interested, it is worth pursing to get the current status.

The page is divided into U.S. trials, International trials, Co-Infection trials, Pediatric trials, HBV & Liver Transplantation, HBV & Liver Cancer, and HBV Reactivation and Lymphoma. Some of these categories are more recent and were added to address other areas for those living with HBV.

Recently HBF has made an effort to include trials, within the country of origin for the trial, that not only treat HBV, but also monitor patients.  These long term studies may use new, experimental techniques to monitor HBV patients, or those at high risk for HCC.  There are also opportunities to participate in long-term studies that monitor patients and look for common factors, trends etc. among those living with HBV.  It’s another opportunity to meet with  cutting-edge liver specialists, and possibly even contribute by helping researchers determine factors that may cause HBV disease to activate, or worsen, or hopefully improve.

So have a seat at your computer and review HBF’s Hepatitis B Clinical Trials web page, or go to the individual section that interests you.  The trials listed contain the original title, the purpose, or basic description of the trial.  Due to logistics, the trial site is very important, which is why all entries contain the countries included in the site unless they are too great to list. Then they are listed as “international“. Contact information is also maintained and updated, with a link to email and phone contact info.  Most importantly is the NCT number (NCT followed by an 8 digit identifier), or ClinicalTrials identifier, which is how all trials are referenced in the ClinicalTrials.gov registry. By clicking on the NCT#, you will be linked to the trial of interest directly within ClinicalTrials.gov, where you can investigate the details of the trial and see if it is of interest, and whether or not you meet the criterion for participation.

Give it some thought and think about whether an HBV clinical trial is an option for you.  Discuss your ideas with your liver specialist, and confer with others in HBV support groups that may have experience with a drug, or past clinical trial experience.  Feel free to contact HBF with any questions you might have regarding clinical trials.

If you think of a way to make our clinical trials page more user-friendly, or trial categories that might be missing, be sure to leave a comment and let me know.  And if you happen to find an HBV trial that is recruiting, but is not listed, please be sure to let us know. HBF is here to help!

Hepatitis B Diagnosis & Monitoring, Hepatitis B Treatment, Living with Hepatitis B

Participating in HBV Clinical Trials

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Have you considered participating in hepatitis B clinical trial?   A clinical trial can be a great opportunity to take advantage of the latest advancements in HBV treatment and monitoring, typically without expense to the patient.  It can open doors and provide an opportunity to interact with liver specialists on the leading edge of treating HBV.  There are numerous clinical trials for hepatitis B offered all around the world, from adult to pediatric patient populations.

There are three testing phases that drugs go through before they are approved for use for by the FDA.  A fourth phase examines long-term use.  This is a rigorous process, costs hundreds of millions of dollars and takes 12-15 years before a drug is finally approved. Check out the animated Drug Discovery Time Line to get a better appreciation for the process.

A major advantage of participating in a clinical trial is that expensive treating medications, clinical monitoring, and lab work are typically provided without expense to the patient, and the patient is monitored throughout the process by experienced, participating liver specialists.

The next thing to consider is whether or not you are eligible for a particular trial.  There are various inclusion/exclusion criterion.  Some trials or studies are looking for patients that are treatment naïve, (patients who have not taken medications for HBV) while others are looking for patients that are treatment experienced, (patients who have taken particular medications for HBV) but may have failed on one treatment protocol, and might need “rescue therapy,” such as an antiviral to replace a previous antiviral where a resistance to the drug has occurred based on a viral mutation.  It varies with trial.

Other studies may be looking for candidates based on HBe status (positive or negative), degree of liver damage, or ALT or HBV DNA levels over a particular time period. You must first qualify before you consider participation in a trial or study, so be sure to check the qualifying criterion, and discuss with your doctor.

Naturally, each candidate will need to weigh the risks versus the benefits of receiving an experimental drug. Discuss the pros and cons with your doctor. Do you really need treatment for your HBV at this time? What are the possible short and long term side effects? Do you think you can manage them? You know your body best. What about the logistics?  Is there a need for frequent lab work?  Does it need to be done on site, or can blood be drawn at a local lab?  What happens when the trial is complete?  This is especially important when considering antivirals. Will you need to remain on the medication when the trial is complete?  Will you be financially responsible, and if so can you afford it?  Will participating in a trial exclude you from future trials?  What about resistance and cross resistance to future drugs? These are a few of the questions for which you need to think long and hard, and of course discuss them with your liver doctor and the participating specialist.

