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One in Three People Worldwide Has Had Hepatitis B, So Why Do We Feel So Alone?

Volunteers from the Rann India Foundation teach villagers about hepatitis B testing and prevention in India.
Volunteers from the Rann India Foundation teach villagers about hepatitis B testing and prevention in India.

By Christine Kukka

Hepatitis B is the global pandemic no one talks about, yet one in three people worldwide has been infected. In 2013, hepatitis B and C together was the seventh-leading cause of death worldwide, with hepatitis B causing 780,000 deaths annually.

Today, 257 million people have chronic hepatitis B. Despite the availability of an effective vaccine, the number of people living with hepatitis B virus is projected to remain at the current, unacceptably high level for decades and cause 20 million deaths through 2030.

How can this happen? Viral hepatitis infection and death rates far outstrip that of ebola and zika. In fact, you have to combine the death toll from HIV and tuberculosis to find human suffering on par with what viral hepatitis causes around the world each year. Continue reading "One in Three People Worldwide Has Had Hepatitis B, So Why Do We Feel So Alone?"

Newly Diagnosed with Hepatitis B? Acute or Chronic? Learning the HBV Basics…

Image courtesy of dream designs at FreeDigitalPhotos.net
Image courtesy of dream designs at FreeDigitalPhotos.net

If you’ve just been diagnosed with hepatitis B after a routine blood test or following a blood donation, you may be feeling overwhelmed with information about this complicated infection and references to acute or chronic hepatitis B.

Here is an explanation of these two terms and what happens when you’re first infected with the hepatitis B virus (HBV). Hepatitis B is transmitted through blood and body fluids. It can be spread during unprotected sex, unsafe medical procedures, exposure to blood that enters your body through a cut,  or by sharing personal items such as body jewelry or toothbrushes. Most commonly it is spread during childbirth when the mother is infected.

What is a chronic infection? When we’re infected as newborns or young children, our immature immune systems don’t notice or fight the virus and it travels to our liver and begins reproducing. With no opposition from our immune systems, a hepatitis B infection can continue for years. When a hepatitis B infection lasts longer than six months, it is considered a chronic or long-term infection. Most people with chronic hepatitis B were infected at birth or during early childhood. Immunization with the hepatitis B vaccine and hepatitis B immune globulin (HBIG), if available, within 12 to 24 hours of birth can break this mother-to-child infection cycle, but the birth vaccine dose and often HBIG is not always available around the world.

What is an acute infection? When we’re infected with HBV as healthy adults, about 90 percent of us are able to get rid of the infection within six months. It can take up to six months for our immune systems to generate antibodies and eradicate the infection in our liver. This short-term infection is called acute hepatitis B.

To determine if you have an acute or chronic infection, you must be tested for hepatitis B over a six-month period. The specific test that indicates if you are infected is the hepatitis B surface antigen (HBsAg) test. This antigen covers the surface of the virus and usually there are lots of HBsAg in your blood when you’re infected. If you test positive for HBsAg for longer than six months, it means you have a chronic hepatitis B infection.

But, if you no longer test positive (or “reactive”) for HBsAg after six months and you develop hepatitis B surface antibodies (HBsAb), then you have cleared hepatitis B after an “acute” infection. There are some additional blood tests that your doctor may order to get a better understanding of your infection, but not everyone has access to these tests. Some tests are rather expensive and they may still need to be repeated over time in order to confirm the diagnosis. Please be patient. The good news is that hepatitis B is not typically an emergency.

Here is more good news. If you are a healthy adult and are newly or acutely infected, know that your chances are good that the hepatitis B infection will go away on its own. It is rare that you require medication to get rid of the virus, your immune system does that for you.  A person with a new hepatitis B infection may not have any symptoms, or they may not be very notable. For example, you might feel more tired. About 70 percent of people newly-infected with hepatitis B never experience symptoms.

