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Karen and Dave’s Story

One Couple’s Journey through Hepatitis B, Hepatitis D and Liver Cancer

“Dave knew he had hepatitis B for decades, but honestly, no one ever seemed concerned. His liver
enzymes were slightly elevated, so the doctor told him to just watch what he ate and drank. He didn’t
even insist on bi-yearly blood tests!

In 2016, Dave was scheduled for a routine colonoscopy. Because he’d been looking pale and sickly
around that time, I suggested they do a blood test first at his family doctor. His numbers were off the
chart. They sent us back for the colonoscopy and added an endoscopy too. They found four varices
(enlarged veins in the esophagus that can indicate serious liver disease). How did this happen?

This was when I started to get angry. The gastroenterologist called us in to discuss the results. He asked
if Dave knew he had hepatitis B. Dave said yes, knowing his drug use in his teens and early twenties was
likely the source. Dave never felt shame about it at all, and just accepted it as a path he took, and
thankfully came out of. After that conversation, the doctor slammed his chart shut and pushed it across
the desk. He said that Dave’s liver was so badly damaged that there was nothing he could do and to
‘come back in a year’. When we asked about his options for treatment for the varices and his hepatitis B,
he actually told me that no one would treat the varices unless they were bleeding! He also told us that
hepatitis B antivirals would “make things worse”. That didn’t make sense. We asked about a transplant.
He said there was ‘no way’ anyone would give him a new liver. He didn’t even let us know that there
were actual liver clinics for this very purpose. He sent Dave away to die, really.

Many months later, with much perseverance, we made it to Stanford, where he was immediately put on
entecavir to treat his hepatitis B and to hopefully relieve some of his liver damage. That doctor alerted
us that he should also be tested for hepatitis D, a coinfection of hepatitis B. “It won’t be good if you have
it.” He did.

Due to changes in our health insurance, we were sent to continue at the University of California San
Francisco Liver Center…they were our saving grace. They treated the varices right away and put him on
other medications to help his failing systems. His hepatitis B viral load was now undetectable, with
hepatitis D being the biggest concern. Dave tried interferon to treat the hepatitis D, but with no luck. His
only chance was a transplant, but even though he was doing poorly, his test results didn’t qualify him to
get on the transplant list right away. He had lots of ER visits – 210 office visits in 2017 alone. It was a
whirlwind. Dave hadn’t even driven in 2 ½ years. It was an enormous stress on me, too.

Dave developed liver cancer but wasn’t in good enough shape to go through treatment. As he got sicker,
he eventually qualified for two different                  
liver transplant waiting lists. Finally, on
Thanksgiving night 2017, we got the call
that a healthy liver was available, and we
took it.
Caregiving is a very tough road. Especially
when your person also has encephalopathy,
caused by years of liver damage – and Dave
had it really bad. The encephalopathy
caused mood swings, short-term memory
loss, hand tremors, low appetite. He could
be down-right nasty. At that time, we were
doing the 4 ½ hour drive to San Francisco
once or twice a week. It was stressful for
both of us – and he was really unaware of
the stress that was put on me. Between
driving, taking out the garbage, bills, our
construction business…you name it, I did it
all.

The first 3-4 months out of the transplant, people were telling him all that had gone on. Much to my
frustration, he didn’t believe any of it! Now, over 6 months post-transplant, little things are coming back
to him. I showed him about 2 dozen pictures of him during his journey, and he was shocked! He said he
thought he was fooling everyone into thinking he was well.

The hardest part of this journey was seeing Dave so sick at times. I spent a lot of time in my closet
crying. It was hard on our adult girls too, to see their dad so weak and disoriented. I had a lot of support
through our girls though, and my family, which made a world of a difference. My sister is also a retired
nurse, and she accompanied us to most of our visits. She was a helpful adviser, since his medications
always needed tweaking, and we were often on long calls with our care team, health insurance
company, and pharmacies.

The good we took away is his health! He still doesn’t feel it’s real. We went through so much, and are so
grateful to be on the other side.