It also doesn’t hurt to ask other patients on HBV internet support groups.  You might well find someone with personal experience with the drug, keeping in mind that everyone responds somewhat uniquely to the same drug therapy. I have found these forums extremely helpful when considering a new drug.

The Hepatitis B Foundation is committed to maintaining monthly, updated clinical trial data available to friends living with HBV on our website.  We do much of the up-front work for you by sorting through the hundreds of trials available via clinicalTrials.gov, a registry of clinical trials.  We divide the data into unique treating situations that might benefit various patients, such as clinical trials for patients that live in the U.S. or internationally,  pediatrics, coinfected, candidates for liver transplantation, patients struggling with HBV related hepatocellular carcinoma, and HBV reactivation and lymphoma.  Most trials relate to the treatment of HBV, while some are observational studies, long term studies where patients are monitored over time.  Some relate back to treatment studies – durability of treatment or long term effects, while others study patients with HBV, and identifying factors that may cause the disease to activate or worsen, and are monitored via annual or bi-annual blood work and annual visits.  It varies with the trial.

So if you have HBV, consider your status. If you are a candidate for treatment, consider existing, approved treatments vs. participation in an HBV clinical trial. It’s up to you and your doctor to determine if a clinical trial is a good fit.

 

Hepatitis B Diagnosis & Monitoring

Kids, Sports, and Hepatitis B

It’s August, and believe it or not, fall sports for kids are ramping up.  Are you reluctant to allow your child to participate in athletics due to their hepatitis B (HBV)  infection?  Many parents agonize over the potential risk of exposure of their child’s HBV to those unwittingly playing on the field.  Don’t bench your child due to HBV.   Get your child off the couch and out on the field with friends!

HBV is not casually transmitted. Hepatitis B is spread through direct contact with infected blood and sexual fluids. The concern is with potential accidents on the field or court that result in bleeding.  Even then, the odds of transmission are unlikley, when you consider it takes the blood of an infected person to come into contact with an open wound, mucous membrane, or orifice.  Regardless, it is a real concern that can be alleviated with some basic prevention methods.

Hepatitis B  is vaccine preventable and nearly all states require that children attending school or licensed day care are vaccinated against hepatitis B.  Although there is no way to assure every child is vaccinated, you must consider that your child is likely not the only infected individual in the league.  Many do not even know they are infected since viral hepatitis is often asymptomatic.

If your child is older and involved in HS athletics, you’re likely beyond much of this worry. School coaches are trained to manage blood and body fluid spills with infection control practices. The opportunity for HBV vaccination is available and coaches are well aware of risks due to blood borne pathogens.

Perhaps the big concern is with little ones playing with hepatitis B.  In a well-organized league, coaches are trained and expected to follow basic prevention methods when dealing with blood and body fluids…  Sideline the player until the bleeding has stopped. Cover the wound, and clean up blood appropriately.  The concern for parents is whether or not the neighborhood dad took the training seriously and will abide by the rules. The HBV vaccine is safe and effective, but some adult coaches may not be vaccinated.  It is a worry for parents of kids with HBV.  Should an accident involving your child with hepatitis B occur, you can always reconsider if you want to share this information with the coach, should you feel there was an exposure that warrants post-exposure treatment.

One response to concerns is to get out there and get involved!  You don’t have to be a soccer star to work with a group of five-year-olds.  You can literally work your way up in the volunteer coaching pool all while making sure your child is having fun, and playing the game safely. My husband coached from kindergarten through middle school. One parent I knew was not able to make the leap from mom to coach, but she was very visible on the sidelines. She maintained a thorough first aid kit and was there to assist with injuries on the field – including that of her son with hepatitis B.  Lets face it.  When a little one is injured, they want their parent to wipe their tears and cover their boo-boos.  Be there and be prepared.

The introduction to a sport for little ones is all about fun and interacting with friends. So have fun with it! Figure out how to work yourself onto the field, or the court.  If your league is more loosely organized, then get involved so you can help set the standards and raise general awareness. Be an assistant coach, coach’s helper, score keeper, linesman, or active soccer mom or dad.  It will give you peace of mind, and you and your child will enjoy the time together.

Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention, Living with Hepatitis B

Cleaning Up and Staying Safe at College

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Whether you have hepatitis B or not, you will want to follow some simple clean-up rules now that you are living in a more public environment and away from home. (Take a look at the previous blog – Off to College with HBV.) Regardless of your living arrangements – dorm room, quad, or apartment, you will want to set a couple of ground rules, and be prepared for maintenance, and possible emergency spot cleaning.

Bathrooms are a breeding ground for a plethora of bacteria and viruses. They are the site of all kinds of planned and unplanned, natural and unnatural biological and human functions that produce blood, bodily fluids, and all kinds of other body by-products.  They are shared spaces where very private things occur. They are shared spaces where there’s a whole other microbial world living off of all the human activities that occur in the bathroom. That is why bathrooms should be cleaned properly and regularly.  It’s good practice and keeps everyone healthy.

Standard or universal precautions are  prevention methods that should be integrated into everyone’s life.  The whole goal is to prevent contact with an infectious agent such as HIV, HCV and HBV, assuming all possible blood or bodily fluids may be contaminated. They remind you to provide a barrier between you and any potentially contaminated blood or body fluid, whether it is in an emergency situation with a bleeding person, or the cleanup of blood or bodily fluids. It’s yet another reminder to “wash your hands”, and basically use common sense.  In the case of HBV or other infectious diseases (HCV, HIV), blood in particular may contain high concentrations of virus which could be transmitted to others through mucous membranes, orifices, or microscopic cuts in the skin.  HBV is a tenacious virus and can live outside the body for seven days. Fortunately, HBV is vaccine preventable.

If you live in a dorm, with shared, floor bathrooms, they should be cleaned and maintained by the janitorial staff. However, it’s good to be prepared for an emergency spill in your room, or the bathroom at odd hours. If you live in a quad or apartment with others, you’ll want to be sure to set up a chore chart so that common areas like bathrooms and kitchens are properly cleaned, and that trash is regularly disposed.  If you don’t set the ground rules from the start there are bound to be hard feelings among your roommates.

Weekly bathroom maintenance should include the disinfection of surfaces on toilets, sinks and showers.  The general rule is clean first and then disinfect.  This does take some time since the bathroom cleaner is first sprayed and allowed to sit for at least 30 seconds (times will vary with the disinfectant or depending on your source), and then cleaned with towels, (to be disposed, or laundered separately in hot water with detergent and a little bleach) and then disinfected with the same cleaner and allowed to sit for at least five minutes, and then finally wiped down again with clean towels.  Don’t know how many housekeepers follow this rule of thumb, but use common sense and think about how you use your towels as you clean from surface to surface.  In between cleanings, use disposable bleach wipes to wipe the toilet and sink, and don’t be stingy with them.

Keep the container of bleach wipes in plain sight so visitors have the option to wipe the toilet, sink, or clean up after an accident – hopefully not with the same wipe. (You may find it interesting to note that the sink is often the greatest source of bacteria…a moist environment with plenty of microbial snacks including skin flakes and other organic fodder) Don’t forget to put out a container of liquid soap to encourage hand washing, and if you are a female at college, be sure that all used feminine hygiene products are carefully disposed of in plastic bags.

When it comes to cleaning up a blood or body fluid spill, it is essential to follow the rules.  All blood should be considered contaminated with an infectious agent such as HCV, HIV or HBV.  If you are assisting your friend or roommate in the case of an emergency, be sure you have a barrier between you and your bleeding friend – of course this is after you have called 911 if this is a true emergency..  Disposable gloves are perfect, but in a pinch, put plastic bags on your hands, or use a clean sanitary pad, or bunch of towels (paper or cloth) to staunch the flow of blood.  When you are finished with the emergency, dispose of contaminated articles and thoroughly wash your hands with soap and warm water before progressing to the cleanup.  Hopefully your roommate will be able to clean up his own spill, but it’s possible he’ll need some help.

