For years, people with pre-existing conditions like chronic hepatitis B struggled to get health insurance. News stories and Michael Moore’s documentary Sicko highlighted insurance companies’ refusal to cover pre-existing conditions and their practice of inflating premium prices if consumers had chronic health problems.
Outraged by industry efforts to cover only low-cost, “healthy” consumers, lawmakers banned discrimination against pre-existing conditions in the Affordable Care Act (ACA – Obamacare). The ACA’s Healthcare Marketplace website promises, “Your insurance company can’t turn you down or charge you more because of your pre-existing health or medical condition like asthma, back pain, diabetes, or cancer.”
For decades, people living with chronic hepatitis B were told they would be “cured” only when they lost the hepatitis B surface antigen (HBsAg) and developed surface antibodies. It represented the holy grail of recovery that everyone hoped for, but very few achieved.
Today, experts are redefining what constitutes a “functional cure” from chronic hepatitis B and taking the surface antibody out of the equation.
On Tuesday, March 8, more than 120 advocates from across the U.S. fanned out on Capitol Hill to talk to their representatives about the importance of funding the Viral Hepatitis Division of the U.S. Centers for Disease Control and Prevention (CDC). Dozens of people laid their hearts on the line and told their stories about how they, their families, and friends have been touched by hepatitis.
In meetings with Congressional staff, and in some cases their senators, they shared stories about family members who discovered they had hepatitis B only when they were diagnosed with late-stage, inoperable liver cancer. Others talked about how lucky they were to have been immunized at birth, considering their mothers were infected. Courageous advocates described losing loved ones to hepatitis B and C spread through the heroin epidemic, and recalled indifferent healthcare workers who saw only addicts instead of human beings who had lost their battle with both addiction and hepatitis.
Our goal was to get our representatives to allocate more funding for CDC’s hepatitis division, which is sorely needed. It’s CDC’s job to investigate disease outbreaks and educate the public and healthcare providers about infectious disease. For example, CDC publishes a variety of reports and promotional materials to educate people how to protect themselves against hepatitis B and C. The agency also funds a “hepatitis coordinator” in nearly every state whose job it is to help prevent hepatitis, investigate outbreaks, and collect data—a Herculean task for just one person. Continue reading "“Hepatitis on the Hill” Advocates Fight for Hepatitis Prevention, And So Can You"→
Join Hep B United for a national hepatitis B awareness campaign. Create an action-oriented awareness message about hepatitis B through a six-second Vine video! Hep B United will use selected video entries in its social media efforts in May 2016 to help promote Hepatitis Awareness Month. Your video could be included in its national awareness campaign!
Eligibility: Anyone and everyone may participate! You do not have to be a member of Hep B United or any organization.
What to Do: Use Vine to create a six-second video (click for example) focusing on the 2016 theme “#HepBUnite: How you unite for hepatitis B.” You can create your video alone, or with a group. Your message should focus on how you are united around hepatitis B. You could highlight hepatitis B prevention activities that you participate in, or feature a key fact about hepatitis B in your video. Although not required, Hep B United encourages you to use the materials available from the Know Hepatitis B campaign!
How to Enter:
Between April 11 and April 29, post your video to either Vine, Facebook or Twitter. Be sure to include the hashtag “ #hepbunite” and tag @HepBUnited.
Submit your video link with your name and contact information by e-mail to email@example.com.
Contest Entry Requirements
Each video must be original.
Each video must include the hashtag “#hepbunite” and tag @HepBUnited on Twitterand/or Facebook in order to track the videos.
Videos should not include any material that would require the consent of any third party or violate any copyright, privacy right, or any other right of a third party. If used, Know Hepatitis B campaign materials should be used in their entirety and retain the CDC and HBU logos.
Submissions including offensive language, imagery or themes will be excluded from the competition.
Be Creative and Have Fun!
Be creative to get across your hepatitis B awareness message!
Need inspiration? Looking for video ideas? Consider “linking arms,” “flexing your muscles to combat hep B,” “running in a group,” “group high five,” or “shout out with office staff/community groups!”
A few weeks ago, an ill-informed New England governor proclaimed illegal immigrants were bringing in infectious diseases, including hepatitis, HIV, and tuberculosis. Recently, similar anti-immigration, fear-mongering from presidential candidates has filled the airways.
For hundreds of years, disease has been used as reasons to stop immigration to the United States. During the early 1800s, officials claimed the Irish brought cholera into the country. The Italians were believed to carry polio and tuberculosis was called the Jewish disease. In 1900, the Asian-American community in San Francisco was believed to be infected with bubonic plague that posed a threat to public health. Residents were subjected to mandatory injections with an experimental drug until a court order halted the local public health campaign.
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"→
Medical guidelines suggest that individuals with HBeAg-negative hepatitis B with signs of liver damage face an “indefinite” or even lifetime commitment to taking daily antiviral pills.
In this week’s blog, we explore when—if ever—individuals with hard-to-treat HBeAg-negative hepatitis B can ever stop taking antivirals.
First of all, what is HBeAg-negative hepatitis B? Many people infected with hepatitis B at birth and who remain infected into their 40s, 50s or 60s, develop HBeAg-negative hepatitis B. Researchers believe that over time the virus mutates to evade the immune system. Though individuals may have lost the hepatitis B “e” antigen (HBeAg) and developed the “e” antibody, this mutated virus develops the ability to keep replicating despite the loss of HBeAg. And this mutated virus is capable of putting people at higher risk of liver damage.
