Site Search

You searched for "hepatitis D"

• Importance of disclosing your hepatitis B and hepatitis D status

                    Written By: Soumen B., Silvana L., Partizan M.  Thirteen years ago, I experienced a profound shock. My wife was in the third trimester of her pregnancy, and I was eagerly anticipating fatherhood, filled with plans for our future with the baby. As part of routine procedures, we both were asked to undergo various diagnostic tests. One day, the gynecologist unexpectedly called us in for an urgent meeting. I was asked to wait outside while my wife entered the doctor’s office. When she emerged after half an hour, I noticed a deeply worried expression in her eyes. As I greeted her, she responded with a blank stare, as if the world were crashing down around her.   We returned home in silence, and then she broke down in tears. My wife shared with me that my blood test revealed I was infected with hepatitis B. How could this have entered my body? The doctor told my wife that the disease was terminal and that I might not survive for long. Our world began to crumble. I have always been a respectful and loyal family member with minimal alcohol consumption. How could this happen to me?   The most challenging part was figuring out how to explain this to my wife...  After I was diagnosed, I began online research and reached out to a nonprofit organization (Liver Foundation West Bengal). I gathered information about the disease and accessed health support. I then had an open and candid discussion with my wife, free of embellishments. I explained that I was one of millions affected worldwide and that the disease could have been transmitted through less common means, such as unsterile equipment used during a haircut, like razors, at the salon.* She was extremely cooperative and listened patiently. She also helped me confront the stigma and face the reality of the situation. My wife and I looked up more information so that we could learn about hepatitis B. We talked to our doctors to learn about how we can reduce the

  http://www.hepb.org/blog/importance-disclosing-hepatitis-b-hepatitis-d-status/
• An Interview with Hepatitis Delta Advocate, Dr. Carla Coffin

  Since 2016, the Hepatitis B Foundation has run a program called Hepatitis Delta Connect which aims to increase awareness of hepatitis delta and support for those living with the virus. For this month’s blog post, we sat down with Dr. Carla Coffin, a hepatologist in Canada, who is active in the hepatitis delta space. Please introduce yourself and describe what you do and where you work. My name is Dr. Carla Coffin, and I am a hepatologist at the University of Calgary in Alberta, Canada, I am a clinician scientist who does research on hepatitis B and this year I am the president of the Canadian Association for the Study of the Liver. Calgary is the founding/coordinating site for the Canadian Hepatitis B Research Network, which helps lead a collaboration of researchers, scientists, and practitioners across Canada for hepatitis B research and advocacy. How common is hepatitis delta in your location or nationally? That is an excellent question because until relatively recently, we didn't know that much about how common hepatitis delta was in Canada. Most studies were single-site, single-center studies, showing about 1% prevalence overall in people living with hepatitis B. Then the Canadian Hepatitis B Research Network in collaboration with the National Microbiology Lab and the National Reference Lab in Canada did a study, led by Dr. Carla Osiowy, that showed, based on a retrospective screening of cases that were referred for hepatitis delta testing, that the prevalence was about 3% overall. Now, there's more recent data that is consistent with that approximation of about 3%. We are also conducting a study that shows that for people who are being referred for delta screening, their overall positivity is about 4%. These are specific studies, but if you are just looking at universal screening rates of everyone who is living with hepatitis B who is potentially at risk for hepatitis delta, and not necessarily pre-identified, it's much lower, maybe only about 1% or 2%. What

  http://www.hepb.org/blog/interview-hepatitis-delta-advocate-dr-carla-coffin/
• Nargis Speaks about Living with Hepatitis Delta