Bleach is a wonderful disinfectant, and effectively kills HBV, and other pathogens.  Don your disposable gloves, and  prepare a fresh bleach solution for the cleanup that is one part bleach to nine parts cool water.  Use a fresh solution as the potency of the solution quickly diminishes, and do not use hot water.  Remember the proper order – clean, then disinfect.  When cleaning a surface that is known to contain a potential contaminant (blood or bodily fluid), spray it with the bleach solution and let it sit for a few minutes.   While wearing gloves, cleanup the spill with disposable rags or paper towels.  Dispose of the contaminated towels, and gloves.  Don a new pair of gloves and once again spray the area.  Let is sit and disinfect for at least 10 minutes and wipe again with clean towels.  Dispose of contaminated towels and gloves in a seal-able plastic bag.

If you are in a dorm shared-bathroom, it’s possible to walk into a mess you choose not to clean up, but be sure to alert floor mates of the contaminated area with a sign so others are not accidentally exposed to the potential contaminant, and to alert the janitorial staff of the spill.   It’s a courtesy, but it also keeps everyone safe.

There are also EPA registered disinfectants that are premixed and kill infectious diseases, but be sure that HBV is specifically listed as it is a more difficult virus to kill.  The times to soak and disinfect vary with each product, and the times I found for basic disinfection varied in my research, so when you’re making the effort, be sure to take the extra time to ensure you have killed all possible contaminants.  These pre-mixed disinfectants are more convenient, but they are also more expensive, and you need to check the dates to ensure they remain effective and have not expired.

Here are list of supplies to have on hand for your room or apartment that specifically relate to blood and body fluid cleanups:

  • 1 small bottle of bleach
  • 1 squirt bottle (pre-marked with a sharpie to denote bleach and water quantities.. 1 part bleach to 9 parts cool water)
  • Box of disposable gloves
  • plastic bags – trash and sandwich bags
  • disposable towels or paper towels

You’ll need a list of other supplies if you want to keep that bathroom relatively germ free.  Don’t forget the soap and the bleach wipes!

 

Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention, Hepatitis B Treatment, Living with Hepatitis B

Off to College With Hepatitis B

Are you ready to head off to college?  Are you concerned about your HBV status?  Here are a few things to consider…

If you live in the U.S. your roomate(s) will most likely be vaccinated for hepatitis B, so you shouldn’t need to worry about disclosure.  Later on in your relationship you can decide whether or not you want to disclose your HBV status to your roommate, other friends, or SOs.  For now it’s probably best to keep it to yourself.  Once the info is out, you cannot take it back.

If you are sexually active you will want to consider how you will handle these relationships.  HBV is spread through vaginal or anal sex so you want to be sure to practice safe sex for the benefit of both you and your partner.  Please use a condom to ensure there is no transmission of STDs and other infectious diseases.  There is a vaccine for hepatitis B, but not for HCV and HIV.  If you are living with HBV, you are well aware that you do not want an HBV coinfection with either HCV or HIV.  Coinfections are more complicated and more difficult to treat and manage.  Play it safe and use a condom.

It’s great to be on your own at college.  Days and nights learning, studying and preparing for a bright future, branching out on your own… away from mom and dad.  Quite often it’s time for a little experimentation, a little craziness, or just plain fun.

It’s a time to interact with lots of different kinds of people.  Sometimes you have control over these interactions and sometimes you don’t.  You can’t control all of these things, but you can control parts of your own little environment.

Get yourself a bag for your personal toiletries.  Whether you’re using bathroom and shower facilities on the dorm floor, living in a quad, or sharing an apartment with roommates, you’ll want to be sure to keep your personal items in a separate bag and out of sight of floor mates, roommates and visitors.

We all know that HBV and other infectious agents are transmitted via contaminated bodily fluids – especially blood, semen and vaginal fluids.  Store your razor inside your bag, and be sure you do NOT leave it in the shower stall.  Razors are an effective transmission vehicle for infectious disease like HBV or even HCV and HIV.  If you leave your razor in the shower, you cannot assume that someone else has not used it.  Throw it away and start fresh.

This goes for nail accessories like clippers, cuticle cutters or even files.  Keep them in your bag and keep them out of sight from roommates and other visitors.  Few people think twice about picking up a pair of nail clippers or a nail file.

Communal soap can be liquid or bar soap.  Don’t share any body jewelry including pierced earrings.

