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Hepatitis B Advocacy

Hepatitis Health Action Alert: Stop the Attacks on Prevention and Public Health Fund

Action Alert! The Hepatitis Community Responds to Health Care Reform. Tell Congress Not To Cut The Prevention and Public Health Fund

The Prevention and Public Health Fund is under attack in Congress once again. Some leaders in the House of Representatives would like to make drastic cuts to the Fund as part of negotiations on a long-term deal on the payroll tax cut and Medicare payments rates to medical providers.

The Prevention and Public Health Fund, part of the Affordable Care Act, provides money each year for vital prevention and public health services. The fund will grow each year until it eventually provides $2 billion/year.

This fund is extremely important to the nation’s fight against the viral hepatitis epidemic. Later this year, the Department of Health and Human Services is expected to allocate $10 million from the Fund for viral hepatitis screening, testing, and education programs. This initiative will greatly help efforts to identify the millions of Americans who have chronic hepatitis B or C and link them to care and treatment.

Please take a few minutes to call Congress in support of this lifesaving program!

What YOU can DO:

Please call your U.S. House Representative and two U.S. Senators immediately. We are hearing directly from Congressional staff that phone calls are the most effective form of communication. 

Call the Capitol Switchboard toll-free at 1-888-876-6242 and ask to be connected to your United States Representative. When you reach your Representative’s office, tell whoever answers the phone that you are a constituent and that you would like to speak to the staff person who handles health care issues. Whether you speak to the staff person live or leave a voicemail, tell him/her:

“My name is _______________ and I live in (city/state). I am calling in strong support of the Prevention and Public Health Fund, which is an important part of the Affordable Care Act. This Fund is a great opportunity to provide badly needed funding for viral hepatitis prevention, testing, and screening programs and must be preserved. I urge Representative_____________ to oppose any efforts to cut the Fund as part of the payroll tax/Medicare physician reimbursement negotiations.”

After you speak to your Representative’s office, call the Capitol Switchboard again and deliver the same message to the health care staff person in your two U.S. Senators’ office.

Thank you for taking the time to make a difference! Please spread the word.

Get involved with Hepatitis Health Action!

  • Join Hepatitis Health Action’s Facebook group:  http://tinyurl.com/hephealthfacebook where you can participate in discussions with other advocates and share your ideas and strategies.

Hepatitis Health Action is a campaign led by viral hepatitis advocates working to make sure that health care reform addresses hepatitis B and C.

Living with Hepatitis B

HBV Employee Screening By Suppliers of Your Favorite Apple Gadgets -Tip of the Iceberg, But Commendable

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Apple recently revealed a list of its suppliers of the iphone, ipad and other gadgets, and the labor, health and health and environmental violations against some of the offenders. Most of these violations were out of Taiwan and China.  Included in the list of violations was the screening of employees for hepatitis B. What will this disclosure mean to those living with hepatitis B in China and around the world?  Apple has responded to each of the violations that were uncovered and says it will end relationships with repeat offenders. Will this stop discrimination against those living with HBV? Probably not, but it may stir-the-pot, encouraging other corporations to do the same.  Apple has star power, and the ability to make waves due to their success and reputation.  However, it is likely that foreign suppliers will circumvent the system and continue screening its employees or prospective employees for hepatitis B.

The question is how a job making gadgets, or components for gadgets, for Apple or any other company could possibly pose a reasonable risk of HBV exposure to any factory employee?  Hepatitis B is not transmitted casually. It is not transmitted by sneezing, coughing, shaking hands, sharing a meal, or working side-by-side with someone on the factory floor or sharing an office with someone who has hepatitis B.  HBV is transmitted through  blood and infected body fluids through blood to blood contact, unprotected sex, unsterilized needles and from an HBV infected mother to her newborn during delivery.

Every day the Hepatitis B Foundation responds to inquiries from people around the globe. Due to the stigma associated with HBV, chronic carriers may be denied employment due only to their HBsAg positive status.  There are special circumstances where exposure prone procedures may put others at risk due to an HBV infection. This would be limited to health care positions that involve invasive procedures such as gynecologic, cardio-thoracic or surgical procedures that might put a patient at risk. These risk-prone occupations do not include – other health care positions, jobs in the food industry, the retail industry, being in an office, in a factory, on cruise line, or any number of ordinary jobs. A positive HBsAg test should not prohibit employment, or entering and working in another country.

There will always be discrimination in our world. Even with laws that protect employees in the U.S. there are ways to circumvent the system and quietly discriminate. In many countries where HBV is prevalent, discrimination is blatant.  And of course HBV screening is merely the tip of the iceberg with the violations and deplorable working conditions in countries like China. Eyes wide-open can be a little disconcerting for those of us with our favorite gadgets. Apple’s disclosure of these violations is commendable and a start in the right direction.  Hopefully other companies will step-up and follow their lead.

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 Diagnosis & Monitoring

B A Hero…Free Hepatitis B Sreening Day!