But, some people experience severe symptoms like jaundice (yellowing skin or eyes), severe nausea or vomiting, or a bloated stomach (unrelated to your weight), and they need to see a doctor immediately. If you have a new or acute infection, even these drastic symptoms may not necessarily mean that you need any form of treatment, but you will need to be monitored with additional tests to make sure your liver is safe.

If you can’t confirm you were infected as a child, you will need to wait the six months to find out if you cleared your infection. Please be patient and do not panic, but remember you do need to take precautions during this time to make sure you don’t spread the infection to others. Practice safe sex (use a condom), and don’t share personal items that may have trace amounts of blood on them.

Also, you can suggest that your family members get screened for hepatitis B and vaccinated if needed. If you were infected at birth, there is a chance that your siblings may also be infected. Sexual partners and close household members should also be tested. There may be a nine-week period right after infection when they may not test positive for HBsAg even if they have been infected.

Is a Cure for Hepatitis B Coming? Experts Say Yes

How far are we from finding a cure for hepatitis B? We are close, said Timothy Block, PhD, president and co-founder of the Hepatitis B Foundation and its research arm, the Baruch S. Blumberg Institute. He points out that hepatitis C, once thought to be incurable, is today cured with new combination treatments.

Image courtesy of suphakit73 at FreeDigitalPhotos.net.
Image courtesy of suphakit73 at FreeDigitalPhotos.net.

Experts believe a cure for hepatitis B will also soon be developed. And the need for a cure has never been greater, with more than 240 million people worldwide living with chronic hepatitis B, causing 1 million deaths per year from related liver failure and liver cancer.

“Treatments are available,” explained Block, “but we have become a little too comfortable with the medications that are currently approved for use.” While these drugs are effective, interferon has many side effects and daily antivirals require lifelong use. These drugs work in only half of the infected population and reduce death rates by only about 40 to 70 percent.

What will a cure look like?

The available antivirals are similar and combining them offers no advantage. They have limited effectiveness against cccDNA, the seemingly indestructible “mini-chromosome” of the hepatitis B virus that continues to produce virus particles in infected liver cells, even in people being treated. A cure, therefore, would have to destroy or silence cccDNA and provide long-term immunity. Because one-drug treatments can lead to drug resistance, a cure would almost certainly involve combination therapy, similar to hepatitis C. Continue reading "Is a Cure for Hepatitis B Coming? Experts Say Yes"

Celebrate Asian-Pacific American Heritage Month, And Get Tested for Hepatitis B

Image courtesy of hin255 at FreeDigitalPhotos.net
Image courtesy of hin255 at FreeDigitalPhotos.net

May is Asian-Pacific American Heritage Month – a celebration of Asians and Pacific Islanders in the United States. The month of May was selected in 1978 to mark the first major Japanese immigration to the United States (May 7, 1843), and the completion of the transcontinental railroad (May 10, 1869), built primarily by Chinese immigrants.

Like all immigrants, Asians and Pacific Islanders brought with them unique cultures, languages, and lingering health problems from their homeland, including hepatitis B.

This blood-borne infection, unknowingly passed from mother-to-child, is an infection without a cure that would impact Asian immigrants and their children for decades until a vaccine was developed.

Today, administration of the first dose of the hepatitis B vaccine along with a dose of HBIG within 12 hours of birth severs this viral legacy and protects newborns from inheriting this infection. But that is not the end of the story. There are still many Asian-Americans who remain infected, and many Asian immigrants arriving today live with hepatitis B.

An estimated one in 12 Asian-Americans currently has hepatitis B, and two in three don’t know they are infected. Their infection rate is more than 20 times higher than that of the total U.S. population. Hepatitis B is the greatest health disparity between Asian-Americans and the general U.S. population. Approximately 1 million Asian-Americans are living with chronic hepatitis B infection – that’s about half of all cases in the United States. Continue reading "Celebrate Asian-Pacific American Heritage Month, And Get Tested for Hepatitis B"

It’s Hepatitis Awareness Month: Five Reasons We Don’t Get Tested, and How to Overcome Them

Members of Drexel University's Asian Pacific American Medical Student Association participate in a hepatitis B screening program at a Chinese Christian church in Philadelphia.
Members of Drexel University’s Asian Pacific American Medical Student Association participate in a hepatitis B screening program at a Chinese Christian church in Philadelphia.

