By Joan Block, RN, BSN, Executive Director and Co-Founder
The story of the Hepatitis B Foundation is a love story that’s never been told. In June, I will retire after 25 years of service, so now feels like the right time to share my personal story.
In 1987, I was diagnosed with hepatitis B. I had just married Tim (co-founder and president of the foundation and its research affiliate, the Baruch S. Blumberg Institute) when my doctor suggested I get tested for hepatitis B because I was born in Korea.
We were devastated by the diagnosis. As a young nurse in the 1980s, the only hepatitis B patients I knew were dying of liver failure or liver cancer. They were kept in isolation rooms where I had to wear a gown, gloves, and mask to even provide them with basic care.
This was a dark and scary time for us. There was nowhere to turn for information or support, and no available treatment. The prospect of our life together was overshadowed by fear and uncertainty.
My husband Tim, a research scientist, took immediate action by changing his focus to hepatitis B and began the quest to find a cure. We reached out to our close friends, Paul and Jan Witte, and together we decided to create a nonprofit organization dedicated to finding a cure for hepatitis B and helping those affected.
In 1991, the Hepatitis B Foundation was officially established. A quarter of a century later, the foundation has grown from a grassroots effort into the world’s leading nonprofit research and disease advocacy organization solely dedicated to hepatitis B.
Joan M. Block, RN, BSN, Co-Founder and Executive Director
There are many reasons why I waited so long to share my personal story. At first, it was fear and shame. The stigma of having an infectious disease was strong, even though I had acquired hepatitis B at birth. Later, I wanted to keep the focus on the mission of the foundation, not on my personal story.
Today, however, I realize that there is a compelling need for people like myself to publicly share their stories. We need to break the silence around hepatitis B. Personal stories are a powerful tool to increase awareness, decrease stigma and end discrimination.
Although I am stepping down as executive director, I will continue to be passionately involved in advancing the foundation’s mission to find a cure. I will also use every opportunity to personally give voice to the more than 257 million people affected by hepatitis B worldwide.
If more of us can stand up and say without fear or hesitation, “I have hepatitis B,” then we will indeed contribute significantly to making hepatitis B history!
Thank you.
In recognition of Joan’s dedicated service, the Board of Directors has created the Joan Block Improving Lives Fund of the Hepatitis B Foundation. This fund will enable the foundation to advocate powerfully to increase research funds for a cure, end discrimination against those affected, and increase screening, prevention and care to save more lives from hepatitis B.
To honor Joan’s valuable legacy, please make a donation at our secure website by clicking here.
Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net.
By Christine Kukka
Don’t know your hepatitis B status? Get tested. Worldwide an estimated 90 percent of people with chronic hepatitis B don’t know they’re infected. In the U.S. only 25% are aware of their infection. Unfortunately, many doctors won’t test you for hepatitis B unless you request the test. If you or your parents come from or live in a country with high rates of hepatitis B, or if you’ve been sexually active or have other risk factors , get tested. It could save your life.
Get tested for sexually-transmitted infections (STIs). More than half of us will have an STI in our lifetime, and in the U.S. about half of new hepatitis B infections are sexually-transmitted. Many doctors don’t test for STIs. In a national survey of U.S. physicians, fewer than one-third routinely screened patients for STIs. To make matters worse, many women are afraid to talk to doctors about their sexual history and STI risk. Be brave, ask your doctor to test you for STIs and hepatitis B if you think you are at risk.
Photo by Amanda Mills of CDC.
Get immunized against hepatitis B. Not sure if you’ve been immunized during childhood? Tell your healthcare provider and get tested and immunized. Even if you were vaccinated in the past, getting a second vaccine series won’t harm you. If your partner has hepatitis B, getting vaccinated is critical to protect your health. Get tested first. Practice safe sex until you have received all three shots. About one to two months after your third shot, get tested for the hepatitis B surface antibody (called titers). If you have at least 10 mIU/mL of surface antibodies, you are permanently protected against this serious liver disease.
