Hep B Blog

Tag Archives: Pediatrics

Why Give the Hepatitis B Vaccine to Infants?

The CDC recommends a birth dose of the hepatitis B vaccine for all babies. Pediatrician, Dr. Allison Shuman explains why in this informative video.

If you live in a part of the world where chronic HBV is at a medium (2-7% of population) or high prevalence rate (greater than 8% of population), your child is especially susceptible and at-risk for hepatitis B, with HBV transmission often occurring vertically from mother to child at birth, and horizontally from an HBV infected adult or another child’s infected body fluids to an unvaccinated baby or child. Please be sure that pregnant women are screened for hepatitis B. If mom tests positive for HBV, be sure baby receives a birth dose of the HBV vaccine and a shot of HBIG within 12 hours of birth. If mom tests negative for HBV, be sure that baby receives a birth dose of the HBV vaccine before leaving the hospital. Both babies of HBV infected and uninfected mom’s should receives shots 2 and 3 of the series according to schedule. Babies of infected mom’s should be tested at 18 months to be sure baby is hepatitis B free.

Please make arrangements with your doctor and the hospital to receive the HBV vaccine for your baby, prior to delivery, so you are sure the vaccine and/or HBIG are available at the hospital so prophylaxis can be given within 12 hours of birth. Please feel free to print and distribute  Chronic Hepatitis B in Pregnancy: Screening, Evaluation and Management (Part I and Part II) to your doctor.

 

An Event-Filled Hepatitis Awareness Month for the Hepatitis B Foundation and Hep B United Philadelphia

Hepatitis Awareness Month has come to a close, and it has been one exciting, busy month for those of us at HBF and Hep B United Philadelphia. In the course of 6 weeks, we have had many of our major events of the year – nearly all featured during Hepatitis Awareness Month or on Hepatitis Testing Day.  Have a look at what we’ve been up to this past month…

HBF preceded the month with its annual, signature fund-raising event. The Crystal Ball was held April 27th and was a very successful, enchanted evening for all in attendance. HBF exceeded goals for the year, and we were pleased to honor Dr. Howard Koh, Assistant Secretary of Health and Human Services (HHS), who was presented with the Baruch S. Blumberg Prize for his leadership in creating the HHS Action Plan for Viral Hepatitis.

The Hepatitis B Foundation was selected as this month’s featured partner by CDC NPIN. What a great honor, and a wonderful opportunity for HBF to showcase some of our programs, services and materials.

On May 15th, AAPCHO and HBF, with the support of the U.S. Department of Health and Human Services’ Office of Minority Health, launched the Hep B United national campaign.  This unique partnering and collaborative effort will bring attention and action to end hepatitis B – especially among high-risk Asian Americans and Pacific Islanders (AAPIs) in the U.S. You’re going to see a lot of activity out of Hep B United...

HBF’s Director of Public Policy & Affairs set off to Washington D.C. to attend the Congressional Briefing on Chronic Viral Hepatitis and Liver Cancer hosted by our champions in Congress.  Keeping Hepatitis in the hearts and minds of our elected Representatives is paramount in supporting viral hepatitis efforts in our country.

Hep B United Philadelphia wrapped up its awesome “B A Hero” PSA video contest and finalists and winners were announced. Check out these great PSAs!

Hepatitis Testing Day and the days leading up to the event were extremely busy for the Hepatitis B Foundation, Hep B United Philadelphia, and Partners. We kicked off testing day with our awareness-raising Flash Mob Event in Love Park in Philadelphia. This fantastic event included special guests Mayor Nutter, and Councilman David Oh, and plenty of other notable Hep B Heroes in attendance.  It was an honor to receive a City Proclamation by Councilman Oh, supporting efforts to eradicate hepatitis B in the city of Philadelphia. And of course the students put their spin on the event with a “B A Hero” Rap. You have to listen to this...

Saturday, Hepatitis Testing Day, Hep B United Heroes donned their hero capes for the Hepatitis Testing Day Event held at the Asian Pacific Heritage Festival in Philadelphia. It was a successful event with 112 screened. Those screened and in need of vaccination will be provided with the HBV vaccination series, free of charge, from the Philadelphia Department of Health.

