Hep B Blog

Get Ready for a Hepatitis Awareness Month Twitter Chat!

Join Hepatitis B Foundation, NASTAD and CDC’s Division of Viral Hepatitis for a Twitter HepChat at 2 p.m. (ET) Thursday, June 13th. The chat will highlight Hepatitis Awareness Month outreach events and allow partner organizations to share their successes, challenges and lessons learned from their efforts. Keep us posted with your events throughout the month with the hashtag #Hepaware19 and remember to join the Twitter Chat conversation with the hashtag #HepChat19.

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Hepatitis Delta: Flying Under the Radar in the U.S.

As of 2019, the Centers for Disease Control and Prevention (CDC) requires over 100 diseases, infections and conditions – including hepatitis A, B and C – to be reported by state and local health departments. Physicians who diagnose these conditions, and diagnostic laboratories, are required to report confirmed and/or suspected cases to health departments, who then notify the CDC. This requirement allows the government to monitor disease patterns and track outbreaks to contain the spread of disease and protect the public. While all other forms of viral hepatitis are federally ‘reportable’, hepatitis delta cases are not required to be reported. Hepatitis delta is the most severe form of viral hepatitis, and spreads similarly to hepatitis B; through blood and sexual fluids, making it a public health threat, particularly for the 2.2 million people who already have hepatitis B in the U.S.

Hepatitis delta can only be contracted along with hepatitis B or after someone is already infected with hepatitis B. Acute cases can cause liver damage and even liver failure, and in chronic cases, can accelerate the rate of liver disease progression, as there are no effective treatments available. Although estimated to affect 5-10% of hepatitis B patients, hepatitis delta is severely underdiagnosed, leaving the true disease burden largely unknown in the U.S. and worldwide.

In conjunction with awareness efforts, adding hepatitis delta as a reportable disease could reveal a more accurate prevalence landscape of hepatitis B and delta coinfection and allow for more effective prevention efforts. The CDC asserts that “reporting of cases of infectious diseases and related conditions has been and remains a vital step in controlling and preventing the spread of communicable diseases,1” yet hepatitis delta has still been left out of the list of nationally reportable diseases. While notifying CDC is only voluntary2, 23 states have designated hepatitis delta infections as reportable to local and state health departments, allowing for surveillance of outbreaks, particularly relevant to the current nationwide opioid crisis.

Worchester, Massachusetts, which is currently experiencing a hepatitis A outbreak, also saw one of the worst hepatitis delta outbreaks in the country in the mid 1980’s. The infection was seen among drug users and their sexual partners, sickened 135 people, and killed 15. In those infected with hepatitis B, delta coinfection was present in 54% of drug users and 33% of their sexual partners3
. Interestingly, in Massachusetts, only labs (and not clinicians) are required to report hepatitis delta cases. The reporting requirement allowed the state to be alerted of a spike in cases and respond accordingly – a luxury many other states may not have if neither labs nor clinicians are required to report in their state.

Some states are even scaling back their surveillance; in 2016, New York State removed hepatitis delta from their list of reportable diseases, citing just 21 cases in a two-year period and a health code that asserts a “providers obligation” to “report unusual manifestations of novel strains of hepatitis.”4. Although hepatitis delta is more common outside the U.S., there is evidence to suggest persistent and even growing prevalence. A 2016 prevalence map presented by Eiger BioPharmaceuticals revealed New York City as a “hot-spot” for hepatitis delta cases5. Although more recent prevalence studies are sparse, and often include only small sample sizes, several have noted increases in hepatitis delta coinfection among certain groups. One study in Baltimore, published in 2010, compared blood samples from drug users in the 1980’s to samples obtained from 2005-2006 – and found a 21% increase in hepatitis delta coinfection among people already chronically infected with hepatitis B6. A 2015 study analyzed the blood records of 2,100 hepatitis B positive veterans – nearly 4% were coinfected7. A larger study, analyzing chart records of 500 chronic hepatitis B patients in California found that 8% of patients had a delta coinfection8. Another 2018 publication utilized data from 2011-2016 from the National Health and Nutrition Examination Survey (NHANES) and estimated there to be over 350,000 Americans with past or current hepatitis delta9.

