Hep B Blog
Hepatitis B Advocacy, Living with Hepatitis B

Hepatitis B Discrimination in U.S. Medical Schools: What you Should Know

In 2013, an integral ruling by the United States Department of Justice (DOJ) took a major step towards ending one of the many forms of discrimination that hepatitis B patients face. The settlement made it illegal for medical schools to discriminate against students due to their hepatitis B status. Six years later, the words of

“Blind Lady Justice”

Thomas E. Perez, former Assistant Attorney General for the Civil Rights Division, still ring true: “Excluding people with disabilities from higher education based on unfounded fears or incorrect scientific information is unacceptable”. Unfortunately, many medical schools – both nationally and internationally – fail to acknowledge this.

Since the court settlement in 2013, we’ve received an increasing number of patient complaints regarding medical school discrimination. Some students completed all of their classes only to be told that they couldn’t participate in their clinical experience (which is a degree requirement) due to their hepatitis B status. Other students have had their acceptance to a school revoked because they tested positive for the infection. Both situations are considered illegal under the Americans with Disabilities Act (ADA).

What You Should Know:

  • You are protected by the law: Under Titles II and III of the ADA, it is illegal for entities, including schools, to discriminate against students based upon a disability like a chronic illness. In addition, institutions are required to make arrangements, policies, and procedures when needed in order to ensure that those titles are being followed.
  • You are not a threat: It is important to note that discriminatory policies are often outdated and should be unnecessary – in both schools and the healthcare field – as long as the appropriate procedures and precautions are followed.  
  • The Centers for Disease Control and Prevention (CDC) Recommendations are in your favor: In 2012, the CDC worked with us and a few other organizations to update their recommendations for managing healthcare students and workers with hepatitis B. Amongst those changes were no requirement of telling patients of a health-care provider’s or student’s hepatitis B status, using HBV DNA instead of hepatitis B e-antigen status to monitor infectivity; and, for those requiring oversight, a threshold value of HBV DNA considered “safe” (<1,000 IU/ml). They also state that “for most chronically  infected providers and students who conform to current standards for infection control, hepatitis B infection status alone does not require any curtailing of their practices or supervised learning experiences. “

What Discrimination Looks Like:

Sometimes, schools’ discriminatory actions are obvious but oftentimes they are not. Despite direction from the DOJ and requirements in the specified in the ADA, some institutions have not created standardized arrangements or policies for people who have hepatitis B. Other schools are not aware that turning away certain students based on a disability is illegal.

Discriminatory policies by schools may include:

  • Asking students to show proof of hepatitis B surface antibodies (HBsAb)
  • Revoking acceptance to the school based upon positive hepatitis B status (HbsAg)
  • Requiring undetectable viral load or e-antigen negativity for completion of clinical rotations

As an example of a discriminatory policy, Lehigh Carbon Community College states that: “The health care agencies for clinical experiences have specific health requirements that must be met by each student. The program requires proof of personal health insurance during enrollment in the nursing program. Admission to the program may be revoked upon review of these results. (1) Positive Hepatitis B Surface Antigen (2) Titer Levels for Hep B antibody level.”

This policy does not comply with the CDC’s current recommendations and seems to be a violation of the protections afforded by the ADA. You can view this policy on page 15 of their student handbook.

A good, non-discriminatory policy should be transparent and specific. One example of this is Rutgers University. The policy is in line with, and clearly references, the CDC’s most recent guidelines and provides a clear path on how to proceed based upon each student’s infections:

“Individuals who are found to be infected with HBV shall be counseled by the Student Health Service director or Occupational Medicine/Employee Health Service director in accordance with current guidelines from the CDC.”

You can view these guidelines under section H, category 40.3.5 of their policy website.

What To Do If You Face Discrimination:

If you believe that a school is discriminating against you based on your hepatitis B status, there are a few important steps you can take. First, try to schedule a meeting with the person who is in charge of the program, such as a director. This will help to quicken the response to your message and help facilitate change. Be sure to bring these formal guideline documents with you to help build your case: the CDC’s updated guidelines and the official DOJ/ADA letter to schools regarding hepatitis B discrimination. You can even highlight the sections that apply to your case. Hopefully, the school will realize their mistake and make the necessary changes to their policy!

If the school refuses to acknowledge your lawful protections, you can reach out to us at info@hepb.org and we will assist you. You can also file a formal complaint with the DOJ.

Hepatitis B Advocacy

National Public Health Week 2019: Let’s Create a Healthier World by Ending Hepatitis B

This week is National Public Health Week in the United States but this year’s theme – Creating the Healthiest Nation: For Science. For Action. For Health –  can be applied globally. Over 292 million people around the world are currently living with chronic hepatitis B, yet only 10% of patients are aware of their infection. In order to create the healthiest world possible, public health needs to address all threats to the public’s health – including those we don’t see.

How can we create a healthier world by eliminating hepatitis B?