Things I’ve learned:
• Get on a Facebook forum for liver transplant patients…they are a great resource and a wealth of
information from other patients.
• Take a third person with you to doctor visits and procedures. At times, I was so consumed with
my concern for Dave, it was easy for me to forget some of the things we discussed. My sister
would take notes, and we would review them after.
• Always get a second opinion if you don’t have a good feeling about your doctor. You will all
become a team, and it’s important to have a team you can trust.
• Get on the transplant list at multiple hospitals, their criteria for transplant varies!
• Have willing family members and friends get tested to see if they are donor matches. Usually the
recipient’s insurance will pay for the testing and survey if they are a match. My sister-in-law and
I were both tested but were not a match.
• Ask about organ swap programs. Apparently, my kidneys were in perfect health. My
hepatologist had me apply to the kidney donor program, in hopes that I may be able to donate
my kidney in exchange for a piece of someone’s liver for Dave.
• Dave was put on depression and anxiety medication early in the process. He was initially very
resistant, mostly because of the stigma. His doctors finally convinced him it would be very
helpful for his general mood…it was!
• I had to make several phone calls to his team without his knowing. Encephalopathy really makes
you confused, and in Dave’s case, grumpy. I asked the doctor to push for the depression and
anxiety medications, which she did. Also, he wouldn’t exercise or take short walks before
surgery, which she had asked him to, to better prepare for surgery. I made the phone call, and
at the next visit, she set him up with a Fitbit! It helped that the ‘suggestions’ came from his
doctor and not me!
• After the transplant, I was so surprised he wasn’t more ‘thankful’ …that he wasn’t in awe of
what we had all gone through for HIM! I got angry with him. I made a private call to our new
post-transplant team. She said depression right after is very common. The patient feels
overwhelmed, and sometimes not very thankful. It’s kind of a way to deny they were in trouble,
to deny that they needed help. That fits my man to a tee!
• I would strongly suggest lots of patience after the transplant. I wish our team would have told
me the possible mental-state Dave might be in. Don’t force them to be thankful. Don’t play the
‘remember when’ game, “remember when I drove you to the ER in the middle of the night?
Remember when they told us you had cancer? Remember when I tried to be your donor?”
Because a lot of it he doesn’t remember.
• Take pictures along the way, but don’t show them until at least 6 months out. I showed Dave
pictures right away, and they didn’t resonate. I just showed him them the other night…and he
was floored! He really ‘got it’. He’s been looking at things differently lately: he’s calmer and
more loving.
• I wish I had kept a journal. The ups and downs of this journey were sometimes excruciating, and
Dave wasn’t ‘present’ to understand it. Hire cleaning help if needed. Get family and friends to
take the patient to lesser important appointments. Don’t let household things pile up on you. Fix
the gutter. Repair the screen. Hire a gardener for a few hours. Ask family to set things up for
you. It’s amazing how in two years without Dave to physically help around the house, things
started to go south pretty quickly! Luckily, I dug in and kept up.

Quite the journey for sure. I feel blessed to be on this side of health!”

– Karen

Hepatitis D: Coinfection vs. Superinfection

Hepatitis D is an aggressive form of hepatitis that can only exist alongside hepatitis B. This means that all hepatitis B patients are at risk for hepatitis D, but so are people who have not received the hepatitis B vaccination series.

If contracted, 70-90% of people with chronic hepatitis B will go on to also develop a chronic hepatitis D infection – called a “superinfection”. Approximately 70% of these cases will progress to cirrhosis (liver scarring), compared to 15-30% of those infected only with the hepatitis B virus.

Due to the likelihood of liver complications, hepatitis B patients should be aware of potential exposures to hepatitis D. The virus is spread the same way as hepatitis B, through direct blood-to-blood contact and unprotected sex with an infected person. It is important to be aware that blood contact could also occur by exposure to unsafe blood transfusions, unsterile medical or dental equipment, and the sharing of razors or toothbrushes with an infected person due to the possibility of infected blood entering the body.

People who are not infected with hepatitis B may be at risk for “coinfection”, when someone contracts hepatitis B and D simultaneously during one exposure. In these cases, greater than 90% of adults will clear both infections and develop protective antibodies. While a co-infection generally resolves spontaneously after about 6 months, it can sometimes result in a life-threatening or fatal liver failure.

