A new page has been created on the Hepatitis B Foundation’s website that contains a compilation of various opportunities available for people living with hepatitis B. These opportunities can be for clinical trials, other types of research, or toolkits with information and resources for those living with hepatitis B and their loved ones and community members. All of these postings are produced or organized by entities external to HBF, but all are related to improved quality of life and liver health. The first two of these opportunities are listed below.
New Tool from CME Outfitters
A new HBV Patient Education Hub has been compiled by continuing medical education company CME Outfitters. The hub includes a great deal of valuable information, such as an overview of hepatitis B, a list of questions to ask your healthcare provider, a patient guide, information about hepatitis B co-infection, doctors’ advice on what to expect from treatment, and many other resources. All information is in an engaging and accessible format. Check it out today!
New Study Opportunity Available for People Living with Itching (Cholestatic Pruritus) Due to Liver Disease or Injury
A new paid opportunity has become available for those experiencing itching caused by hepatitis B, hepatitis C, drug-induced liver injury, auto-immune hepatitis, or primary sclerosing cholangitis (PSC). If you live in Canada or the US and have this condition, you may be eligible to participate in an interview to help researchers better understand your lived experience. The new research study is seeking participants ages 12-80 living in the US and Canada who are living with this itch. This is an opportunity to be involved in research and help advance scientific understanding! Contact the research coordinator for more information and to check if you are eligible.
Please note that this study does not include treatment and pruritus must be at an intensity level of 4 on a scale of 1-10 for at least the past 8 weeks in order to participate. Patients cannot be pregnant or breastfeeding or have a diagnosis of primary biliary cholangitis.
We are very excited to unveil this new section of our website and hope it will be a useful resource for many going forward! Please check back often, as more opportunities will be posted as they arise.
Meet Edwin Tan – a 29-year-old mechanical design engineer from Minneapolis, Minnesota! In 2014, Edwin was diagnosed with hepatitis B. Like many others living with hepatitis B, his diagnosis was a shock. Before his diagnosis, all he knew was that he was banned from giving blood to the Red Cross, but no one had explained the reason why. A routine blood test provided no explanations either, so his doctor decided to test for hepatitis B. The test revealed that Edwin was living with chronic hepatitis B.
After his diagnosis, Edwin decided to learn all that he could about the infection. Through his research, he found that one of the best ways to keep his liver healthy was through small lifestyle changes. Edwin began to pursue healthier life choices by increasing the amount of exercise he was getting and paying closer attention to his diet. Although he loved craft beer, he knew that drinking could be extremely dangerous to those with liver infections, so he willingly gave up all alcohol. Edwin’s dedication to a more active lifestyle led him to challenge himself by competing in local races and triathlons.
Edwin’s journey led him to realize that there is a lack of awareness about hepatitis B. He noticed that the stigmas facing those living with hepatitis B could take a physical and mental toll on an individual and impact how they viewed themselves. Edwin’s observations inspired him to reach out to the Hepatitis B Foundation to raise money and awareness for hepatitis B research, patient outreach, and education. Since his passion for racing was discovered due to his commitment to health after his diagnosis, it seemed appropriate for him to use his love of sports to fundraise for hepatitis B awareness and research! He hopes that his athletic achievements help others living with hepatitis B to realize that they are more than their infection.
Now, Edwin is training for a series of six races—triathlons, a marathon and an ironman – and we’ll be with him every step of the way! You can make a gift to support Edwin’s fundraising efforts here.
“I want to be a positive example against the stigma associated with Hep B and the shame that some people may feel for having it. Completing an Ironman, which is regarded as one of the most difficult one-day athletic events, serves as a good example that we each can accomplish anything we want as long as we believe in ourselves.”
Have you recently been told you have hepatitis B? Dealing with the diagnosis and waiting out the next six months to determine if your infection will resolve itself or learning that it is a chronic infection can be nerve-wracking.
Fortunately, greater than 90 percent of healthy adults who are newly infected will clear or resolve an acute hepatitis B infection. On the hand, greater than 90% of babies and up to 50% of children infected with hepatitis B will have lifelong, chronic infection. Sometimes people are surprised to learn they have a chronic infection. It can be confusing since there are typically few or no symptoms for decades. If a person continues to test hepatitis B positive for longer than 6 months, then it is considered a chronic infection. Repeat testing is the only way to know for sure.
