Hep B Blog

Category Archives: Living with Hepatitis B

How to Find a Liver Specialist Who Really Knows Hepatitis B

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

By Christine Kukka

If you have chronic hepatitis B or are newly-diagnosed, it’s important to see a liver specialist who has experience with hepatitis B.

Having a specialist with hepatitis B expertise on your team not only safeguards your health, it also lessens the stress of having a chronic liver disease. “My specialist gave me all the possible scenarios, but most importantly, he gave me my life back,” one hepatitis B patient recalled.

When first diagnosed, it’s often a primary health provider (PCP) or for children a pediatrician who gets the test results and calls to break the news. Doctors may run additional blood tests and/or immediately refer you to a liver specialist. They may recommend a specialist who accepts your insurance or practices in the same healthcare system, but you may have to do some research to find the best specialist to treat your hepatitis B.

There are two types of specialists who treat liver diseases:

  • A gastroenterologist is an internist who has trained in digestive disorders including the liver, but how much liver expertise a gastroenterologist (GI doctor) has varies based on their training. It’s important to find out if they specialize in liver diseases.
  • A hepatologist is a physician who specializes in the liver. This doctor has the most expertise and should be up-to-date about new treatments and clinical trials. But not all hepatologists have treated hepatitis B. Many will have treated hepatitis C, but not hepatitis B, so you need to ask.

Tips for finding a specialist:

  • Are they in the Hepatitis B Foundation directory? The foundation has a Physician Directory of liver specialists who treat hepatitis B around the world. These doctors have voluntarily signed up  for the database. It is not an exhaustive list, there may be hepatitis B specialists in your area who have not yet joined the directory.
  • Call the practice ahead of time and ask questions. How many hepatitis B patients have they treated? Do they participate in any clinical trials?  Are they aware of current monitoring and treatment guidelines for hepatitis B?
  • What’s the doctor’s reputation? Does anyone in your community see a liver specialist for viral hepatitis? Whom do they recommend?
  • Will you actually see the specialist or an assistant? Do you see a specialist only if there is a need for treatment? If you go to a teaching hospital, do you see the doctor or an intern, fellow or resident?

You are entering into a long-term relationship with someone who may care for you for many years. You need their expertise, but you also need to feel comfortable working with them. Do they listen when you speak and make eye contact? Trust and rapport are very critical.

“It’s really important that they don’t judge me,” one hepatitis B patient explained.  Another patient said that finding a doctor who spoke his language, or had an assistant who was fluent in his language, helped immensely.

Once you identify a specialist, here are some questions to ask:

  • Is the specialist accepting new patients? How long do you have to wait to get an appointment?
  • What hospital or lab do they use, and are they convenient for you? It’s important for you to always use the same lab so you have consistent results that allow apples-to-apples comparisons.
  • Will the doctor call you with the results or will a nurse or other assistant communicate with you?
  • What would you like your care plan to be? Will you go for blood tests and then see the specialist? Typically, hepatitis B patients get blood tests once or twice a year to monitor their liver, unless they are undergoing treatment.

How to design a long-distance care plan if the specialist is far away:  Sometimes, the best hepatitis B specialist is a few hours-drive from where you live, but distance doesn’t have to be a deal breaker. Many people see a specialist for a first visit, and afterwards simply have their PCPs or local labs email lab results to the specialist. For this remote healthcare relationship to work, your PCP needs to be willing to partner with the specialist. Also, your specialist needs to be open to telephone consultations with you as needed.

Technology matters. Sharing medical records and lab tests electronically make a remote relationship work smoothly. If there are firewalls between practices, find out how to ensure your PCP and specialist share your medical records. Be prepared, you may have to be the conduit if the two healthcare systems don’t talk to each other.

Insurance and cost: Ideally, the hepatitis B specialist closest to you accepts your insurance or is in your provider network. That doesn’t always happen so finding out the charges in advance is important.