Hep B Free Philadelphia is putting on a city-wide “B A Hero” free hepatitis B screening day on Saturday October 22, 2011. Free hepatitis B screenings will be available at the following hospital sites:

  • Jefferson – Focusing on the Chinese community and will be a bi-lingual event
  • Einstein – Focusing on the Cambodian community and others, and will be a bilingual event
  • Children’s Hospital of Philadelphia (CHOP) – Focusing on the African community and the screening of entire families, including kids.  Event is bi-lingual (French/Haitian Creole)
  • Drexel – Focusing on the Chinese and Korean communities.  Event will likely be tri-lingual.

Please join us.

B sure and B tested

All screening and education is Free!  Fun give-aways for everyone screened!

 All test results are private and will be mailed to the individual.

 

Living with Hepatitis B

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.

Hepatitis B Diagnosis & Monitoring, Living with Hepatitis B

To Disclose or Not to Disclose, That is the Question

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Choosing to disclose, or not to disclose your hepatitis B status is a very personal decision.  The key thing to keep in mind is that once this private information is out, it cannot be reeled back in.  It’s best to stop, and give it serious thought before you move forward with your decision.

Being diagnosed with a chronic illness can be overwhelming.  Many are shocked by their HBV diagnosis. Some have been living with HBV since birth, but because it is often a silent infection, with few to no symptoms, they are surprised they are infected.  Others may have no idea how they were infected. A support network of friends, family and loved ones is important at this time.  Sadly, your news may elicit a variety of responses, from loving support to complete avoidance.  Unfortunately, there is often a stigma associated with HBV.  People are afraid of what they don’t understand, and most are ignorant about infectious diseases.  It’s something that happens to someone else.  Little do they know that HBV does not discriminate.

Here are some important points to consider:

  • Location – Where do you live?  If you live in a large city or community, you may be able to better pick and choose who learns of your HBV status. In a larger community you may have a little more flexibility to move around, or make changes if your HBV disclosure is a problem.  If you live in a small town, with few employment opportunities, and a hand-full of nosy neighbors, you might want to think long and hard about telling anyone in your community.
  • Family – Only you know your family.  Depending on your ethnic background, there may be a cultural stigma associated with having HBV. Break the news gently and be prepared to supply easy-to-understand information. Remember there is the possibility that you acquired your HBV infection at birth, and other family members may be at risk and need to be tested.
  • Work – Unless you are symptomatic and missing work due to your HBV, it might be a good idea to keep your hepatitis B status under wraps.  In many countries, an HBV infection destroys careers.  Even subtle discrimination can ruin your reputation at work.  If you require time off due to HBV, be sure to take it up with human resources.  Your information will be kept confidential.
  • Sexual partners – It is more important than ever to ensure you are having protected sex if you are not in a monogamous relationship. If you have HBV, you do not want a coinfection with another infectious disease like HCV or HIV.  Insist on protection, and use a condom.  You owe it to yourself and your partner(s).  Be sure any significant others are vaccinated.  If you believe they have been exposed, then they need to be tested. The flip-side is the concern with a relationship that turns serious, where you have not yet disclosed your HBV status. This is a difficult balance.  They may be hurt or angry that you did not disclose, earlier, and yet you don’t want to enter every new relationship spilling all of your private info.
  • Friends – Friends have been made and lost over personal information such as HBV disclosure. If they can’t accept you, living with HBV, who needs that kind of friend?  This is true, as long as they will respect your privacy and choose not to disclose your private information to others. Take a good look at your friends, and remember that many really are acquaintances.   Acquaintances do not need to know the details of your HBV status.  It’s your choice who you decide to tell.
  • Medical professionals – All health care providers must practice infectious disease protocols and standard precautions.   It keeps everyone safe.  That being said, it is important that your doctor is aware of your status.  He is making treatment decisions and prescribing medications that could effect your liver health. HIPAA regulations will keep your private information protected at medical offices.
  • Support groups – It might be difficult to find a traditional hepatitis B support group, but there are wonderful on-line HBV support groups out there.  This is a great environment to query others living with HBV about who they choose to tell and not tell.  It helps to hear it from others that truly understand what you are going through.  Friends and family may love you, but it’s very possible they won’t fully understand what you’re going through.   As the newness of your HBV diagnosis wears off, I can promise that things will get better.  Give yourself a little time….

Disclosure truly is a personal decision. There is no right or wrong answer.  Much depends on your personality and what you can live with. When you make the decision to disclose, you need to make the commitment to educate.  This is admirable because it takes courage to stand up, raise awareness, and be out there with your personal story.  The response from others may surprise you – for better or for worse!  Just remember that before you decide to disclose, you had best be informed.  Educate yourself, so you can educate others on the HBV basics and help raise awareness.  Let friends know  how HBV is transmitted.  Encourage hepatitis B vaccination. Arm yourself with simple explanations.  Your goal is not to scare your audience, but rather raise their awareness of those living with hepatitis B.  Remember it’s your decision, but take your time…

Hepatitis B Prevention

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

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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.

Baruch S. Blumberg Institute