Infected? In Love? Disclose. When you disclose your hepatitis B status before sex – even if it’s safe sex with a condom – you don’t jeopardize your partner’s health or his/her trust in you. Talking about hepatitis B helps reduce the stigma surrounding this infection and may prompt the person to get vaccinated. How do you tell a potential partner that you have hepatitis B? Calmly and carefully. Do some research so you have a thorough understanding about hepatitis B, which will make it easier for you to calmly explain it. 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.
Insist on sterile medical and tattoo equipment. Hepatitis B can live for several days on hard surfaces, including improperly-sterilized and re-used syringes and other medical devices. Whether you’re going for a tattoo or to a dentist or doctor’s office, it is your right to insist that all equipment is brand new (ask to see it removed from protective packaging) and properly sterilized. Visit a licensed, professional tattoo parlor and make sure all tattoo equipment has been sterilized and that needles come out of new packages.
Image courtesy of patrisyu at FreeDigitalPhotos.net
Infected and pregnant? Protect your baby from hepatitis B.
Make sure your newborn gets the hepatitis B vaccine within 12 hours of birth. Nearly all hepatitis B-infected women will pass the infection onto their children during delivery, but you can stop that infection cycle. In about 90 percent of cases, immediate immunization will prevent infection. In some countries, it may be difficult to get just the single hepatitis B vaccine dose, but if you are able to immunize your baby at birth, you will have protected your child against a potentially dangerous liver disease. If you live in an area where HBIG (hepatitis B antibodies) is available, make sure your newborn is also given a dose of HBIG at birth, this adds another layer of protection against infection.
Get your viral load (HBV DNA) tested early in your pregnancy. Some women with high viral loads (exceeding 200,000 IU/mL or 1 million copies/mL) are at high risk of infecting their newborns, even if the baby receives the first vaccine dose within 12 hours of birth. Ask your doctor to test your viral load, if it’s high, medical guidelines recommend treatment with the antiviral tenofovir during the last three months of your pregnancy to lower your viral load. If you doctor doesn’t test your viral load, be assertive and ask for the test, especially if you are HBeAg positive.
Breastfeeding is OK, even if you have hepatitis B. If you’re infected with hepatitis B, you can safely breastfeed your baby, as long as the baby was vaccinated against hepatitis B at birth.
Maureen and her two daughters
Your children infected? Don’t wait to start talking to them about hepatitis B. You need to start talking to them about germs and how to keep themselves and others safe when they’re young. (Listen to Jin’s Story #justB You about growing up with hepatitis B.) This conversation will be one of the hardest discussions you will ever have with your child, and you’ll be talking about it often in the years ahead, but you can do it! Start explaining HBV by reading the Hepatitis Victoria “Hep B Hero” book for children two to six years of age.
To hear how other mothers handled talking about hepatitis B with their children, visit our Storytelling page and click on Maureen’s Story #justB Brave and Maureen K’s Story #just B Assertive to hear how these mothers navigated issues of disclosure and stigma with their daughters. Hepatitis Victoria recently launched their “Little Hep B Hero” book, an engaging story teaching children 6-12 year olds about hepatitis B.
Talk to your children about sex and safe sex practices. It’s critical to educate young people about sexual health and STIs. If we want our sons and daughters to feel empowered to take care of their sexual health, we have to change the culture that dictates the way we talk – or don’t talk – about sex. That means removing denial, uncertainty and shame so we have better conversations about sexual health, sexual assault prevention and STIs. It’s also important to encourage our children to have frank sexual health discussions with one another.
Take care of your health, get monitored regularly: It is important to get your hepatitis B monitored regularly – at least every year and more often if you have liver damage. Women living with hepatitis B tend to have lower rates of liver damage than men because estrogen appears to help protect the liver. But even if we lead a healthy lifestyle and avoid alcohol and cigarettes, as we age our immune system weakens and our viral load (HBV DNA) can start to rise. There is no cure yet for hepatitis B, but there are effective drugs that lower viral load and reduce the risk of liver damage.