  • Will the specialist bill your insurance or will you need to pay the fee upfront and manage the insurance reimbursement yourself?
  • How much do you have to pay out-of-pocket if the specialist is outside your network, or if you are not insured? Some specialists charge a lower fee to uninsured patients. You may be able to have an annual consultation with a specialist and bring your lab results.

One hepatitis B patient reported he was not entirely happy with the specialist his PCP referred him to. “At the time, I had great insurance so all the tests he ordered weren’t a lot of money out-of-pocket,” he said. “But then I changed jobs and I couldn’t afford all of his tests, and he wanted me to go on treatment though my lab reports didn’t justify it.

“I went looking for a new one and found one in the Hepatitis B Foundation’s website,” he said. “I had to drive farther to see him, but his knowledge and patience were very comforting and he spoke my primary language. He really helped me regain confidence in life. ”

Prepare for your visit: Before you see the specialist, put together a list of questions (see sample questions) and have your lab reports available — either bring hard copies or call ahead of time to make sure the doctor has access to your latest labs and medical records.

After you meet with your specialist, take some time to reflect. Are you happy with the doctor? Did he or she communicate well? Are you clear about what you need to do in the weeks and months ahead to take charge of your health? If the answer is yes, congratulations, you have assembled a good healthcare team.

Iron Overload Affects More Than the Irish, People with Hepatitis B-Related Liver Damage Need to Be Tested

Image courtesy of zole4 at FreeDigitalPhotos.net.
Image courtesy of zole4 at FreeDigitalPhotos.net.

By Christine Kukka

Iron is crucial to our health, but too much iron – called iron overload – can put us at risk of liver damage and other health problems, especially if we have hepatitis B-related liver disease and/or we’re Irish.

Irish and hepatitis B are not normally two words you hear in the same sentence, but both populations may need to be careful about how much iron they eat.

  • A liver inflamed or damaged by a chronic hepatitis B infection or other causes doesn’t process or store liver effectively and the excess iron accelerates liver damage and causes a host of other medical problems.
  • If you’re Irish or of northern European ancestry, one in eight of you have a genetic predisposition for hereditary hemochromatosis (HH) – commonly called the Celtic Curse — that occurs when the body doesn’t process or store iron properly, leading to a four-fold increase in iron absorption.
  • If you’re Irish and have chronic hepatitis B, you may want to celebrate St. Patrick’s Day with a trip to your doctor for a simple blood test for ferritin (iron) and transferrin saturation. If they’re elevated, your doctor may order a gene test to see if you have HH.

The relationship between iron overload and hepatitis B has been problematic, or as researchers like to say, “not well defined.”

Our liver is the body’s major storage organ for iron. About one-third of the iron we consume is stored in liver cells, which play a major role in recycling iron and synthesizing transferrin (the main transporting protein) and ferritin (the major storage protein) from iron.

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

When our livers are damaged or inflamed from hepatitis B, the Celtic Curse, fatty liver or alcohol, they don’t synthesize iron well, leading to excessive iron deposits in the liver which leads to more liver damage, including inflammation, fibrosis and even liver cancer.  In some hepatitis C patients, iron overload was found to reduce the effectiveness of antiviral treatment in some patients.

Researchers often found elevated iron levels in hepatitis B patients and suspected chronic hepatitis B could lead to iron overload. Recently, new research has discovered it’s the inflammation or liver damage from hepatitis B that causes iron problems. People with “inactive” hepatitis B with no signs of liver damage usually do not experience iron overload.

“Our data clearly indicate that hepatitis B-related liver injury, but not direct chronic hepatitis B infection, is likely responsible for the changes in the serum iron markers,” researchers concluded in a report on this topic published in the European Journal of Gastroenterology & Hepatology.

Hepatitis B Foundation Medical Director Robert Gish believes that iron overload is a “non-issue” for hepatitis B patients. However, he does have his patients get a transferrin saturation test. (A score of 20 percent indicates iron deficiency while a score exceeding 50 percent suggests iron overload.)