  • Increase provider knowledge of hepatitis B – In the U.S. and around the globe, hepatitis B is often overshadowed by other infectious diseases, including HIV and hepatitis C. Because of this, there is a lot of confusion and misinformation about who should be tested and how to proceed if a person tests positive for the hepatitis B surface antigen. Educating healthcare providers about hepatitis B testing, management, and treatment, and helping providers understand the importance of helping high-risk patients know their hepatitis B status, is an important strategy. As early treatment and regular monitoring can prevent liver damage and lower a person’s risk of liver cancer, improved provider knowledge can help hepatitis B patients live long, healthy lives! Hep B United and the Centers for Disease Control and Prevention’s (CDC) Know Hepatitis B campaign has multiple resources for professionals, and the Hepatitis B Foundation lists international clinical guidelines for testing and treating patients.

 

  • Improve Vaccination Rates – One way to eliminate hepatitis B is to eliminate transmission. As the infection is most commonly passed from mother-to-child during birth, it is important for countries to adopt the universal hepatitis B vaccine birth dose – a policy that is widely credited with reducing this form of transmission even if the mother tests positive for hepatitis B! Under the universal birth dose policy, newborns receive their first dose of the hepatitis B vaccine within their first 24 hours of life. However, in the U.S., if the mother tests positive for hepatitis B, the child will receive the first dose of the vaccine and one shot of hepatitis B immune globulin (HBIG). According to the CDC and the Immunization Action Coalition, up to 95% of chronic infections caused by mother-to-child transmission can be prevented through this method!

 

While it is important to vaccinate newborns and infants, adults must be vaccinated too. In the United States, only about 25% – 30% of adults have completed all three doses of the vaccine. Completing the vaccine series is extremely important, as it takes all three doses, according to schedule, in order to receive long-lasting protection. As the infection can be spread through unprotected sex, sharing items such as toothbrushes and razors, or unsterile needles that could be used in tattoo parlors or medical settings, increasing the vaccination rate among this population is important in order to prevent transmission.

 

  • Encourage People to Get Tested – Hepatitis B can increase a person’s chances of cirrhosis and liver cancer, but when paired with other health conditions such as diabetes or hepatitis C, the risk for liver damage becomes even greater. As hepatitis B often has no symptoms, a person who is living with multiple health conditions may not realize that they need to be taking additional precautions to stay healthy. In addition, a recent study has shown that a large number of cancer patients have had past or present hepatitis B infections that were previously undiagnosed. Testing can help improve health outcomes for patients, as they can take the necessary precautions to prevent damage and doctors can make educated treatment decisions that would not negatively impact the hepatitis virus or cause it to reactivate.

 

To many patients, hepatitis B is not only a physical issue; it also has an emotional toll. From attempting to navigate the healthcare system to facing workplace discrimination, hepatitis B patients all over the world can face stress and mental distress. Cultural myths and stigma can negatively impact how infected individuals and their families interact with their communities and even each other. Addressing these issues is a major part of eliminating the infection once and for all. So, for science, for action, and for health, we must all work together to advocate for patients, protect our communities, and end hepatitis worldwide!

To hear real patients describe their struggles with hepatitis B, you can view our #justB story campaign.  

Want to help raise hepatitis B awareness during National Public Health Week? Join us on social media by using the hashtags #NPHW or #NationalPublicHealthWeek on Twitter and follow along as we participate in the American Public Health Association’s twitter chat on Wednesday, April 3rd at 2 pm!

Hepatitis B Prevention

Hepatitis B Vaccine Schedule: Standard, Accelerated, and Combination

Getting poked with a needle is never fun, but it’s an extremely important part of protecting yourself and others from infectious diseases! The hepatitis B vaccine is known to be one of the most effective vaccines in the world – and very safe too! As a blood-borne disease that typically has no symptoms, hepatitis B can easily be spread by accident – simply because people are unaware that they have it! Modes of transmission include mother-to-child during birth, unprotected sex, injection drug use, unsafe medical procedures, and the sharing of personal items that may contain blood remnants, such as body jewelry, razors, and toothbrushes. Although certain precautions can be taken to prevent transmission, the only way to completely protect yourself is to get vaccinated. Once you have been vaccinated, you are protected for life!

There are a few options for receiving the hepatitis B vaccination. In most countries, the vaccine is available through a doctors office or a health clinic. The most common option is the standard three-dose vaccine. This consists of three separate doses of the vaccine given through intramuscular injections. In order for the vaccine to be effective, there must be a minimum amount of time between doses. If the minimum amount of time is not followed, the vaccine will not provide full, long term protection from the infection.

3 Dose Schedule:

  • 1st Shot – At any given time, but newborns should receive this dose in the delivery room within 24 hours of birth
  • 2nd Shot – At least one month (or 28 days) after the 1st shot
  • 3rd Shot – At least 4 months (16 weeks) after the 1st shot (or at least 2 months after the 2nd shot). Infants should be a minimum of 24 weeks old at the time of the 3rd shot.

