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Know Your Rights: If You Suffer Severe Liver Damage from Hepatitis B, You May Qualify for SSDI or SSI

 Image courtesy of Stuart Miles at FreeDigitalPhotos.net
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.

Below is information that can help you, your family members, or someone you advocate for apply for disability benefits to help them during when they can’t work due to hepatitis B-related health problems. The first step is to find out if you can meet the Social Security Administration’s (SSA’s) medical eligibility requirements to receive disability support. Continue reading "Know Your Rights: If You Suffer Severe Liver Damage from Hepatitis B, You May Qualify for SSDI or SSI"

Help Stop Insurers from Over-Charging Patients for Hepatitis B Drugs on the Healthcare Marketplace

Image courtesy of Taoty at FreeDigitalPhotos.net
Image courtesy of Taoty at FreeDigitalPhotos.net

By Christine Kukka

Blog reviewed and deemed accurate Jan. 2023.

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.”

While health plans sold on the marketplace can’t openly refuse to insure people with pre-existing conditions, some have devised an insidious way to discourage people with hepatitis B from buying their policies. They have dramatically increased the copays consumers pay out-of-pocket for the two leading hepatitis B antiviral drugs (Viread and generic entecavir) to deliberately make their health plans unaffordable for people with chronic hepatitis B. Continue reading "Help Stop Insurers from Over-Charging Patients for Hepatitis B Drugs on the Healthcare Marketplace"

Forget Surface Antibodies, If You Have Both Undetectable Viral Load and HBsAg, You Might Be Functionally “Cured”

Dr. Robert Gish
Dr. Robert Gish

By Christine Kukka

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.

Researchers, including expert Dr. Robert Gish, suggest if people have an undetectable viral load (HBV DNA), undetectable HBsAg, and no signs of liver damage, they may be “functionally cured,” even if they haven’t developed surface antibodies. The cure is called “functional” because the only cure for hepatitis B is when the immune system controls or suppresses the virus. Continue reading "Forget Surface Antibodies, If You Have Both Undetectable Viral Load and HBsAg, You Might Be Functionally “Cured”"

Taking Antivirals Long-Term for Hepatitis B? Should You Worry About Bone Loss?

Image courtesy of Sira Anamwong at FreeDigitalPhotos.net.
Image courtesy of Sira Anamwong at FreeDigitalPhotos.net.

By Christine Kukka

To prevent liver damage and cirrhosis and reduce the risk of liver cancer–especially in older patients who’ve had hepatitis B for decades–doctors often prescribe long-term antiviral treatment. But some antivirals cause minor bone loss, which poses a problem for older patients with osteoporosis.

According to experts, the risk of bone loss from long-term antiviral treatment is low, and in fact some antivirals do not cause any bone loss at all. But if you are starting antivirals at an older age, or if you have been on antivirals long-term, experts recommend you monitor your potassium and vitamin D levels and regularly test for bone loss in the hip area so you know if you are experiencing bone loss and need a calcium or vitamin D supplement. Continue reading "Taking Antivirals Long-Term for Hepatitis B? Should You Worry About Bone Loss?"

“Hepatitis on the Hill” Advocates Fight for Hepatitis Prevention, And So Can You

Hepatitis on the Hill advocates, March 2016.
Hepatitis on the Hill advocates, March 2016.

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"

Make a Vine Video with #HepBUnite for the 2016 Hepatitis B Awareness Campaign!

hepb-united-btn

 

How do you unite for hepatitis B?      VINE TO WIN!

 

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:

  1. 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.
  2. Submit your video link with your name and contact information by e-mail to connect@hepbunited.org​.

Contest Entry Requirements

  1. Each video must be original.
  2. Each video must include the hashtag ​“#hepbunite” and tag @HepBUnited on Twitterand/or Facebook in order to track the videos.
  3. 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.
  4. 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!”
  • Check out the ​Hep B United or ​Know Hepatitis B Campaign website for background statistics and resources you can use!

Selection of Winners and Prizes

  • 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

The Ugly Intersection of Prejudice, Immigration, and Hepatitis B

By Christine Kukka

 Image courtesy of xedos4 at FreeDigitalPhotos.net.
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.

Throughout the 19th and 20th century, “politics was saturated with attacks on immigrants as diseased intruders to the body politic,” wrote American University history professor Alan M. Kraut in Foreign Bodies: The Perennial Negotiation over Health and Culture in a Nation of Immigrants. This dialogue led to revision of the 1882 Immigration Act to exclude, “persons suffering from a loathsome or a dangerous contagious disease” from entry into the United States. Continue reading "The Ugly Intersection of Prejudice, Immigration, and Hepatitis B"

Diagnosed With Chronic Hepatitis B? What Does Your HBV DNA Test (Viral Load) Tell You?

Image courtesy of Praisaeng, at FreeDigitalPhotos.net.
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.

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"

Can People with HBeAg-Negative Hepatitis B Ever Stop Taking Antivirals?

Image courtesy of rakratchada torsap, at FreeDigitalPhotos.net.
Image courtesy of rakratchada torsap, at FreeDigitalPhotos.net.

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.