Many foods in our diet are rich in iron, including iron-fortified cereals, breads and pastas and meat including beef, pork, poultry and seafood.

According to experts, unless we have severe liver damage (often indicated by elevated liver enzymes (ALT/SGPT) or an ultrasound), we don’t need to restrict our consumption of foods rich in iron.

But if we do have liver damage and/or are Irish, it might be worth a conversation with our doctor. When we have excess iron, it is usually not detected by a complete blood count (CBC), hemoglobin, or hematocrit, test, it requires the transferrin saturation test.

Symptoms to watch for include fatigue, joint pain, abdominal pain, irregular heartbeat, skin color changes, irregular menstrual cycles, loss of libido and impotence, bone density changes, depression, anxiety, muscle pain, brain fog, chronic diarrhea, diabetes, liver damage and headaches.

For more information on HH, visit the website of the American Hemochromatosis Society.

Struggling with Depression and Hepatitis B? You’re Not Alone

Image courtesy of Tuomas_Lehtinen at FreeDigitalPhotos.net.
Image courtesy of Tuomas_Lehtinen at FreeDigitalPhotos.net.

By Christine Kukka

Studies show people with chronic hepatitis B have higher rates of depression and anxiety than the general population, which should surprise no one.

There’s no cure, people with hepatitis B face stigma and discrimination, and when we disclose, we risk rejection or friends think we’ve done drugs or slept around. And, if we are people of color, we’re already viewed as outsiders or different already; a medical diagnosis just adds to our feeling of alienation.

Sometimes, we need help. We need to be reminded once again that hepatitis B is nothing to be ashamed of, that millions of people around the world are infected not because they did anything wrong, but because it’s not a perfect world and not everyone had access to the hepatitis B vaccine at birth or sterile medical equipment or is able to practice safe sex 100 percent of the time.

Some symptoms of depression include feeling sad, down, or just emotionally flat or apathetic. We may feel tired, irritable, or experience mood swings and find we are unable to concentrate. If we’re taking antivirals, we may frequently forget to take our meds. We might also lose our appetite, sleep too much or too little, and fantasize about harming ourselves or even suicide.

Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net
Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net

It’s time to get some help. Medical guidelines usually recommend a combination of “talk” therapy and antidepressant medication. Talking to a therapist, especially if you’ve always kept your hepatitis B a secret, can help you get a better handle on your infection. It can be liberating to have another person challenge your cataclysmic view of life, especially if you’re you’ll never find love or happiness.

It’s also good to join a support group or an email list to confirm that you’re not the only one in the world with hepatitis B.

The other treatment for depression are antidepressant pills, taken daily. Antidepressants take a while to build up in your system so you usually have to take them for a few weeks before you feel better.

Are antidepressants safe if you have hepatitis B?

Antidepressants generally do not harm the liver, unless you have severe, pre-existing liver damage (such as cirrhosis), are older, or are taking several medications at once.

According to research, about 0.5 percent to 3 percent of those taking antidepressants may develop very mild elevation in their liver enzymes (called ALT or SGPT), which indicate mild liver damage. Unless you already have severe liver damage, experts see no threat from antidepressants, but if there is concern, your doctor should monitor your ALT/SGPT levels more frequently than usual during your first weeks of antidepressant treatment, especially if your ALT/SGPT level is already elevated.

“I would say antidepressant shouldn’t be used if there’s been liver failure,” said Hepatitis B Foundation Medical Director Robert Gish. “If there’s just cirrhosis and you have normal liver function (normal ALT/SGPT) antidepressant still should be fine. The only one not to use is Cymbalta (duloxetine). “

The antidepressants that may cause the highest risk of moderate liver damage,  include monoamine oxidase (MAO) inhibitors, tricyclic/tetracyclic antidepressants, nefazodone, bupropion (Wellbutrin, also used for ADD and smoking cessation), duloxetine and agomelatine.