Acute hepatitis B patients rarely require hospitalization, or even medication. If you are symptomatic, (some symptoms include jaundice, dark urine, abdominal pain, fever, general malaise) you may be anxiously conferring with your doctor, but if you are asymptomatic, you might not feel compelled to take the diagnosis seriously. Ignoring your diagnosis can be very serious. If you have concerning symptoms like jaundice (yellow eyes and skin), a bloated abdomen or severe nausea and vomiting, please see your doctor immediately. Your doctor will be monitoring your blood work over the next few months to see if you clear the virus, or monitoring your liver if there are concerning symptoms.
Your job is to start loving your liver …today. STOP drinking alcoholic beverages. Refrain from smoking cigarettes. Your liver is a non-complaining organ, but you cannot live without it. Make your diet liver-friendly and healthy filled with a rainbow of vegetables and fruits, whole grains, fish and lean meats. Minimize processed foods, saturated fats and sugar. Drink plenty of water.
Talk to your doctor before taking prescription medications, herbal remedies, supplements or over-the-counter drugs. Some can be dangerous to a liver that is battling hepatitis B. Get plenty of rest, and exercise if you are able.
Don’t forget that you are infectious during this time, and that loved ones, sexual partners and household contacts should be tested to see if they need to be vaccinated to protect against hepatitis B. Sometimes family members or close household contacts may find that they have a current infection or have recovered from a past HBV infection. If anyone fears exposure, ensure them that hepatitis B is not transmitted casually. They should get tested, and vaccinated if needed, and take simple precautions. Remind them that 1/3 of the world’s population will be infected with the hepatitis B virus during their lifetime.
On the flip-side… Do not let this new hepatitis B diagnosis consume you. As the weeks and months pass, you might find that the infection is not resolving, and you might worry that you have a chronic infection. The associated stress and anxiety can be challenging, even overwhelming. It can contribute to physical symptoms you may be experiencing. Find a family member, friend, or health care professional with whom you can share your concerns.
If you are told you have recovered from an acute HBV infection (you are now HBsAg negative, HBcAb positive and HBsAb positive) be sure to get copies of your lab reports to ensure there are no mistakes. Compare them with our easy to use blood tests chart. If something looks wrong, or if you’re confused, speak up and ask your doctor. Once confirmed, be sure to include hepatitis B as part of your personal health history. This is important in case you have conditions requiring treatment later in life that might once again warrant monitoring of your hepatitis B. It is possible for a past HBV infection to reactivate if a person requires longterm immune suppressing drugs .
No one wants to learn they have chronic hepatitis B but it is a manageable disease. You’ll want to see a doctor with experience treating chronic HBV so they can run additional tests. There are very effective treatments available, though not everyone with chronic HBV needs treatment. All people living with chronic HBV benefit from regular monitoring since things can change with time. Please do not panic or ignore a chronic hepatitis B diagnosis. Take a deep breath and get started today learning more about your HBV infection and the health of your liver. Things are going to be okay!
If you are confused about your diagnosis, please feel free to contact the Hepatitis B Foundation at firstname.lastname@example.org.
“We will long remember Ted Slavin as a gallant man who loved life and who contributed greatly to our research efforts”
-Baruch S. Blumberg, Irving Millman, W. Thomas London, and other members of the Division of Clinical Research Fox Chase Cancer Center, 19851
“Who is Ted Slavin? Why haven’t I heard about him before?” crept into my mind as I was reading The Immortal Life of Henrietta Lacks. Rebecca Skloot wrote a short snippet about Ted Slavin, detailing the story of a hemophiliac who sold his antibodies and aided Dr. Baruch Blumberg in the discovery of the link between the hepatitis B virus and liver cancer, which eventually led to the first hepatitis B vaccine.2 I was surprised that I had never heard of him, and that his name was not enshrined on the walls of the Hepatitis B Foundation. I see the smiling and jovial face of Dr. Blumberg nearly every time I walk into the office, but never the image of a man who contributed so much to his efforts.
