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Hepatitis B Diagnosis & Monitoring, Living with Hepatitis B

Ringing in a Happy, Healthy 2012 For Those Living with HBV

Out with the old bad habits and in with the new, healthy habits. The New Year is upon us and for those of us living with HBV; it’s time to make a commitment to habits that support a healthy liver.  Let’s start with New Year’s Eve – A sip of champagne to ring in the New Year? Yes!  Half a magnum of champagne to ring in the New Year… dangerous!

Let’s face it. Drinking alcohol and HBV do NOT mix.  Years of HBV results in liver disease progression. Drinking alcohol to excess also causes liver disease progression. The rate and degree of liver disease progression is not necessarily predictable and may vary with the individual. However, mix hepatitis B and alcohol and you have a deadly combination leading to more advanced liver disease progression.  Make the commitment in 2012 to stop drinking alcohol.

Do you smoke?  Why?  The warnings regarding the risks of smoking never cease.  If you smoke and have HBV, you increase the rate of your liver disease progression and you significantly increase your risk of liver cancer. Once again it’s the combination of HBV and the bad habit that increases your risk of liver cancer even more.  Smoking is bad for you and HBV is bad for you.  Make a commitment in 2012 to stop smoking.

Fatty liver disease and diabetes are on the rise. ALT levels may be elevated by your HBV or by fatty liver disease.  You don’t want either, so do your best to avoid foods that increase your risk for diabetes or fatty liver disease. Take a hard look at your diet.  Do grab food on the go?  Do you shop on the inside of the grocery store or the outside?  Do the food items you buy contain a list of ingredients you cannot pronounce?  Go back to basics. Shop on the outside of the store where the fresh vegetables, fruits and other fresh foods reside.  Make your own meals rather than buying ready-made. There is no specific diet for those living with hepatitis B, but a healthy diet is important. Eat fresh, healthy vegetables, fruits and lean meats.  Avoid “white” pastas and breads, and eat whole grains.  Avoid high fructose corn syrup and refined sugar.  Read the labels on the backs of the packages to compare your intake of sugar and fat. You may be swapping one for the other, which might be important if you are watching your sugar intake. Eat health, monounsaturated fats like olive oil, avocados, and nuts.  Avoid saturated fats such as butter, fatty meats, etc.  Spend a little time learning the healthy-diet basics and gradually implement changes into your diet and lifestyle.

Exercise really is good for you, but sometimes it’s tough to get in the groove. Just because you have HBV does not mean you should avoid exercise.  Exercise as you are able.  You will find that moderate exercise will actually make you feel better rather than worse.  HBF’s Senior Medical Adviser advises those recovering from an acute HBV infection should avoid bed rest unless specifically prescribed by their doctor. Getting up and about actually helps your liver and the recovery process. This does not mean you need to be training for a marathon, but exercise in moderation is good.  So find yourself an exercise partner, and go out for a walk, jog, or swim, or sign up for a Zumba class at your neighborhood gym.

So when you’re getting ready to make your list of New Years’ resolutions, be sure to set goals that are attainable.  You don’t have to quit smoking or drinking alcohol cold turkey.  This is a lifetime commitment. Make a realistic plan to taper off and stick to it.  Ask your doctor for advice, or find friends or family members that are also interested in making commitments to change.

Happy New Year to all!  Out with the old-bad habits, and in with the new, healthy habits for 2012!

Uncategorized

Adopting a Special-Needs Child with Hepatitis B

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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.

Hepatitis B Treatment

Does Your Sex Life Interfere With Organ Donation? A Hepatitis B Perspective

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Giving or receiving the gift of life through organ donation is truly a gift. This week’s story – “CDC’s proposed guidelines for transplants say two sex partners is too many for top-notch organ donors ” may well jeopardize the availability of this precious gift to those in need.

For those living with HBV, this dilemma is especially disheartening.  With organ donation highly unlikely due to their HBV status, those living with HBV also face the possibility of requiring a liver transplant due to end-stage liver disease or HCC.

Organs for donation don’t come easily.  These proposed guidelines are limiting.  The question is, are these guidelines even realistic?  Dr. Harry Dorn-Arias, a transplant surgeon at the Univeristy of Virginia told MSNBC, said it best: “With the new guidelines, every college student in America will be high-risk”. Perfectly healthy, young candidates may choose to waive their decision to donate their organs because the guidelines seem so… judgmental. They might not even consider the act of donation.