Drugs with lower risk of causing liver damage include citalopram, escitalopram, paroxetine (Paxil) and fluvoxamine.

Among the most common antidepressants used today is fluoxetine (Prozac).  According to the National Institutes of Health LiverTox report,  in people with no pre-existing liver infections or damage, “Liver test abnormalities have been reported to occur rarely in patients on fluoxetine (less than 1 percent), and elevations (in ALT/SGPT) are usually modest and usually do not require dose modification or discontinuation.”

In addition to seeking treatment and therapy, below are some other ways to relieve stress and improve your sense of well-being.

  • Join a support group.
  • Ask friends of family for help.
  • Don’t isolate yourself.
  • Replace negative thoughts with positive ones, even if you don’t believe it at the beginning. Talk it until you can walk it.
  • Join a yoga, meditation or stress management class.
  • Get out in the sunlight and exercise more, even if it’s taking a short walk. Find something you find joy in.
  • Eat healthy foods, exercise regularly.
  • Get at least eight hours of sleep each night, and talk to your healthcare provider if you have problems sleeping.
  • Avoid alcohol (which is a depressant) and other self-medication.

 

March 1 Is Zero Discrimination Day: Ending Hepatitis B Stigma Starts with Us

2017-zero-discrimination-day_en.pdfBy Christine Kukka

Around the world, millions of people with chronic hepatitis B face wrenching discrimination that limits their dreams, education, careers, income and personal relationships. Here are examples:

  • A Vietnamese woman working in a hotel in Dubai is found to have hepatitis B and is fired, isolated, deported and given a life-time ban on re-entering the country.
  • A young person from the Philippines, aspiring to increase her income to support her impoverished family, is hired to work in Saipan, but her work visa is suddenly cancelled by the employment agency when it discovers she has hepatitis B.
  • A young man from the state of Washington, who worked hard in high school to get into the Naval Academy, is summarily dismissed within days of his arrival when it’s discovered he has hepatitis B. The U.S. military continues to bar people with hepatitis B from serving.

All of this discrimination is unethical, unnecessary and a violation of human rights. Hepatitis B is simply not transmitted through casual contact. The stigma that persists is based on ignorance and it impacts millions around the world daily. This is why we need to recognize Zero Discrimination Day on Wednesday, March 1.

Image courtesy of cooldesign at FreeDigitalPhotos.net.
Image courtesy of cooldesign at FreeDigitalPhotos.net.

This day, designated by the United Nations, highlights the negative impact of discrimination and promotes tolerance, compassion and peace. Many hepatitis activist organizations, including the Hepatitis B Foundation, is using this celebration to draw attention to global hepatitis B discrimination.

In the U.S., some progress has been made to eradicate the unequal treatment of people affected by chronic hepatitis B infection. In 2012, prompted in part by complaints filed by the foundation, CDC issued new regulations that clarified that hepatitis B should not, “disqualify infected persons from the practice or study of surgery, dentistry, medicine, or allied health fields.” These recommendations and a U.S. Department of Justice letter warned medical, nursing, dental schools that they could not exclude applicants and students with hepatitis B, concluding, “… for most chronically HBV-infected providers and students who conform to current standards for infection control, HBV infection status alone does not require any curtailing of their practices or supervised learning experiences.”

However, today people with hepatitis B can’t even get jobs as hotel maids in many countries in the Middle East and Asia. Fear and ignorance, and reluctance by government officials to outlaw these discriminatory practices, have allowed these rules that diminish basic human rights to continue. The young woman who was exiled from Dubai, wrote of her experience:

“When I was 21, I had my internship in Dubai and needed to undergo a blood test. I was not aware of the rules in that country so when I was tested positive, the hotel that I worked for isolated me. I was going through a very hard time because I was completely alone in a foreign country. My work visa was canceled, they brought me to a place that looked like a jail, they took my iris scan, and I was deported along with a lifetime ban, which means I can never come back to that country again. That was the most horrible memory in my life. I am still scared every time I think about it. Sometimes I cannot sleep at night, I keep blaming, cursing myself for having this kind of virus inside my body.”