Ted Slavin developed antibodies against hepatitis B after receiving infected blood transfusions to treat his hemophilia. The blood he received back in the 1950s was not screened for any diseases. His doctor helped him realize that his blood was valuable because of the copious amounts of antibodies for hepatitis B. At the time, those antibodies were a hot commodity as scientists were conducting research to learn more about hepatitis B prevention and treatment. Slavin decided to the sell his antibody-rich blood and even donated his blood to Dr. Blumberg’s research team at Fox Chase Cancer Center. He later formed Essential Biologicals, a company that collected blood from others like him. They were everyday patients who could turn their rare or unique blood into money making products, while at the same time advancing important research into diseases that were not well understood.2
As I read the brief overview of Slavin’s life, I initially perceived him as someone who was both lucky and smart: Slavin was lucky because his doctor gave him information on the value of his antibodies2; and smart because he knew how to make the best of something once considered a burden in his life.3 As I did a little more detective work, I realized Ted Slavin was not just a guy who made money off his cells, but someone who contributed to the fight against the hepatitis B virus, which I am passionate about!
My detective work led me to a deeper understanding of Mr. Slavin and his contribution to important milestones on the road to hepatitis B elimination.3,4,5,6,7 I found discussions and case studies on the ethics associated with his circumstance. Through my research journey, I learned more about him and my perception of Slavin started to change. He was, like many, struggling to make ends meet. He didn’t entirely profit off his antibodies because he donated a majority of the money he made to advance scientific research.4 At the same time, Slavin was “hopeful for a cure,” and he trusted Dr. Blumberg, his favorite researcher among the many studying hepatitis B, with his antibodies.1 To Dr. Blumberg and the researchers working with him, Ted Slavin was a brave, courageous man who helped save millions of lives.1
The story of Ted Slavin, like that of Henrietta Lacks, is not only a reminder of the importance of bioethics and the need for public health and scientific research; his story reminds us there is an invisible face behind every success. Because of Ted Slavin, there are tests to diagnose hepatitis B, ways to detect liver cancer linked to hepatitis B, and the first cancer preventative vaccine!
For more information about the hepatitis B vaccine, please visit our website here.
In the U.S. and around the world, the medical community is finally acknowledging a hidden threat to people with hepatitis B – a virulent liver coinfection that requires the presence of the hepatitis B surface antigen (HBsAg) to survive.
Hepatitis D (Delta), which causes the most severe liver infection known to humans, infects between 15 to 20 million people worldwide and an estimated 20,000 people living with chronic hepatitis B in the U.S.
For years, health officials assumed hepatitis D did not threaten Americans and occurred primarily in Central Asia and Sub-Saharan Africa. However, recent U.S. Centers for Disease Control and Prevention (CDC) studies found 4 to 5 percent of Americans with chronic hepatitis B are also infected with hepatitis D.
As a result of these findings, researchers including Hepatitis B Foundation‘s Medical Director Dr. Robert Gish, are now pushing medical organizations to establish hepatitis D testing and monitoring guidelines so doctors will start testing patients for this dangerous liver disease.
Recently, the foundation sponsored a webinar, attended by dozens of healthcare providers, patients and officials from around the world, in which Dr. Gish outlined whom should be tested for hepatitis D, and how it should be treated. A new webinar that examines hepatitis D prevalence in the U.S. is scheduled for 3 p.m. (EST), Wednesday, June 28. To register for the webinar click here.
How do people get infected with hepatitis D? Infection occurs when people are exposed to blood and body fluids from someone with an active hepatitis D infection. Basically, they get both hepatitis B and D in one exposure. This is called an acute coinfection. Some healthy adults are able to clear both infections, but they often experience serious liver damage during the clearance or recovery phase.
Another way to become infected is if someone infected with chronic hepatitis B is exposed to someone with hepatitis D. This is called a superinfection, and in 90 percent of cases, people with chronic hepatitis B will also develop chronic hepatitis D.
Who is at risk of hepatitis D? Anyone with chronic hepatitis B who themselves or their family comes from Sub-Saharan Africa, China, Russia, Middle East, Mongolia, Romania, Georgia, Turkey, Pakistan and the Amazonian River Basin should be tested. Hepatitis D rates in some of these countries can reach up to 30 percent in people infected with chronic hepatitis B.
What medical conditions suggest hepatitis D? Anyone with chronic hepatitis B who is not responding to antiviral treatment, or who has signs of liver damage even though they have a low viral load (HBV DNA below 2,000 IU/mL) should be tested. Fatty liver disease (caused by obesity) and liver damage from alcohol or environmental toxins should be ruled out before testing for hepatitis D.
Often, people with hepatitis D have low viral loads (even if they are hepatitis B “e” antigen HBeAg-positive), but they have signs of liver damage, including elevated liver enzyme (ALT/SGPT) levels.