May is Hepatitis Awareness month. Why do we need an annual reminder about hepatitis B? Because 65 percent of the estimated 2.2 million people in the U.S. living with hepatitis B don’t know they’re infected.

Studies show when people know their hepatitis B status, they’re more likely to get monitored regularly, get treatment, and take steps to avoid passing on the disease to partners and their children.

So why are so many Americans unaware of their hepatitis B infection? Here are five roadblocks that stop us from getting tested for hepatitis B, and what how we can do to overcome them.

We feel fine, so we assume we’re not infected. Hepatitis B rarely causes symptoms. There are very few sensory nerves around the liver, so when a viral hepatitis infection strikes, we rarely feel its effects. As a result, most of us – especially if we were infected as children or newborns – never experience any symptoms for decades. So remember, “feeling OK” is no excuse to avoid testing. Continue reading "It’s Hepatitis Awareness Month: Five Reasons We Don’t Get Tested, and How to Overcome Them"

Beating the Odds: A Liver Cancer Survivor’s Story

Liver cancer, caused by hepatitis B and C, is on the rise in the U.S. and it is also the second deadliest. Fewer than 15 percent of patients with liver cancer will survive five years after their diagnosis. It is the third-leading cause of cancer deaths among Asian-Americans and the eighth-leading cause of cancer deaths among Caucasian-Americans.

Despite this bleak outlook, there are people with liver cancer who are beating the odds and surviving. The medical community is also working hard to develop new drugs and effective strategies to treat liver cancer. Here is one survivor’s story.

By Frank Gardea

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

In late 2008, during routine testing before surgery, I found out I had hepatitis C and liver cirrhosis. It was a double whammy because having both viral hepatitis and cirrhosis put me at high risk for liver cancer.

Then the abdominal pain started. I suffered for almost three years and was in and out of the emergency department. They could not pinpoint the cause of the pain. When they finally diagnosed my liver cancer, the tumor was over 8 cm in size. Continue reading "Beating the Odds: A Liver Cancer Survivor’s Story"

How Was I Infected with Hepatitis B? Making the Journey from Anger to Acceptance

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

By Christine Kukka

“How did I get infected? Who could have infected me?” These questions are common when we are first diagnosed with hepatitis B.

Dumbfounded by the news, we struggle to understand when this infection could have occurred and who could have infected us with a virus that now threatens our health and well-being.

This diagnosis not only affects our health, it can weaken the trust we’ve placed in family members, friends and lovers. It threatens to dismantle basic beliefs we’ve held about fairness and honesty, and the assumption that if we treated people well that we would be treated fairly in return. Infections know no moral codes and ignore all the unspoken deals we have made with the universe. Continue reading "How Was I Infected with Hepatitis B? Making the Journey from Anger to Acceptance"

Romance in the Air? Take a Deep Breath and Disclose

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

Valentine’s Day may be a time to celebrate romance, but first you need a relationship. When you have chronic hepatitis B, starting a relationship and initiating sex is fraught with stress, hard disclosures, and the potential for break-up before an intimate relationship can even begin.

Recently, the Hepatitis B Foundation received this heart-breaking post from a 33 year-old man who thought his “inactive” hepatitis B could not be transmitted sexually.

“I’ve lived my entire life with this, but always thought it was just a normal thing (my mother said many Asians have it) and thought it was nothing to be concerned about as I never showed symptoms,” he wrote. “My doctor never said anything either. I lived my life thinking being a carrier was nothing out of the ordinary, and that I … could transfer it via blood, but could not sexually. Continue reading "Romance in the Air? Take a Deep Breath and Disclose"

Why Won’t Doctors Treat Young Adults with High Viral Load and No Signs of Liver Damage?