  The hepatitis delta virus is a sub-virus of hepatitis B that depends on the hepatitis B virus to survive and reproduce. Hepatitis delta affects between 5% and 10% of people living with hepatitis B, and can quickly progress to a more serious and advanced liver disease than HBV alone. Since 2016, the Hepatitis B Foundation has coordinated a program called Hepatitis Delta Connect, which works to raise awareness of hepatitis delta; promote screening, research, and management of the virus; and provide support to individuals living with and affected by the disease. This includes capturing the lived experiences of hep D. This month, Ariana, an intern at the Hepatitis B Foundation, interviewed Nargis, a resident of New York, who is living with hep B and hep D, about her experiences of the viruses, from diagnosis to management. We thank Nargis for sharing her story! Ariana: Thank you very much for joining today! When were you initially diagnosed with hepatitis delta? Nargis: I was diagnosed in 2005. I did my blood work at the end of 2005 and got my result at the beginning of 2006. The reason why I went to do the blood work is because I had very severe flu-like symptoms. Ariana: How did you find out you were living with hepatitis delta? Nargis: I was out of the city for a trip, and felt sick after, so I immediately returned to the city and did blood work and found that it's hepatitis D. I was surprised because I know if you don't have hepatitis B, hepatitis D would never exist in your body.  Ariana: How did you initially feel about it?   Nargis: To be honest, I was depressed. It happened during the best time of my life when my career was at a high point, and I'm feeling like I'm enjoying life and everything is fine. All the difficulties in my life were gone. During that time, I was at the top of the level of my career and I could do something for myself and for my family. And I had big plans, and when I was diagnosed with hepatitis B, all my plans just collapsed. My doctor

  http://www.hepb.org/blog/hdvinterview/
• The Provider’s Perspective on Hepatitis Delta: A Conversation with Ilan Weisberg, MD

  Dr. Ilan Weisberg is a highly acclaimed gastroenterologist and hepatologist currently serving as the Chief of Gastroenterology and Hepatology at New York-Presbyterian Brooklyn Methodist Hospital. He shares the Hepatitis B Foundation’s enthusiasm for advocacy and education surrounding hepatitis B and D, and was eager to provide the perspective of a healthcare provider on the current state of hepatitis delta screening and management, as well as some common misconceptions. A Shift in Provider Awareness and Knowledge One of the first topics Dr. Weisberg spoke about was how unaware he was about hepatitis delta until recently. He discussed the ongoing issues with a general lack of knowledge about hepatitis delta in the United States, and how this is the most common reason for many of the current challenges seen today. When asked what led to his and other providers’ shift in knowledge, he credited the improvements with hepatitis C awareness and treatment with some of the shift, as well as the potential for new treatments for hepatitis B and D. “Every time there is a promise of a treatment or a cure or intervention, then I think it helps engender more enthusiasm for screening.” Hepatitis Delta Prevalence and Screening Practices Dr. Weisberg sees hundreds of patients who are living with hepatitis B virus (HBV). New York, and especially Brooklyn, have so many cultural communities coming from countries where hepatitis B is common. Hepatitis D is a much smaller percentage of his patient population. Dr. Weisberg was a co-author on a study that looked back through electronic medical records (EMRs) for all hepatitis B surface antigen positive (HbSAg+) patients at his former health system to identify how common hepatitis delta virus (HDV) testing and prevalence were. Across the entire health system only about 12% of HbSAg+ patients were tested for delta and among those individuals there was a 4% positive rate for HDV (Nathani et al., 2023). One particularly concerning part

  http://www.hepb.org/blog/providers-perspective-hepatitis-delta-conversation-ilan-weisberg-md/
• Drug Profile: Three Hepatitis Delta Therapies That We Hope to See Widely Available Soon

