Thanksgiving is not only a day to eat turkey or remind us to remember what we are thankful for; it is also National Family History Day!!1 This holiday can be used an opportunity for families to discuss and record health problems that run through the family, as this helps us live longer and healthier. 1
There are many chronic diseases that may run through multiple generations of a family. 1 Doctors can predict whether or not you could have a chronic disease just by knowing if your parents, grandparents, and other relatives have had it. 1 That is why knowing your family health history is an important and powerful screening tool.1 You can change unhealthy behaviors, reduce your risk of diseases, and know when you should be screened when you learn about what diseases run through your family. 2
Hepatitis B is not like other chronic diseases, where if your parents have it, your genes make you more prone to it. Hepatitis B is not genetic. The hepatitis B virus is transmitted through blood and infected body fluids. This can happen through direct blood-to-blood contact, unprotected sex, body piercings or tattooing, intravenous drug use, and as a result of unsafe medical or dental procedures. It can also be transmitted from an hepatitis B positive mother to her baby at birth.
Even though hepatitis B is not genetic, you should still include it in your family health history discussion! The most common method of hepatitis B transmission worldwide is from mother-to-child due to the blood exchange that happens during child birth. Pregnant women who are infected with hepatitis B can transmit the virus to their newborns during delivery. 90% of babies exposed to hepatitis B at birth will become chronically infected with hepatitis B, which increases their risk of serious liver disease later in life. Knowing your family’s hepatitis B history can help you figure out if you and other loved ones should get screened for or vaccinated to protect against hepatitis B.
Knowing if you have a family history of liver cancer can also be important, since hepatitis B is one of the leading causes of liver cancer. If your family has a history of hepatitis B related liver cancer, then you may have a greater risk of developing liver damage or liver cancer if you have hepatitis B. Be sure to discuss a family history of liver cancer with your liver specialist.
If you need some advice on how to start the conversation about your family health history, read more here. You can also use the US Department of Health & Human Services’s My Family Health Portrait Web tool to help start this dialogue and learn how to share family history information at a future doctor visit.
You don’t need to wait until this Thanksgiving to talk about your family health history. You can talk to your family about your family health history and hepatitis B status RIGHT NOW!
By Sierra Pellechio, Hepatitis Delta Connect Coordinator
Hepatitis D, or hepatitis delta, is the most severe form of viral hepatitis known to humans. The hepatitis D virus infects the liver and is dependent on the hepatitis B virus to reproduce. This means that people who are already infected with hepatitis B are at risk of contracting hepatitis D as well.
Worldwide, more than 257 million people live with hepatitis B and of this number, an estimated 15-20 million are also infected with the hepatitis delta virus (HDV). While uncommon in the United States, HDV co-infection is more common in parts of the world such as China, Russia, Middle East, Mongolia, Romania, Georgia, Turkey, Pakistan, Africa, and the Amazonian river basin. For this reason, it is important to test hepatitis B patients who originate from these higher endemic areas for hepatitis D. Anyone with chronic hepatitis B who is not responding to antiviral treatment, or who has signs of liver damage even though they have a low viral load (HBV DNA below 2,000 IU/mL) should also be tested. Fatty liver disease (caused by obesity) and liver damage from alcohol or environmental toxins should be ruled out as causes of liver damage before testing for HDV. Hepatitis D infections lead to more serious liver disease than hepatitis B infection alone. It is associated with faster progression to liver fibrosis, increased risk of liver cancer, and early decompensated cirrhosis and liver failure. This is why it is so important that people with hepatitis B and D coinfection are diagnosed before it can lead to severe complications.
Robert Gish, MD, Hepatitis B Foundation Medical Director, and David Hillyard, MD, Medical Director, Molecular Infectious Diseases, ARUP Laboratories, tackled the topic of diagnosing hepatitis D in a webinar in October. Dr. Gish also answered additional questions, which are featured below:
What is the first step in diagnosing an HDV patient?
