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Category Archives: Living with Hepatitis B

Ten Things You Should Know About Hepatitis B and Do in 2017

Image courtesy of krishna arts at FreeDigitalPhotos.net
Image courtesy of krishna arts at FreeDigitalPhotos.net

By Christine Kukka

It’s 2017, and experts around the world continue to study the complex life cycle of the hepatitis B virus in order to find a chink in its armor that will lead to a cure. In 2016, there were successes and disappointments in the research and healthcare arena. Here is what you need to know about hepatitis B in 2017.

If you’re taking tenofovir, ask your doctor about TAF if you’re experiencing kidney problems or bone loss, especially if you’re an older woman. If you’re taking the antiviral tenofovir (Viread) long-term, ask your doctor about replacing it with TAF (Vemlidy). TAF is a reformulated version of tenofovir that delivers the antiviral more effectively to liver cells at a lower dose.  Currently, doctors prescribe either tenofovir or entecavir for liver damage. Entecavir does not cause bone loss, but it doesn’t work in people who have developed drug resistance to lamivudine or adefovir. For them, tenofovir is the only option, but it can cause bone loss and kidney problems when used long-term. With the U.S. Food and Drug’s recent approval of TAF, consumers can now get tenofovir’s robust antiviral activity at a lower dose. Because it’s brand new, your provider may not know about it, so ask about it to see if it would be better for you.

Was medical or recreational marijuana just approved in your state? Exercise caution. Many in the hepatitis C community have used medically-prescribed marijuana to ease side effects from interferon for years, so many assume it’s also safe for people with hepatitis B. Unfortunately, there are no studies that conclusively prove its safety. One study  that monitored liver fibrosis in 700 people coinfected with HIV and hepatitis C found, “…no evidence for an association between cannabis (marijuana) smoking and significant liver fibrosis progression in HIV/HCV coinfection.”

But another study  concluded: “Cell culture and animal model studies support that (marijuana) could have a therapeutic effect on liver injury and fibrosis progression. However, three cross-sectional studies in patients with chronic hepatitis C suggest that daily cannabis use is associated with fibrosis and steatosis.”

There is also no information indicating if marijuana is safer when it’s consumed in edibles vs. smoked, though many assume smoking introduces more toxins and chemical to the body. Bottom line: Just because your state approved it doesn’t mean marijuana is safe for you. Talk to your doctor and watch for more studies.

Image courtesy of Nanhatai8 at FreeDigitalPhotos.net.
Image courtesy of Nanhatai8 at FreeDigitalPhotos.net.

Fight for affordable healthcare for all. Newly-elected federal officials are threatening to fundamentally change a variety of healthcare insurance programs serving moderate- and low-income Americans and roll back protections, including mandated coverage of pre-existing conditions like hepatitis B. Many of these programs and coverage mandates have helped people living with hepatitis B get the care and medications they need. If you want these programs and safeguards to remain, you’re going to have to fight for them. Please check the Hep B United’s website regularly to learn about what is happening with hepatitis B on the federal level, and what you can do as an advocate.

Don’t give up hope. We know it’s been a tough year and that some promising drugs that were in clinical trials were shelved, but don’t give in to despair. There are more drugs in the works. Keep checking the Drug Watch page and clinical trials page to learn the latest.

Get monitored regularly. No one likes a blood draw, but it’s important to be tested annually or more often if you have a high viral load and/or signs of liver damage. There may not be a cure yet, but there are effective treatment options. Be brave, protect your health, and go to the lab for your blood test.

Demand to be screened for liver cancer. Some experts say current medical guidelines don’t go far enough to screen us for liver cancer. So take charge of your health and ask for a liver cancer screen, which includes a semi-annual blood test and an ultrasound.  Hepatitis B-infected Asian men (or of Asian descent) over age 40 years and Asian women over age 50 years, patients with a family history of liver cancer, patients with cirrhosis, and Africans over the age of 20 should all be screened. Think you’re not at risk for cancer because you take antivirals? Think again. Antivirals help reduce liver damage, but if you’ve had cirrhosis or are older, the risk of liver cancer remains.

If someone promises a new cure or treatment that sounds too good to be true….it probably is. In our search to be rid of hepatitis B, we may be tempted to yield to clever marketing and try a supplement that promises to cure us. But first, do your homework and practice precaution. To check out an herbal supplement, visit the National Center for Complementary and Integrative Health’s website to see what scientific evidence exists for a supplement and talk to your doctor. There is no magic bullet that will cure hepatitis B. Experts hope to find one soon, but for now be patient and stay skeptical. If you want to safeguard your health, eat healthy foods and avoid alcohol and cigarettes.

