Hep B Blog

Category Archives: Living with Hepatitis B

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.

 

Got Hepatitis B? Keeping loved ones safe through HBV vaccination

If you just found out you have hepatitis B, or if you are adopting a child with HBV, you will want to ensure that all household and close contacts are properly vaccinated to prevent the transmission of hepatitis B.

Hepatitis B is not transmitted casually, so no need to worry about shaking hands, kissing, hugging, changing diapers and daily living.  HBV is transmitted in blood and body fluids, such as sweat, semen and saliva. However, the amount of virus in sweat and saliva are significantly lower, so the likelihood of transmission is far less.  It requires direct contact of infected blood or body fluid to an open sore (from microscopic to gaping), mucous membrane or orifice.  It is also transmitted sexually and via personal care items such as razors, toothbrushes, tweezers and clippers that may contain microscopic blood droplets.

Household contacts and loved ones are at greater risk of contracting HBV due to the daily logistics of life.  And of course accidents happen.  HBV may transmitted by borrowed razors, or accidentally touching infected blood. Getting vaccinated is the best way to keep everyone HBV free for life.

The hepatitis B vaccine is a safe, and effective, three-shot-series that protects you from HBV.  Typically when you get your HBV vaccine, you do not return to ensure that your vaccine was successful in generating an adequate immune response.  However, if you are living with a loved one with HBV, if would be good to ensure that you are protected.  All it takes is one follow-up blood test.  Ask your doctor to run a quantitative hepatitis B surface antibody test (HBsAb).  Often HBV antigen/antibody tests are run qualitatively, which means you get a positive/negative or reactive/non-reactive response.  When you get a quantitative HBsAb test, it will tell you how much surface antibody you have.  An adequate titre is a value greater than 10 mIU/mL.  The key is to ensure that you have been tested at the right time.  Keep in mind that you could also have a standard, qualitative surface antigen test run because it will not be reactive unless it is greater than 10.  However, I have found that most people like to see the number if it’s an option.

This test needs to be run four to six weeks following your last shot of the three shot series.  If your titre is greater than ten, then you are protected for life.  If your titre is less than ten, negative or non-reactive, then you will need to repeat the series.  It is recommended that you try a vaccine made by a different pharmaceutical company for the second round.  For example, if your first vaccine series was completed using the Engergix B vaccine, then you would want the second series to be done with the Recombivax HB vaccine the second time. Following this second series, you will again need to be tested 4-6 weeks following the last shot of the series.

Approximately 5-15% of people are considered non-responders if they complete two series of the vaccine and do NOT produce an adequate immune response.  Sometimes age and weight can contribute to difficulty in building adequate immunity.  And of course each person’s immune system is unique, so there will always be some that do not generate adequate immunity for no known reason, while others with a suppressed immune system may also have difficulty.  The final thing to consider is whether the person considered a non-responder actually has HBV.  If you fall into this category, please be sure ask that your doctor test you for surface antigen (HBsAg), along with an HBV viral DNA test.

Vaccination is always preferable because it’s just easier.  However, with simple changes a “non-responder” parent or loved one can dig right into life’s daily goings-on!  Follow simple precautions to keep you and your family safe.  There aren’t vaccines available for everything, so it never hurts to play it safe.

For those that had their HBV vaccines years ago, but were unable to test within the four to six week window, don’t be alarmed if your titres are below ten, or if you do not have a positive or reactive HBsAb value.  It is recommended that you repeat the series (you might see a little variation in viewpoints between booster vs. 3-shot-series) and then be tested within the four to six week window to ensure you have adequate titres.

At this time, HBV booster shots are not recommended, regardless of when you were vaccinated.  You may find years later that your surface antibody is no longer reactive, or is below ten, but you know that it was adequate after the 4-6 week period following your vaccination. Do not be alarmed.  Our amazing immune systems have something called immune memory, which continues long after detectable antibody in the blood.  Simply put, you may not have a lot of HBV antibodies circulating in your system, but if you happened to be exposed to HBV after your titres had waned, your immune system would go into over-drive in order to protect you from an exposure.  As long as you once built up an adequate response, you are free from HBV for life!

Got HBV? Adding Vitamin D to Your Diet

Do you have hepatitis B, and are you considering adding vitamin D to your diet?  Adding vitamin D seems to be a win-win for those with liver disease since it is a potent immune modulator, appears to aid in the prevention of cancer, and other potentially related disorders such as NAFLD, along with Type I and II Diabetes, glucose intolerance and metabolic syndrome.  Before you make any big additions, be sure to talk to your doctor or liver specialist to ensure it’s safe for you with your current health status.