Don’t forget about your toothbrush.  I can still remember a friend mentioning that he had borrowed my toothbrush, after visiting.  Unfortunately he mentioned it after I had already brushed my teeth.  Disgusting!  Do you really want anyone using your toothbrush??  After the fact, it’s too late to do anything about it.  You need to be proactive to make sure these little mishaps don’t occur.  Put your personal items away and out of sight.

Then there are the visitors…  Most likely you won’t have control of everyone in and out of your room or apartment.  My college roommate and her boyfriend loved that I was organized and prepared for all scenarios.  They were constantly “borrowing” my things.  I wish I had the courage to tell my roommate’s boyfriend that I would prefer he wash my pillowcase after he borrowed my pillow, along with all of the other things he helped himself to without asking.  Keep your personal items separate, and let your roommate know that your boundaries are to be respected. Establish these boundaries up front!

Perhaps you’re worried about what others might think of your toiletries bag, or that you like your personal things respected.  Don’t tell them you’ve got HBV.  Just laugh and tell them you’re a “germaphobe”. By keeping personal items out of view and sequestered in your own bag, everyone is protected.

Be sure to read the follow-on blog: Cleaning up and Staying Safe at College. 

Living with Hepatitis B

A Personal Reflection on China for World Hepatitis Day – Part II

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(If you missed it, see part I) The second trip entailed the training of rural doctors.  During the training course, we used a number of simple visuals to better get some basic ideas across.  We wanted to drive home how common HBV was in China, and the number of Chinese people infected. We asked 10 people to stand up.  They smiled with pride, having been selected, until they realized they were being identified as one of those possibly infected with HBV.  The numbers dwindled as we went through the process of asking some to sit down representing those that had been infected, but resolved the virus, until finally, the last one standing represented someone with chronic HBV. This person was clearly horrified. This visual certainly drove the point home, but perhaps we were the ones educated by this process.

The Chinese people love children. I had a photo album of my children, which many enjoyed during the break.  There was one photo with a picture of both my two children and my colleague’s two children. My colleague and I were traveling with two of the children and had not identified if either were infected.  (As a result, we sat at every meal where most assuredly there was a large serving spoon in every dish…)  There was only one child that could be “safely” identified. When I pointed the child out to them, I could hear them, speaking in English, saying “Yes, I knew it.  Look at her.  She’s sick… doesn’t look well.”  I can’t even imagine what was said in Chinese.  HBV is nearly always asymptomatic in children.  All four children in the photo appeared equally healthy.  At that moment, I was grateful these children were spared the taunts.

During the course of the visit, we made an impromptu stop at a hospital on the outskirts of one of the cities.  We were shocked when we were permitted to enter the compound without pre-approval.  It was not a sanitized visit like all of the other stops we made.  We were traveling with a U.S. doctor, and I think the Chinese doctor we met was interested in speaking with her.  The facility was well below the standards we had encountered elsewhere. The largest building on the compound was the “women’s facility”.  We were not allowed in the building, nor were any pictures permitted of that particular building.

In another city we met with a conventionally trained doctor who had grown up in a very rural province, and was sometimes requested due to her rural background and familiarity.  She told us of a recent rural visit, where hundreds of women had been infected with an STD.  As a result of migration of workers into the cities, these women villagers are more often victims of diseases previously not seen in these areas.  Sadly, many of the women were being infected due to the lack of precautions taken during the annual examination of women.  The major culprit was the reuse of speculums that were not disinfected.

Finally, we met so many interesting, young Chinese, and heard so many wonderful stories like the one about a young university graduate who started the first online community of hbvers (that’s what they like to call themselves.)  It would turn out to be the biggest in the world, and would provide much needed support for many isolated Chinese, living with HBV.  There were also other stories, too, of how Chinese hbvers fought against discrimination by using a stand-in – either a paid “professional”, or other, loyal friends for their compulsory medical blood tests.  Imagine living with the fear of losing everything just because of the results of a simple blood test.

I went to China, naively thinking I would make a difference.  I was overwhelmed with the dire situation of those living with HBV.  The experiences and stories were sobering and haunted me for months after returning.  It was so personal. I certainly cannot  fix this global problem on my own, but I will do everything possible, so that others may understand, just a little, the impact of living with hepatitis B in China.