Pregnant with hepatitis B? Get your viral load tested and ask your doctor about antivirals. The American Association for the Study of Liver Disease (AASLD) recommends that pregnant women with viral loads (HBV DNA) higher than 200,000 IU/mL (or 1 million copies/mL) receive an antiviral (either tenofovir or telbivudine). The antivirals won’t hurt you or your baby and will reduce the risk that your baby will be infected with hepatitis B to nearly zero, as long as your baby gets the first dose of the hepatitis B vaccine and a dose of HBIG (hepatitis B antibodies) within 12 hours of birth.

Fight discrimination against hepatitis B and know your rights. Hepatitis B should never be a barrier to the education or job you want. Sadly, ignorance and stigma persist. It depends on us, our friends, and our family, to stand up and fight for our civil rights. We can’t back down. If we don’t fight, who will?

Be brave, disclose, and get your friends, family, and lovers screened for hepatitis B and vaccinated. Yes, it will be one of the hardest conversations you will ever have, but if you are infected with hepatitis B, you need to disclose your infection to people who may be at risk. If you just discovered you have chronic hepatitis B, which you may have contracted at birth, you need to tell your siblings and your mother and get them screened and immunized if needed. Dating someone, and about to take the next step? You need to disclose ahead of time and give them information and choices. It builds trust and it’s the right thing to do. You would want the same for yourself. For more on disclosure click here.

Happy 2017!  Our hope for a cure continues.

As of January 2017, TAF has been approved for hepatitis B treatment in the U.S., Europe and Japan.

How to Navigate Disclosure, Denial and Drinking with Hepatitis B During the Holidays

Image courtesy of stockimages at FreeDigitalPhotos.net
Image courtesy of stockimages at FreeDigitalPhotos.net

By Christine Kukka

With the holidays come  family reunions and parties that can set the stage for some big emotional challenges for people living with hepatitis B.

  • Do we disclose our hepatitis B to our families or keep quiet?
  • Do we remind relatives to get tested and/or treated, or quietly endure their denial?
  • And, can we resist the host who insists everyone should be drinking alcohol with him?

Is this the holiday when we finally tell our parents or siblings about our hepatitis B?

First, take your family’s cultural temperature towards hepatitis B. Historically, in many cultures people with hepatitis B were shunned and could not marry, attend college or advance professionally. If your family still holds some of these baseless beliefs, be prepared to do some educating as you try to dispel their fears and prejudices. Come armed with printed information, website addresses and other material to bolster your family-focused public health campaign.

If you were infected at birth, you may have family members who are also infected. The most valuable gift you may give them is your disclosure and your education, especially if it leads them to get tested, vaccinated and treated.

If you suspect you are the only one in your family who is infected because of a past medical procedures that transmitted the infection, or sexual encounters or injecting drug use, think carefully about disclosing. Are your family members open and accepting? Will they suspend judgement and be supportive? Perhaps you should tell only one or two relatives whom you can trust, or stick to your community of friends. If you have doubts, erring on the side of caution for the time being may be best.

Should you encourage family members to get tested, vaccinated or treated?

If you know hepatitis B runs in your family, then your parents, uncles, aunts and siblings could also be infected. Should you bring up hepatitis B during dinner and encourage them to be treated?

Many people find denial a far more comfortable option than facing the possibility of having hepatitis B, which is why nearly two-thirds of people with chronic hepatitis B remain undiagnosed and untreated. So how do we bring up hepatitis B without sending everyone running from the dinner table?

  • Bring up an interesting fact, “Hey, did you hear that one in 12 Asian-Americans have hepatitis B and two in three don’t know it?”
  • Or ask about a relative’s health history. “I was wondering about grandpa in Vietnam, you said he died from liver problems, do you think it was hepatitis B?”
  • Or try breaking through the stereotypes surrounding hepatitis B. “Everyone thinks you get hepatitis B because you’re promiscuous or do drugs, but actually most Asian-Americans got it at birth.”

Choose a time when there won’t be many distractions. Try talking to a few relatives ahead of time so they are prepared to be supportive when you broach the topic with your family.

Ultimately, we can’t change other people. Our relatives may simply continue to refuse testing and treatment despite our best intentions. We don’t have to let them off the hook completely, but we must accept they are doing the best they can. If we keep our relationships with them open and cordial, they may be willing to talk to us in the future when they are ready to get tested. To view a video of a daughter telling her parents why they should be tested, click here.

How do you politely refuse the host who insists that you drink?