Image courtesy of meepoohfoto at FreeDigitalPhotos.net,
Image courtesy of meepoohfoto at FreeDigitalPhotos.net,

No one is to blame for hepatitis B, including the millions who were infected at birth or from unsafe and contaminated syringes and medical devices. There is a safe and effective vaccine that prevents hepatitis B today. When people are protected, there is no reason to fear that healthcare workers or hotel maids will spread this infection.

It is morally reprehensible that given the tools and knowledge we have that this discrimination should continue today.

Every day is zero discrimination day, and ending discrimination starts with us working individually in any way we can in our communities to end this stigma.

Make the NOhep:NOexcuse pledge and take simple actions to help eliminate viral hepatitis. It only takes a minute to pledge your support! 

The United Nations first celebrated Zero Discrimination Day on March 1, 2014, after UNAIDS, a UN program on human immunodeficiency virus (HIV) and Acquired Immune Deficiency Syndrome (AIDS), launched its Zero Discrimination Campaign on World AIDS Day.

Valentine’s Day Advice for Those Looking for Love While Living with Hepatitis B

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

By Christine Kukka

Valentine’s Day celebrates love and romance, but when you have hepatitis B, you may fear dating could lead to rejection and heartbreak.

Alright, so you had a few unhappy dating experiences because of hepatitis B … believe me, you’re better off without those people. If hepatitis B hadn’t ended the relationship, it would have been some other issue.

Here are two pieces of valuable advice for those looking for love while living with hepatitis B.

A leader of the Hepatitis B Information and Support email list recently offered this sage counsel to members who feared they would never date, marry or have children because of their hepatitis B.

“As the list mom and a divorced woman who has been dating for the last eight years, I have personal experience with this topic. I have to remind you, having chronic hepatitis B does NOT have to create a barrier to dating. If anything, it can help you determine who is a good partner and will possibly be there for you in the long-term.

Image courtesy of Graphics Mouse at FreeDigitalPhotos.net.
Image courtesy of Graphics Mouse at FreeDigitalPhotos.net.

“Also, and this is the biggie, there is a VACCINE for hepatitis B. If you meet someone you want to have an intimate relationship with, they can be vaccinated (some already are!)

“There is no reason to feel as if you are inferior or less deserving of love because of your hepatitis B.  We all want and need acceptance. The only barrier is what you have built in your mind.

“Personally, I have been in three long-term relationships since my divorce.  I am currently in a loving relationship with a man who cares about me deeply and has no issues with my hepatitis B.

“A word of wisdom from a friend has stuck with me. If someone loves you, they will care about YOUR heath, and make room for ways to keep you in their life.

“Don’t wall yourself off from the experiences of meeting new people and potential love and partnership with another soul.  Life is too short to be afraid of getting hurt.  You ‘will’ get hurt, and you WILL get back up to live another day and love again. The risk of rejection is worth the reward.

Disclose, before it’s too late.

When you disclose your hepatitis B status before sex – even if it’s safe sex with a condom – we don’t jeopardize our partner’s health or their trust in us. Talking about hepatitis B helps reduce the stigma surrounding this infection and may even prompt the person to get vaccinated.

So how do we tell a potential partner that we have hepatitis B? Calmly and carefully. Here is one way to initiate disclosure: “Before we become intimate, we need to talk about STIs and contraception. The reason I’m bringing this up is that I have hepatitis B. You need to know that, and we need to decide how to protect ourselves… ”

Do some research. Having a thorough understanding about hepatitis B can make it easier for you to explain it to a potential partner. The more you know, the less you fear, and the more comfortable you will be in dispelling their fears and conveying a sense of truth and integrity.

Image courtesy of radnatt at FreeDigitalPhotos.net.
Image courtesy of radnatt at FreeDigitalPhotos.net.