In the United States, there is an FDA approved 2-dose vaccine called Heplisav-B. However, Heplisav-B is only approved for adults. Both doses must be from the Heplisav-B vaccine only.

2-Dose Schedule (U.S. Only):

  • 1st shot – At any given time
  • 2nd shot – At least 28 days after the first shot.

Accelerated Vaccine Schedule

At the moment, Heplisav-B is the only vaccine that is approved on a shortened schedule. Some doctors may offer an accelerated vaccine schedule for special circumstances. However, the accelerated schedule is generally not recommended for individuals who do not need the vaccine within a certain time period. The Centers for Disease Control and Prevention only recommends the accelerated vaccine schedule to those who are traveling on short notice and have a high risk of facing exposure, or to emergency responders in disaster areas. Multiple studies have shown that the minimum time between doses is necessary in order to receive full protection against the infection. If doses are given too close together, the body does not have enough time to create an immune response to the vaccine’ leaving you vulnerable to transmission. If you must complete an accelerated schedule, four doses of the vaccine are required in order to achieve full, long-term immunity.

4 Dose Schedule:

    • 1st Shot – At any given time
    • 2nd Shot – 7 days after the first shot
    • 3rd Shot – Between 21 and 30 days after the 1st shot

 

  • 4th Shot –  1 year after the first shot

 

 

Combined Vaccines

In some cases, the hepatitis B vaccine is administered along with other vaccines or as part of a combination vaccine. Examples of combination vaccines that offer protection against HBV include: 1) The pentavalent vaccine which is used for children and protects against a total of five infectious diseases and 2) the combination hepatitis A and B vaccine. While the pentavalent vaccine is offered as the first dose for children in many countries, it is not ideal unless the child is able to get the birth dose of the HBV vaccine. It can only be given once the child is six weeks old, leaving the infant unprotected during the gap. Therefore, it is strongly recommended that children receive a monovalent hepatitis B dose of the vaccine at birth. For women that are HBsAg positive, the birth dose is the best chance to prevent hepatitis B transmission to the next generation and must be given within 24 hours of birth.

Pentavalent Vaccine Schedule         

  • 1st Shot –      Monovalent at birth                                                                         
  • 2nd Shot-      Pentavalent at 2 months of age                     
  • 3rd Shot –      Pentavalent at 4 months of age
  • 4th Shot –      Pentavalent at 6 months of age                         

The combined hepatitis A & B vaccine – which is only for adults – can follow the 3 dose vaccine schedule or, if necessary, the 4 dose accelerated schedule. More information on combination vaccines can be found here.

Before you get vaccinated, it is important to get tested for hepatitis B! The vaccine will not work for those who are currently infected or have previously been infected. Those who have recovered from a past infection will produce antibodies to the virus and will not have to worry about becoming reinfected or infecting others – but the virus can become reactivated if they undergo immune suppression, so it is important for you and your doctors to know if you have recovered from a past hepatitis B infection. However, those who are currently infected will still be able to transmit the virus – even if they receive the vaccine. Therefore, it is important to know your current status. Ask your doctor or local healthcare provider for the 3-panel hepatitis B blood test (HBsAg,HBsAb,HBcAB) to find out your status today!

 

Hepatitis Delta (HDV), Uncategorized

Phase 3 Clinical Trials Opening for Hepatitis Delta Patients

Phase 3 clinical trials have been announced for two drugs, Lonafarnib and Myrcludex (Bulevirtide) for the treatment of hepatitis B and delta coinfection.

Phase 3 studies compare new possible treatments to the current standard treatment, to see if it is more effective and/or safer than the current standard of care. Phase 3 studies are randomized control trials, which means that patients will be assigned to one of several different treatment groups. These studies usually evaluate the new treatment over a long period of time but special designations by the U.S. Food and Drug Administration (FDA) and the European Medicines Agency (EMA), such as Fast Track, Orphan Drug, Breakthrough Therapy Designations and PRIME eligibility status will speed up this process and bring these drugs to approval more quickly. Because the only currently approved treatment for hepatitis delta is pegylated interferon, which is often less than 30% effective, there is an unmet need for faster development of more treatment options.

Phase 3 clinical trials for Lonafarnib are currently recruiting hepatitis B and delta coinfected patients in the United States. Ninety-two international trial site locations have also been announced and will take place in Belgium, Bulgaria, Canada, France, Germany, Greece, Israel, Italy, Republic of Moldova, New Zealand, Pakistan, Romania, Span, Switzerland, Taiwan, Turkey, United Kingdom and Vietnam. This clinical trial, run by Eiger Biopharmaceuticals, will test the new drug Lonafarnib in combination with other treatments. For more information about the study, visit www.D-LIVRstudy.com or clinicaltrials.gov.

Bulevirtide, made by MYR-GmbH Pharmaceuticals, has also announced that its phase 3 clinical trials will be opening in 2019. Trial site locations have not been announced yet. For more information about this study, visit clinicaltrials.gov.Click here for more information on locating additional clinical trials. If you are considering joining a clinical trial, discussing it with your liver specialist can be helpful in determining if joining a trial may be right for you.