Renseley and her husband.
Be happy. A mother or woman who is well rested, enjoys a healthy diet, gets plenty of exercise, has good relationships with friends and family members and knows how to ask for help when she needs it, is far better equipped to be happy and be the best mother she can be. It isn’t selfish to take care of yourself. Tough times happen, and sometimes a friend or family member may need us, and we will need to be strong during difficult times. If we take care of ourselves and ask for help, in the long run happiness will prevail. For a profile in joy and courage while fighting hepatitis B in her family, watch Renseley’s Story #justB Strong.
When my daughter thinks about how active she should be in raising awareness about hepatitis B, she gets tripped up by racial identity and politics.
Recently, she attended a workshop where people living with hepatitis B told their stories. It was empowering and energizing, and then she went home to a state where the majority are white, the governor claims immigrants are bringing in new diseases, and no one has ever heard about hepatitis B.
“Suddenly, I feel paralyzed,” she told me. “I look at the other people in my hepatitis B group and all of us were Asian or Black. I’m afraid if I tell my story here at home that everyone will assume everyone who’s Asian has hepatitis B.”
Instead of increasing white America’s compassion and empathy towards people with hepatitis B, she fears it might make them more afraid of people of color. Her fears are understandable. In this era of Trump, hate crimes and backlash against immigrants have increased. She’s afraid speaking out might unwittingly reinforce simmering racist stereotypes. She wonders if she has that much courage.
She’s worried about how it will affect her personally. Already she sees some clients she works with gravitate and open up more to her white coworkers. “I don’t know if I’m over-thinking it all, and feeling overwhelmed about how to handle this,” she confided.
There is a story about a Asian-American researcher who worked on hepatitis B for decades. When she conducted some independent screening in her community and discovered that a large percentage of Korean-Americans tested positive for hepatitis B, she was fearful. She never published her findings, she was afraid it would fuel racism against Asian-American immigrants. She chose self-censorship instead.
Much has been written lately about how much more empathy the American public and some politicians appear to have toward the rural opiate addiction crisis now that it has a “white face,” given that addiction in inner cities has decimated generations of African-Americans for decades.
Does my daughter intuitively know that America has far more sympathy (and dedicates more funding) for diseases that affect white and middle-class communities than minority populations?
I try to give her another take on the situation, suggesting that the human map of hepatitis B is defined by access to healthcare. People in poor regions of the world don’t have access to the hepatitis B vaccine birth dose, which must be administered within 12 hours of birth to break the mother-to-child infection cycle, or to sterile syringes and medical equipment.
I explain it’s the same in rural America. The hepatitis B vaccine has been available since 1982 and recommended for all children and adolescents, yet today there is an uptick in new hepatitis B infections among injecting drug users. Uninsured adults who didn’t have access to preventive healthcare and the hepatitis B vaccine growing up are now getting infected from the opioid epidemic. Just like Africa and Asia, medical insurance and access to healthcare defines who lives and dies.
Just like Africa and Asia, in rural and low-income America, access to insurance and healthcare defines who lives and dies.
In the late 1980s, a young group of AIDS activists created ACT Up, a noisy, boisterous group that fought the government and big pharma in order to speed up the AIDS drug approval process. They even took over the National Institutes of Health office at one point and unfurled a banner that read: Silence = Death.
For a long time, white America thought everyone who was gay had AIDS. But over time, they stopped making that assumption. It takes time, education, and tireless and selfless advocacy. We all do what we can, when we can.
Image courtesy of Janpen04081986 at FreeDigitalPhotos.net.
By Christine Kukka
The day we arrived home from China, my husband and I brought our four-month-old adopted daughter to a pediatrician for a check-up. The doctor looked at my daughter’s health records from China, saw she had tested negative for hepatitis B, and said, “Good, I don’t have to test her for that.”
