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Nearly 1 in 4 Romanians with Hepatitis B also Infected with Hepatitis D

 

Since the 1990’s most of Eastern Europe has seen a decline in the prevalence of hepatitis D, a dangerous coinfection of hepatitis B, attributed to successful vaccination programs and government prioritization. Romania, which has the highest hepatitis B prevalence in the EU, has not seen such declines of hepatitis D, which affects 23% of its hepatitis B patients. Hepatitis D coinfection is considered hyperendemic to the country, and has some of the highest rates of coinfection globally1. Seventy percent of these 200,000 patients will progress to cirrhosis, often within only 10  years2, and face barriers to receiving effective treatment and management. Although the country enacted a national hepatitis B vaccination program for all newborns in 1995 and a catch-up program for school-age children in 1999, older populations already infected with hepatitis B and inadequately immunized young people represent susceptible groups for coinfection with hepatitis B and disease.1,3. Additionally; lack of hepatitis B vaccination recommendations for high risk groups, low implementation of hepatitis B screening during pregnancy, supply shortages and vaccine hesitancy, have created opportunities for hepatitis B and D transmission. Exposure to infected blood or sexual fluids through blood transfusions or surgeries (before the 1990’s), tattoos, piercings, injection drug use, or sexual contact with an infected person, can expose people already living with hepatitis B to hepatitis D, or expose those who have not received the full hepatitis B vaccine series to both viruses. Control of hepatitis B and D coinfection has also been hindered by the lack of a national registry and surveillance system thus preventing an understanding of the accurate prevalence and public health burden1.

With health expenditure and life expectancy the lowest in the EU, Romania is battling large system-wide failures that have fostered the persistence of hepatitis B and D in its population5.

Dr. Florin Caruntu, of the National Institute of Infectious Diseases in Bucharest, has suggested that there is a general low level of awareness and screening among health care providers in Romania, which has led to late diagnoses and cost many patient lives. For patients who are diagnosed, investigational testing is not covered by the national insurance house, placing a financial burden on patients to pay out of pocket for the additional testing necessary to manage their coinfection. With pegylated interferon injections as the only semi-effective treatment option, even diagnosed patients struggle to effectively control their coinfection and even less are connected to clinical trials. Although there are 7 new drugs in clinical trials, progress has lagged behind patient need for new therapies, many of whom are living with cirrhosis.

Increased government investment in the healthcare system, including medical training and education programs for provider awareness, updated protocols and coverage of investigational testing, would pave the way for increased patient identification and navigation to successful care. As clinical trials continue to progress, it is critical that Romania be a top consideration for clinical trial sites, as patients anxiously await more effective treatment options.

For more information on HDV in Romania, please watch our webinar featuring expert speaker, Dr. Florin Caruntu, of the National Institute of Infectious Diseases in Bucharest, Romania.

For more information about hepatitis B/D coinfection and the Hepatitis Delta Connect program, please visit www.hepdconnect.org or email us at connect@hepdconnect.org. If you are a hepatitis delta patient, and wish to receive information about upcoming clinical trials, please enter your information here. Hepatitis Delta Connect seeks to provide information, resources and support for hepatitis B/D patients and their families through its website, social media, fact sheets, webinars  and hepatitis D liver specialist directory.

1. Hepatitis delta virus infection in Romania: Prevalence and risk factors. (2015). Journal of Gastrointestinal and Liver Diseases, 24(4) doi:10.15403/jgld.2014.1121.244.dtv

2. Noureddin, M., & Gish, R. (2014). Hepatitis delta: Epidemiology, diagnosis and management 36 Years after discovery. Current Gastroenterology Reports, 16(1), 1-8. doi:10.1007/s11894-013-0365-x

3. Ruta, S. M., Matusa, R. F., Sultana, C., Manolescu, L., Kozinetz, C. A., Kline, M. W., & Cernescu, C. (2005). High prevalence of hepatitis B virus markers in Romanian adolescents with human immunodeficiency virus infection. Journal of the International AIDS Society, 7(1), 68-68. doi:10.1186/1758-2652-7-1-68

4. Gheorghe, L., Csiki, I. E., Iacob, S., & Gheorghe, C. (2013). The prevalence and risk factors of hepatitis B virus infection in an adult population in Romania: A nationwide survey. European Journal of Gastroenterology & Hepatology, 25(1), 56.

5. OECD/European Observatory on Health Systems and Policies (2017), Romania: Country Health Profile 2017, State of Health in the EU,OECD Publishing, Paris/European Observatory on Health Systems and Policies, Brussels. http://dx.doi.org/10.1787/9789264283534-en

 

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.