It is very important for hepatitis B and delta patients to be managed by a doctor, preferably a liver specialist, who is familiar with managing hepatitis B and delta coinfection. For assistance in locating a specialist near you, please visit our Physician Directory page. For additional questions, please visit www.hepdconnect.org or email connect@hepdconnect.org.

Liver Health

Hemochromatosis: Treatment, the Liver, and Hepatitis B

Genetic conditions can be an unfortunate part of life, but with information and support, some can be managed. By sharing your family health history and learning about genetic disorders that run in the family, measures can be taken to prevent damage and help your loved ones stay healthy!

Hereditary hemochromatosis is one of the most common genetic disorders. The Centers for Disease Control and Prevention (CDC) reports that approximately 80-90% of hemochromatosis cases are from the hereditary form of the condition1. Due to a mutation in the HFE gene, the body begins to produce too much iron – a process

Northern European Countries

called iron overload. Iron overload can cause complications in the liver, heart, and pancreas2. According to the National Organization for Rare Disorders (NORD), hereditary hemochromatosis has several names that all refer to the same disorder: bronze diabetes, classic hemochromatosis, hemochromatosis type I, hemosiderosis, HFE-related hemochromatosis, HH, and primary hemochromatosis. The two non-hereditary forms of hemochromatosis are secondary hemochromatosis and neonatal hemochromatosis. Both are considered to be rare. Although the hereditary form is common, the exact number of patients worldwide is unknown. Globally, it is estimated that 1 in 227 individuals of Northern European descent is living with hemochromatosis. In the U.S, an estimated 1 million individuals are impacted as well 2. 

Not everyone who has the mutant gene develops hemochromatosis. These individuals are known as “carriers”; they can pass the gene on without suffering from the symptoms. Symptoms include joint pain, fatigue, abdominal pain, unexplained weight loss, and a bronze or grey skin color. For most patients, symptoms do not appear until middle age (40-60) because it takes time for the iron to build up in the body. Males tend to be affected more often than women and experience symptoms at a younger age as well 3,2. Some carriers for the mutant gene may develop a more severe version of the disorder called juvenile hemochromatosis. With juvenile hemochromatosis, patients experience an excessive amount of iron overload that can lead to liver and heart damage between the ages of 15 and 30.

Hemochromatosis, the Liver, and Hepatitis B

While the body needs a certain amount of iron to function, iron overload can be dangerous.  Hemochromatosis can lead to two major liver issues: hepatomegaly and cirrhosis. Hepatomegaly is the enlargement of the liver and cirrhosis is the scarring of the liver. Both issues can impair the liver’s ability to function and filter out toxins that enter the body. They can also increase a person’s risk of developing liver cancer. Recently, two major studies by the University of Exeter and the U.K. University of Connecticut, and the U.S. National Institute on Aging have found that a person living with hemochromatosis has four times the risk of developing a liver disease than a person who is living with the disorder.

For individuals living with hepatitis B, it is extremely important to understand any behaviors or conditions that may have a negative impact on your liver. Since one liver disease can increase your risk of another liver disease, it is important to identify the disorder as early as possible, especially if you have any of the following risk factors:

Risk Factors for Hereditary Hemochromatosis:

  • Men or postmenopausal women
  • Of Northern European descent
  • Having a relative with hemochromatosis

Risk Factors for Secondary Hemochromatosis:

  • Alcoholism
  • Family history of diabetes, heart disease, or liver disease
  • Taking iron or vitamin C supplements

Hepatitis B patients do not have an increased risk of developing hemochromatosis4. However, if you have any of the above risk factors, it is important to get tested. Hemochromatosis can easily be identified by a comprehensive look at a person’s family health history, a physical exam, and a simple blood sample. Your doctor will then use the blood sample to run a series of tests that may include transferrin saturation (TS), serum ferritin, or liver function tests. In certain cases, the doctor may also perform genetic testing to see if the mutant HFE gene is present.

Treatment

Treatment for hemochromatosis is available! Based up tests results, family history, medical history, and the appearance of symptoms, the doctor may suggest a few different treatment methods. In therapeutic phlebotomy – the most common treatment method – a patient undergoes regular blood draw to lower the amount of iron in the body. This method is effective, affordable, and typically lasts for an extended period of time. Through iron chelation therapy, patients can either receive an injection or orally consume a medication that will lower the amount of iron in your blood. Finally, some doctors may suggest changes to your diet, such as eating less vitamin C, avoiding alcohol and shellfish, and not taking iron supplements. Dietary changes are mainly used to prevent liver damage.

For more information on HH, you can visit the National Heart, Lung, and Blood Institute.