Here are some tips from the American Sexual Health Association for disclosing a sexually-transmitted infection.

  1.  Pick a time when both of you will be in reasonably good moods and relaxed for this conversation. Choose a place with few, if any, distractions.
  2.  Start out on a positive note (“I’m really happy with our relationship…”). This will put them in a positive mindset, and they may respond more agreeably than if you start out saying something like, “I have some really, really bad news… “
  3.  Your delivery can influence their reaction to what you say. If you talk calmly about hepatitis B, they may respond similarly. If you act like it’s the end of the world, they might agree that it is.
  4.  Allow a conversation to take place, rather than doing all of the talking yourself.

Disclosure is the right and ethical thing to do. How they respond is out of your control, but their response might just surprise you.

If Hepatitis B Is Sexually Transmitted, How Come My Partner Isn’t Infected?

Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net.
Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net.

By Christine Kukka

I thought hepatitis B was sexually transmitted? I just tested positive, but my partner tested negative, we’ve been together for years, what gives?

This question is a common one. Hepatitis B is indeed easily transmitted sexually, so why do some people — who were not vaccinated — never get hepatitis B from their sexual partners?

It comes down to variables, such as the type of sexual activity you engage in, the viral load (HBV DNA) of the infected partner, and who is on the receiving end of infectious body fluids, especially blood that contains the most virus and semen.

Having one partner infected, and other not, can add more stress to an already traumatic hepatitis B diagnosis. “It was very confusing and made me question how was it possible I was the only one infected,” said a woman who tested positive while her husband tested negative.  “I thought it was possibly a mistake, maybe I was a biological anomaly, which of course I was not.”

Let’s look at the factors that affect who gets infected and who doesn’t when two people have sex.

Viral load: Semen, vaginal fluids and blood all contain the hepatitis B virus (HBV), and the higher the viral load, the more infectious one’s blood and body fluids are. However, having an undetectable viral load doesn’t mean you won’t infected someone during unsafe sex. Even if a man has an undetectable viral load, studies show his semen still contains some HBV and can spread infection, though the risk is lower.

So the rule here is if a man tests positive for the hepatitis B surface antigen (HBsAg), he must consider himself infectious.

The role of gender: In heterosexual relationships, uninfected women are at higher risk of getting infected by a male partner infected with hepatitis B, than the reverse. Women are on the receiving end of semen, which greatly increases their risk of becoming infected unless a condom is used.

Image courtesy of renjith krishnan at FreeDigitalPhotos.net.
Image courtesy of renjith krishnan at FreeDigitalPhotos.net.

When a woman is infected with hepatitis B, an uninfected man is at risk through direct contact with her vaginal secretions, but that contact is lower-risk than a woman’s direct exposure to infectious semen during intercourse.

However, an infected woman who is menstruating is more likely to spread hepatitis B because blood can contain higher levels of HBV than vaginal secretions. That is why gloves and dental dams are recommended to provide a barrier against exposure.

The type of sexual activity: Certain sexual activities are far more efficient at spreading hepatitis B than others. Oral sex appears to have a lower rate of hepatitis B transmission than vaginal sex. Anal sex carries a very high risk of transmission because of tears in the skin that can occur during penetration improves transmission of HBV.

Fingering carries a lesser risk, unless the infected woman is menstruating or a person has bruises or cuts on their hands that allow entry to hepatitis B in semen or vaginal fluids, then gloves are recommended.

The “uninfected” partner could already have been infected and cleared hepatitis B: When a person is first diagnosed with hepatitis B, doctors often test his or her partner for only the hepatitis B surface antigen (HBsAg), which indicates a current hepatitis B infection. If they are negative for HBsAg, they are immediately vaccinated.

If the partner isn’t also tested for the hepatitis B surface antibody (anti-HBs or HBsAb), then no one knows if  the individual was infected years ago (or earlier in the relationship) with hepatitis B and cleared the acute infection.