The HDV antibody test (anti-HDV) is the first test that is run to see if a patient has been infected with hepatitis delta. Because this test will be positive even if a patient has cleared a hepatitis delta infection, it is followed up with an HDV RNA test, which determines an active infection. There is also an antibody test (anti-HDV igM) that can test for an acute active infection.
Are there tests available in the US that can detect the HDV genotypes or just genotype I?
Although there have been 8 genotypes of HDV identified, each with their own distinct progression outcomes, genotype testing in the US remains rare and often difficult to acquire.
What is the role of measuring HDV RNA in monitoring chronic HDV progression or response to treatment?
The most effective way to understand the progression of a hepatitis D infection is to use liver ultrasounds, elastrography and fibroscans. These tests can evaluate the health of the liver. Declining HDV RNA level usually indicates a positive response to treatment.
Is there value to testing patients for a disease for which there are not many treatments?
Because patients who are coinfected with B and D have twice the risk of cirrhosis and liver cancer compared to monoinfected patients, it is an important diagnosis to make. Although there is currently only 1 treatment, lives are still being saved.
Should primary care providers be testing high-risk patients for HBV and HDV at the same time?
No, providers should only test patients who already have hepatitis B. One in twenty people with hepatitis B are thought to also be infected with hepatitis D. Bottom line: testing for hepatitis D is a simple blood test that could change the course of treatment and save your patient’s life!
If you do find out that you have hepatitis D, it can be overwhelming and scary. However, knowing the basics can help you manage your diagnosis. Through the Hepatitis B Foundation’s Hep Delta Connect program, you can get information on how to protect your loved ones, find a physician, and seek out support.
Worldwide 84% of countries have hepatitis B immunization programs; yet only 39% provide the necessary birth dose to prevent hepatitis B. This is a huge gap that must be addressed if we are to meet hepatitis elimination goals by 2030.
To celebrate World Immunization Day, here are some facts about the hepatitis B vaccine!
The safe and effective vaccine provides lifetime protection against hepatitis B, the most serious common liver infection in the world. The vaccine is a series of 3 shots given over a 6-month period, typically at 0, 1 and 6 months.
There are minimum time periods that are needed between each dose. The second dose is given at least 4 weeks after the first dose; the third dose is given at least 8 weeks after the second dose, and there must be at least 16 weeks between doses 1 and 3.
After the 1st dose of HBV vaccine, there can be up to 50% protection. After the 2nd dose of HBV vaccine, there can be up to 80% protection. It is very important to receive the third shot to ensure maximum, long-term protection.
If your vaccine schedule has been delayed, you do not need to start the series over, you can continue from where you have left off – even if there have been years between doses.
CDC, AAP and WHO recommend the birth dose for ALL newborns within 24 hours of birth because newborns and babies are at the greatest risk of developing lifelong, chronic infection if they are exposed to the hepatitis B virus. Giving the “birth dose” of the hepatitis B vaccine after a baby is born helps to reduce the risk of transmission to this very vulnerable population.
Perinatal prevention is especially critical for babies born to women who are infected with hepatitis B. All pregnant women should be screened for HBV. If positive, mom should be referred to care, and her baby should receive the birth dose of the vaccine and shot of hepatitis B immune globulin (HBIG), if available, within 12 hours of birth.
In order to meet this requirement, the first dose of the hepatitis B vaccine must be the “monovalent vaccine,” which means it is only the hepatitis B vaccine.
Many countries provide the “pentavalent vaccine”, which protects against 5 diseases, including hepatitis B. Unfortunately, the first dose of the “pentavalent vaccine” is given at 6 weeks, which means babies are not protected at birth and during the first 6 weeks of life against the hepatitis B virus.
