Good news for those with chronic hepatitis B that are taking cholesterol-lowering statins. Results published in Jan. 23 Journal of Clinical Oncology show statins may actually lower the risk of liver cancer for those living with chronic HBV in a dose dependent manner. The study monitored 33,413 hepatitis B patients for hepatocellular carcinoma (HCC) between 1997 and 2008 and tracked the number of HCC cases since 1999.
These are important findings because chronic hepatitis B significantly increases the risk of liver cancer, which causes 80% of primary liver cancers (HCC) worldwide. In the U.S., HCC is the second deadliest cancer with a five year survival rate of less than 10%. Those with chronic HBV are 100 times more likely to develop liver cancer than those without HBV. There are a number of contributing risk factors such as age, gender, ethnic background, family history, smoking history, and extent of liver damage. Despite the known risks, it is impossible to predict without regular liver cancer screening. Be sure to discuss the guidelines for liver cancer screening with your doctor, as there are specific risk factors that may make monitoring sooner and more frequent, important. Make liver cancer screening part of your bi-annual or annual monitoring of your HBV and liver health.
So, how do statins reduce the risk of liver cancer for those with Chronic HBV? The mechanism has not been determined and will require further study. Statins may reduce the risk of HCC, but it is important to carefully discuss the use of statins with your liver specialist and other treating physicians. Monitoring of your liver enzymes while taking statins is important for those without HBV, but it is even more critical if you have HBV. Start with a baseline of your liver enzymes (ALT/AST) before beginning statin use, followed by testing at 6 and 12 week intervals. You want to ensure your ALT/AST levels do not increase by more than three times the upper limits of normal. Any spikes in your ALT/AST levels will likely occur in the first three months of statin use. Elevated levels may require a discontinuation of one statin and a simple switch to another. With the help of your treating physician(s) you will determine what is best for your unique situation to ensure the benefits of statin use outweigh the risks.
And if you are taking a daily statin, don’t forget the importance of eating a well-balanced diet. Sitting down to a big-ole cowboy steak with your statin is probably not what the doctor had in mind when he prescribed cholesterol-lowering medication!
There’s a contest going on and we’d love your help! Facebook is having a little competition to see who can get the most “likes” on their facebook page. The Hepatitis B Foundation wants to help jump-start Hep B Free Philadelphia’s Facebook page, and help them win “facebook Ad cash” in the process. What will Hep B Free Philly do with those Facebook Ad dollars? Well, Hep B Free Philly will use those Ad dollars to possibly raise donations, but perhaps more importantly, it’s another way to use one of our favorite social media channels to help promote hepatitis B awareness.
That’s it! If you really want to help Hep B Free Philly win, ask your friends or family to “like” the page. It’s that simple!
Use the little “Facebook share button” at the top of this blog to share it with your facebook friends!
This little competition ends March 31, 2012, so please don’t delay!
While you’re there, feel free to check out the page and see what Hep B Free Philadelphia’s community-owned public health campaign is doing in Philadelphia to educate and raise public awareness, along with increasing testing and vaccination in the fight against hepatitis B and liver cancer. You can also check out Hep B Free Philly’s website! They’ve got a lot of great activities going on!
Finally, the Hepatitis B Foundation also joined the competition. At this time our facebook page has 684 “likes” of our page! We’d like to win some of those free Facebook Ad dollars and see how we can use them to raise HBV global awareness. So, if you haven’t already, be sure to “like” HBF’s Facebook page!
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.
Join Hepatitis Health Action’s Facebook group: http://tinyurl.com/hephealthfacebookwhere 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.
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.
What does this mean if you have hepatitis B? I’m not sure. If you are living with HBV, it is clear that it is best to avoid coinfection with another hepatitis virus or infectious agent. Coinfection will likely hasten liver disease progression and increase the risk for liver cancer. At this time, the hepatitis A vaccine is recommended for those who are infected with HBV in order to avoid additional stress to the liver. Please keep in mind that the mode of transmission is the same for HBV and HCV, but is different for HAV and HEV. It’s important to keep your viral hepatitis ABC’s straight!