And who will be out there to ensure that the now smaller subset of potential donors isn’t lying, and who will update the information annually? Will the Department of Motor Vehicles (DMV) be quizzing you on your sexual activities when you choose one way or the other to check the organ donor box for your license? If you’re sixteen and standing there with your mom at the DMV, are you going to take a stand and not be an organ donor because you have multiple sex partners, and mom doesn’t even know you’re having sex?  (Just went through the whole DMV process, so it’s fresh in my mind).  What if you are completely monogamous, but your partner is not? Do you have high-risk organs due to association?  And what if you are considering a life-saving, living related donation for your wife, but you’re afraid to tell her you’ve had multiple sexual partners for the last 10 years of the marriage? If you’ve been lying the last 10 years, why stop now? What if you had a very active sex life, but settled into a happy monogamous relationship, but forgot to update your organ donor card?  Although there’s a little levity thrown in here, these scenarios are not that far-fetched.

When you are in need of an organ, and you are fortunate to find a match, you have to assume there will be risks involved in the process.  Naturally you want the safest organ available, but there is not the time or the medical testing available to screen for every medical conceivable complication that might result in a failed transplant. At some point there has to be a leap of faith. Personally I would choose the “high-risk” organ from a healthy 20 year-old with 5 sex partners last-year, over no organ at all.

It’s all about risks vs. benefits.  Slashing the pool of potential donors based on the number of sexual partners is riskier than having no choice from a much smaller, reduced pool filled with many of the same unknown variables.  The donor pool isn’t necessarily safer, it’s just smaller.

Organ donation truly is a gift. If you are living a life style that you know to be high-risk, or if you knowingly have a disease that will put a recipient at risk, then do not donate.  Otherwise, carry your organ donor card with pride and check the box “yes” next time you’re at the DMV.

Hepatitis B Prevention

Many Parents Request Delays in Vaccine Schedule -Why the HBV Vaccine is Important for Infants and Young Children

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Last week’s report of a recent study shows that more parents are opting out or delaying some vaccines for their children, and the hepatitis B vaccine is one of those parents sometimes choose to skip or delay.  What is even more disappointing is that the majority of pediatricians polled were comfortable with an alternative HBV vaccine schedule for their young patients.

The unfortunate thing about HBV is that it is very effectively passed from an HBV infected mother to her child during the birth process. Children that are infected with hepatitis B at birth, or as a baby, have a 90% chance of being chronically infected for life.   Young children that are infected horizontally have up to a 50% chance of being chronically infected for life. Children living with HBV are typically highly infectious and very effective at unknowingly spreading the virus to little friends or family members. HBV is present in blood and body fluids and we all know how kids are fascinated by one anothers’ boo-boos, and half of them have some sort of rash or scrapes that are tough to keep covered at all times. The beauty of vaccination is that infants and little ones are protected when they are at day care and pre-school, and when they are playing with the neighborhood kids.  Protocols are in place, but accidents do happen and rules are not always followed. You may think your child’s world is HBV free, but but you may be wrong.  Is it worth the risk when there is a safe and effective vaccine available?

Later in life, HBV is effectively transmitted horizontally in the mode that is often associated with infectious disease – sexually.  We are all sexual beings and at some point sex will become part of our lives.  Will you be thinking about having your teen or college student vaccinated, or will you be like most of us and too busy to even think about it?  What about when your teen or college student comes home with a tattoo or body piercing they got at a bargain tattoo/piercing parlor?  No one likes to think about their children making impulsive decisions, but the reality is that most do.  They have lapses in judgment and they make mistakes. A parent can only control so much, but why not eliminate the chance of HBV infection later in life?

You might think you will deal with HBV if you are faced with it. Even if your child is infected, or playing with a child that is infected, there will be no notable symptoms.  That’s why they call it a “silent infection“. Your liver is a non-complaining organ so symptoms rarely appear unless your liver is in distress. HBV will likely go unnoticed for decades unless it is picked up with routine blood work, during a blood donation, or a blood screening. That doesn’t mean liver damage is not occurring over decades of infection.