          The full extent of hepatitis delta’s (HDV) global disease burden is still unknown and treatment options for HDV have been limited. However, there are three promising up-and-coming drugs to treat HDV patients. This blog post details the drugs’ current phase of development and testing, how well they work for patients in the real world, and their current path toward regulation and market availability.  Bulevirtide (Hepcludex)  Gilead Sciences Inc. has been seeking approval from the U.S. Food and Drug Administration (FDA) for bulevirtide, or Hepcludex, since 2021. In 2020, Gilead acquired MYR, a German pharmaceutical company that had developed the hepatitis delta virus (HDV) drug. At the time that it was acquired, Hepcludex had already been conditionally authorized for use in Germany, France, and Austria (MYR Pharmaceuticals, 2020). Gilead, which is based in California, in the U.S., hoped to accelerate the global launch of Hepcludex. Since then, however, Hepcludex remains in regulatory limbo. In October 2022, the FDA announced the rejection of Hepcludex, citing concerns around the manufacturing and delivery of the drug. Gilead responded by stating that they plan to resubmit Hepcludex for approval as soon as possible (Dunleavy, 2022). Six months after the FDA rejection, the Committee for Medicinal Products for Human Use, which is the European Medicines Agency’s (EMA’s) committee responsible for conveying its opinions on medicinal products to the public, stated that it recommends Hepcludex for full marketing authorization in Europe. Since its conditional approval, a Phase 3 trial (which utilized data from patients in Germany, Italy, Russia, Sweden, and the U.S.) has shown it to be safe and effective for HDV patients. If the European Commission fully approves Hepcludex, it will be the only authorized HDV treatment available in Europe (Dunleavey, 2023).   Lonafarnib  At the end of 2022, Eiger Biopharmaceuticals announced that

  http://www.hepb.org/blog/drug-profile-three-hepatitis-delta-therapies-hope-see-widely-available-soon/
• Presentations

  Hepatitis Delta Virus: A Silent Threat to PWIDs Poster Presentation NORD Rare Disease Summit Poster Presentation

  https://www.hepb.org/research-and-programs/hepdeltaconnect/resources/presentations/
• Blog Posts

  Why Is Hepatitis Delta So Hard to Eliminate? What You Need to Know About the 2022 Liver Meeting and How it Relates to Hepatitis Delta What's the Difference? Herbal Remedies and Supplements vs. Western Medicine Results from Hepatitis Delta Clinical Trials Announced at 2022 International Liver Congress Recent Roundtable Discussion Highlights Hepatitis Delta Virus 2022 - The Year of Hepatitis Delta Hepatitis B and Hepatitis Delta Eiger Presents Clinical Trial Results at the Liver Meeting Digital Experience 2020 New Drug to Treat Hepatitis Delta Approved by European Commisssion Does Hepatitis Delta Increase My Risk for Liver Cancer? Hepatitis Delta: Coinfection vs Superinfection I Have Hepatitis B. Could I Also Be Infected with Hepatitis Delta? The Medical Community Wakes Up to a Dangerous Threat to People with Hepatitis B – Coinfection with Hepatitis D

  https://www.hepb.org/research-and-programs/hepdeltaconnect/resources/blog-posts/
• Contact Us

  Have questions about hepatitis delta or our program? Please contact us! Thanks for your message! We will be in touch with you as soon as we can.

