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.
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
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.
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"→
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.
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
Cold season is here and sometimes the flu vaccine and washing our hands just aren’t enough to keep colds at bay. If you do get sick, make sure the over-the-counter (OTC) medication you take doesn’t damage your liver while it’s relieving your cold symptoms
Acetaminophen (brand name Tylenol) is the most popular painkiller in the United States. (In other parts of the world it is known as Paracetamol.) Not only is it found in the 8 billion acetaminophen pills Americans take each year to reduce aches and pains, it’s 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 and cough or sinus medications. Continue reading "It’s Flu Season: Protect Your Liver from Unintentional Acetaminophen (Tylenol) Overdose"→
In 2015, doctors continued to unlock the mysteries of hepatitis B and uncovered promising new treatments. Armed with new information, here are 10 things we can do in 2016 to safeguard our health and help prevent the spread of hepatitis B.
Get monitored regularly. No one likes a blood draw or to be reminded they have hepatitis B, but it’s important that you’re tested annually or more often if you have a high viral load and/or signs of liver damage. There’s no cure yet, but there are effective treatment options with more in the pipeline. So be brave, protect your health, and go to the lab for a blood test.
If you’ve been prescribed an antiviral, don’t forget to take it. Taking a pill every day is tedious and it’s tempting to skip it, but failing to take your daily antiviral reduces its effectiveness and can lead to drug resistance. The hepatitis B virus is a master at mutating to escape whatever is attacking it. Forgetting to take your daily pill can lead to an uptick in your viral load and liver damage. Stay strong, take your daily pill, and keep that virus undetectable.
Face it, antivirals are a long-term commitment. Until a cure is developed, antivirals—either tenofovir (Viread) or entecavir (Baraclude)—are the best treatment to quickly reduce both viral load (HBV DNA) and liver damage. But they work for only as long as we take them, and once we start, we are usually committed to years of treatment. Quitting antivirals before we’ve achieved undetectable viral load and lost the hepatitis B surface antigen (HBsAg) often results in a resurgence of both viral load and liver damage. Antivirals are a long-term treatment that help prolong our lives.
Demand to be screened for liver cancer. Some experts say current medical guidelines that recommend when we should be screened for liver cancer don’t go far enough to protect us. 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.
Experts say a cure is coming … so stay informed about new drug developments and clinical trials. There is lots happening on the research front. To find out what drugs are in the development pipeline, visit the Hepatitis B Foundation’s Drug Watch page for the latest news. You can also find out if you qualify for a clinical trial. Expensive blood work, treatment medications, and doctor’s visits are usually free-of-charge for those accepted into a study. The foundation features a list of hepatitis B-related clinical trials that are recruiting patients in the U.S. and around the world at its Clinical Trials page. You could become part of the cure.
Pregnant with hepatitis B? Get your viral load tested and ask your doctor about antivirals. In November, the American Association for the Study of Liver Disease (AASLD) for the first time recommended 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) starting at their 28th week of pregnancy. 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 remains in the U.S. and abroad. 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?
Practice safe sex and never re-use needles. Today, in some areas of the U.S., hepatitis B is increasing—even though a safe and effective vaccine exists. Unfortunately, not everyone is immunized and the infection is still getting transmitted sexually. In the midst of America’s heroin epidemic, it’s also spreading when syringes are re-used and shared. Do you want to end hepatitis B? Make sure your friends and family members know how to prevent sexually-transmitted infections (even if those conversations are challenging, their lives may depend on it) and support needle exchange programs in your region and state. Countless studies show that when needle exchange programs are available, HIV, hepatitis B and C rates decline! It saves lives and healthcare dollars!
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.
Twenty years ago when I found out my daughter had chronic hepatitis B, I would’ve purchased any drug I could find to cure her. I asked her doctor if she could join a pediatric clinical trial for lamivudine. I just wanted her cured as soon as possible. Fortunately, cooler heads prevailed.
My daughter didn’t need treatment then, and she doesn’t need it today. Her doctor was wise enough not to try an antiviral with an unknown track record that was later found to cause high rates of drug resistance. It would have caused more harm than good.
When we want hard to believe in something—especially a medicine that is advertised to cure hepatitis B–we end up listening to our hearts and not our heads.
Many people touched by hepatitis B around the world don’t have an expert to be the voice of reason and wisdom when they hear about false, counterfeit, or untried treatments for hepatitis B. Sadly, there is a steady increase in false marketing claims on Facebook and other websites using testimonials and marketing ploys to sell a counterfeit hepatitis B cure to we who are vulnerable, frightened, and desperate for a quick cure.