Hepatitis B is not called the “silent” infection for nothing — many people who get hepatitis B never have any symptoms and never realize they were infected. As a result, a wife, husband, partner or lover who tested negative for HBsAg, may actually have been infected in the past and cleared the infection and now has protective hepatitis B surface antibodies to forever safeguard them from infection. If they’re immediately vaccinated and retested after the three-dose vaccination, they will test positive for surface antibodies, without ever knowing that their antibodies resulted from a past infection, not immunization.

Bottom line, if one of you have been diagnosed and the other is not infected, it is unusual but not uncommon. Get tested and immediately vaccinated if the uninfected partner tests negative for the hepatitis B surface antibody.

Take a quiz to find out how much you know about hepatitis B transmission: click here.

The Hepatitis B Community Cringes As Vaccine Skeptics Take the Stage in Washington

Image courtesy of Tuomas_Lehtinen at FreeDigitalPhotos.net
Image courtesy of Tuomas_Lehtinen at FreeDigitalPhotos.net

By Christine Kukka

In a profound blow to science, public health and the hepatitis B community, President-elect Donald Trump is reportedly asking Robert F. Kennedy Jr. — who believes that vaccines cause autism — to chair a national commission on vaccines.

Countless studies show vaccines are safe and effective and do not cause autism. The hepatitis B vaccine alone has contributed to an 82 percent drop in this deadly liver disease in the U.S. since 1991. Before universal childhood immunizations became available, one in 20 Americans had been infected with hepatitis B. Sadly, that spectacular success has not quieted vaccine skeptics.

It is heart-breaking to hear that an anti-vaccine activist may gain a public forum to promote his scientifically-unfounded opinions. If the hepatitis B vaccine had been available to my daughter and millions of others around the world at birth, there would be fewer people with chronic hepatitis B, fewer deaths from liver disease and cancer and far less anguish, fear and stigma. Vaccines safely and effectively prevent disease, and all of us who have been touched by hepatitis B can attest to their life-saving value.

Let’s review the indisputable scientific facts about vaccines, and why this controversy has resurfaced.

In 1998, the well-respected medical journal Lancet published a paper by researcher Andrew Wakefield and 12 of his colleagues linking a standard measles, mumps and rubella (MMR) vaccine and its preservative  thimerosal to autism. Despite its tiny sample size (just 12 children) and its speculative conclusions, the study was publicized and bolstered the anti-vaccine movement.

The study proved to be a fraud. Editors of the Lancet later retracted the report, and additional investigations into the study found some of children in the study did even have autism. But the damage was done and hepatitis B vaccine makers and others scrambled to remove thimerasol from their vaccines to counter the undocumented claims that it posed a threat to children. A thimerasol-free, hepatitis B vaccine became available in  late 1999.

Image courtesy of meepoohfoto at FreeDigitalPhotos.net.
Image courtesy of meepoohfoto at FreeDigitalPhotos.net.

But parents in the U.S. increasingly chose not to vaccinate their children, even after the disappearance of thimerasol. They didn’t like all the shots their babies were given, and vaccines became victims of their own success. They were so effective that parents began to believe their children were no longer at risk of these vaccine-preventable diseases and did not need immunization.

Before the measles vaccine became available, there were 500,000 cases of measles annually in the U.S. and 500 deaths. By 2000, due to universal immunization, measles had been eradicated. Then the anti-vaccine movement took hold and more and more parents chose not to vaccinate their children. In 2014, the U.S. experienced 667 cases of measles in 27 states, including an outbreak at Disneyland. This is what happens when parents stop vaccinating their children.

What is so piercing and terrible is that millions of us would be free of hepatitis B if only we had been vaccinated at birth or during childhood.

To arouse suspicion about vaccines that save millions of people every day is unforgivable. My daughter has hepatitis B today because this vaccine was not available when she was born. To plant false seeds of doubt about a life-saving vaccine undermines all we have worked for in our effort to eradicate hepatitis B in the next 30 years.