  https://www.hepb.org/research-and-programs/hepdeltaconnect/contact-us/
• FAQ

  Hepatitis delta is the most severe form of viral hepatitis and only affects people who are also infected with or at risk for hepatitis B. It is caused by the hepatitis delta virus (HDV), which needs the hepatitis B virus (HBV) to survive. Someone can only be infected with hepatitis delta if they are also infected with hepatitis B or if they contract both at the same time. A coinfection (infection with both HBV and HDV) usually promotes more rapid progression to cirrhosis (liver scarring) and liver cancer than being infected with hepatitis B alone. Conventional treatments used for hepatitis B have no effect on hepatitis delta, so it is important for hepatitis B patients to also be tested for hepatitis delta so their providers can make appropriate management and treatment recommendations.  In order to reproduce in liver cells, hepatitis delta requires hepatitis B’s surface protein, called the hepatitis B surface antigen (HBsAg). In cases of coinfection, the hepatitis delta virus becomes the dominant virus, using the HBsAg from the hepatitis B virus to survive and replicate. Yes, hepatitis delta is the most severe form of viral hepatitis and can accelerate the risk of liver damage, cirrhosis (liver scarring), and liver cancer. Seventy percent of people with hepatitis B and delta will develop serious liver damage. In contrast, only 15 to 30 percent of people living with hepatitis B do. Someone can acquire hepatitis delta in one of two ways. A “coinfection” is when hepatitis B and hepatitis delta are contracted at the same time. A “superinfection” is when someone who is already infected with chronic hepatitis B then becomes infected with hepatitis delta. Most adults will clear both viruses with a “coinfection,” while those who contract hepatitis delta as a “superinfection” have a 70-90% chance of developing a chronic infection of both viruses. The most important thing to remember is that hepatitis delta cannot be contracted on its own.   Globally 15-20 million people are thought to be affected, although a recent meta-analysis suggested there may be as many as 62–72 million coinfections. In the United States, approximately 60,000-150,000 people are thought to be living with hepatitis B and delta.   Hepatitis delta is estimated to affect approximately 5% of people already living with chronic hepatitis B globally. In the United States this correlates to fewer than 250,000 coinfections, and classifies it as a rare disease by the National Institutes of Health (NIH). Hepatitis B and delta coinfection is more common in certain parts of the world including India, Mongolia, Romania, Russia, Pakistan, the Middle East, Georgia, Turkey, West and Central Africa, and the Amazonian River Basin. Globally 15-20 million people are thought to be affected, although a recent meta-analysis suggested there may be as many as 62–72 million coinfections.  Prevalence of Hepatitis Delta in the World  Wedemeyer, Journal of Hepatology, 2018 Because hepatitis delta requires someone to also have hepatitis B, the best way to prevent an infection is by getting the hepatitis B vaccine series. Family members and sexual partners of people with hepatitis B and delta are high-risk and should be vaccinated. The hepatitis B vaccine is a series of 2 -3 shots usually given over a 6-month period and is available at a doctor’s office, health department or STI clinic. Click here for vaccine resources. For those already infected with chronic hepatitis B, you can protect yourself from hepatitis delta by having protected sex (sex with a condom), and avoiding potential blood exposures. For more prevention tips, click here.  The Hepatitis B Foundation recommends that all people living with chronic hepatitis B be tested for hepatitis delta. This is a simple blood test. People at the highest risk for hepatitis D are those from highly endemic regions of the world including Mongolia, Romania, Russia, Georgia, Turkey, Pakistan, India, the Middle East, parts of Africa, and the Amazonian River Basin. If someone with chronic hepatitis B is not responding to antiviral treatment, or has signs of liver damage even though they have a low viral load (HBV DNA below 2,000 IU/mL), they should be tested for hepatitis delta. Fatty liver disease (caused by obesity) and liver damage from alcohol or environmental toxins should be ruled out as causes of liver damage. The first blood test is for the HDV antibody. If someone tests positive for the HDV antibody, they may have a past or current infection, and should then be tested for HDV RNA to determine if their infection is active. A quantitative RNA test is now commercially available in the U.S., so be sure to check with your doctor about this new test. For more testing resources, visit the Testing & Diagnosis page. For more information about HDV RNA testing outside the U.S., visit the CDC website. For many years, researchers believed that global rates of hepatitis delta infection were declining. As a result, there were no medical guidelines recommending hepatitis delta testing, and many providers and patients are still not aware of the virus. However, recent studies have found that as many as 15-72 million hepatitis B patients may also be infected with hepatitis delta. These findings serve as a wake-up call and liver disease experts are now drafting and promoting hepatitis delta testing guidelines for doctors. The Hepatitis B Foundation recommends that all hepatitis B-positive pregnant people be tested for hepatitis delta.   When someone is coinfected, hepatitis delta usually suppresses the hepatitis B viral replication, and becomes the dominant disease, which could be why someone may continue to have liver damage despite taking antiviral therapy for hepatitis B. Because hepatitis B antiviral treatments have no effect on hepatitis delta, it is important for patients to be tested for a possible coinfection so they can consider alternative management and treatment plans. Yes, these two shots are very important for protecting a newborn from hepatitis B and delta infections. The baby must also complete the additional shots in the hepatitis B vaccination series, for a total of 3-4 shots. Then the baby will be protected for life and can never contract hepatitis B or delta! For more information about managing hepatitis B and delta during pregnancy, visit our blog post. Despite the absence of medical guidelines, leading experts including Dr. Robert Gish, Medical Director of the Hepatitis B Foundation, recommend frequent monitoring by a physician who is knowledgeable about liver diseases because these patients are at such high risk of cirrhosis and liver cancer. Doctors should: Monitor patients’ liver enzymes (ALT/AST) 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 hepatitis B viral load (HBV DNA) and hepatitis delta viral load (HDV RNA) testing every six months. No, hepatitis delta is a different type of virus than hepatitis B, and unfortunately antivirals will not stop hepatitis delta from replicating. While entecavir and tenofovir can reduce and control the hepatitis B virus, they don’t eradicate the amount of hepatitis B surface antigen (HBsAg) that hepatitis delta needs to survive and replicate. For quite some time, pegylated interferon alpha was the only drug that was shown to be somewhat effective against hepatitis delta. In July of 2020, a new HDV drug called Hepcludex was approved for distribution and use in Europe by the European Medicines Agency. This drug has been shown to be more effective and have more manageable side effects than pegylated interferon alpha, and will hopefully become more widely available in 2023 and beyond. There are several other potential drugs for hepatitis delta being investigated now as well. For more information on treatment, click here. Hepcludex has recently been approved for prescription by the European Commission and has been found to be effective in clearing hepatitis delta in Phase 1 and 2 trials. Phase 3 trials are currently underway to evaluate long-term effects. Hepcludex works by blocking the reception process of hepatitis delta into the liver, so that the virus does not continue to infect healthy liver cells, after the currently infected cells either die or are destroyed by the immune system. Plans for seeking approval in other parts of the world outside the EU are presently being drafted by Gilead, the pharmaceutical company that holds the license for Hepcludex. Prior to Hepcludex, pegylated interferon alpha is the only drug that had been shown to be somewhat effective against hepatitis delta and acts by stimulating the body's immune system to fight the virus. A small percentage (<25%) of patients experience remission when injected weekly over periods of 48 weeks or longer. Antiviral treatments that are effective in controlling hepatitis B have no effect on hepatitis delta, but are often recommended as part of a patient's treatment plan to control their hepatitis B.  *NOTE: Hepcludex is also an injectable medication. More information about currently available drugs and drugs that are in the clinical trial pipeline is available here.      There are dozens of research efforts and biotech companies around the world working to find a cure for hepatitis B. In addition, if a functional cure can be found for hepatitis B that makes the HBsAg disappear, then that drug will also cure hepatitis delta because it will make HBsAg unavailable for hepatitis delta viral replication or reproduction. There are also currently several new drugs in clinical trials for hepatitis delta. Visit our drug watch page for more information. To find a clinical trial near you, click here.