About a year later, I got sick, very sick. I felt nauseous, my stomach hurt and I felt bone tired. I gradually recovered and chalked it up to a bad case of flu.
When my daughter was 2 years old, I read on an adoption email list that some children were testing positive for hepatitis B stateside, though their medical reports in China had given them a clean bill of health. During her next check-up, I asked the pediatrician to test her for hepatitis B. The test result came back positive. A week later, so did mine.
My daughter had chronic hepatitis B, and I, who had donated blood regularly until I became a busy parent, had an acute case, and cleared the infection. Our story, unfortunately, is not uncommon. Across the U.S., many primary care doctors fail to test at-risk patients for hepatitis B.
I live in a rural, New England state where there are not many people from countries with high rates of hepatitis B. Our pediatrician didn’t know that it can take several weeks after exposure for an infection to show up in a lab test. She didn’t know that China’s medical records weren’t reliable. She knows it now, but many providers still don’t.
Over the years, I have heard many similar stories with worse outcomes. In one case, a young woman born in South Korea suffered epilepsy and her doctor treated her with a common seizure medication without first screening her for liver infection or damage. She died in her early 20s from liver cancer. The epilepsy drug accelerated her hepatitis B-related liver disease.
A recent article published on the Monthly Prescribing Referencewebsite, describes how a primary care provider was sued for malpractice after he failed to monitor a patient for liver damage despite the fact the Asian-American patient told him he had hepatitis B in his teens. The patient, who was treated by the doctor for more than 15 years, died from liver cancer resulting from untreated hepatitis B.
In addition to these stories, there are numerous studies published in medical journals that show doctors often fail to test patients for hepatitis B or treat them appropriately when hepatitis B is diagnosed. Even liver experts who should know better often don’t follow medical guidelines that recommend antiviral treatment for hepatitis B-related liver damage.
I often wonder why there is this breakdown in hepatitis B care. I wonder if it stems from racism or prejudice. Many people with hepatitis B are people of color, recent immigrants, gay, or low-income. These patients can be challenging for doctors, especially when providers have little experience with hepatitis B, but that’s no excuse.
Over the years, I have accompanied my daughter to her medical appointments and often remind doctors what labs they should order and what the latest monitoring guidelines are. The best of them admit they don’t know how to treat hepatitis B and sit down and read the latest guidelines and discuss a care plan with my daughter. The worse simply do whatever I ask, and I am no doctor.
I have found one of the best tools available are software programs that link a patient’s electronic medical record to current medical guidelines. It makes it easy for doctors to know what tests should be ordered, especially if they have never treated hepatitis B before. But they need to have the software and the desire to use it.
I appreciate that doctors are human, over-worked and are driven by an assembly line business model that makes it hard to pause and research a new medical condition. However, the human price paid for lapses in care is terrible, and far more costly considering the expense of treating liver cancer, compared to running the right tests and prescribing the correct antiviral treatment today.
In the U.S., about two-thirds of people living with chronic hepatitis B don’t know they’re infected. They don’t have the money, the insurance coverage, or access to the right doctors who will test and treat them, and make sure their family members are tested and vaccinated. An estimated 20 percent of these people will die prematurely from liver disease. And today, as I listen to the news, I am afraid it’s only going to get worse.
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.
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.
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
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.
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.
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,
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.
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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.
“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.
Here are some tips from the American Sexual Health Association for disclosing a sexually-transmitted infection.
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.
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… “
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.
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.
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.
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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.
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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.
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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.
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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.
By Christine Kukka
I have found one of the best tools available are software programs that link a patient’s electronic medical record to current medical guidelines. It makes it easy for doctors to know what tests should be ordered, especially if they have never treated hepatitis B before. But they need to have the software and the desire to use it.
By Christine Kukka