Practice saying no: Often there are people at a party or event who take it as a personal insult if you do not join them and drink alcohol. You need to prepare for their rudeness and be ready to firmly say no. This can take practice, so do some role-playing if needed ahead of time. It gets easier with time.

Prepare a reason for not drinking: Sometimes, those annoying hosts, friends or relatives just won’t give up, so you may have to lie. “Sorry I’m taking medication and I can’t drink.” Or, “My stomach is upset and I want to be able to enjoy all this food.” You never have to disclose your hepatitis B infection in this casual social setting, but you can come up with another reason not to drink.

Leave the event early if you feel uncomfortable. Over the course of a party, people may get more intoxicated and it might get harder to turn down drinks. Consider leaving the party before people reach this stage, besides it’s no fun to be at a party with drunk people when you’re sober anyway.

Find others who are not drinking. Search out people who are not drinking at the event. Those are the people you may want to talk to and enjoy.

Choose a non-alcohol drink: If you’re at a bar or party, no one will know that your seltzer water with a slice of lime is not a gin and tonic. Many bars now serve non-alcoholic beverages so no one will know your drink does not contain alcohol.

The most important thing to do is to not pick up a drink no matter what. One drink all too easily leads to another. Your liver will thank you.

Be Brave: Join a Hepatitis B Clinical Trial and Help Find a Cure

Photo courtesy of CDC.
Photo courtesy of CDC.

By Christine Kukka

One of the bravest things people living with hepatitis B can do is participate in a clinical trial  to help find the drug that will one day eradicate the virus that infects more than 240 million worldwide.

There are medical and financial advantages to participating in a trial. We may gain access to a drug that is more effective than what is currently available. We may get free lab tests and medications, and we know we have helped millions of others in the pursuit of a cure.

For example, if you participate in the Hepatitis B Research Network Adult Cohort Study, which is currently collecting data on how hepatitis B affects in 2,500 people in the U.S. and Canada over a five-year period, you helps scientists better understand this disease while getting free annual liver tests.

There are different types of clinical trials, for example some compare the effectiveness of a new drug against current treatments. When TAF, a new formulation of tenofovir, was in clinical trials, one group of patients received TAF and the other received the standard tenofovir drug. Researchers then compared viral loads (HBV DNA) and liver health from the two groups to see if TAF was as effective as tenofovir in lowering viral load and reducing the risk of liver damage.

Other drug trials compare the effectiveness of a new drug against no treatment. In this double-blind study, a control group receives no treatment (a placebo – or sugar pill) and the other group gets the experimental drug. Researchers don’t know until the end of the study which participants received the experimental drug in order to achieve an objective view of a drug’s effectiveness.

Clinical trials are also used to test the accuracy of new monitoring equipment or approaches, or they can help define what screening practices work best in individual immigrant communities.

Photo by Amanda Mills of CDC.
Photo by Amanda Mills of CDC.

They can also assess the effectiveness of herbal supplements and vitamin D in reducing liver damage or help identify when a pregnant woman should receive antivirals to lower her risk of infecting her newborn.

There are drawbacks to clinical trials that participants need to know. While pharmaceutical companies have spent years developing new drugs and testing them in lab animals before they reach human clinical trials, some drugs will not work.

A recent example of this is the Arrowhead Pharmaceutical’s ARC 520, 521 and AAT drugs, which were in clinical trials on 300 people in 17 countries. Last month, Arrowhead halted the trials after test animals that were receiving much higher doses of the drug died.

And, some trial participants risk getting the placebo instead of the experimental drug. In many of these cases, if the “experimental” drug is successful, those who received the placebo eventually gain access to the new drug. Also, these trials take commitment, including your time, travel and perseverance. But one day, these trials will help find a cure, but it can’t happen without the help of people living with hepatitis B.

How do we find a clinical trial? Most hepatitis B trials are managed by clinical researchers who work at universities, large hospitals or pharmaceutical companies. But you do not have to be a patient at one of these institutes to participate in a trial.

Step 1: Talk to your provider at your clinic, primary care office or liver treatment center and tell them you’re interested in participating in a trial. If you find one you think you’d qualify for, show them the information. Your provider can refer you to a trial even if he or she isn’t participating directly in the trial.

Step 2: Your provider can contact the research center on your behalf, submit an intake form for you, and transfer your patient records after you complete a HIPAA form. Your provider can still continue to care for you even if you join a trial.

Step 3: If you qualify, you may have to travel to the research center at least once. After that, your blood tests and any other lab results can be performed locally and sent to the researchers.