It is very important that babies receive the “monovalent” hepatitis B vaccine at birth (not the “pentavalent vaccine”) in order to protect against a lifelong chronic hepatitis B infection. Babies must complete the vaccine series according to schedule. This can be done singly with the HBV monovalent vaccination or in combination with other vaccines (pentavalent, hexavalent etc.) Babies born to mothers that are hepatitis B positive should follow up with post-serologic testing at 9 months or a year to ensure the baby is protected against the hepatitis B virus.
There is no second chance to protect a newborn or baby from hepatitis B!
If a child, adolescent or adult missed the hepatitis B vaccine, they can be vaccinated at any time. For adults, it is never too late to start the hepatitis B vaccine (unless you are already infected with the hepatitis B virus, or have recovered from a past infection).
When we’re first diagnosed with hepatitis B, our physical health isn’t the only thing we need to focus on. Many of us experience powerful surges of fear, anger, sadness, powerlessness, depression, and anxiety.
No matter what you’re feeling, you have a right to feel whatever emotions are welling up – sometimes unexpectedly – inside you. There are no right or wrong feelings, they just are, and it’s up to you to decide what choices you make and how to respond to them.
When my daughter was first diagnosed, she was a toddler and happened to be coming down with a cold. I knew nothing about hepatitis B and was convinced she would soon die from it given her crankiness, lethargy, and nonstop sleeping.
Within a day or two, she was her smiling, energetic self again, and I happily slipped into denial. Surely the test was wrong or there was a mix-up in the result. My husband dragged his feet for weeks before he agreed to be screened for hepatitis B so great was his denial and fear.
Denial is a normal first reaction, it can give us some breathing room to get used to the idea that we’re infected. But denial can also be dangerous, especially if we’re in a sexual relationship with someone and don’t take precautions. Denial can be dangerous when we hide our infection and don’t tell our family members or partners, even though they may have been exposed. Denial is dangerous when we don’t tell our parents, who may not know they’re infected and unknowingly passed the virus to us at birth.
It’s important to talk out our feelings with a doctor, a therapist, or a friend you trust. We need to move through denial so we can begin to receive the care and support we need, and talk to others who may also be at risk.
Anger is another common and natural feeling after a diagnosis. It’s OK to get upset about how we or our family members were infected, or get angry that our parents or lovers didn’t know they had the virus and infected us. Try to talk about your anger with counselors or friends, get some exercise to work off your tension and avoid situations—including drugs or alcohol—that can ignite festering emotions.
It’s normal to feel sad, and sometimes the sadness doesn’t go away quickly. If you feel prolonged sadness, anxiety, or fear, or find you’re gaining or losing weight or sleeping more or less than usual, it’s time to talk to someone who can help.
Fear and anxiety are common because we don’t know what’s going to happen next. If you’ve just been diagnosed, you may have to wait six months for another test to show whether you were recently infected and have acute (short-term) or were infected as a child and have chronic (long-term) hepatitis B. That wait can be insufferable.
Our stress can cause a host of physical symptoms, ranging from headaches to fatigue, that may have nothing to do with hepatitis B. It’s important to talk to your doctor about these symptoms so you know what is hepatitis B-related, and what’s caused by worry and fears.
At this early stage, many of us want to get rid of the virus as soon as possible and we’re willing to try any supplement or treatment available, even if our doctors tell us we’re healthy and don’t need any treatment. At this early diagnosis point, we just need to take care of ourselves, eat healthy foods, avoid alcohol and cigarettes, and get monitored regularly, even though what we really want is a magic pill that will make this infection go away.
In normal grief cycles, there is a point of acceptance. But I’m not sure we totally ever accept this loss of our “perfect” health, and our ability to have sexual relations, give birth, or drink a glass of wine without thinking of the shadow hepatitis B casts over these activities.
As a wise friend has pointed out, we need to accept that hepatitis B is part of us, but it doesn’t have to define us. Perhaps getting to that realization is the journey we begin when we read that first lab report and hear the diagnosis.
For support and information from other people living with hepatitis B, join the Hepatitis B Information and Support Email List at http://hblist.net