Generally, doctors recommend treatment to HBeAg-negative patients when their viral load exceeds 2,000 IU/ML and their ALT liver enzyme levels, which rise when liver cells are damaged, are even moderately elevated. (Normal ALT levels are less than 30 for men and 19 for women.)
The most common antiviral treatments are either entecavir (Baraclude) or tenofovir (Viread). These two are considered the most powerful at quickly reducing viral load (HBV DNA) and have a very low risk of causing drug resistance, which is critical considering the long-term treatment required by HBeAg-negative patients.
But can individuals with HBeAg-negative hepatitis B ever stop treatment? Antivirals are expensive, without insurance tenofovir costs about $1,000 a month and generic entecavir costs about $407 in the U.S. Additionally, long-term antiviral treatment can cause bone loss.
Late last year, hepatitis B experts with the American Association for the Study of Liver Disease (AASLD) tackled this question and reviewed recent studies that followed HBeAg-negative hepatitis B patients who stopped antivirals. They found that even when these patients enjoyed two years of undetectable viral load and normal ALT levels during treatment, when they stopped only half of them were able to maintain a low viral low (below 2,000 IU/mL) and normal ALT levels.
The risk of dangerous “flares” after stopping treatment, “requires careful weighing of potential for harm and benefit,” the experts wrote. This is important because many HBeAg-negative patients are older and more vulnerable to liver damage and cancer.
In their new recommendations, AASLD experts make clear their findings are “conditional” and the quality of evidence found in the studies they reviewed is “low.” However, this is what they tentatively recommend:
Stopping treatment, “may be considered in persons who have (lost) the hepatitis B surface antigen (HBsAg). However, there is currently insufficient evidence to definitively guide treatment decisions for such persons.”
And, anyone who stops antiviral therapy should be monitored every three months for at least one year to see if their viral load rebounds or if they have signs of liver damage, including ALT flares.
Given the knowledge-gap about the long-term health consequences of HBeAg-negative hepatitis B, more research with longer durations of monitoring are needed, experts recommended. “Alternative treatment strategies for patients on long-term antiviral therapy, such as adding or switching to (pegylated interferon), warrant further study,” they concluded.
Eighteen years ago, doctors started treating hepatitis B patients with antivirals and today liver specialists have a wealth of knowledge about how these drugs stop the virus from replicating and reduce viral load. But one thing they’re still not certain about is when patients can safely stop taking their daily antiviral pill.
In this week’s blog, we’ll explore when experts think it’s safe for patients, who have lost the hepatitis B “e” antigen (HBeAg) during antiviral treatment, to stop . Next week, we’ll look at when it’s safe for patients who were already HBeAg-negative when they began antiviral treatment to stop.
Today, doctors prescribe one of two antivirals—either entecavir (Baraclude) or tenofovir (Viread). Among the antivirals developed since 1998, these two are considered the most powerful in quickly reducing viral load (HBV DNA) and they carry the lowest risk of drug resistance. Doctors usually prescribe antivirals when our viral load is elevated and we have sign of liver damage–indicated by elevated liver enzymes (ALT or SGPT).
Antivirals quickly knock down viral load, which in turn is believed to lower our risk of liver damage and cancer. But antivirals work for only as long as we take them. When we stop, the virus usually reactivates although this is very rarely fatal or results in a liver transplant. Studies show that at least 78 percent of people who stop antivirals have an increase in viral load, 44 percent have a rise in ALT levels indicating liver damage, and among those who lose HBeAg during treatment, at least 9 percent experienced a return of HBeAg.
But what about individuals who take antivirals for long periods and enjoyed years of undetectable viral load, no signs of liver damage, loss of HBeAg, and development of the “e” antibody? Can they stop? After all, antivirals are expensive. Without insurance, a month’s supply of tenofovir costs about $1,000 and generic entecavir costs about $407 in the U.S., not to mention possible side effects such as bone loss or reduced kidney function with tenofovir..
Late last year, hepatitis B experts from the American Association for the Study of Liver Disease (AASLD) tackled this question and reviewed recent studies that followed patients who stopped antivirals after losing HBeAg. They found no clear answers and made clear their recommendations were “conditional” because the quality of evidence found in the studies was “low.” But here is what they recommend for patients who lost HBeAg during antiviral treatment and now have normal ALT levels:
Experts “suggest” that adults who don’t have cirrhosis (severe liver scarring) who lost HBeAg and developed “e” antibodies may stop treatment after a minimum of 12 months of normal ALT levels and undetectable viral load.
However, they recommend a longer “consolidation” treatment period might be better to reduce patients’ risk of relapse and a return of HBeAg after treatment stops. They suggested that an alternative approach would be to stay on antivirals until patients lose the hepatitis B surface antigen (HBsAg).
Decisions about how long to stay on antivirals require careful consideration of health risks and benefits, they wrote, including risks of relapse, liver damage, and liver cancer. Other considerations include the cost of treatment, the risk of developing drug resistance if people stop antivirals intermittently, and other side effects.
Anyone who stops taking antivirals, they advise, should be monitored frequently – at least every three months — for at least one year for liver damage and resurgence of viral load. Anyone with cirrhosis should continue treatment indefinitely because of their high risk of liver cancer.
For now, the message appears to error on the side of caution and continue on antivirals until you have cleared HBsAg for a prolonged period of time. Clearly this decision is one you must discuss carefully with your doctor.
In next week’s blog, we examine how long people who were HBeAg-negative when they started antivirals should remain on treatment.
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