That same day, Hepatitis B Foundation heroes hosted HBF’s B Informed Conference. This year’s conference was specifically directed to parents of children with hepatitis B. This was an incredible full-day conference. Expert specialists in the field addressed both the medical issues and personal challenges of parenting a child with hepatitis B.  It was a wonderful opportunities for parents to meet and discuss, face-to-face, with families facing like challenges. Lasting bonds were created that day. You’ll want to check back at a later time to read a reflection on the day, and access information presented by our expert speakers.

And finally we end this month’s awareness efforts this weekend by participating in the Philadelphia Independence Dragon Boat Regatta. Team Philadelphia Hep B Heroes will (hopefully) row their boat to victory, but even if they don’t win, they are winners at heart. The team is composed not of an expert crew, but rather Hep B United Philly community partners, student partners and staff. If you’re in Philly, stop by and cheer the team to victory. Plenty of team members will be at the event to raise HBV awareness and discuss hepatitis B testing, prevention and treatment.

There were a lot of Hep B Heroes out there this month.  Feel free to share the events of your organization this month!

May is Hepatitis Awareness Month

May is Hepatitis Awareness Month! What are you or your organization doing to help educate and raise HBV awareness in your community? Will you be holding viral hepatitis screening events, or other events?

The CDC has launched the “Know More Hepatitis Campaign”, which is an educational initiative striving to educate the public about viral hepatitis and encourage screening. They have designated May 19th as the first Hepatitis Testing Day. Organizations around the country will be providing viral hepatitis screening. Many will be focusing on at-risk populations. This is a great opportunity to get tested to be sure of your HBV or HCV status. Talk to the members of the organizations running the screening to learn more about these diseases, and what you can do to get involved.  Don’t forget to register your viral hepatitis screening event with the CDC, or check out screening events in your area.

The Hepatitis B Foundation and Hep B United Philadelphia have a couple of big activities planned for Hepatitis Awareness Month. On Friday, May 18th, we will be having our “B A Hero” Photo Flash mob event in Love Park in downtown Philadelphia. Everyone is excited about the event.  Some of the students have created a Hep B Rap video to get everyone psyched for the event! We also have some fabulous guests slated to make an appearance. If you’re downtown that day be sure to join us! If you’re nowhere near Philly, consider organizing your own Flash Mob! Its lots of fun and a great opportunity to raise HBV awareness with a splash!

Hep B United Philadelphia will also be offering free HBV screening at the Asian Festival on Saturday, May 19th from 12pm-3pm at the Pennsylvania Governor’s Asian Pacific Heritage Festival, at Franklin Square Park in Philly.  Folks that are screened will get a free Hepatitis B tote bag and will be entered into a raffle to win a free Kindle! Counseling will be available in Chinese, English and Korean. Educational literature will be available in Chinese Vietnamese, Korean, Lao, Khmer, and Indonesian. Look for Hep B United Philly’s tent in the health fair section, along with blood pressure, glucose and vision screening. It’s going to be a great event!

The Hepatitis B Foundation will be hosting the B Informed Parent Conference in downtown Philadelphia on Saturday, May 19th. This will be an incredible opportunity for parents of kids with hepatitis B to meet with leading pediatric experts in the field that address both medical issues and the personal challenges of parenting a child with hepatitis B. It is also a wonderful opportunity for parents to meet face-to-face with other families facing similar challenges.  Be sure to check out the detailed program agenda, and if you are a family with a child living with HBV, or know of a family living with HBV, please encourage them to attend this unique event. Pre-registration is required, though there is no charge for the event. And if that’s not enough, here are 10 reasons you need to get yourself to Philly for this event…

So let us know what you are up to for Hepatitis Awareness Month!  If you’re not already part of an organization, lend a hand and volunteer at a screening in your community. If you speak another language, volunteer your translation services, or hand out pamphlets. Make a commitment to start your own organization, or join an organization. Don’t feel like getting out there? Become an at-home HBV advocate and use social media channels such as twitter or Facebook and support viral hepatitis efforts right from home, or your phone. The opportunities are endless!