Living with Hepatitis B

A Personal Reflection on China for World Hepatitis Day – Part I

Sadly, like many Americans, until I came face-to-face with hepatitis B, I had no idea of the global implications.  Over the years, raising HBV awareness has been a quiet mission.  In 2002 and 2003 I was fortunate to travel to China, and help present train-the-trainer programs that were to be used in Chinese orphanages, presented to Chinese foster families, and used as training sessions for rural doctors.  The training programs were successful, and well received, but of course they were only a small contribution in a country where HBV infection is endemic.  In fact one in ten Chinese are chronically infected with hepatitis B.  Nearly one half-million die per year from HBV related liver cancer, or one Chinese person every 60 seconds.  As an American, I was aware of the discrimination faced by those living with HBV in the U. S., but I had no idea how widespread discrimination was throughout China.  For some naïve reason, I thought HBV infection would be better accepted in a country where so many are living with HBV.  I was very wrong.

Training participants listened with earnest as we reviewed infection control techniques and modes of transmission.  All were interested in the details.  Perhaps what was more sobering were the interactions in between and following these training sessions.   I found myself quietly met by a number of tentative women with downcast eyes.  They waited in the bathrooms, and stepped out of tiny alley-ways as we walked back to our hotel. They quickly surveyed the area, their eyes darting back and forth, before they asked their questions about HBV treatment, and outcomes.  The despair was was palpable.

We were invited to visit a local city orphanage.  The rooms were somewhat sterile, but cheerful and the care takers were very good with the children.  However, when we met with the staff, we learned of their concern of HBV infection among the children under their care.  They were concerned about transmission. However, they continued to treat infant illnesses with injections and IV drugs, rather than an alternate, oral medication. An orphanage is often a world unto it’s own, yet children with HBV are often segregated from the other children.   Children diagnosed with HBV outside of the orphanage environment may also be refused entry into school, although this practice may vary with the province, the city, or even the official in charge.  That doesn’t leave a child identified with HBV much of a future.

Perhaps one of the most sobering experiences was meeting with HBV-listserve members at a local tea house.  We were seated upstairs, away from other guests, which is not uncommon when foreigners are present, but it was clear this was more for their privacy.  They scanned the room and were careful not to speak when the server entered the room.  This was the first time they had met in person, and it was clear their hearts were heavy with the burden of living with HBV.  Throughout the evening, no names were used, and all members referred to one another by their screen names.  Most felt very isolated with their illness and were desperate for information.  Many were shunned by family and friends, were humiliated and forced to eat separately, or carry their own bowl and chopsticks. They lived alone with the knowledge of their infection, as widespread discrimination loses jobs and ruins families. There were a number of treatment questions.  Many were interested to know how long they needed to take the antiviral drugs, and whether or not they could stop for a while – if they were feeling better.  We told them that stopping and  re-starting treatment was not good, and they should speak with their doctor.  We didn’t realize that few were under the care of a doctor for their HBV.

Later, while traveling in Shanghai, we visited a lavish pharmacy.  All oral, prescription medications were available in China without being prescribed by a doctor.  Only injectable drugs required a physician’s prescription.  As a result, it was likely my listserve friends were self-medicating without the advice of a liver specialist.  The drugs were likely cost prohibitive, so the need to start and stop antiviral treatment was more a function of expense.  It was apparent that most were not being treated and monitored by a specialist.  The prospect was sad, all the way around.

Please join us as Thursday’s blog concludes “A Personal Reflection on China for World Hepatitis Day….

Living with Hepatitis B

A Brave Hepatitis B Activist in China

I have been active in the HBV community for over twelve years, and during this time and I have been fortunate to make the acquaintance of some wonderful people, many who I consider good friends.  The story below was relayed to me by a friend, though it’s possible you may have seen it in the Chinese news.

This is a story about a very brave, Chinese girl with hepatitis B.  She studied in Japan, got her Masters, and married a PhD from China. Last year, she took all her savings, about 10,000 Yuan, with the blessing of her husband who was finishing his thesis in Japan, and went back to China. For the next twelve months, she traveled to major cities in China, all by herself.