Do hepatitis B antivirals work against hepatitis D? No. The hepatitis D virus (HDV) is structurally different from the hepatitis B virus (HBV) and does not respond to tenofovir and entecavir used to treat hepatitis B. Hepatitis B antivirals will lower HBV DNA, but they don’t reduce HBsAg, which HDV need to thrive and reproduce.
How is hepatitis D treated? The only proven hepatitis D treatment is pegylated interferon. Interferon cures hepatitis D 15 to 25 percent of the time after one year of treatment. Once interferon clears hepatitis D, doctors treat patients who continue to be infected with HBV with antivirals. There are dozens of research companies now looking into hepatitis D treatment, and if researchers can find a cure for hepatitis B that eradicates HBsAg, it will also be effective against hepatitis D.
How should people with hepatitis D be monitored? According to Dr. Gish, doctors should:
Monitor patients’ ALT/SGPT and liver function at least every six months
Perform an ultrasound of the liver and conduct a liver cancer biomarker panel (including AFP, AFPL3% and DCP) every six months;
And, perform viral load (HBV DNA) and HDV RNA testing every six months.
How is hepatitis D prevented? The hepatitis B vaccine prevents hepatitis D infection, as does use of safe sex and safe injection practices. According to Dr. Gish, all hepatitis B-positive pregnant women should be tested for hepatitis D if they or their families are from a country with high rates of hepatitis D, or if they have signs of liver damage — even if they do not come from a region with high hepatitis D rates.
If a pregnant woman is infected with either hepatitis B and/or hepatitis D, immunizing her newborn with the first dose of the hepatitis B vaccine within 12 hours of birth and giving the baby a dose of HBIG (hepatitis B antibodies) will prevent both infections.
Bottom line, if you are infected with chronic hepatitis B, you should be tested for hepatitis D if:
You or your family comes from a region with high rates of hepatitis D; and/or
You have a low viral load, but you continue to have signs of liver damage, indicated by elevated ALT/SGPT or an ultrasound exam of your liver, if your doctor has ruled out fatty liver, NASH or alcohol-related liver damage.
Talk to your doctor about getting tested. Click here for a hepatitis D fact sheet to give to your doctor and click here for a patient-oriented fact sheet. An affordable hepatitis D test has recently become available in the U.S. For more information, click here.
Find answers to frequently-asked-questions about hepatitis D here.
To watch the webinar featuring Dr. Gish discussing the hidden, hepatitis D epidemic, click here.
A recently-approved test now allows doctors to measure exactly how much hepatitis B surface antigen (HBsAg) people with chronic hepatitis B have in their blood; so why should patients get this test and how will it help the millions of people around the world infected with hepatitis B?
According to experts, including the Hepatitis B Foundation’s Medical Director Robert Gish, knowing a patient’s HBsAg levels gives doctors:
A better understanding of what stage of hepatitis B a patient is in;
A more accurate assessment of a patient’s liver cancer risk; and
Essential information to judge if it’s time to start or stop treatment.
And in the future, this test may be critical to finding a cure.
Don’t labs already test for HBsAg? HBsAg, the protein that makes up the surface of the virus, is what labs look for in a blood sample to determine if a person is currently infected with hepatitis B.
Historically, labs determined only if HBsAg was present or not, which is why patients either tested positive or negative for HBsAg. Recently, countries outside the U.S. began measuring HBsAg quantities in blood samples and late last year became available in the U.S. as a federally-approved (CLIA) lab test from Quest Diagnostics.
“The strange thing about HBsAg, is that each hepatitis B virus requires only about 100 HBsAg molecules to provide its envelope protein, but the virus produces about 100- to 1 million-times more HBsAg than is needed, leaving millions of HBsAg circulating in the bloodstream,” explained Timothy Block, president of the Hepatitis B Foundation and the Baruch S. Blumberg Institute, the foundation’s research arm.
That over-abundance of HBsAg is why people continue to test positive for HBsAg even if they have an undetectable viral load (HBV DNA).
Why is there so much HBsAg? Researchers, including Block, suspect that in addition to covering the virus’ surface, HBsAg also serves as a decoy to “exhaust” or deflect our immune system’s:
T-cells, so they can’t attach to and attack the virus,
And B-cells, so they don’t generate the antibodies needed to destroy the viral antigens that make up the virus.
So when HBsAg levels decline–either due to treatment or a strong immune response to the infection–researchers know a patient is on the road to clearing the infection. Bottom line: A low or undetectable HBsAg level means patients are winning the war against hepatitis B and their risk of liver damage is greatly reduced.