References:

  1. Grosse, S. (2017). A New Public Health Assessment of the Disease Burden of Hereditary Hemochromatosis: How Clinically Actionable is C282Y Homozygosity? [Blog]. Retrieved from https://blogs-origin.cdc.gov/genomics/2017/08/16/a-new-public-health-assessment/
  2. National Organization for Rare Disorders. (2019). Classic Hereditary Hemochromatosis. Retrieved from https://rarediseases.org/rare-diseases/classic-hereditary-hemochromatosis/#general-discussion
  3. National Institute of Diabetes and Digestive and Kidney Diseases. (2019). Hemochromatosis. Retrieved from https://www.niddk.nih.gov/health-information/liver-disease/hemochromatosis
  4. Beaton, M., & Adams, P. (2007). The Myths and Realities of Hemochromatosis. Canadian Journal Of Gastroenterology, 21(2), 101-104. doi: 10.1155/2007/619401

Hepatitis B Advocacy, Living with Hepatitis B, Relationships

Patient Perspective: Living with Chronic Hepatitis B & Fighting it On All Fronts

 

This post is by guest blogger Mariam. Mariam works at a charity cancer hospital and is interested in philosophy. She is currently learning french and enjoys spending time by herself and the mountains. 

When you are first told that you have a chronic disease that is treatable but has no cure, you are suddenly confronted with an enemy on multiple fronts—you have to fight it within your body, inside your mind, your heart and in the outside world. Chronic hepatitis B: nearly 15 million people are living with it in Pakistan. In the world, 292 million people are silently suffering from this , and most are unaware (which is 9 out of 10 people globally). It is a tragedy that 2 out of 3 liver-related deaths are caused by this infection which is preventable and treatable. There are many reasons why this disease is prevalent in a developing country like Pakistan that lacks a proper healthcare system; where there are no pregnancy screenings or an effective mechanism to ensure babies are vaccinated against this. It’s an infection that can be transferred through blood (most commonly from an infected mother to her baby during delivery)  and sexual intercourse and  so it is not difficult to understand how this disease travels from one generation to another, silently. Elimination of viral hepatitis by 2030 is one of the millennium goals of the World Health Organization, but we cannot achieve this without dedicated efforts by all the stakeholders that include health-care professionals, patients, media, and policy-makers. I am primarily interested in sharing the patient’s perspective, in hopes that it will encourage others to fight this epidemic.

A Patient’s Point of View

The fact it’s a chronic illness means you are in for the long haul and you have to be prepared to take care of yourself by regular monitoring/medications (depending on what stage you are at) for the rest of your life. One can argue that’s bad but it’s not a big deal as we have people who suffer from high blood pressure, bad eyesight, or diabetes and they also have to regularly take care of themselves. The problem is that hepatitis B is an infectious disease, a fact that contributes towards stigma surrounding its diagnosis. Suffering from flu makes me feel like a hazard to others. Having an infection that I cannot get rid-off certainly makes me feel bad and, in a way, dirty. I have to be cautious and aware that my blood is hazardous for others and I have to be constantly aware of all the possibilities I can be harmful and ways to prevent it. It’s a progressive disease which can be treated at a certain point, so when you go to follow-up appointments, you feel like a ticking bomb is inside you and you need to be able to identify the period when the bomb goes off so you can treat the damage. Because current hepatitis B medications are most effective when there are signs of liver damage, the treatment is often only given during this phase. The inherent uncertainty makes you hate hepatitis B.

Fighting Discrimination and Stigma

Living in a conservative society, if you are one of the few fortunate ones aware of your diagnosis, how do you deal with it? I kept it to myself because I did not want people to define me through my illness. I did not tell my parents or friends because I did not want them to see me as ill or worse, to pity me. I needed time to process it without having to deal with other’s opinions and judgments. Three years ago, I was diagnosed with hepatitis B during regular pre-employment screening. I did not even know anything about this disease. I had a biopsy to determine the stage of the disease. Then I went to a few follow-ups. Unfortunately, after a while, I stopped because I did not want to think about this illness. I wanted to forget about it so I tucked it away, in the farthest corner of my mind. I did not know many people with whom I felt safe talking about this. Until one day, I was at a fundraising event for a charity cancer hospital where I got the chance to sit with a doctor. He was a stranger and a doctor, so in a way I felt safe telling him why I’m so interested in trying to understand where my country stands in the fight against hepatitis B—I told him I was diagnosed with it. At one point he asked me if I’m on treatment,  and I honestly told him I am supposed to be on follow-up. He said, “What do you mean, supposed to be?” That slight hint of disappointment made me feel I failed in taking care of myself. It’s easier to sound irrational inside your head but when you share it out loud, it does not feel nice. He told me that first, I need to sort out myself before trying to make a difference in the world of hepatitis B. I am grateful for the brief discussion with him which gave me the courage to think about re-scheduling my long overdue follow-up appointment. It gave me the clarity that I wanted to share my story with others in hopes that those who are fighting hepatitis know they are not alone. Sharing my story also helps me feel that I am not alone either.