Who’s at Risk for Hepatitis B? Learning the Hep B Basics

 

Are you or someone you know at risk for hepatitis B? You might be more at risk than you think, and since hepatitis B is vaccine preventable, it makes sense to get tested and vaccinated for HBV.  Hepatitis B is the number one cause of liver cancer worldwide. The survival statistics for liver cancer are particularly grim, with a relative 16,6% 5-year survival rate.  The hepatitis B vaccine also protects against hepatitis delta, the most severe form of viral hepatitis.

It is important to note that everyone is susceptible to hepatitis B. It does not discriminate.  It infects, babies, children, teens, adults and seniors. It has no racial or religious bias, though it is certainly more prevalent among certain ethnic groups –mainly because it is endemic to the homelands of these communities. For example, if you look at the prevalence map for hepatitis B, you will see that in most of the world, hepatitis B is at an intermediate, (2-7%) or high HBsAg prevalence (>8%) level.  Looking at the numbers, 2 billion people in the world, that’s 1 out of 3 people, have been infected with HBV and 257 million are chronically infected. That represents three-quarters of our world. Even if you aren’t living in these parts of the world, you may be traveling to some of these areas for work or pleasure, or perhaps your parents and other family members were born in HBV endemic areas.  Since there are often no symptoms for HBV, and screening and vaccination may be lacking in some populations, HBV is transmitted from one generation to the next, with many completely unaware of their HBV status – until it’s too late.

People at risk for hepatitis B include the following: (not noted in a particular order)

  • Health care providers and emergency responders due to the nature of their work and potential for exposure.
  • Sexually active heterosexuals (more than 1 partner in the past six months)
  • Men who have sex with men (MSM)
  • Individuals diagnosed with a sexually transmitted disease (STD)
  • Illicit drug users (injecting, inhaling, snorting, pill popping)
  • Sex contacts or close household members of an infected person (remember, you may not know who is or is not infected)
  • Children adopted from countries where hepatitis B is common (Asia, Africa, South America, Pacific Islands, Eastern Europe, and the Middle East) and their adopted families
  • Individuals emigrating from countries where hepatitis B is common (see above)
  • Individuals born to parents who have emigrated from countries where hepatitis B is common (see above)
  • ALL pregnant women – because infants are so vulnerable to HBV (90% of infected infants will remain chronically infected, and HBV is very effectively transmitted from infected mother to baby.)
  • Recipients of a blood transfusion before 1992
  • Recipients of unscreened blood and blood products – sadly an issue in many parts of the world.
  • Recipients of medical or dental services where strict infection control practices are not followed – sadly another issue in parts of the world.
  • Kidney dialysis patients and those in early renal failure
  • Inmates of a correctional facility
  • Staff and clients of institutions for the developmentally disabled
  • Individuals with tattoos and body piercings performed in a parlor that does not strictly adhere to infection control practices – it may be up to you to ensure proper infection control practices are followed.
  • People living with diabetes are at risk if diabetes-care equipment such as syringes or insulin pens are inadvertently shared.

The good news is that hepatitis B is a vaccine preventable disease. There is a safe and effective, 3-shot HBV vaccine series that can protect you and your loved ones from possible infection with HBV.  The earlier you are vaccinated, the better. In the US, a birth dose of the vaccine is recommended for all infants, since these little ones are most vulnerable to hepatitis. (90% of infected infants will live with HBV for life). HBV vaccination doesn’t give you a free-pass from other infectious diseases such as HCV or HIV, both without vaccines, so strict infection control practices should still be followed. However, HBV is a tenacious virus that survives outside the body for a week and is 50-100 times more infectious than HIV  3-5 times more infectious than HCV.  Plus the HBV vaccine is actually an anti-cancer vaccine, so why not get vaccinated?

Hepatitis B isn’t casually transmitted, but in the right scenario, it is effectively transmitted. You may think that situation may never come about for you, or for your loved ones –especially your little ones who are so vulnerable to HBV. Some people travel to exotic lands with unsafe blood supplies and poor infection control practices, and sometimes they get sick, or require emergency dental or medical services, so they may be put at risk. Most people have had a lapse in judgment – sometimes it’s a one-time thing, sometimes it lasts for years, but the net-net is that it’s unusual to find someone who has not engaged in some sort of high-risk activity, whether intentionally or unintentionally. If you are properly vaccinated to protect against hepatitis B, you can cross that concern off your list.

B sure. Get screened. if you do not have HBV, get vaccinated and be hepatitis B free. If you discover you have HBV, talk to your doctor and have him refer you to a liver specialist who can better evaluate your hepatitis B status and your liver health.

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