Vitamin D is a fat soluble vitamin (needs a little fat to digest), versus a water soluble vitamin, that is ultimately stored in the liver.  There are pros and cons to this.  Fat soluble vitamins are not necessarily needed on a daily basis as they are stored in fatty tissues and in the liver making it available for longer periods of time.  Vitamin D is specifically stored in the liver. Unlike water soluble vitamins, excesses are not excreted through urine on a daily basis. That makes the balance a little trickier because you don’t want vitamin D accumulating in the liver and causing toxicity. Symptoms of vitamin D deficiency include osteomalacia, or softening of the bones, or perhaps less obvious bone pain and muscle weakness. Symptoms of vitamin D toxicity may include decreased appetite, nausea,vomiting, excess calcium blood levels or an accumulation of calcium in soft tissues. Too much of a good thing is NOT good for you!

Current guidelines for vitamin D intake are 600 IU or 15 mcg per day. (See table for age specific info). Natural sources of vitamin D in foods (vitamin D2, or ergocalciferol) are hard to come by, but they are out there.  Mega sources include fatty fish like salmon, mackerel, and tuna.  Cod liver oil is an excellent source, which is probably why we see old movies with mom spooning cod liver oil into the mouths of young children! In the U.S. many dairy products, and others such as cereals, or orange juice are fortified with vitamin D and other vitamins. (There’s a great reason for the fortification of dairy with vitamin D – absorption is enhanced in the presence of calcium.) It is also found in smaller amounts in egg yolks. Naturally all of this needs to be balanced with the concerns of farm raised fish and possible exposure to PCBs, or mercury levels found in tuna, pollution of our oceans, raising your cholesterol levels due to focusing on the yolks, possible toxic levels of vitamin A with cod liver oil  (in Western countries where foods are fortified with vitamin A), or simply the bad, fishy taste associated with cod-liver oil. It’s a tough balance, but it’s important to work through some of the risks versus benefits in your own mind.

Sunshine is another readily available source of vitamin D (vitamin D3, cholecalciferol), but you need to be sure to balance it with the risk of over-exposure to the sun’s rays. And of course in the north, during the winter months, it may be difficult to get adequate sunshine to boost your vitamin D levels. You can get adequate sun exposure with 10-15 minutes in the sun, 3-5 times per week, with the exposure of face and arms. Naturally this will vary based on the sun’s intensity, how much skin is exposed and each individual’s skin tone, since the amount of necessary sun increases with the amount of melanin (pigment) in the skin.  Just to confuse matters, a recent study shows a possible link of higher levels of vitamin D to non-melanoma skin cancer, even though higher levels are thought to reduce the risk of basal cell cancer. Clearly more studies need to be done, but until that time, just keep reminding yourself that balance is important.

Sometimes it’s tough to get adequate vitamin D levels from natural sources such as food and sunshine, so there is the option for vitamin D supplements. This is where my anxiety levels intensify. Bad enough I have to worry about my food sources – PCBs from farm raised fish and such things, but now I have to choose a supplement – perhaps cod liver oil in a liquid or capsule that I can take daily.  Will it be in a form that is able to be absorbed?  (There’s a debate on the true benefit of cod liver oil once it is processed.  The same argument might apply to many available supplements.) How will I know this?  Will I break the bank trying to purchase these supplements?  I started to do the research on vitamin D supplementation, but like so many supplements, it’s very complex.  I always feel like I’m being sold. Using supplements is a personal thing. My personal preference would be to get my vitamin D through the foods I eat, and a short duration of sunshine.  However, I currently have adequate levels of vitamin D, so whatever I’m doing seems to be adequate.  That’s the key: tailoring your decisions based on you, your family history, or ethnicity and things you might be prone to such as a vitamin D deficiency, or other issues.

Please don’t forget to talk to your PCP and your liver specialist before drastically changing your vitamin D intake.  This is especially important if you are currently undergoing treatment for HBV.  Your doctor may wish to get a general baseline of your vitamin D levels, and continue to monitor them if there are problems.  Your doctor may be uncomfortable recommending a specific supplement since there is little or no regulation. Heed her advice before moving forward, and if you choose the supplementation route, be sure to do your homework to get the best quality product that is readily absorbable, without causing toxicity.

Be sure to take a look at last week’s blog on Vitamin D here.

Hepatitis B and Vitamin D

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.

The Hepatitis B Foundation’s Hepatitis B Clinical Trials Page

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!

Participating in HBV Clinical Trials

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.

 

Cleaning Up and Staying Safe at College

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!

 

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.