When should doctors measure HBsAg? According to Quest Diagnostics, which created the test, measuring HBsAg levels better identifies which patients are at risk of hepatitis B reactivation.
For example, a patient may be HBeAg-negative and have normal liver enzymes (ALT/SGPT) that indicate a liver is “healthy,” but if HBsAg remain high, doctors know a patient remains at risk of reactivation and hasn’t really entered the safer, “inactive” stage.
Quest maintains that measuring HBsAg and viral load (HBV DNA) together, “…improves the ability to differentiate the phases in HBeAg-negative patients and HBeAg-positive disease and results in a diagnostic accuracy of 70 to 94 percent.”
According to Quest, patients with HBV genotype B or C who have low HBV DNA levels (less than 2,000 IU/mL) and HBsAg levels below 1,000 IU/mL have lower risk of liver damage and cancer. In fact, if HBsAg is under 100 IU/mL, patients may be on their way to clearing HBsAg from their blood.
Knowing for sure when treatment is working: HBsAg levels also reflect the amount of virus protein produced by infected liver cells and if treatment is effectively stopping the virus from producing these proteins. If a patient is treated with pegylated interferon, a decline in HBsAg during the first 12 weeks indicates a successful response to the drug. No change in HBsAg levels indicates interferon will not be effective.
HBsAg changes may also determine if antivirals are working. “In HBeAg-negative patients, low (HBsAg) levels at the end of treatment are associated with sustained virologic response,” Quest officials noted.
If patients have been treated with antivirals for many months or years and achieve undetectable viral load and low HBsAg levels, doctors may consider taking them off the drug.
Dr. Gish considers this new test an essential tool that providers should employ and patients should ask for to get an accurate picture of their infection state and liver cancer risk.
“I use it today to determine when to start treatment, assess a patient’s prognosis while on treatment, enhance patient compliance and determine when treatment can be stopped or should be continued,” he explained. “And this will also be an extremely helpful tool for drug developers in the future to identify promising treatments.”
Because lowering or eradicating HBsAg appears essential to stopping chronic infection and empowering the immune system to fight this complex infection, researchers around the world are working to develop treatments that inhibit HBsAg.
“I am a big believer in finding drugs that suppress HBsAg,” Dr. Block noted. Two of these surface antigen eradicator products are currently in Phase II trials.
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 sexual 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 razors, 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 sometimes the birth dose of the hep B vaccine, and more often HBIG, is not always available around the world. The birth dose must be followed with the remaining doses of the vaccine, often given as part of a combination vaccine according to schedule. Here are the U.S. and International hep B vaccine schedules.
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 get rid of 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 there are usually 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. (Tests like ALT/AST, platelets and bilirubin.)
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 need to take precautions during this time to make sure you do not spread the infection to others. Practice safe sex (use a condom), and don’t share personal hygiene items that may have trace amounts of blood on them.
We also suggest that family members, close household contacts and sexual partners get tested for hepatitis B and vaccinated if needed. Have them get the triple hepatitis B panel: HBsAg, HBcAb total and HBsAb. This will tell them if they have a current infection, if they recovered from a past infection, or if they are vulnerable and need to be vaccinated. This helpful chart will help with understanding blood tests. There can be up to a nine-week period right after infection when they may not test positive for HBsAg even if they have been infected. Repeat testing if unsure.
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.
For more than 20 years, I have accompanied my daughter to her annual hepatitis B check-up with her liver specialist. She is 22 and does not need me to come, but I always go out of habit and love.
After the appointment, we sit eating lunch and I talk about how lucky she is that her liver has been healthy and her viral load undetectable for many years. Recently, she started testing negative for the hepatitis B surface antigen (HBsAg). However, she has never developed hepatitis B surface antibodies. Her immune system has cleaned house, but has lacked the power to produce enough surface antibodies to show up on lab tests and declare her free of infection.
With the cost of health care and prescription drugs soaring, it’s important to choose health insurance carefully when you take hepatitis B medications and need frequent check-ups and lab tests.
In the next two months, Medicare recipients, people who get insurance through their jobs and consumers buying coverage through the Affordable Care Act (Obamacare) will be selecting insurance plans during open enrollment.
If you take antivirals or interferon and have frequent lab tests and doctor visits, it’s important that you select the plan that:
Has your specialist or primary care doctor and lab in its network,
And offers the lowest copay for the drugs you need.