Hep B Blog

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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!

Infection Prevention is Everyone’s Business…That means YOU!

In the U.S. we have wonderful infection prevention procedures, clinical practices and standards of care in place.  There’s a documented protocol for everything from giving a simple injection, to surgical procedures, to the disposal of biomedical waste.  HCW and other appropriate personnel are trained and practices are implemented. They are constantly evolving. Despite all of these safeguards, the CDC is worried.  A couple of weeks ago it was a nurse doing diabetes training using the same diabetes testing device on multiple people, (one person one device) with not even a disinfecting process in between patients.  Unfortunately, this is not a unique event.  I scrolled through the last seven months of HBF Top Stories and noted the following events in the news:

You don’t have to root around too hard to find these incidences. Despite best practices and protocols, training procedures and safeguards, the people that perform these duties are not without error. Intentional negligence is rare, but unknowing negligence would not be surprising. Budgets are tight, staffing is reduced, and work loads are increased.  Personnel are tired and stressed, and they make occasional errors. It may not be right, but mistakes do happen.

This is where the above sign comes into play.  Infection protection is everyone’s business.  That includes YOU!  Speak up.  Let your voice be heard.  You see the signs in your doctor’s office “Ask me if I’ve washed my hands”.  Why not start there, and ask? Had I read the article, or thought about my endoscopy/colonoscopy, I would have asked about the equipment used for my procedure.  Shame on ME.

I’m not going to get a bloodborne pathogen like hepatitis B from shaking my doctor’s hand, as HBV is not transmitted casually, but procedures where trace amounts of blood may not be properly disinfected or devices disposed is a different story.  HBV is transmitted by direct contact from an infected person’s blood or body fluid to an open cut, mucous membrane or portal of entry of another person. A health care setting with blood, sharps, tubes and medical devices is an effective transmission route if there are infected body fluids.  Fortunately practices firmly put into place prevent nearly all such possible exposures. Regardless, these uncommon errors, could affect parents in nursing home environments, veterans in VA hospitals, patients getting colonoscopies, and all kinds of patients in various health care clinics and settings. Infection control practices are written, taught and implemented, but every once in a while, you’re going to get someone that neglects to follow the rules or makes a simple mistake.  This should not cause a panic among patients, but it is a reminder that mistakes happen, and sometimes it’s necessary for us to speak up and ask questions. Remember, infection prevention is everyone’s business.

Note: Please keep in mind that HBV is 100 times more infectious than HIV.  It is also more infectious than HCV.  There are no vaccines for HIV and HCV, but there is a safe, effective vaccine for HBV. Get vaccinated and be HBV free for life.

Donate Your Car to Support the Hepatitis B Foundation

Are you thinking of selling or trading in a vehicle?  Donate it to the Hepatitis B Foundation instead. Turn your car, running or not, into a tax-deductible contribution and help find a cure and improve the quality of life for those affected by hepatitis B worldwide. 

The Hepatitis B Foundation works with a full-service partner that will make all the arrangements to conveniently and quickly pick-up your vehicle donation at no cost to you. They handle the pick-up, the title transfer requirements, and sale of the vehicle.

If you complete your vehicle donation before October 31, you may receive a $25 gas gift card by filling out an online survey on the Donation Line website, or call 877-227-7487, extension 2815.  Need more information? View our most frequently asked questions below or contact Fern Sanford at fern.sanford@hepb.org or 215-489-4916.

 

FAQs

What can I donate?
We accept most cars, vans, trucks, trailers, motorcycles, boats, jet skis, snowmobiles, RVs and even airplanes!

Is my donation tax deductible?
The Hepatitis B Foundation is recognized by the IRS as a not-for-profit 501(c)(3) charitable organization and your donation is tax-deductible to the full extent of the law.  To benefit from this tax-deduction, you must itemize your taxes. 

What do I need to provide?
Besides the car, we would like the title to the vehicle. If you do not have it, call us anyway. It is possible that other arrangements may be made.

My car hasn’t run in years. Can I still donate it?
Yes, most vehicles are accepted, running or not (exceptions include older vehicles whose value would not offset the cost of towing).

Can you pick up vehicles in all 50 states?
It is possible to pick up most vehicles in the continental U.S. and Hawaii.

How will the car be picked up?
Arrangements will be made to have your vehicle towed away at a scheduled time.

How long will it take to pick up my car?
Someone will contact you to schedule an appointment within three or four business days at the most.

To donate your car, click here, and follow the instructions

Thank you!