Step 4: Do your research before you participate. Ask questions and make sure you understand how the trial will affect your health. If there’s a chance you’ll get the placebo pill, ask what will happen and if you get access to the drug later on. Make sure you get the information in your primary language and that trial doctors are culturally-sensitive. Trust and knowledge is essential.

Below are some resources to help you. If you need more information, contact the foundation at 215-489-4900 (U.S.) or email info@hepb.org.

Where to find a clinical trial

  • Hepatitis B Foundation’s directory  of hepatitis B-related clinical trials: This resource lists hepatitis B-related clinical trials registered with the U.S. National Institutes of Health. These include hepatitis B-related treatment and liver cancer trials for adults and children in the U.S. and around the world. They also include coinfections, hepatitis D and trials investigating ways to prevent mother-to-children transmission of hepatitis B during childbirth. You can also email the foundation for more information at info@hepb.org.
  • The U.S. National Institutes of Health directory of clinical trials. This is a searchable directory of all NIH-approved clinical trials. You can search by condition and location.
  • Center for Information & Study on Clinical Research Participation: This offers a clinical trial database you can search, and the organization will also help you find clinical trials and email or mail you the information.  Call 877-MED HERO. Allow one to two weeks for response.

To watch a webinar about how to participate in a clinical trial, click here.

Family Getting Together for The Holidays? Time to Talk Hepatitis B and Your Family’s Health History

Image courtesy of Apolonia at FreeDigitalPhotos.net.
Image courtesy of Apolonia at FreeDigitalPhotos.net.

By Christine Kukka

When we have chronic hepatitis B, knowing our family medical history can give us an inside edge to fight this infection.

Hepatitis B is an infection that often runs in families. Knowing how our parents, grandparents and aunts/uncles responded to this liver disease can give us insider information about our own genetic prospects with hepatitis B.

Experts estimate that more than half of us worldwide became infected at birth. Our mothers may have been infected with hepatitis B. Immunization, which can prevent infection if administered within 12 hours of birth, was not available to us as newborns, nor to our mothers or grandmothers.

So if we suspect or know our parents have or had hepatitis B, it’s important to find out if our aunts and uncles or grandparents were also infected and had signs of liver damage. Did anyone get liver cancer or die from liver-related problems? Or, did our relatives live long lives due to strong genes, healthy lifestyle choices, and avoiding smoking and alcohol?

Knowing how our genetic predecessors handled this infection gives clues about:

  • How often we should be screened for liver cancer? We should be screened earlier and more often if we have a family history of cancer.
  • How soon should we start treatment? If our predecessors had liver damage at a young age, perhaps we should start treatment sooner rather than wait and endure long periods of liver damage and high viral loads.
  • How effective are our family’s genes in fighting this infection? Did many family members with hepatitis B have liver damage or cancer, or did they have relatively long and healthy lives?
  • What effect did the hepatitis B virus’ strain or genotype play? Depending on the HBV genotype that infects us, we may have different experiences with hepatitis B. We may we develop the hepatitis B “e” antibody earlier if we have certain HBV genotypes. Knowing our relatives’ health history gives us some insight into this.
  • What effect does gender play? Did women experience liver damage or did it only happen to men? The female hormone estrogen is believed to confer some protection against hepatitis B. It may be that men in your family are at highest risk of liver damage and need more frequent monitoring and earlier treatment.
Image courtesy of jk1991 at FreeDigitalPhotos.net.
Image courtesy of jk1991 at FreeDigitalPhotos.net.

There are other factors besides genes that affect a multi-generational experience of hepatitis B. Did our grandparent who developed liver cancer suffer poor nutrition for extended periods in their country of origin that weakened their immune system? Did the uncle who had cirrhosis also smoke, drink or suffer exposure to chemicals at work? Could a grandparent who died of liver disease eat moldy rice or corn that contained aflatoxin, which severely damages the liver?

Taken together, all of these factors give us clues to medical conditions that may run in our families, and this knowledge isn’t limited to just hepatitis B. By identifying family patterns of medical problems such as diabetes, heart disease, high blood pressure or breast cancers, healthcare providers can determine if we and our children are at increased risk of a particular condition.

Because knowing your family’s health history is such a powerful tool, the Surgeon General created a free website to help everyone create a portrait of their family’s health at My Family Health Portrait.

After completing the questions, the website creates a personalized “family health tree” that can be saved to a home computer. From there, families may update the information any time. The tool can be shared with other family members, who can add their health information to the portrait. It’s also important to share this portrait with your doctor.

The Surgeon General has declared Thanksgiving to be National Family Health History Day. But whenever your family gathers for a holiday, ask about their medical history. It just might save your life.