I feel it is very important to fight the stigma surrounding hepatitis. Only then we will be able to talk about it and bust the myths. Only then we will be able to discuss ways to fight it on the ground. It is common in a conservative society to put a label on you as defective and exclude you from everything. For instance, marriage is still, by large, the union in this culture after which people have sexual intercourse and have kids; both occasions that can be possible causes of transmission of this virus. If, before marriage, a person is aware of their diagnosis, they can ensure that their partner is vaccinated and safe. However, in this society, there is also a prevalent culture of arranged marriage which makes this whole discussion almost impossible because so-called “perfection” is demanded. I wonder if submitting your hepatitis status with a marriage certificate was compulsory, would it help in data collection and early detection of this disease or would it encourage stereotyping. What if it was possible to vaccinate every child who starts school to be vaccinated against hepatitis B? After all, mandatory vaccinations are common in other countries. But what about children who can’t afford to go to a school? Can we link hepatitis B vaccination confirmation mandatory with every birth certification? This works in many other countries that vaccinate every baby born – we need to able to fight hepatitis B with a strong response such as this.

I also have an obsession with trying to understand this virus that is sharing my body. So my brain imagined a story to help understand how the chronic hepatitis B works. There are the good guys (liver cells) and bad guys (virus) who grew up together quite happily. Until one day, the good guys realized that these other guys are not from amongst us, let’s kill them. There is a battle and then there is collateral damage. What I want to understand is, if the bad guys aren’t harming the good guys, then why does the body start fighting them? And what is the purpose of their existence if they are not bad guys by default? Perhaps one day someone will help answer my questions. Until then, I’ll try to focus on the inevitable fight.

 

Hepatitis Delta (HDV)

Where Can I Order Hepatitis Delta Testing?

By Sierra Pellechio, BS, CHES, Hepatitis Delta Connect Program Manager

Historically, testing for hepatitis delta has been difficult to access and often not commercially available. With the rise in awareness about hepatitis B and delta coinfection, more tests are beginning to be offered by multiple labs for clinicians in the United States looking to test their patients. Because hepatitis delta can only infect people who also have hepatitis B, the Hepatitis B Foundation’s medical director and leading hepatologist Dr. Robert Gish recommends testing all hepatitis B patients for hepatitis delta. “Screening all hepatitis B patients will allow a better understanding of hepatitis delta prevalence and its impact on outcomes and will identify patients who can be offered treatment within or outside clinical trials.”

The first step in diagnosing an infection is the HDV antibody total (anti-HDV) test. Patients who have recovered from or are currently infected will be positive for the anti-HDV and will present high titers in later stages of acute infection and persist in cases of chronic infection. If the HDV antibody total test is positive, it should be followed by the HDV RNA (PCR) test to confirm an active infection. If this test is negative, a current infection is unlikely.

Testing hepatitis B patients for hepatitis delta is important because when people with hepatitis B are exposed to the hepatitis delta virus, 90% will develop a chronic infection1. Coinfection will alter treatment and management plans, because antivirals effective on hepatitis B do not control hepatitis delta2. While the standard treatment of interferon is less than 30% effective in controlling coinfection, there are new drugs in development. With two of these drugs set to enter phase 3 clinical trials in 2019, it is more important than ever to identify coinfected patients and connect patients into clinical trials.

Until recently, only the anti-HDV test was widely available in the United States. In February 2019, Quest Diagnostics began offering HDV RNA testing, making it easier for patients and their physicians to access this more detailed level of testing. A complete list of labs offering testing is below.

Quest Diagnostics (US)

Tests Offered:

ARUP Laboratories (US) 

Tests Offered:

Cambridge Biomedical (US, Limited States)

Tests Offered:

Mayo Clinic Laboratories (US)

Tests Offered:

Viracor (US)

Tests Offered:

Centers for Disease Control and Prevention (CDC) (US & International)

Tests Offered:

  • HDV Antibody Total
  • HDV RNA
  • Genotyping

Disclaimer: This may not be a comprehensive list of all available labs offering testing.

Please note, if you are a patient in the U.S. and wish to be tested for hepatitis delta, these tests must be ordered through a clinician.

It is very important for coinfected patients to be managed by a liver specialist who is familiar with managing coinfected patients. For assistance in locating a specialist near you, please visit our Physician Directory page. For additional questions, please visit www.hepdconnect.org, email connect@hepdconnect.org, or call our hotline at 215-489-4900.

References:

  1. Hooks, B., Billings, J., & Herrera, J. (2009). Hepatitis D Virus. Practical Gastroenterology.

2. Farci, P., & Anna Niro, G. (2018). Current and Future Management of Chronic Hepatitis D. Gastroenterology & hepatology, 14(6), 342-35

News

We Will No Longer Be Invisible

The Hepatitis B Foundation and the Hep B United coalition are excited to partner with the All of Us Research Program, a program funded by the National Institutes of Health (NIH) to advance precision medicine – health care that is tailored to each person. All of Us will enroll and engage 1 million or more people across the country, from all walks of life, to contribute to research that could improve health for generations to come.

