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"→
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
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"→
Image courtesy of Stuart Miles at FreeDigitalPhotos.net
The majority of people infected with hepatitis B lead healthy and normal lives. However, a small number of people may develop liver disease that will dramatically affect their quality of life and their ability to work on a short-term or long-term basis.
They may not be able to work for several weeks because of side effects from pegylated interferon treatment, or progressive liver damage could make it impossible to work and support themselves and their families even after treatment.
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 connect@hepbunited.org.
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!”
Selected videos will be included in the 2016 May Hepatitis Awareness Month Hep B United social media campaign.
Selected videos will be included in the creation of additional materials promoting hepatitis B awareness around the U.S.
Three finalists will be chosen by a panel of judges as best exemplifying the 2016 #HepBUnite theme.
A Grand Prize winner will be chosen from the three finalists and will win $100. The two remaining finalists will each win $50.
The finalists will be notified by email, and the grand prize winning video will be revealed to the public in mid-May through social media and press releases.
Selected entries will be included in the Hep B United social media campaign! Two finalists will win $50 each!
One Grand Prize winner will win $100!
Submission Period: Post and submit your Vines between April 11 and April 29, 2016, (contest closes at 11:59 p.m. Eastern Time on April 29)
Questions? Please contact Pavitri Dwivedi at Pavitri.Dwivedi@hepb.org
Image courtesy of xedos4 at FreeDigitalPhotos.net.
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.
Image courtesy of Praisaeng, at FreeDigitalPhotos.net.
If you have been diagnosed with chronic hepatitis B, your doctor has probably run several blood tests that show if the infection is harming your liver and identify what stage of infection you are in. Doctors consider all of these results when deciding if you need treatment and how often you should be monitored.
In this blog, we’ll examine how one of the tests — the HBV DNA or viral load test –can give you a snapshot into your hepatitis B infection and your health. The HBV DNA test is performed on a blood sample using a Polymerase Chain Reaction (PCR) technique that rapidly generates HBV DNA fragments so they can be measured. Today, viral load is usually measured using international units per milliliter (IU/mL). However, in the past it was measured in copies per milliliter (copies/mL), and in some regions and labs, it is still used.
If you ever need to convert copies into international units, there are about 5.6 copies in one international unit, so 5,000 copies/mL equals about 893 IU/mL. Remember to keep copies of your lab information on file so you can track your status. An Excel spreadsheet works great.
The sensitivity of HBV DNA tests may vary with each lab so it’s a good idea to use the same lab for your test. Labs usually measure down to less than 200 IU/mL. Below the threshold, the viral load is considered “undetectable” – something everyone with chronic hepatitis B wants to hear.
How HBV DNA results are presented mathematically on your lab report can be confusing. Because the amount of virus in the blood may be very high – in the millions or billions – the result may be displayed as an exponent or a log, rather than a whole number. You may need to convert these numbers to fully understand them.
What does viral load say about what stage of the virus you are in? Your viral load also varies over time depending on the “stage” of hepatitis B infection. That is why regular monitoring is so important.
Children and adults in the “immune tolerant” stage can have viral loads in the millions or even billions. It sounds scary, but it’s not unusual. Your viral load can remain very high for decades until your immune system begins attacking the virus. Most children and young adults who test positive for the hepatitis B “e” antigen (HBeAg) generally have high viral loads, though doctors typically don’t treat patients in this stage. Once their immune systems get rid of HBeAg and generate “e” antibodies (HBeAb), their viral loads begin to decline and liver enzymes (ALT/AST) normalize.
Adults with undetectable or low viral loads and no signs of liver damage are in an “inactive” stage. Adults with normal ALT (SGPT) levels, which usually indicate no current liver inflammation, and undetectable or viral loads less than 2,000 IU/mL generally do not require treatment. However, it is important to confirm with your doctor that there is no evidence of advanced liver disease. This phase may be lifelong, decades, or not long at all. That is why monitoring in this inactive phase remains important.
People in the “active” stage with elevated viral loads and signs of liver damage need treatment. These may be people that are HBeAg positive and unable to seroconvert and lose HBeAg and gain the antibody without experiencing significant liver damage. There may be a pattern of SGPT/ALT elevation that cycles up and down over time without mounting an adequate immune response to seroconvert. This can be dangerous, causing liver damage, which is why regular monitoring is key. You want to give your immune system the opportunity to try to mount an immune response and seroconvert but not at the expense of extensive liver damage. That’s why a knowledgeable doctor is so important!
Many people in their 40s, 50s or 60s, develop HBeAg-negative hepatitis B, though this may occur in younger individuals as well. Although individuals may have seroconverted and lost HBeAg (HBeAg negative/HBeAb positive), the virus is able to mutate allowing it to keep replicating, putting these patients at risk of liver damage. They may see the viral load start to creep up along with SGPT/ALT. Eventually they may require treatment with antivirals based on clinical guidelines doctors follow to manage their patients. Once again, monitoring is key!
Why is it important to measure HBV DNA during treatment? When daily antiviral pills (either tenofovir or entecavir) are prescribed, doctors measure your HBV DNA to see if the drug is working to reduce your viral load. Antivirals work by meddling with the viral DNA so the virus cannot reproduce effectively. Doctors measure your viral load to make sure the antiviral is working.
Why is measuring viral load important if you’re pregnant? Today, all pregnant women are screened for hepatitis B, and experts also want their viral loads to be measured. When pregnant women have high viral loads—exceeding 200,000 IU/mL—medical guidelines recommend antiviral therapy during their third trimester of pregnancy to reduce their risk of infecting their newborns. Babies born to HBV-infected women can become infected even if they are immunized at birth and treated with HBIG (hepatitis B antibodies) if their mothers have high viral loads.
It is important to remember that a viral load test provides you with important information, but it must be considered in relation to your other HBV and liver function tests results to determine if treatment is needed at all, or if you are responding favorably to current treatment. Although an undetectable or low viral load is good news, it does not necessarily guarantee that you have not, or will not experience liver damage. Hepatitis B is a tricky virus. Talk to your liver specialist about all of your test results.
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"→
Image courtesy of Naypong at FreeDigitalPhotos.net
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.