The good news is that the hepatitis B vaccine series can prevent both viruses in people who are not already infected. Once completed, the vaccine can provide a lifetime of protection!

For more information about hepatitis B/D coinfection, please visit www.hepdconnect.org or email us at connect@hepdconnect.org.

What New Treatments Are on the Horizon for Hepatitis B/D Coinfected Patients?

Although there are highly effective treatments available to manage hepatitis B, there are few available treatments for hepatitis D, and none are U.S. Food and Drug Administration (FDA) approved. Hepatitis D is the most severe form of viral hepatitis, and coinfection can accelerate liver damage and cause cirrhosis or liver cancer in as little as 5 years for some patients. Currently there is no approved drug for acute or chronic hepatitis B/D coinfection, but in trials pegylated interferon alpha has shown to be somewhat effective. By stimulating the body’s immune system, around 25-30% of patients are able to suppress their hepatitis D viral load with weekly injections over 48 weeks. Emerging research is showing higher rates of effectiveness with prolonged interferon treatment beyond one year, but it can be difficult for patients to continue due to the physical and mental toll of interferon on the body. Antiviral medications that are proven effective against hepatitis B are sometimes prescribed along with interferon therapy for patients with a high hepatitis B viral load, but these have no effect on hepatitis D. It is urgent that more treatment options be developed for the millions of hepatitis B/D patients that are eagerly awaiting them.

The good news is that with renewed scientific interest, research and funding, eight new drugs are currently in development that offer hope for more treatment options in the coming years. Two drugs have even been granted special designations by the FDA and one by European Medicines Agency (EMA), paving the way for increased resources and funding for development. Due to recent advancements, the future looks hopeful, and within a few years it is likely there will be more treatment options available. Below is a chart that provides more information on these new drugs and their current clinical trial status.

Pegylated Interferon Lambda

Pegylated-interferon-lambda (PEG-IFN-λ) is a well-characterized, late-stage, first in class, type III interferon that stimulates cell-mediated immune responses that are critical for the development of host protection during viral infections. This drug has now been granted “Orphan Drug Designation” by the FDA, fast-tracking the development process.

Myrcludex B

This drug is an “entry inhibitor” that prevents the virus from entering into hepatocytes (liver cells) and has shown activity against the hepatitis B virus. It may also stop the development of a hepatitis D infection. A recent study showed promise for Myrcludex B when combined with PEG-INF in reducing hepatitis D viral levels. It has been granted PRIME Eligibility by the European Medicines Agency, a status that promotes support in development of drugs that serve an unmet medical need.

Ezetimibe

Currently used to lower cholesterol in the blood, Ezetimibe is being studied for effectiveness against hepatitis D. Ezetimibe possesses pharmacophore features to stop NTCP, the receptor required for hepatitis B and hepatitis D hepatocyte entry.

Lonafarnib

This drug works by targeting the protein assembly process, preventing the production of new virus particles. In a current clinical trial, Lonafarnib combined with Ritonavir has shown promise in reducing hepatitis D viral levels, and the FDA has granted it fast-track status since this class of drugs have been developed for the treatment of cancers and have been shown to be safe.

Rep 2139

This compound is known as a “Nucleic acid-based Amphipathic Polymer” (NAP) which prevents the release of hepatitis B surface antigen (HBsAg) from infected liver cells and is being evaluated for hepatitis D virus in combination with pegylated interferon (PEG IFN).

GI-18000

GI-18000 Tarmogen is being studied for its effectiveness in causing a T cell immune response against cells infected with Hepatitis D and thereby improving outcomes. The strategy is to identify molecular targets that distinguish diseased cells from normal cells and activate the immune system to selectively target and eliminate only the diseased cells.

ALN-HDV

This approach is being used for both the hepatitis B and hepatitis D virus to “silence” the viral RNA with compounds that interfere with and cause the destruction of the viral genome (e.g. stop replication of the virus).