  https://www.hepb.org/research-and-programs/hepdeltaconnect/faq/
• Hepatitis Delta Coinfection

  Hepatitis Delta, or Hepatitis D, is a type of viral hepatitis caused by the hepatitis D virus (HDV), which needs the hepatitis B virus to exist. People who are already infected with hepatitis B can be infected with hepatitis D, which is referred to as a super-infection, or the HBV and HDV virus can be transmitted at the same time, which is called a coinfection A Hepatitis B- Hepatitis D coinfection may result in a more severe acute disease and a higher risk (2%-20%) of developing acute liver failure compared with those infected with HBV alone. The only way to prevent a HDV infection is to prevent a hepatitis B infection! Get the hepatitis B vaccine and reduce your risk. Chronic HBV carriers who acquire HDV super-infections usually develop chronic HDV infection as well. Progression to cirrhosis is believed to be more common with HDV-HBV chronic infections. Hepatitis D is spread the same way as hepatitis B: Contact with infected blood Unprotected sex. Exposure to dirty needles (i.e. needlesticks, sharing drugs, tattoo parlors, body piercings). From an infected woman to her newborn during birth. There is really no effective treatment for HDV, or standard treatment guidelines. For an acute HDV infection, only supportive care for symptoms can be provided. For a chronic HDV infection, some doctors may try pegylated interferon alpha2a alone or in combination with an antiviral, but this may only slow disease progression.

  https://www.hepb.org/research-and-programs/hepdeltaconnect/