We at the Hepatitis B Foundation know this all too well. The public can post on our Facebook and blog pages. Often, unscrupulous people pitching ineffective cures will try to post a personal claim endorsing some doctor’s or herbalist’s new cure. Here’s a recent, verbatim example of a post to our Facebook page:
“Just wanna express my moment of joy for (having) been cured from the deadly HEPATITIS B. I have been infected with the Disease over three years and already lost hope (because) I have already tried so many ANTIVIRAL treatment…. one day while making more research online, I came across a testimony of a patients Dr … cured from GENITAL HERPES and I decided to give the said doctor a call….”
As you might expect, the writer claims to have been miraculously cured by the doctor using an antiviral drug called hepantivir, for example. But this drug has no scientific credentials. It has never been studied or tested or reported on in medical journals. But “experts” promise it will cure hepatitis B for $800.
We at the foundation remove these posts as soon as we discover them. These herbal supplements and counterfeit drugs can look very official, with medical-sounding names and packaged to appear like true pharmaceutical products. The advertising often features a photo of a doctor to appeal to a local audience. But they’re fake, and some of these “products” can even make you sicker than before you started the alleged, miracle drug.
In 2013, a study by the United Nations Office on Drugs and Crime that focused on Africa and South-East Asia suggested the counterfeit drug market in Africa was worth about $4 billion (USD). A report found that in 2009, in Nigeria, 60 out of 225 (27 percent) antimalarial medications failed chemical analysis, and in Ghana, 14 out of 17 (82 percent) antimalarial drugs followed suit.
Their deceit is cruel and criminal, especially when it targets frightened people who may have no access to treatments or advice. In the U.S., drugs must be approved by the U.S. Food and Drug Administration. To win that approval, randomized, clinical trials that compare outcomes of treated patients to untreated patients (the control group), are needed to prove a drug actually does helps people. This is the gold standard of medical evidence.
That careful FDA review does not, however, apply to herbal supplements. One day, some of these supplements may indeed be found to have beneficial effects to protect the liver against hepatitis B after rigorous study and experiments. But that research hasn’t happened yet.
The U.S. National Institutes for Health has published a directory about what scientific research has discovered about common herbal supplements. Probably the most popular herbal supplement pitched as a liver remedy is milk thistle, and its extract silymarin. The NIH milk thistle report found, “Previous laboratory studies suggested that milk thistle may benefit the liver by protecting and promoting the growth of liver cells, fighting oxidation (a chemical process that can damage cells), and inhibiting inflammation. However, results from small clinical trials of milk thistle for liver diseases have been mixed, and two rigorously designed studies found no benefit.”
A true scientific evaluation is what we need to hear, even when we desperately want milk thistle or another supplement to be the cure. There is no magic bullet that is going to cure hepatitis B. It is a complex infection with no cure at this time. Experts are making great strides and hope to find a cure in the next few years, but now, this is the time to let our heads make healthcare decisions, instead of our vulnerable and hopeful hearts.
So be patient. Don’t fall for false promises, even when they’re accompanied by professional-looking photographs and emotional testimonials. If it sounds too good to be true, it probably is.
These counterfeit medications are often manufactured in unsafe conditions; contain too little, too much or no active pharmaceutical ingredients; and, in many cases, have been found to contain dangerous substances like floor wax, rat poison, concrete, chalk, boric acid, road tar, paint, anti-freeze, and other toxins. This means that consumers worldwide are just a click away from buying products that may cause harm, treatment failure or even death. Read more…
Fight the Fakes Campaign:Fight the Fakesis a campaign to raise awareness about the dangers of fake medicines. The campaign gives a voice to those who have been personally impacted and shares the stories of those working to put a stop to this threat to public health. It seeks to build a global movement of organizations and individuals who will shine light on the negative impact that fake medicines have on people around the globe and to reduce the negative consequences on individuals worldwide.
As part of this effort,Fight the Fakes is collecting and sharing the stories of those who are impacted by fake medicines and are speaking up. The website also serves as a resource for organizations and individuals who are looking to support this effort by outlining opportunities for action and sharing what others are doing to fight fake medicines.
When we have chronic hepatitis B, knowing our family medical history can give us an inside edge to fight this infection.
Hepatitis B is an infection that often runs in families, and knowing how our parents or grandparents handled this liver disease can give us insider information about our own genetic prospects with hepatitis B.