Hepatitis E is a self-limiting disease, which is shed in the feces and transmitted via contaminated water and food – very much like HAV. Although HEV is an acute infection like hepatitis A (HAV), it has about a 3% overall mortality rate and a much higher rate among pregnant women, and solid organ transplant recipients. It predominantly affects those between the ages of 15 and 40 years. HEV is endemic in Central and South-East Asia, North and West Africa, Mexico and developing nations where there may not be access to clean water and proper sanitation and hygiene. At this time, it is not prevalent in the U.S., but we are a traveling nation, and it’s something to think about when traveling abroad.
The HEV vaccine, developed by Xiamen University and Xiamen Innovax Biotech Co. Ltd. is a three-shot series : shot one followed one month later by shot 2, followed by shot 3 six-months after the third shot. The phase III trial results were found to be well tolerated and safe for the general adult population. This would make the HEV vaccine a good choice for travelers in endemic areas who can receive adequate protection with a 2-shot series in one month.
However, these results for the phase III study were for the general population only and did not include children, adults over 65 years, pregnant women and those living with chronic liver diseases such as HBV or HCV. If you are infected with HBV, it would make sense to be vaccinated against a virus that can cause additional harm to the liver, but at this time, additional research needs to be done ensuring the vaccine will benefit those living with hepatitis B or C.
After 13 Years, our Mammablondie has retired as a listowner of the Hepatitis B Information and Support List. Sheree Martin has been List Mom to thousands of hepBers who have come to us from all over the world. Like a true mother, she was quick to give hugs, the cyber kind, just when we needed them most. And when we squabbled, she was there to call “time out”.
As for the “information” component of our list, Sheree has contributed more than anyone else. She has spent countless hours scanning the Internet daily for HBV research and news. The result of her efforts is our Hepatitis B Research List. For those wishing for information only, you can select send a blank email to HBV_Research-on@mail-list.com
For a number of years the PKIDS organization hired her to do the same thing for them, provide them with daily bulletins about kids’ infectious diseases. Sheree donated the money she earned to our listserv in order to cover miscellaneous expenses.
In the beginning days of the List, John Kirk and I recognized immediately what a gem Sheree was, and we invited her to join us as a third listowner. She was smart, she was a nurse, she had IT skills, she was a good writer, and she knew how to referee when the two male egos would wrestle.
Sheree lives in the same small town where she grew up, on the edge of the Appalachian Mountains. She’s proud of what she calls her hillbilly roots.
We all got to know and love Sheree’s mother, Yvonne, when she accompanied Sheree to the Hepatitis B Foundation’s patient conferences. Not only did Yvonne have HBV, but in 1999, Sheree’s only sibling, Mike, died of liver cancer associated with HBV. Fighting HBV was a very personal battle for Sheree.
We’ll need two people to fill Sheree’s shoes on the List. Yvonne Drazic (Australia) will be our new listowner, and Christine Kukka (Maine) will take over the Research List.
At home in that picturesque country village, Sheree will have more time to do what she loves most– being a mother to her 3 sons, 2 grandsons, 2 dachshunds, and 1 beagle.
We won’t lose our List Mom completely. “I’ll still be around,” Sheree promises. I’ll be lurking in the wings.”
A big hug to Sheree,
Steve Bingham, Retired List Dad
If you or someone you know is living with hepatitis B, we encourage you to join this HBV online forum filled with information, support and compassion!
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!
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.
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.
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.
Good news for those with chronic hepatitis B that are taking cholesterol-lowering statins. Results published in Jan. 23 Journal of Clinical Oncology show statins may actually lower the risk of liver cancer for those living with chronic HBV in a dose dependent manner. The study monitored 33,413 hepatitis B patients for hepatocellular carcinoma (HCC) between 1997 and 2008 and tracked the number of HCC cases since 1999.