As clinical trials progress, sites may open across the world that are enrolling hepatitis D patients. Keep checking here for an up-to-date list of all current clinical trials.

Click here for more information about the phases of the clinical trial process.

For more information about hepatitis B/D coinfection, please visit www.hepdconnect.org or email us at connect@hepdconnect.org.

I Have Hepatitis B. Could I Also Be Infected with Hepatitis Delta?

Hepatitis delta, or hepatitis D, is an aggressive form of hepatitis that can only infect someone who is also infected with hepatitis B.

People can become infected with hepatitis B and hepatitis D from the same exposure, or people who are already infected with hepatitis B can later be infected with hepatitis D. Coinfection can promote more rapid progression to cirrhosis and liver cancer than being infected with hepatitis B alone and will require an altered treatment and management plan. Being aware could save your life!

Hepatitis D can be spread similarly to hepatitis B, through exposure to blood or bodily fluids of an infected person. People with hepatitis B are likely to develop a chronic hepatitis delta coinfection if they are exposed to the virus, making it important for you and your doctor to be aware of the signs of a coinfection.

Cues to suspect a coinfection:

  • You have chronic hepatitis B but are not responding to antiviral treatment, or you have signs of liver damage even though your viral load is low (HBV DNA below 2,000 IU/mL)

Note: Fatty liver disease (caused by obesity) and liver damage from alcohol or environmental toxins should be ruled out as causes of liver damage before testing for hepatitis D.

It is also important for hepatitis B patients who originate from Sub-Saharan Africa, China, Russia, the Middle East, Mongolia, Romania, Georgia, Turkey, Pakistan and the Amazonian River Basin to be tested for hepatitis D, where it is more common. Most of the time, patients do not have any signs or symptoms to let them know they are coinfected, so a simple blood test is the only way to know for sure! Talk to your liver specialist about testing at your next appointment.

Hepatitis Delta Connect is a dedicated program of the Hepatitis B Foundation aimed to provide information and support for those affected by hepatitis D. Please visit our website, www.hepdconnect.org for more information and follow us on Facebook, Twitter and Instagram to stay up to date on the latest hepatitis D news! If you are a patient or provider and have questions or concerns, please email us at connect@hepdconnect.org.

Check out our previous posts about hepatitis D here, here, and here.

Diagnosing Hepatitis Delta in the U.S.

Robert Gish, MD

David Hillyard, MD

Hepatitis D, or hepatitis delta, is the most severe form of viral hepatitis known to humans. The hepatitis D virus infects the liver and is dependent on the hepatitis B virus to reproduce. This means that people who are already infected with hepatitis B are at risk of contracting hepatitis D as well.

Worldwide, more than 257 million people live with hepatitis B and of this number, an estimated 15-20 million are also infected with the hepatitis delta virus (HDV). While uncommon in the United States, HDV co-infection is more common in parts of the world such as China, Russia, Middle East, Mongolia, Romania, Georgia, Turkey, Pakistan, Africa, and the Amazonian river basin. For this reason, it is important to test hepatitis B patients who originate from these higher endemic areas for 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 also be tested. Fatty liver disease (caused by obesity) and liver damage from alcohol or environmental toxins should be ruled out as causes of liver damage before testing for HDV.  Hepatitis D infections lead to more serious liver disease than hepatitis B infection alone. It is associated with faster progression to liver fibrosis, increased risk of liver cancer, and early decompensated cirrhosis and liver failure. This is why it is so important that people with hepatitis B and D coinfection are diagnosed before it can lead to severe complications.

Robert Gish, MD, Hepatitis B Foundation Medical Director, and David Hillyard, MD, Medical Director, Molecular Infectious Diseases, ARUP Laboratories, tackled the topic of diagnosing hepatitis D in a webinar in October. Dr. Gish also answered additional questions, which are featured below:

  • What is the first step in diagnosing an HDV patient?

The HDV antibody test (anti-HDV) is the first test that is run to see if a patient has been infected with hepatitis delta. Because this test will be positive even if a patient has cleared a hepatitis delta infection, it is followed up with an HDV RNA test, which determines an active infection. There is also an antibody test (anti-HDV igM) that can test for an acute active infection.