Hep B Parents: 10 Reasons You Should Get Yourself to Philly

Attention parents of children living with Hepatitis B. Please join the Hepatitis B Foundation for it’s “2012 B Informed Parent Conference“, Saturday May 19th in Philadelphia. It’s going to be an incredible program filled with expert, pediatric guest speakers. It’s also a wonderful opportunity for parents to meet face-to-face to talk about raising kids with HBV.  Think about it, clear your schedule, register, and join us for the day. And if that isn’t enough, here are 10 Reasons You Should Get Yourself to Philly, expressed by Eileen, a good friend of HBF…

1. The “B Informed” Conference for parents of children with Hepatitis B happens just once a year. You do not want to miss this.

2. You will get answers. No matter where your child is on the spectrum, I know you’ve got questions. You’re going to get those questions answered. This isn’t a doctor’s appointment, there isn’t a waiting room full of patients, the doctor’s hand isn’t already on the doorknob. Ask all the questions you want to ask and ask until the lightbulb turns on and you get it. You’ll go home a more confident, better informed advocate for your child.

Read more…

Update on the Adoption of a Waiting Child with Hepatitis B

We are very pleased to share a very special update on the status of William, a waiting child  living with chronic hepatitis B, who captured the hearts of the Hepatitis B Foundation staff. This update comes from Nathalie, Adoption Advocacy Director at An Orphan’s Wish…

“I am thrilled to report that William is in the process of being adopted by his forever family, where he will join his new, wonderful Mom and Dad and his two-new sisters. William’s youngest sister is also adopted from China. When William’s mother contacted An Orphan’s Wish to inquire about him, she had some questions about the implications of daily living with an HBV positive child, and how it affects the child’s life and the life of other family members. The information the Hepatitis B Foundation provided was extremely helpful in answering the family’s questions, and in providing them with enough knowledge to ask informed questions of health care providers. Information provided by the Hepatitis B Foundation allowed this prospective family to have peace of mind about William’s hepatitis B diagnosis, realizing that it is a manageable chronic condition. This enabled them to focus on the specifics of William rather than his HBV. William’s family very quickly responded with more questions for me about his personality, his likes and his dislikes, his dreams and his hopes, rather than focusing on his HBV. They were adopting a son they were thrilled to parent, and thought little of his HBV diagnosis.

As an adoption advocate, the information provided by the Hepatitis B Foundation has been invaluable in educating me about hepatitis B, and HBV positive children. I feel that I have a much better understanding of this chronic condition, and I am in a much better position to answer questions from families considering the adoption of an HBV positive child. I will continue to refer families inquiring about hepatitis B positive children to the Hepatitis B Foundation. They are a wonderful resource! “

Nathalie

The Hepatitis B Foundation wishes only the best for William, his new family, adoption advocates like Nathalie, and all of the children out there who are waiting, living with HBV.

Adopting a Special-Needs Child with Hepatitis B

William - Waiting child with HBV. Contact advocacy@anorphanswish.org for more information.

If you are considering the adoption of a special needs child, I would encourage you to consider adopting a child with Hepatitis B. Children with HBV are available for adoption around the globe. Remember that one third of the world’s population has been infected with HBV.  The transmission of HBV from mother to child during delivery process is very common in many parts of the world. HBV can be prevented in 95% of cases for those that are vaccinated and receive HBIG within 12 hours of birth, with the other two shots of the series to follow, but unfortunately these options are not available to many infants around the globe.  Because HBV is a silent infection, many moms are not even aware they have HBV, and few are screened and identified during pregnancy.

Adopting a child with HBV is very manageable. However, it is good to get educated before you move forward.  Kids with HBV may require treatment when they return home, although most do not. This will not be determined until your child arrives home and has a thorough work-up with a liver specialist.  Please don’t ask for additional testing of your child, as the additional needle sticks raise their risks for infectious disease.