October is Liver Cancer Awareness Month

Image courtesy of Stuart Miles at FreeDigitalPhotos.net
Image courtesy of Stuart Miles at FreeDigitalPhotos.net

By Christine Kukka

In an era of hepatitis B immunization and improved health care, an alarming trend is happening — liver cancer is increasing and is now the second-leading cause of cancer deaths around the world.

This is why it’s critical that everyone living with hepatitis B should demand to be screened for liver cancer. There are three key reasons why liver cancer rates remain high:

  • Too few people are tested for hepatitis B, which is why two-thirds of Americans living with hepatitis B don’t know they’re infected.
  • Only 20 percent of doctors follow liver cancer screening guidelines and test at-risk hepatitis B patients for liver cancer. By the time liver cancer is diagnosed, it’s often too late for effective treatment.
  • And, screening guidelines themselves are inadequate and fail to use valuable blood tests that help identify liver cancer in its early, treatable stages.

Today, the majority of liver cancer cases occur in developing countries, fueled by undiagnosed and untreated hepatitis B. More than 80 percent of these cancers are found in sub-Saharan Africa and Eastern Asia where more than 20 of every 100,000 people will suffer and die from liver cancer.

But make no mistake, liver cancer happens in North America and Europe too. Because people aren’t effectively screened for hepatitis B and liver cancer, an estimated 10 percent of people with chronic hepatitis B will develop liver cancer in developed countries. Most face a bleak outlook, only 20 percent of people diagnosed with liver cancer survive beyond five years.

But you can beat these odds. In celebration of Liver Cancer Awareness Month, we need to insist that our doctors screen us for liver cancer. When diagnosed early, treatment succeeds and survival improves markedly.

Medical guidelines that recommend when and how we are tested for liver screening vary dramatically around the world, but most of them are inadequate, according to a recent report. The U.S. and European guidelines, for example, recommend an ultrasound of the liver every six months.

But an increasing number of experts, including Hepatitis B Foundation Medical Director Dr. Robert Gish, are promoting the combined use of an ultrasound plus two blood tests — for alpha fetoprotein (AFP) and des-gamma carboxyprothrombin (DCP) — to help identify liver cancer in its early, treatable stages.

Current medical guidelines recommend anyone with cirrhosis (liver scarring) should be screened every six months for liver cancer because 80 percent of people diagnosed with liver cancer also have cirrhosis. The guidelines also state that patients who have a family history of liver cancer, are coinfected with HIV or hepatitis C, or who are young males of African descent should also be tested for cancer at any age.

Many of us don’t have these risk factors, but we are still at risk. Our liver cancer incidence is much lower than if we had cirrhosis, but it’s still there and we need to be tested using the best tools available.

Age is clearly an important factor when it comes to liver cancer, especially if we have had hepatitis B for several decades, but current guidelines only provide age-specific screening recommendations in people of Asian ethnicity (men over age 40 and women over age 50).

As doctors debate whether these guidelines should be changed to promote earlier or more frequent screening, here are some questions to review with your doctor to determine if you should be screened for liver cancer:

How many years have you had hepatitis B? The longer you’re infected, the higher your risk of liver cancer. Men of African descent are found to develop liver cancer at an earlier age than other races and should be screened starting in their 20s.

What is your gender? Men are considered at higher risk of liver cancer at an earlier age because they may be more likely to smoke, drink alcohol, have more “active” hepatitis, and higher iron stores—all of which increase cancer risk. Estrogen is believed to protect pre-menopausal women against liver cancer.

Have you had a high viral load (HBV DNA) after age 30? Having a viral load exceeding 2,000 international units per milliliter (IU/mL) is associated with a higher risk of liver cancer even if you have no other signs of liver damage.

Do you have a family history of liver cancer? If an immediate family member has had liver cancer, this greatly increases your risk.

Are you overweight, or have you been diagnosed recently with type 2 diabetes? A fatty liver and/or diabetes increase your risk of liver damage and cancer dramatically when you’re also infected with hepatitis B.

Do you have hepatitis B virus genotype C or core/precore viral mutations? Originating in Asia, this hepatitis B strain is associated with loss of the hepatitis B e antigen (HBeAg) later in life. That means you may have had a high viral load and liver damage for a longer period than people with genotypes who clear HBeAg at a younger age. Having core or precore mutations in your HBV also increase liver cancer risk.

Talk to your doctor, even if you haven’t had liver damage and have had a low viral load or undetectable viral load for many years, ask if it’s time for a liver cancer test. For more information about liver cancer visit the Liver Cancer Connect website and for more information about screening for liver cancer, click here.