  • Are there tests available in the US that can detect the HDV genotypes or just genotype I?

Although there have been 8 genotypes of HDV identified, each with their own distinct progression outcomes, genotype testing in the US remains rare and often difficult to acquire.

  • What is the role of measuring HDV RNA in monitoring chronic HDV progression or response to treatment?

The most effective way to understand the progression of a hepatitis D infection is to use liver ultrasounds, elastrography and fibroscans. These tests can evaluate the health of the liver. Declining HDV RNA level usually indicates a positive response to treatment.

  • Is there value to testing patients for a disease for which there are not many treatments?

Because patients who are coinfected with B and D have twice the risk of cirrhosis and liver cancer compared to monoinfected patients, it is an important diagnosis to make. Although there is currently only 1 treatment, lives are still being saved.

  • Should primary care providers be testing high-risk patients for HBV and HDV at the same time?

No, providers should only test patients who already have hepatitis B. One in twenty people with hepatitis B are thought to also be infected with hepatitis D. Bottom line: testing for hepatitis D is a simple blood test that could change the course of treatment and save your patient’s life!

If you do find out that you have hepatitis D, it can be overwhelming and scary. However, knowing the basics can help you manage your diagnosis. Through the Hepatitis B Foundation’s Hep Delta Connect program, you can get information on how to protect your loved ones, find a physician, and seek out support.

For more information, please click here or visit our Hepatitis Delta Connect program website. Please also contact Sierra Pellechio, the Program Manager for Hepatitis Delta Connect program at sierra.pellechio@hepb.org for any questions.

The Medical Community Wakes Up to a Dangerous Threat to People with Hepatitis B – Coinfection with Hepatitis D

hep DBy Christine Kukka

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.

Banner CurveWhat 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.

Hepatitis B Foundation Launches Education Initiative for People Coinfected with Hepatitis B and D

hepc-graphicBy Sierra Pellechio

The Hepatitis B Foundation is excited to launch the Hepatitis Delta Connect program to provide education and resources for patients and families affected by hepatitis D, the most aggressive form of viral hepatitis. Hepatitis D infection requires the presence of the hepatitis B surface antigen (HBsAg), so only people already infected with hepatitis B can become infected with hepatitis D.

There is a large gap in knowledge and awareness about this virus, and the foundation is working to provide easily-accessible information and support to those in need.

Because the hepatitis D virus (HDV) is acquired only if a hepatitis B infection is present, it can be effectively prevented through hepatitis B vaccination. While hepatitis D is not common in the United States, worldwide it affects 15-20 million people.

Areas with the highest rates of hepatitis D infection rate include China, Russia, the Middle East, Mongolia, Romania, Georgia, Turkey, Pakistan, Africa and the Amazonian river basin. It is transmitted through direct contact with infected blood and bodily fluids, and most commonly affects high-risk groups such as intravenous drug users, men who have sex with men or have multiple sexual partners, and people emigrating from countries where hepatitis D is common.

Hepatitis D can be acquired either through coinfection (becoming infected with hepatitis D and B at the same time) or a super-infection (becoming infected with hepatitis D after a person has hepatitis B). A coinfection generally resolves spontaneously after about six months, but it can sometimes result in life-threatening or fatal liver failure. Like hepatitis B, hepatitis D may not present with any symptoms, so getting a simple blood test is the only way to know if you are infected.

Hepatitis B Foundation Health Outreach Coordinator Sierra Pellechio
Hepatitis B Foundation Health Outreach Coordinator Sierra Pellechio

Treatment options are limited, but pegylated interferon has shown some effectiveness in a small percentage of patients (less than 30 percent). The good news is that there are five promising drugs currently in clinical trials. Visit our HDV Drug Watch and Clinical Trials page for more information about these drugs. We at the Hepatitis B Foundation appreciate the support of Eiger Biopharmaceuticals to help launch this valuable patient-focused program.

Hepatitis D is a complicated virus, and for this reason, it is very important for patients to find a knowledgeable liver specialist (or hepatologist) who can provide the best care and management.