We are partnering with All of Us to increase representation of Asian American and Pacific Islander communities in biomedical research. Diversity and inclusion in health research is critical to understanding how certain diseases or treatments affect individuals differently and helping transform health care to be more customized and effective for each person.

In the U.S., over half of the 2.2 million people living with chronic hepatitis B are Asian Americans and Pacific Islanders. Join All of Us to help researchers better understand the causes and risk factors for chronic conditions like hepatitis B and make health equity a reality.

Visit JoinAllofUs.org to learn more about the All of Us Research Program.

Additional resources:

Fact Sheet: All of Us Research Program 

Infographic: All of Us Research Program 

Flyer : How do I sign up for this research program?

Living with Hepatitis B, Relationships

Valentine’s Day: Dating, Love, and Hepatitis B

Valentine’s Day is a day of celebration, but it can also bring about worries and stress. Some might feel pressure about buying the right gifts for their loved ones. Maybe you’re wondering if it’s too soon in your relationship to celebrate the holiday. We may not be able to help you figure out what type of candy your partner likes the most, but we can help you navigate the holiday if you or a loved one is living with hepatitis B!

Can my partner and I have sex if one of us is infected and the other is not?

One way that hepatitis B is spread is through unprotected sex. This means that certain precautions need to be taken if your partner is uninfected, has not been vaccinated, or has not completed their vaccine series yet. Precautions include using a condom correctly. Using condoms can also prevent other sexually transmitted infections, like hepatitis C and HIV, that can be harmful to everyone, but especially to those who have chronic hepatitis B. Please keep in mind that certain sexual activities carry higher risks of transmission because of tiny, often microscopic tears in the membrane that may occur and increase the chances of direct blood contact! If you believe your partner has been accidentally exposed, they should contact their doctor or a local physician to begin post-exposure prophylaxis (PEP) as soon as possible. PEP can prevent chronic hepatitis B if caught early enough, so it is very important to inform the doctor of a possible exposure soon after it occurs.

If your partner has already completed the 2 dose (where available) or 3 dose vaccine series, there is nothing to worry about! They are not at risk for transmission! The recommended schedule for the three-dose vaccine consists of a dose at 0, 1 and 6 months, and the two-dose adult vaccine is at 0 and 1 month.  Some individuals may be interested in an accelerated vaccine schedule. Please understand that an accelerated schedule entails four shots, not three. The fourth shot would be administered at one year and would provide long term protection. Those that choose a shortened schedule will not have long term protection from hepatitis B if they do not complete the fourth dose. And your partner should have their blood tested 4 weeks after their last vaccine dose to confirm that they are protected.

I’m scared to tell my partner that I have hepatitis B.

It can be intimidating to tell a person something so personal, especially if you are uncertain about how they will react. However, it is extremely important! Even if you are using condoms, it is necessary to let your partner know your status before becoming intimate. Once you tell them, it will be a huge relief!

So, how can you prepare for the conversation?

  1. Research: hepatitis B can be confusing, so it is important that you both are familiar with the infection, including how it is transmitted! Apart from HBF’s website, the Centers for Disease Control and Prevention (CDC) has great information and handouts (in multiple languages!) on the infection. Consider printing one or two fact sheets out for your partner to look over.
  2. Take a deep breath: Don’t rush into the conversation. Take a moment to think about what you want to say. This will help you to stay calm and allow the conversation to progress. Remember to let your partner talk as well!
  3. Speak confidently: Don’t let hepatitis B speak for you! Let your partner know what you’ve learned about your infection and inform them that you are regularly visiting the doctor to monitor the infection. Speaking confidently can help keep them calm as well, and assure them that there is nothing to worry about!

If they react badly to the news at first, don’t worry! Everybody processes things at different rates and many people fear what they don’t understand. Try giving them some space and let them think about the information they’ve been given. You can also show them Heng’s #justB video; it tells the story of a man who fell in love and married a woman who is living with chronic hepatitis B and how he still supports her today! Also, remind your partner that hepatitis B is vaccine preventable! Three simple shots can protect them for life and they will never have to worry about the risk of transmission again!

Some people will never react kindly to the news, and that’s okay too! It may be disappointing, but don’t let it keep you down! You deserve someone who will accept and love you for who you are! Your chronic hepatitis B infection does not define you; it is just a small part of who you are.

For Partners of Chronic Hepatitis B Patients:

Valentine’s Day is a  time of love, and what better way is there to show love than by being supportive? If your partner is living with hepatitis B, you can show them you care in small ways! Perhaps it’s skipping the alcohol once in a while when you two go out with friends so they don’t feel alone. You can also try cooking healthy meals with them or exercising together a few times a week. Small gestures can say big things!

About Hepatitis B

What’s the difference: Hepatitis B vs. Hepatitis E

With five different types of viral hepatitis, it can be difficult to understand the differences between them. Some forms of hepatitis get more attention than others, but it is still important to know how they are transmitted, what they do, and the steps that you can take to protect yourself and your liver!