On Tuesday, Oct. 25, representatives from Hep B United, CDC’s Division of Viral Hepatitis, and the National Alliance of State and Territorial Aids Directors (NASTAD)  will be co-hosting a twitter chat at 2 p.m. EST using the hashtag #liverchat.

You’ve Lost the Hepatitis B Surface Antigen, Go Celebrate, But Keep Monitoring

By Christine Kukka

Image courtesy of stockimages at FreeDigitalPhotos.net
Image courtesy of stockimages at FreeDigitalPhotos.net

After years of living with “inactive’ chronic hepatitis B—with low viral load and no signs of liver damage–some patients may finally lose the hepatitis B surface antigen (HBsAg) and even develop surface antibodies.

This event merits a celebration and a huge sigh of relief, but if you think you will never have to get another blood draw or worry about your liver, think again. We hate to be the bearer of bad news, but hepatitis B really never goes away.

Image courtesy of stockimages at FreeDigitalPhotos.net
Image courtesy of stockimages at FreeDigitalPhotos.net

Think herpes, mono, or chicken pox and shingles. Children infected with chickenpox get rid of the infection and the ugly blisters, but very small amounts of the chickenpox (varicella) virus remains in the spinal nerves. As we grow older and our immune systems weaken with age,  our bodies aren’t able to suppress the varicella virus any more and it reactivates, causing painful shingles.

The hepatitis B virus (HBV) behaves in the same way. When we lose HBsAg and even develop surface antibodies (anti-HBs), there are still HBV lurking in our livers. When we’re healthy, our immune systems suppress the virus and prevent any reactivation, but old age or another disease or medical condition can weaken our bodies and allow the viral infection to reactivate.

So, even after we clear HBsAg, we need to stay vigilant and continue to get our liver health monitored regularly. Here is what you need to know:

First, what are my chances of ever getting rid of HBsAg and developing the surface antibody? It can happen, especially in older adults after a long period of “inactive” hepatitis B infection.

About 1 to 3 percent of people with chronic hepatitis B lose HBsAg each year, and about half of all people with chronic infections who live up to age 75 will lose HBsAg, depending on the amount of HBV DNA in their blood.

Your chances of losing HBsAg and developing the surface antibody increase if you have a healthy lifestyle and avoid alcohol, cigarettes and obesity (fatty liver). Another report found that people with the hepatitis B strain or genotype C have higher rates of clearing HBsAg over time than those with genotype B.

Image courtesy of taoty at FreeDigitalPhotos.net
Image courtesy of taoty at FreeDigitalPhotos.net

Once you clear HBsAg, the chance of developing surface antibodies over the next two, five and 10 years are 24 percent, 58 percent and 78 percent respectively, according to a recent report in the September 2016 journal of Epidemiology and Infection.

After I clear HBsAg, how often do I need to get my liver health monitored? According to Dr. Robert Gish, medical director of the Hepatitis B Foundation and professor consultant of gastroenterology and hepatology at Stanford University, once you have cleared HBsAg, 12 months later you need to:

  • Check all of your liver enzymes and liver function
  • Get your platelet count and hepatitis B blood tests done, and
  • Have an ultrasound of your liver and spleen.

These tests become your new “baseline” that your doctor can refer too in the years ahead while monitoring your liver health.

Your baseline ultrasound should examine your liver and measure its portal vein (it should be under 12 mm) and spleen (it should be under 12 cm) to make sure it’s normal with no signs of cirrhosis or portal hypertension.

If you had cirrhosis before you cleared HBsAg: You need to be surveyed for liver cancer (with an ultrasound, alpha fetoprotein (AFP) blood test and a Des-gamma-carboxy prothrombin (DCP) test) every six months for at least five years, because cirrhosis puts you at high risk of liver cancer. Once an ultrasound finds no evidence of cirrhosis and all other tests are normal, including the cancer tests, then the testing can become less frequent and your doctor can prescribe a new monitoring schedule.

If you’ve had elevated liver enzymes (called ALT or SGPT) in the past, (higher than 19 in women and 30 in men), you need to continue to get tested every six months until you’ve had two consecutive healthy ALT readings. If your ALT remains elevated, make sure you are not drinking alcohol and do not have fatty liver disease. Talk to your doctor about a new monitoring schedule.

Tell all of your current and future doctors you’ve had hepatitis B, and beware of immune-suppressing drugs used to treat various cancers and rheumatoid arthritis. Our immune systems, which are working to keep the residual HBV in our bodies in check, can also take a hit from medications that deliberately suppress our immune systems in order to fight cancer, psoriasis or rheumatoid arthritis.