The most important message for those living with hepatitis B is to get a simple blood test to find out if they have hepatitis D if they believe they are at risk. There are promising new treatments that could help prevent the serious complications related to a hepatitis B and D coinfection.

As the coordinator of Hepatitis Delta Connect, I am thrilled about this opportunity to help create a resource for patients who are living with hepatitis D. My experience in health literacy and community outreach blend with my commitment to support those in need, allowing me to promote the project in ways that will help raise the visibility of hepatitis D and let the 15-20 million infected people know that they are not alone.

In addition to our website, please email questions to connect@hepdconnect.org follow us on Facebook, Twitter and Instagram (@hepbdconnect) to join the global conversation. We look forward to hearing from you.

Hepatitis D Coinfection with Hepatitis B

Hepatitis D virus (HDV) – the “D” is for delta – is a viral enigma that doesn’t act like a normal virus. It is helpless – that is, it can’t infect a cell – without its viral accomplice, the hepatitis B virus (HBV), and makes infection with HBV worse.

Delta virus can only cause illness in those already infected with HBV, said Timothy Block, Ph.D., President and Co-Founder of the Hepatitis B Foundation, Professor and Director, Drexel University Institute for Biotechnology and Virology Research.

“It can take quiescent HBV and turn it into an acute, lethal viral infection,” Block said. “Liver disease – cirrhosis, liver failure – that might take decades to develop or could only take a year or two. Delta virus converts HBV infection into an emergency situation.”

“It’s one of the most severe forms of human viral hepatitis,” said Jeffrey Glenn, MD, Ph.D., Associate Professor of Medicine at Stanford Cancer Institute.

“Delta virus is a parasite of HBV because it encodes its own genome and coat-like protein but it doesn’t make its own envelope protein,” Glenn explained. “It steals that from HBV. It needs the B envelope protein to make its own, and this provides a means to infect new cells and subsequently make a fully formed viral particle to get out of those cells to infect others.”

Individuals can acquire delta virus two ways: Either after infection with HBV, which is called a “superinfection” and more likely to stay chronic, or a “co-infection”, which entails becoming infected with both viruses at the same time. In the latter, acute infections are more severe and increase the likelihood of developing liver disease much more quickly.

Worldwide, more than 15 million are infected, though fewer than 100,000 in the U.S. have the virus. It is concentrated in particular regions worldwide. Mediterranean areas such as southern Italy and southern Greece, for example, have larger than usual numbers of affected individuals, and in Turkey it is endemic. There are eight reported genotypes of HDV, which vary by geographical distribution and pathogenicity. Some believe that HDV’s incidence is declining. This is likely due to the hepatitis B vaccined and the resulting decrease in HBV carriers.

Because HDV is not a huge problem in the U.S., it flies under the radar screen of public awareness. Screening for HDV is not routinely ordered; however, infection with delta virus should always be considered when a patient with chronic liver disease suddenly gets worse.

Researchers have been frustrated in their attempts to develop effective treatments against HDV. Newer antiviral drugs that keep down levels of HBV DNA don’t do much against delta virus because they don’t affect the HBV envelope protein. The response rate to pegylated interferon alpha is typically poor.

With research there is always hope. Currently, there is a clinical trial of lonafarnib for the treatment of those coinfected with hepatitis B and D in the United States. It was originally developed for the treatment of different types of cancers. Perhaps additional information will come out of this year’s International Meeting on Molecular Biology of Hepatitis B Viruses. We shall soon hear.

Hepatitis D Fast facts:

—   Delta hepatitis is one of the most severe forms of viral hepatitis.

—   It is an incomplete viral particle that was discovered in 1977.

—   Approximately 15 million people are infected with HDV worldwide.

—   In the U.S., an estimated 6,000-13,000 people suffer acute HDV infection 
each year; 30,000 suffer from chronic HDV; and 1,000 Americans die 
from HDV-related diseases annually.

—   It is transmitted by blood from people already infected with hepatitis B.

—   Preventing hepatitis B, especially vaccination, will prevent HDV.

—   There is currently no effective treatment for HDV