Our world keeps getting smaller, and travel to exotic lands is common. The U.S. is a melting pot of countries around the globe – many where HBV is prevalent.  Do you know that 2 billion people in the world have been infected with hepatitis B and that 400 million are living with a chronic, life-long infection? That is 1 out of 3 people in our world that have had an HBV infection!  There are good treatments out there, but there is no complete cure.  Many live long, lives, but lifelong HBV puts you at high risk for advanced liver disease, liver cancer and death.  The stigma associated with HBV leaves many throughout the world unemployable, and even those in the U.S. may suffer from discrimination and judgment by others due to their disease.

People write to HBF and tell us their HBV story.  Many have no idea how they were infected.  It is not casually transmitted, but it is an infectious disease – 50 to 100 times more infectious than HIV and 5 to 10 times more infectious than HCV.  The U.S. is fortunate to have a vaccine available to all children born in this country. Parents worldwide would give anything to have their infant vaccinated to prevent a lifetime with HBV.  Some countries have HBV vaccine shortages.  Many cannot afford the vaccine, and many are unaware of the vaccine until they learn they are infected. In the U.S. we have an opportunity to prevent a life-long infection with HBV with a simple vaccine.  Please don’t choose to delay or omit the hepatitis B vaccine from your child’s vaccine schedule.

Hepatitis B Prevention, Living with Hepatitis B

Hepatitis Transmission Risk in Hair and Nail Salons – An HBV Perspective

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The American College of Gastroenterology wrapped up its annual meeting in Washington, D. C. this week. A few of the topics discussed apply to those living with hepatitis B or the prevention of HBV and other blood-borne pathogens.

Hepatitis Transmission Risk Needs to be Studied in Nail Salons and Barbershops is a press release that discusses a new analysis presented at this year’s annual ACG conference. It looks at your favorite nail and hair salon and barbers shop and discusses the risk of infectious disease transmission. Since HBV is more infectious than both HIV and HCV, it would seem the transmission of HBV might be higher. There is not a great deal of conclusive data out there, but they agree it warrants further study.

Practically speaking, certain shop activities could provide a vehicle for transmission of HBV and other blood-born pathogens if adequate precautions are not followed. Fortunately there is a safe and effective vaccine for HBV, but not for HCV and HIV. No one wants an infectious disease, and if you are living with HBV, you don’t want to be co-infected with another viral agent.

For those living with HBV, it is recommended that personal care items such as nail files, clippers, and tweezers NOT be shared.  At your favorite nail salon, it is possible that “tools of the trade” such as nail files, cuticle pushers, nail buffers, brushes, clippers, are not single-use, or properly disinfected. Microscopic droplets of blood could readily transmit infectious disease.  Even items such as finger-bowls and foot basins need to be properly disinfected.

At this time, there are no OSHA or CDC guidelines for infection control practices for nail and hair salons, and barbershops. They are all state regulated. Please check out this guide to regulations for nail salons, listed state-by-state. Unfortunately there was not a similar guide pulled together for hair salons and barber shops.

It is important to know what is expected at your nail salon in your state, and determine whether or not you are adequately protected. The next concern is whether or not disinfection practices are followed by the shop, and enforced by state inspectors.  You should be able to figure some of this out by spending a little time in the shop, or by asking. If you feel like you’re getting a great deal at a discount nail salon, think again of the hidden risks with a shop that does not disinfect, or use single-use items.  Many shops will maintain personal nail care tools for individual customers.  This is the way to go – whether you bring in your own tools or store them at the shop.

Here’s what you can do to help protect yourself and others:

  • Bring your own tools.
  • If you have cuts, bug bites, or a skin infection, do not get a manicure or pedicure.
  • Is there an autoclave in the shop?  If not, are the instruments properly sanitized or disposed of? How about the foot spas? Are they disinfected in between clients (10 minute cycle) and is the footbath intake filter cleaned weekly? You’re probably not sure, so ask!
  • Do NOT shave your legs immediately prior to a pedicure appointment.  Shaving increases the risk of infection
  • Use your own cutting and filing tools.  Some nail salons will keep tools of regular customers on-site.
  • Avoid credo blades or sharp instruments used for shaving calluses.
  • Reconsider cutting your cuticles
  • If the shop is clearly dirty, leave.  If the “tools of the trade” look dirty or messy, leave. This applies to both hair and nail salons or barbershops.