This is the final installment in a three-part series. You can click the links to view more about hepatitis A and hepatitis C.

What is Hepatitis?

Hepatitis means “inflammation of the liver”. A liver can become inflamed for many reasons, such as too much alcohol, physical injury, autoimmune response, or a reaction to bacteria or a virus. The five most common hepatitis viruses are A, B, C, D, and E. Some hepatitis viruses can lead to fibrosis, cirrhosis, liver failure, or even liver cancer. Damage to the liver reduces its ability to function and makes it harder for your body to filter out toxins.

Hepatitis B vs. Hepatitis E

Globally, hepatitis E is a common liver infection. The World Health Organization estimates that 20 million people are infected each year. The virus has 4 known types: genotype 1, genotype 2, genotype 3, and genotype 4. Genotypes 1 and 2 are primarily spread through  fecal-oral transmission or by consuming food or water that has been contaminated and are only found in the human population. Typically, these genotypes are found in Africa, Asia, and Mexico. Poor sanitation and lack of clean water infrastructure contribute to the spread of genotypes 1 and 2.

Image Courtesy of Canva

Genotypes 3 and 4 are found in animal populations and can be passed on to a human if their meat is undercooked and consumed. Pigs, deer, boar, and chickens have all been found to carry the hepatitis E virus, but studies have shown that consuming undercooked infected pig (pork) and wild boar have commonly been the main source of animal-to-human transmission. Although less common, shellfish has also been found to carry the hepatitis E virus as well. Genotypes 3 and 4 are most generally found in China, Taiwan, Japan, and other developed countries.

It is important to remember that hepatitis B is not spread by contaminated food or water. You cannot get hepatitis B by sharing utensils or eating food prepared by someone who is infected. The hepatitis B virus is a blood-borne pathogen, which means that it is only spread through direct blood contact with an infected person’s blood.

Unlike hepatitis B, hepatitis E usually does not progress to a life-long infection. However, the Centers for Disease Control and Prevention (CDC) reports that the number of genotype 3 cases that lead to chronic liver disease are on the rise. In most cases, the infection typically resolves itself after a few weeks. Globally, young people aged 15-40 are considered to be the most at-risk population. Children under 15 generally have no symptoms or develop a mild illness. Young adults will often experience symptoms such as jaundice, vomiting, reduced appetite, and fatigue. At the moment, there are no specific treatment options for hepatitis E. Recommendations include getting plenty of rest and staying hydrated. In extreme cases, hospitalization may be required. Hepatitis E can also lead to fulminant hepatitis, or acute liver failure. Fulminant hepatitis most often occurs with hepatitis E infections in pregnant women and those with weakened immune systems.

Pregnant Women and Hepatitis B/E

Image Courtesy of Canva

Both hepatitis B and E can be transmitted from mother-to-child. This type of transmission is rare for hepatitis E patients but occurs frequently in mothers living with chronic hepatitis B. This is because hepatitis B is a “silent infection”; it often has no symptoms so many mothers do not know that they are infected. It is much less common for hepatitis E to be spread from mother to child because the infection typically resolves itself in 4-6 weeks. The danger with hepatitis E and pregnancy lies within the complications that it can cause. Research has shown that pregnant women have a higher risk of developing fulminant hepatitis than other patients, although more studies need to be conducted to discover the reason why this occurs. Hepatitis E tends to be most dangerous for women in their second and third trimester.  According to the CDC, maternal death rates from hepatitis E can reach 10% – 30% in the final trimester. Mothers can also experience severe illness, premature delivery, and the loss of their pregnancy.

With hepatitis B infection, approximately 90% of infants born to hepatitis B infected mothers will develop chronic hepatitis B and have an increased risk of developing liver disease and liver cancer later in life. This can be avoided, however, if certain precautions are taken once the child has been born!  By making sure the doctor is aware of the mother’s hepatitis B and having the delivery staff administer 1) the first dose of the hepatitis B vaccine and 2) one dose of the Hepatitis B Immune Globulin (HBIG, if available) in the delivery room, the newborn has more than a 95% chance of being protected for life! After the initial shots are given, it is extremely important to follow through with the vaccination schedule for a lifetime of protection.

Prevention

Hepatitis B can be prevented with a 3-dose vaccine or a 2-dose vaccine for adults where available! While you wait to complete the vaccine series, simple steps to prevent transmission include washing your hands thoroughly with hot water and soap, cleaning surfaces that come  into contact with blood with a diluted bleach solution, and not sharing objects that may have trace amounts of blood on them such as razors, toothbrushes, nail clippers and body jewelry. Although there is no vaccine approved for hepatitis E in the United States, there is one available in China. For hepatitis E, genotypes 1 and 2 can be prevented by thoroughly washing your hands after using the bathroom and by boiling water before drinking it. Transmission of genotypes 3 and 4 can be prevented by thoroughly cooking all meat and avoiding undercooked meats. Pregnant women should exercise caution when consuming pork, deer meat, and wild boar.

Baruch S. Blumberg Institute