At each stop, she held up a placard with a sign inviting passersby to have dinner with her, a person with hepatitis B, and that she would pay for the dinners – You eat, I pay. Of course, she repeated her story to the media to emphasize that it is safe to eat with a person that has HBV. A few nights ago, she appeared on CCTV, with another young hero, and they demonstrated how shaking hands with a person with HBV will not pass on the virus.  There was instant testing of the cloths wiping the hands of the infected women. Of course, they tested their saliva too, since Chinese people use chopsticks, and pick food from common plates. All this was presented in front of a live audience, and millions of viewers at home. It brought tears to my eyes.

The original graduate from Japan has stopped touring and is now making a documentary. Her husband left Japan on a boat to return to China, the day before the earthquake struck.  He is now home with his wife.

However the baton is taken up by another young Chinese lady, with the support of the other activist, and the tour is on again.

The actions taken by these young, Chinese activists are inspiring, and are true acts of bravery – especially in a country like China, where HBV discrimination is rampant.  Perhaps we are not all comfortable going public with our information, but we can all work behind the scenes, and help raise global, HBV awareness.  Tell us your story, or share it on the World Hepatitis Alliance Wall of Stories.

 

Hepatitis B Diagnosis & Monitoring, Living with Hepatitis B

Raw Shellfish Warning for those with Hepatitis B

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Summer is here, and it’s time for a smorgasbord of your favorite, fresh seafood.  All good, but if you have hepatitis B, you’re going to want to take precautions to ensure you don’t get sick, or even die, from the seafood that you eat.

There are a couple of variations on what is considered shellfish, but basically it includes oysters, clams, mussels, shrimp, crab, and lobster.  Oysters and clams are the only shellfish eaten raw, so they present the greatest danger.  Raw oysters are the main culprit, although all raw or undercooked shellfish from warm coastal waters, especially during the summer months, are a risk.  It’s difficult to ensure the origin of your seafood, despite labeling requirements, and whether or not it was frozen, or partially unfrozen at some time.  As a result, it’s best to treat all seafood equally.  And of course it’s not the shellfish itself, but rather a microbe called Vibrio vulnificus.  In fact this hearty microbe may exist in warm, salt-water directly, and care should be taken to avoid exposure of open wounds to potentially contaminated water.

V. vulnificus is very virulent with a 50% mortality rate.  The microbe may enter the blood stream via an open wound, or the GI tract where it may cause sepsis.  This is especially perilous for people that are immunocompromised, or have liver damage due to chronic infections such as viral hepatitis – specifically hepatitis B.  Symptoms may include fever, chills, vomiting, diarrhea, and abdominal pain.  It is very serious, and may lead to septic shock and death.  Septic infections are carry a high mortality rate of 50% in individuals without liver disease.  Those that are immunocompromised or suffer from liver disease are 80 to 200 times more likely to develop septicemia from V. vulnificus than those without liver disease.  Those are pretty serious odds.

Please keep in mind that this is not to be confused with basic food poisoning from “bad seafood”.  There are no visible signs of the bacterium.  Contaminated shellfish smell and taste fine.  If you believe you may have been infected, you need to seek immediate medical attention.

If you must eat shellfish, please follow precautions.  Be sure shellfish are thoroughly cooked.  Cook all oysters, clams and mussels until the shells open and continue boiling for five additional minutes.  If steaming, cook for an additional nine minutes.  Boil shucked oysters for at least three minutes, or fry them in oil for at least ten minutes at 375 degrees F.  Wear protective gloves when handling and cleaning raw shellfish, and avoid exposure to open wounds.  (This warning actually includes exposure of open wounds to infected waters, so be careful when vacationing.)  Take care to keep raw seafood and all other foods separate.  Eat when cooked, and immediately store leftovers in the fridge.

I’ve never been a fan of raw shellfish, and with my HBV awareness, I instilled a sense of fear in my children regarding raw shellfish, or any raw seafood.  If it’s got a shell – especially oysters, clams and mussels, they don’t touch it, and they gag at the sight of raw seafood.  Okay, so maybe I carried that a bit too far, but at least I can check that one off my danger list. V. Vulnificus is dangerous! If you have HBV, it would be best to avoid shellfish.

Baruch S. Blumberg Institute