“A conspiracy theory such as the one about the autism vaccine is like an untreated wound,” wrote Michael Specter recently in The New Yorker. “It has festered for years, and yesterday Trump and Kennedy guaranteed that it can only deepen—causing tremendous destruction and needless pain.”

For factual information about vaccine safety, schedules, and why babies are given so many vaccines, click here.

It’s Flu Season: When You Have Hepatitis B, Too Much Tylenol Can Damage Your Liver

Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net
Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net

By Christine Kukka

Cold season is here and sometimes getting a flu shot and consistently washing our hands aren’t enough to keep colds at bay. If you do get sick, make sure the over-the-counter medication you take doesn’t damage your liver while it’s relieving your aches and pains.

Acetaminophen (Tylenol or Paracetamol) is the most popular over-the-counter painkiller in the United States. Americans take 8 billion acetaminophen pills each year for pain reduction, and the drug is also found in cough and congestion medications. When we have hepatitis B, we need to be careful we don’t unintentionally overdose when we take acetaminophen pills to reduce our pain and cough or sinus medications that also contain acetaminophen.

The trouble is, dozens of cold and flu medications that promise to suppress our coughs and let us sleep through the night also contain acetaminophen, but it’s not emblazoned in large print on their labels. Instead, we need to search carefully for “acetaminophen” listed in its ingredient list on the back of the package.

Image courtesy of lobster20 at FreeDigitalPhotos.net
Image courtesy of lobster20 at FreeDigitalPhotos.net

How much acetaminophen can adults safely take? Unless we have serious liver damage, such as cirrhosis, doctors say we can safely take the recommended dose of acetaminophen for a very limited period of time without damaging our livers. In fact, doctors routinely recommend this painkiller following a liver biopsy or to reduce interferon’s flu-like side effects.

The maximum dose of acetaminophen that adults can safely take over a 24-hour period is four grams, which equals eight extra-strength pills or about 12 regular-strength pills. (An extra-strength pill contains 500 mg and a regular strength pill contains 325 mg).

But, if we drink two alcoholic beverages a day, we need to cut that recommended acetaminophen dose in half, that’s how much acetaminophen can affect our livers. If we take too much of this drug at any one time, it builds up in our liver and causes serious side effects. For example, if an adult takes 14 to 20 extra-strength acetaminophen tablets in one dose, he suffers serious liver damage. That’s why some countries, such as Great Britain, restrict how many acetaminophen pills you can buy at a time because people have used this drug to commit suicide.

Acetaminophen is so powerful, studies show that taking the recommended doses of acetaminophen continuously for two weeks can cause mild to moderate—though reversible—liver damage. So careful use of acetaminophen is essential to protect our livers when we have hepatitis B.

Read the label carefully! If you’re taking acetaminophen already for fever and headaches and need something to reduce congestion or coughing, study the cough and sinus medication’s label carefully so you don’t unintentionally double your acetaminophen intake. If you need a cough-suppressant to sleep, stop taking acetaminophen tablets if the cough medicine also contains it.

Follow instructions carefully: If the instructions say take the drug every six hours, follow the directions and don’t take it any sooner.

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

Is ibuprofen better for than acetaminophen when we have a cold? The Cleveland Clinic compared the two over-the-counter painkillers and found ibuprofen (common brand name Advil or Motrin) did not cause the liver toxicity that acetaminophen does. So opting for ibuprofen for pain relief when you have hepatitis B AND a cold, might be a better choice.

Bottom line: Talk to your doctor about what painkiller or cough or sinus medication to take when you’re sick, and read the label carefully. If that sinus medication also advertises that it reduces headaches and other painful cold symptoms, it probably contains a acetaminophen. Limit your doses and don’t mistakenly double up on acetaminophen and damage your liver.

Click here for a complete list of drug brand names containing acetaminophen.

Can’t decide if you have a cold or the flu? Find out here.

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.