While the true burden of hepatitis delta in the U.S. is debated, one study that analyzed diagnosis codes for over 170 million people showed 10,000 coinfected patients newly diagnosed in 2016 alone4. The American Association for the Study of Liver Diseases (AASLD) recommends delta testing in high-risk groups, but countless journals and leading hepatologists have called for universal testing of hepatitis B patients for hepatitis delta9,10,11  which could reveal thousands of unknown infections. Low awareness, testing, and the lack of inclusion on the notifiable diseases list contribute to the unclear picture of prevalence in the U.S. Inconsistent reporting across states creates holes in data collection and opportunities for missed outbreaks and subsequent treatment and prevention efforts. Adding hepatitis delta to the list of reportable diseases nationally could be the key to understanding who this ‘hidden epidemic’ is affecting, and where, and allow for effective surveillance to prevent future infections.

For more information about Hepatitis Delta Connect or hepatitis delta, visit www.hepdconnect.org or email connect@hepdconnect.org.

References:

1. Centers for Disease Control and Prevention. (1990, June 22). Mandatory Reporting of Infectious Diseases by Clinicians. Morbidity and Mortality Weekly Reports. Retrieved from https://www.cdc.gov/mmwr/preview/mmwrhtml/00001665.htm.

2. Centers for Disease Control and Prevention. (2018). National notifiable diseases surveillance system (NNDS): Data collection and reporting. Retrieved from https://wwwn.cdc.gov/nndss/data-collection.html

3. Lettau, L. A., McCarthy, J. G., Smith, M. H., Hauler, S. C., Morse, L. J., Ukena, T., et al. (1987). Outbreak of severe hepatitis due to delta and hepatitis B viruses in parenteral drug abusers and their contacts. N Engl J Med, 317(20), 1256-1262.

4. The City of New York. (2016). Hepatitis D and E and other suspected infectious viral hepatitides reporting. Retrieved from http://rules.cityofnewyork.us/tags/reportable-diseases.

5. Martins, E and Glenn, J. Prevalence of Hepatitis Delta Virus (HDV) Infection in the United States: Results from an ICD-10 Review. Poster Sa1486 DDW May 2017.

6. Lauren M. Kucirka, Homayoon Farzadegan, Jordan J. Feld, Shruti H. Mehta, Mark Winters, Jeffrey S. Glenn, Gregory D. Kirk, Dorry L. Segev, Kenrad E. Nelson, Morgan Marks, Theo Heller, Elizabeth T. Golub, Prevalence, Correlates, and Viral Dynamics of Hepatitis Delta among Injection Drug Users, The Journal of Infectious Diseases, Volume 202, Issue 6, 15 September 2010, Pages 845–852.

7. Kushner, T., Serper, M., & Kaplan, D. E. (2015). Delta hepatitis within the veterans affairs medical system in the United States: Prevalence, risk factors, and outcomes.

8. Gish, Robert & Yi, Debbie & Kane, Steve & Clark, Margaret & Mangahas, Michael & Baqai, Sumbella & A Winters, Mark & Proudfoot, James & Glenn, Jeffrey. (2013). Coinfection with Hepatitis B and D: Epidemiology, Prevalence and Disease in Patients in Northern California. Journal of gastroenterology and hepatology. 28. 10.1111/jgh.12217

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 thatfor 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.

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 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!

 

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.

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

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.

 

Where Can I Order Hepatitis D Testing?

By Sierra Pellechio, Hepatitis Delta Connect Coordinator

Historically, testing for hepatitis D, also known as hepatitis delta or HDV, has been difficult to access and often not commercially available. With the rise in awareness about hepatitis B and D coinfection, more tests are beginning to be offered by multiple labs for clinicians in the United States looking to test their patients. Because hepatitis D 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 D. “Screening all hepatitis B patients will allow a better understanding of hepatitis D 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 a hepatitis D infection is the HDV antibody total (anti-HDV) test. Patients who have recovered from or are currently infected with hepatitis D 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 D is important because when people with hepatitis B are exposed to the hepatitis D virus, 90% will develop a chronic hepatitis D infection1. Coinfection will alter treatment and management plans, because antivirals effective on hepatitis B do not control hepatitis D2. 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 hepatitis D testing is below.

Providers can order HDV testing from:

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 hepatitis D testing.

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

It is very important for hepatitis B and D 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

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?