Hepatitis B Carriers Need Not Apply: Discrimination in China

Please take look at this video on HBV discrimination in China.  This isn’t a new story for China, rather an ongoing problem. Despite the high numbers of HBV infected persons living in China, discrimination is rampant.  One in ten Chinese carry the hepatitis B virus. The range of HBV discrimination in China is vast.  Life changing opportunities are lost due to rejection: rejection from school, lost employment opportunities, and even lost love, all due to HBV carrier status.  Even simple, every-day routines like meals with friends and family are impacted. Many of those infected are expected to eat separately, or carry their own bowl and chopsticks.  This is due to widespread ignorance on how HBV is transmitted.

An HBF friend told me Lei Chuang, the student in the video who was rejected from a top post-graduate University program due to his HBV status, is a very popular.  Evidently he is a very visible and admired anti-HBV discrimination activist in China.  Lei Chuang suspended his post-graduate studies in order to campaign against HBV discrimination. One of his on-going projects is an invitation to dine with the Chinese Premier. Every day he sends one letter to the Premier – 151 letters and counting. That takes a lot of courage.

Lu Jun is the director of the Beijing Yirenping Center.  He has been actively fighting discrimination in China, along with providing education, outreach and patient counseling.  His organization works tirelessly to defend the rights of those living with HBV by providing legal support for anti-discrimination lawsuits. He was also pivotal in creating the Chinese HBV internet forum, www.hbvhbv.com, creating a critical link between nearly half a million Chinese subscribers. (Keep in my that social media outlets such as facebook, twitter and Youtube are blocked in China.) Lu Jun is also a friend of the Hepatitis B Foundation, and joined us for our patient conference in June of 2008.

Having witnessed HBV discrimination in China, first-hand, I can tell you that I admire these men, and all others willing to take a stand and actively fight discrimination in their country. Not everyone is able to find their voice in this fight, so the sacrifice of these individuals is to be commended. However, whether outwardly speaking out or quietly behind the scenes, it is imparative that we all do our part to help raise HBV awareness.

Hepatitis B, Hurricane Irene and Other Natural Disasters

Hurricane Irene is currently slamming the eastern seaboard.  I wrote this blog in anticipation of losing power.  It was a tough week. First, the east coast “earthquake of the century”, and now Hurricane Irene and related flooding.

Last spring, during an incredible deluge of flooding, a tweep (an HBF friend on twitter) was concerned about the increased risk of HBV infection due to flooding.  She asked that I warn flood victims about this potential hepatitis risk.

The risk of hepatitis B is unlikely even with the threat of hurricanes and heavy flooding.  Once again the confusion between hepatitis A and hepatitis B seems to be the issue.  It’s important to know the ABCs of viral hepatitis. Hepatitis A is spread as a result of contaminated food and water, which could readily occur during severe flooding or a natural disaster when clean sources of water may be  hard to come by.  Overcrowding, contaminated water, and compromised sanitation all increase the risk of hepatitis A transmission. This is unlikely with HBV since it is transmitted through blood or body fluid contact of an infected person to an open wound, mucous membrane or orifice of another person.  Perhaps over a long period of time with a catastrophe of historic proportions, the odds of transmission would be increased, but in most cases it is extremely unlikely.  Some of this would also be dependent on the conditions prior to the disaster, and the projected length of time in overcrowded conditions, without adequate sanitation and clean water sources.  The worse the conditions, perhaps a country already struggling, or lacking the infrastructure to provide clean water, or adequate sanitation,  the higher the likelihood. The emergency response time and actions might also contribute. Once again this would vary with the country or area, and the infrastructure in place prior to the disaster.

Getting vaccinated against hepatitis A and B is kind of like a mini insurance policy, or pulling together an emergency supply kit for your family. You never know when you’re going to need it, and it’s better to be safe than sorry.

Flashlights and replacement batteries are impossible to find hours before the storm. In the midst of a disaster, or in those precious hours before a disaster occurs, it is unlikely potential hurricane or flood victims are going to flock to their Primary Care Physician to ensure they are vaccinated against Hepatitis A and B.  However, it is yet another reminder that we are all vulnerable.  Should the opportunity exist to get the vaccine against HBV and HAV, whether separately or in combination, it is certainly worth pursuing during a time of calm rather than waiting for an emergency.  The vaccines are safe and effective.  Get vaccinated and be safe.

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.

 

Distinguished Doctor and Contributor to the Viral Hepatitis Community Dies

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

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

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

Emmet B. Keeffe, MD

April 12, 1942 – August 8, 2011