According to medical guidelines, all oncologists and other specialists who use these powerful drugs are supposed to test all  their patients for hepatitis B and carefully monitor anyone who had hepatitis B in the past, which is indicated by a positive test for the hepatitis B core antibody (anti-HBc).

Even if you’ve cleared HBsAg, doctors may pre-emptively treat you with antivirals during and after your treatment for cancer, immune disorders such as arthritis or psoriasis, and hepatitis C and monitor your HBsAg and viral load regularly to make sure your hepatitis B does not reactivate.

These screening guidelines exist, but no one is perfect and your oncologist may not know you’ve been infected, may forget to screen you for hepatitis B, or may not understand the testing. So, tell everyone if you have an active or resolved hepatitis B infection. The last thing you want is to be battling both cancer and a reactivated hepatitis B infection simultaneously.

While hepatitis B never really goes away, once you clear HBsAg your risk of liver damage and liver cancer diminish tremendously. It’s worth a celebration, but you need to continue to be monitored as you age.

How Much Do You Really Know About Sex and Hepatitis B? Take This Quiz and Find Out

Image courtesy of Vichaya Kiatying-Angsulee at FreeDigitalPhotos.net.
Image courtesy of Vichaya Kiatying-Angsulee at FreeDigitalPhotos.net.

By Christine Kukka

It’s Sexual Health Awareness month and a great time to test your knowledge about how hepatitis B is — and isn’t — spread sexually.

We know hepatitis B is easily transmitted through sex. It’s a resilient virus, can live for up to a week on a dry surface and it’s 50- to 100-times more infectious than HIV.  In fact, sexual contact is the most common way hepatitis B is spread in the United States. So let’s see how much you know:

I’m in my 20s and can safely assume everyone has been vaccinated against hepatitis B, so I don’t have to disclose my infection.   True or False?

False. New hepatitis B cases have indeed been steadily declining since the vaccine was introduced in the 1980s, but not everyone has been vaccinated. Here’s proof. As a result of the heroin epidemic sweeping through rural America, new hepatitis B infections have risen for the first time in decades among 20- and 30-year-olds who were not lucky enough to be immunized during childhood.

Oral sex doesn’t transmit hepatitis B.   True or False?

It’s complicated. There are no confirmed reports of hepatitis B infection resulting from oral sex, but there’s still a risk for infection. If you have a high viral load (HBV DNA), you may still be putting partners at risk of infection if they have bleeding gums, mouth sores, or anything that increases the likelihood of infectious fluids entering their bodies. Bottom line, oral sex has a lower risk of spreading hepatitis B than other sexual practices, but some risk remains. And don’t forget, other sexually-transmitted infections such as  chlamydia, gonorrhea and syphilis are spread through oral sex. Using a condom or dental dam reduces infection risk.

Image courtesy of photostock at FreeDigitalPhotos.net.
Image courtesy of photostock at FreeDigitalPhotos.net.

An uninfected woman is at higher risk of catching hepatitis B from an infected male partner, than an uninfected man who has sex with an infected woman.   True or False?

True.  It’s not gender but sexual activity that usually defines the infection risk, but in this case an  uninfected woman is at very high risk of infection if she has unprotected sex and is on the receiving end of hepatitis B-infected semen.

I’m positive for the hepatitis B surface antigen (HBsAg), but my viral load is undetectable. I don’t have to worry about disclosing or spreading hepatitis B.    True or False?

False.  As long as you test positive for the surface antigen, you still have the hepatitis B virus in your blood and body fluids. Yes, the risk is lower because you’re HBV DNA-undetectable, but you still need to practice safe sex and disclose your hepatitis B to your prospective sexual partners.

Anal sex is more effective at transmitting hepatitis B than vaginal sex.   True or False?

True.  Any sexual activity that might cause abrasions, cuts, or other trauma is especially risky. To minimize risk, experts recommend use of a condom.

Kissing can transmit hepatitis B.    True or False?

False. Spreading hepatitis B through kissing is highly unlikely, however, deep kissing that involves the exchange of large amounts of saliva might result in infection if there are cuts or abrasions in the mouth of the infected person, especially if they have a high viral load.

Blood has more hepatitis B virus in it than semen or vaginal fluids.  True or False?

True.  Blood has the highest volume of virus. Semen and vaginal fluids have intermediate levels, and urine and feces have the lowest level.