Your goal is to avoid shop activities that increase the risk of infectious disease transmission.  Basically this means the dispersal of any microscopic blood or body fluids.  Accidents happen, and many are unaware they have a blood-borne pathogen infection. You can also get a nasty bacterial and fungal infections, so a clean shop with proper disinfection practices is imperative for so many reasons.

The same thing goes for the hair salon and barber shop.  Avoid obvious activities that might lead to the transmission of infectious disease. If the shop is poorly maintained, dirty, or disorganized, go somewhere else. If you are having problems with your scalp that causes scabs or bleeding, wait to get a haircut, but remember that others might not do the same.  You want to be sure that hair care items are free of debris (hair and skin) and properly disinfected. This video from the Department of Regulatory Agencies for the state of Colorado (DORA) gives very thorough disinfection instructions, but I find it hard to believe that all of these procedures are being followed in all shops.

If you are a man, consider whether or not it is really wise to get a shave at your local barber.  Many shops no longer perform this service, although it is more common in other cultures. If yours does provide a shave, and you partake, be sure the razor handle is properly sterilized between customers, with a new razor used for each. Razors are such an effective mode of HBV transmission, so be aware.

Keep in mind that if you have HBV and enjoy getting your nails done on a regular basis, or visit the hair salon regularly, please be aware of the fumes emitted from the various chemicals in nail and hair products. Many of these fumes are not liver-friendly, so if you must, please be sure to frequent a shop where there is good ventilation.  Fortunately there are greener alternatives out there, but not all shops are using them. Good ventilation is key.

When my kids were little, I discouraged all nail polish for my little nail-biter, and toluene free polish when I relented.  Now there are better alternatives for everyone, so take advantage of them.

So next time you step into your neighborhood nail or hair salon or barbers shop, take a look around and make sure you are satisfied with the conditions.  There are some form of infection control and disinfection practices in place, but are they being followed?  You might just have to ask!

 

Hepatitis B Prevention

ACIP Recommends HBV Vaccine for those with Diabetes

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What’s new in the world of HBV lately?  Perhaps the biggest HBV story over the last week is the Advisory Committee on Immunization Practices (ACIP) strong recommendation for those with diabetes under the age of 60 years to be vaccinated against HBV.  Diabetics under the age of 60 have twice risk of acquiring HBV than those without. The recommendations for vaccination apply to those with type 1 or type 2 diabetes. The sooner those living with diabetes are vaccinated, the better.

Those living in long-term care facilities that require assisted glucose monitoring are also at greater risk for HBV.  This increased risk occurs during the monitoring process, where the accidental re-use of lancets and needles may occur from one patient to another. It is imperative that infection control practices be strictly followed in this environment to prevent small, HBV outbreaks among the elderly in long-term care facilities. HBV vaccination is not recommended for the majority of those over age 60 because the HBV vaccine is not as effective in the frail and elderly population. The earlier in life one is vaccinated against HBV, the better.

Speak up and make sure your loved-one living in long term care and living with diabetes and/or HBV has a personal glucose meter, or that proper infection control practices are being followed at their long-term care facility.

Diabetes and hepatitis B are each challenging chronic conditions to manage alone, but in combination, they can be very complicated. If you are a diabetic with HBV, it is essential that you follow the recommendations provided by both treating physicians (for both diabetes and HBV), and that both are in synch with one another.  It comes down to you faithfully adhering to all medications prescribed, strict monitoring of both your diabetes and your HBV status as dictated by your doctor(s), and following all recommended lifestyle changes.  Be sure to keep your doctor apprised on new issues that may come up as a diabetic with HBV.

If you have HBV, and do not have diabetes, but have a family history of diabetes, take precautions now. Talk to your doctor and be sure to monitor your blood pressure, cholesterol, and weight.  Maintain a healthy weight through diet and exercise.  Know that risk of type 2 diabetes increases with age, (greater than 45) and that your ethnic background may also be a risk factor. This would include Hispanics, African-Americans, Native Americans, and Asians.

Hepatitis B Prevention

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

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

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

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

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

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

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

Visit: www.bfreephilly.org

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

Hepatitis B Advocacy

Viral Hepatitis Meetings in D.C.

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

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

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

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

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

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

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

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

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

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

Living with Hepatitis B

Living with HBV and Dealing with “Itchy” Skin

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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.

Hepatitis B Diagnosis & Monitoring, Living with Hepatitis B

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

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

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

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

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

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

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

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

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

Baruch S. Blumberg Institute