Image courtesy of Graur Razvan Ionut at FreeDigitalPhotos.net.
Image courtesy of Graur Razvan Ionut at FreeDigitalPhotos.net.

If antiviral medications almost always lower viral loads, why don’t doctors treat young adults with high viral loads with this daily pill? After all, don’t high viral loads lead to liver damage and even liver cancer?

This is one of the most common questions posed to the Hepatitis B Foundation, and at first glance the decision not to treat a high viral load with antivirals seems counter-intuitive or plain wrong. If antivirals reduce the number of hepatitis B virus (HBV) in the body, won’t that give the immune system an opportunity to clear out the remaining residual HBV?

Unfortunately, it doesn’t work that way. It’s complicated, as are many aspect of hepatitis B.

It’s common for young adults (up to age 30) who live with hepatitis B to be in the “immune tolerant” stage of infection with extremely high viral load (HBV DNA) but with no signs of liver damage.

When we’re born to mothers infected with hepatitis B, unless we’re immunized at birth 90 percent of us become infected from exposure to infectious blood and body fluids during delivery. And when infants are infected, their immature immune systems don’t recognize the virus. The young immune system misses the “red flag” signature on this hepatitis B virus and “tolerates” the infection instead of attacking it.

In contrast, when we’re infected as healthy adults, our immune systems immediately detect and identify hepatitis B as a viral invader and aggressively attacks the virus and any infected liver cells. In adults, it generally can take up to six months for the immune system to eradicate the virus. When we’re infected as children, it can take up to three or even four decades for our immune systems to notice the virus and shift into “immune active” battle mode.

Until the immune systems notice the virus and begins to fight the infection, children and young adults remain in the “immune tolerant” stage, with sky high viral loads that can reach 1 billion international units per milliliter (IU/mL). Unencumbered by an immune system that’s on the offense, the virus hijacks liver cells to replicate and churn out more virus.

Because the immune system isn’t attacking and damaging the infected liver cells, liver tests (ALT or SGPT) results show no signs of damage and usually remain in the normal range (30 or less for men and 19 or less for women). And until our immune systems wake up and launches its attack, doctors say there is no reason to try to lower the viral load in these young adults because even when antivirals lower viral load, the immune system stays dormant and doesn’t go on the offensive.

Experts recently re-examined whether this hands-off approach was still valid and reviewed more than a dozen studies that examined whether antiviral treatment benefited immune-tolerant adults.

At the November 2015 AASLD Liver Conference, researchers reported, “There are no studies demonstrating that antiviral therapy is beneficial in reducing rates of liver cancer, cirrhosis, and liver-related death in persons with immune-tolerant chronic hepatitis B.”

Following their instruction to “first do no harm,” the experts recommended, “Given the lack of evidence of benefit to those with (high viral load and normal ALT levels), the potential harms of finite (or longer) antiviral therapy, including cost, antiviral drug side effects, and development of resistance, outweigh benefits.”

Let’s explore their rationale:

  • Antivirals work for only as long as you take them. Once started because of liver damage, patients can be on them for many years, and when patients go off antivirals, they often experience a “flare” with a sudden increase in viral load and ALT levels that can be dangerous.
  • The leading antivirals, including tenofovir (Viread) and entecavir (Baraclude), are not cheap, especially tenofovir which is not yet available in a generic formula.
  • And antivirals have side effects, which can include bone loss, impact on kidney function, and a risk of developing drug resistance.

So, if treatment will not yield good results, why put young adults through the cost and medical risk? In fact, experts don’t even treat immune-tolerant patients who have family members with hepatitis B-related liver cancer.

The experts did make clear that all immune-tolerant patients should have their ALT levels and viral load checked at least every six months so doctors could monitor their infection.