 

Hepatitis B Foundation: Answering Questions and Dispelling Fears One Call or Email at a Time

Maureen Kamischke, Hepatitis B Foundation's social media and outreach manager.
Maureen Kamischke, Hepatitis B Foundation’s social media and outreach manager.

Hepatitis B is a complex infection, it can impact our health, lifestyle choices and threaten relationships. Sometimes, we need to ask for help.

One of the most personal and valuable services the Hepatitis B Foundation provides is answering individuals’ emails and phone calls about hepatitis B. These queries, which can come from all over the world, often involve discrimination, disclosure and how to interpret lab tests that baffle inexperienced doctors and nurses.

One of the people at the foundation who answers these emails and calls is Maureen Kamischke, the foundation’s social media and outreach manager. Kamischke, whose daughter had hepatitis B, knows first-hand the difficulty of finding healthcare providers with expertise in hepatitis B treatment. She has grappled with decisions about disclosing her child’s infection at school and to friends. Today, she continues to advise her daughter (now an adult) about her liver health, and she also answers the dozens of emails and calls that reach the foundation each week.

Maureen Kamischke's daughter Maren.
Maureen Kamischke’s daughter Maren.

Today, guided by decades of personal and professional hepatitis B experience, Kamischke helps others navigate the challenging world of hepatitis B. “My goals are to disseminate accurate information, provide hope and information that will empower people living with hepatitis B to make simple lifestyle changes that will help them feel like they have some control over their lives,” she explained. “I understand that the disease will shape them, but I want them to understand it should not define or limit them. “ Continue reading "Hepatitis B Foundation: Answering Questions and Dispelling Fears One Call or Email at a Time"

Do You Forget Your Daily Hepatitis B Antiviral? Why We “Forget” Our Meds, and How to Improve Compliance

Image courtesy of foto76 at FreeDigitalPhotos.net
Image courtesy of foto76 at FreeDigitalPhotos.net

By Christine Kukka

Your daily antiviral pill can save your life when you have liver damage from chronic hepatitis B. Entecavir or tenofovir (Viread) quickly reduce the amount of virus in your liver and the damage it causes.

All you have to do is take it. Every day. But 20 to 30 percent of prescriptions are never filled, and about 50 to 70 percent of us don’t take our medications as prescribed. When we stop taking our daily antiviral, hepatitis B can reactivate and threaten our health.

In one study, researchers provided 100 hepatitis B patients with an entecavir pill dispenser that monitored whether or not they took their daily pill over a 16-week period. They found about 70 percent of patients took their antiviral pill as prescribed more than 80 percent of the time — which means these patients were “medication compliant.”

Those who missed taking their antivirals more than 20 percent of the time–and were “noncompliant”–tended to be younger and had indifferent attitudes about whether or not the antiviral was really needed or would work.

Image courtesy of Carlos Porto at FreeDigitalPhotos.net
Image courtesy of Carlos Porto at FreeDigitalPhotos.net

According to experts, whether we are “medication compliant” or not depends on how much trust we have in our doctors. If we like our healthcare provider and feel comfortable asking questions, we’re much more likely to take our medication on time. And, if our friends and family support and encourage us, we’re even more inclined to take our medication as prescribed.

“The trust I have in my doctor is a big factor,” said a member of the Hepatitis B Support List. “It is important to find a doctor who understands hepatitis B and is willing to work with me in terms of explaining what the options are and what the best approach is in managing my condition.”

“I know antivirals won’t cure me,” another email list member wrote, “but I’m committed to staying healthy and productive as long as God permits.” Continue reading "Do You Forget Your Daily Hepatitis B Antiviral? Why We “Forget” Our Meds, and How to Improve Compliance"

Aflatoxin Alert: Moldy Nuts and Corn Increases Your Liver Cancer Risk 60-Times If You Have Hepatitis B

Image courtesy of YaiSirichai at FreeDigitalPhotos.net
Image courtesy of YaiSirichai at FreeDigitalPhotos.net

By Christine Kukka

One of the biggest health threats to people living with chronic hepatitis B is a toxic, nearly invisible mold called aflatoxin found in corn, peanuts, peanut butter, almonds, Brazil nuts, walnuts and pistachios.

People with hepatitis B who eat food with high levels of aflatoxins face a liver cancer risk that is 60-times above average.

In addition to nuts and grains like quinoa, aflatoxin can be found in figs, milk and cheese, soybeans, dried spices and cottonseed. It is less common in rice, as long as rice is hulled, which removes aflatoxin mold. Continue reading "Aflatoxin Alert: Moldy Nuts and Corn Increases Your Liver Cancer Risk 60-Times If You Have Hepatitis B"