Most children do not have symptoms with their HBV.  They appear perfectly healthy, and they are healthy with the exception of having the HBV virus circulating in them.  They sleep, eat and cry, just like any other baby, and they run, play, captivate and steal the hearts of their parents just like any other child.

Quite often treatment is not necessary for a child with HBV. They have high viral loads, which do make them infectious, but the good news is that the HBV vaccine is a requirement in nearly all states, and licensed day-care facilities. These elevated numbers sometimes worry parents, but the kids are just fine and it is merely a stage of the virus, which tends to occur children infected at birth or early on.  Kids rarely have symptoms and their liver enzymes and blood work are typically within range.   Some children seroconvert, or move into a quiescent, less infectious state on their own with no treatment, while others continue on in this steady state without any intervention other than bi-annual or annual lab work and a visit to a pediatric liver specialist.

However, some children do require treatment when they are young. This is not as common, and is determined by blood work that shows that the immune system is trying to attack the virus in the liver cells. This may sound frightening, but once again, the kids are rarely symptomatic.  Doctors may choose to treat a child in order to see if they can get the child to seroconvert, or move to a more benign stage of the virus’ lifecycle.  For young children, this may involve an immune modulator such as interferon or peginterferon , or in older children, or different circumstance, an oral antiviral.  As a parent, I have been through both, so I can tell you that the protocol is manageable.  There are pros and cons to each treatment protocol which you will want to discuss in detail with your pediatric liver specialist should treatment be recommended.

Believe it or not, one of the tougher decisions is figuring out how you want to handle your child’s personal information.  Often there is a stigma associated with HBV which is primarily borne of ignorance and lack of HBV awareness.   I admit that I had very little understanding of the virus when we came home with our daughter!   The tough part is deciding how you want to handle this information.  It’s a family decision, and until you decide how you want to treat it as a family, you are better keeping this information private.  I would highly recommend speaking with other parents that have experience, both good and bad, with the disclosure of their child’s HBV status.  There is a wonderful, on-line support group you might like to join to discuss the adoption of a child with HBV.

Living day to day with a child with HBV is simple. The biggest transition is learning to deal with preventive measures or general standard precautions, which we should all be following anyway!  All this really entails is making sure that all blood and body fluid spills and contacts are prevented by using a barrier between the bleeding person and you.  Blood spills are cleaned with a fresh, diluted bleach solution.  Should an exposure occur, prophylaxis should be given.  Here’s the thing… we should be doing this with EVERYONE and not just a known entity! It keeps everyone in your family infection free from all sorts of things!

How do you prepare to bring a child with HBV into your home?  It’s simple.  If everyone in your home has not been vaccinated against HBV and had titres checked, then they should do so.  The HBV vaccine is a safe and effective three shot series.  Four to six weeks following the last shot of the three shot series, you can ask that your doctor run quantitative anti-HBs to be sure that your titres are above 10.  If you have built adequate immunity to the virus through vaccination then you and your loved ones will be HBV free for life.  With a safe and effective vaccine, like the HBV vaccine, this is the way it should be!

So when you are considering adopting a special needs child, please consider a child with HBV. Even if you do not choose HBV as a special need, be sure to have your adopted child screened for hepatitis B. HBV is endemic in so many portions of the world. This is how we discovered our daughter’s infection. Had she not been screened, we would have likely never known her HBV status, and although this might not affect you on a daily basis, it is something that needs to be monitored by a pediatric liver specialist. In our case, our daughter needed treatment, but because there were no symptoms, I am grateful we had her screened upon her arrival home.

No matter where your children are grown – within your womb or another, having children truly is a leap of faith.  Keep an open mind. Adoption is a wonderful way to grow your family and choosing to adopt a special needs child with HBV is a great addition to your family.

Living with HBV and Dealing with “Itchy” Skin

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

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

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

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

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

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

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

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

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

Thoughts on Disclosure for Children with Hepatitis B

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

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

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

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

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

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

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

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.

 

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 his 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.  Although it is contained in blood and body fluids, it is not contained in sweat and tears. 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.

HBV 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 HBV.  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.  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 HBV 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 HBV.  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.