Still, this is challenging to hear when we are living with hepatitis B or just recently diagnosed with a chronic infection. We want to do something to fight the infection. But without an active immune system as a strategic partner in our fight against hepatitis B, we must be patient and let go of a quick-fix hope, as much as we all want a magic pill to cure our infection.

So in the interim, until our immune systems wake up and starting fighting the virus in our bodies, we do what we can to protect our health, including eating healthy foods, avoiding alcohol and cigarettes, and getting monitored every six months. It may not feel like it’s enough, but for now it’s all we can do.

 

 

Navigating Our Emotions When We’re First Diagnosed with Hepatitis B

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

When we’re first diagnosed with hepatitis B, our physical health isn’t the only thing we need to focus on. Many of us experience powerful surges of fear, anger, sadness, powerlessness, depression, and anxiety.

No matter what you’re feeling, you have a right to feel whatever emotions are welling up – sometimes unexpectedly – inside you. There are no right or wrong feelings, they just are, and it’s up to you to decide what choices you make and how to respond to them.

When my daughter was first diagnosed, she was a toddler and happened to be coming down with a cold. I knew nothing about hepatitis B and was convinced she would soon die from it given her crankiness, lethargy, and nonstop sleeping.

Within a day or two, she was her smiling, energetic self again, and I happily slipped into denial. Surely the test was wrong or there was a mix-up in the result. My husband dragged his feet for weeks before he agreed to be screened for hepatitis B so great was his denial and fear.

Denial is a normal first reaction, it can give us some  breathing room to get used to the idea that we’re infected. But denial can also be dangerous, especially if we’re in a sexual relationship with someone and don’t take precautions. Denial can be dangerous when we hide our infection and don’t tell our family members or partners, even though they may have been exposed. Denial is dangerous when we don’t tell our parents, who may not know they’re infected and unknowingly passed the virus to us at birth.

It’s important to talk out our feelings with a doctor, a therapist, or a friend you trust. We need to move through denial so we can begin to receive the care and support we need, and talk to others who may also be at risk.

Anger is another common and natural feeling after a diagnosis. It’s OK to get upset about how we or our family members were infected, or get angry that our parents or lovers didn’t know they had the virus and infected us. Try to talk about your anger with counselors or friends, get some exercise to work off your tension and avoid situations—including drugs or alcohol—that can ignite festering emotions.

It’s normal to feel sad, and sometimes the sadness doesn’t go away quickly. If you feel prolonged sadness, anxiety, or fear, or find you’re gaining or losing weight or sleeping more or less than usual, it’s time to talk to someone who can help.

Fear and anxiety are common because we don’t know what’s going to happen next. If you’ve just been diagnosed, you may have to wait six months for another test to show whether you were recently infected and have acute (short-term) or were infected as a child and have chronic (long-term) hepatitis B. That wait can be insufferable.

Our stress can cause a host of physical symptoms, ranging from headaches to fatigue, that may have nothing to do with hepatitis B. It’s important to talk to your doctor about these symptoms so you know what is hepatitis B-related, and what’s caused by worry and fears.

At this early stage, many of us want to get rid of the virus as soon as possible and we’re willing to try any supplement or treatment available, even if our doctors tell us we’re healthy and don’t need any treatment. At this early diagnosis point, we just need to take care of ourselves, eat healthy foods, avoid alcohol and cigarettes, and get monitored regularly, even though what we really want is a magic pill that will make this infection go away.

In normal grief cycles, there is a point of acceptance. But I’m not sure we totally ever accept this loss of our “perfect” health, and our ability to have sexual relations, give birth, or drink a glass of wine without thinking of the shadow hepatitis B casts over these activities.

As a wise friend has pointed out, we need to accept that hepatitis B is part of us, but it doesn’t have to define us. Perhaps getting to that realization is the journey we begin when we read that first lab report and hear the diagnosis.

For support and information from other people living with hepatitis B, join the Hepatitis B Information and Support Email List at  http://hblist.net