Hep B Blog
Hepatitis B Advocacy, Living with Hepatitis B

#Tri4ACure: Racing For Hepatitis B Awareness, Cure Research, and Health

Edwin Tan learned about his hepatitis B diagnosis in high school after he was banned from donating blood to the Red Cross. Unsure as to why he was not allowed to donate, Edwin asked his doctor about it a few years later. When the routine blood tests came back with irregular results, the doctor ordered an additional test for hepatitis B; the hepatitis B test came back positive.

Despite the shock of the diagnosis, Edwin did not let it hold him back! He researched the infection and discovered the importance of keeping his liver healthy. He took steps to change his diet and incorporate more exercise into his daily routine. Studies show that regular exercise can greatly reduce the risk of liver disease and liver cancer. After a friend invited him to participate in a small triathlon, Edwin decided that triathlons and racing were the perfect ways to have fun while staying healthy!  

Now, Edwin is competing in a series of six races in midwestern America to help raise  money and awareness for hepatitis B research, patient outreach, and education through the Hepatitis B Foundation! You can make a gift to support Edwin’s fundraising efforts here.

“Hepatitis B is something that doesn’t seem to have a whole lot of awareness around it, has stigma associated with it, and doesn’t seem to attract the same attention as a lot of other major diseases out there,” said Edwin. “I believe that the Hepatitis B Foundation is working to tackle all of these issues and focus on finding a cure for it. Because hepatitis B was the reason I started racing and I am interested in increasing awareness, I found it fitting to race for the Hepatitis B Foundation.”

On Saturday, June 15th, Edwin competed in the Minnetonka Triathlon in Minnetonka, Minnesota – his first of six races this summer. In just under an hour and a half he accomplished: swimming more than 100 yards, biking 15 miles, and running 3 miles!

Edwin’s next race will be on Saturday, June 22nd at Grandma’s Marathon in Duluth, Minnesota and we are looking forward to cheering him as he works hard to raise awareness and prove that those living with hepatitis B can achieve their goals

To follow updates on Edwin’s journey, you can follow the Hepatitis B Foundation or Hep B United on Facebook, Twitter and Instagram. Be sure to use the hashtag #Tri4ACure!

Hepatitis B Advocacy, Living with Hepatitis B

Know Your Rights: Legal Protections for Those Living With Hepatitis B

Despite being the world’s most common liver infection, hepatitis B remains stigmatized and those living with it can still face discrimination from various sources. Each year, the Hepatitis B Foundation answers numerous calls from around the world from people who have faced school, workplace, and travel challenges due to their hepatitis B status. These challenges are typically rooted in misinformation, outdated laws or guidelines, stigma, and an overall lack of awareness. However, there are laws and organizations who will work to protect you from such discrimination!

The Hepatitis B Foundation has added a new section to our website that focuses on the rights of people living with hepatitis B. We’ve compiled information on common barriers that those living with hepatitis B may face while applying to schools, jobs, or accessing affordable medicine. Each of the below sections provides information on discriminatory practices, what you can do if you experience discrimination, and how the Hepatitis B Foundation is working to fight discrimination.

In the United States, all forms of hepatitis B related discrimination are illegal under the Americans with Disabilities Act (ADA) and the Affordable Care Act (ACA). Both laws include provisions that protect people living with chronic conditions. Unfortunately, some forms of discrimination are still legal in certain countries, but steps can sometimes be taken to appeal to immigration policies in these areas. Local organizations can also help those living in foreign countries to navigate complex laws or policies regarding those living with hepatitis B. Many of these organizations can be found through the World Hepatitis Alliance’s member list. Join them and add your voice to eliminate hepatitis B discrimination in your country.

Specific protections, resources, and ways to combat legal discrimination can be found in the Know Your Rights section of our website! If you are faced with discrimination due to hepatitis B, it is important to know your rights and to have information to support your case. Use the information on our site to help advocate for yourself, join with others, or contact the Hepatitis B Foundation at info@hepb.org if you need additional assistance.

Living with Hepatitis B, Relationships

If I Have Hepatitis B, Why Doesn’t My Partner?

Why do some people — who were not vaccinated — never get hepatitis B from their sexual partners who are living with chronic hepatitis B? The question is a common one. As a sexually transmitted infection, it may seem obvious that an individual may contract hepatitis B from their partner, especially if they have been together for some time.

It comes down to factors, such as the type of sexual activity partners engage in, the viral load (HBV DNA) of the infected partner, and who is on the receiving end of infectious body fluids, especially blood (which contains the most virus), and semen.

Having one partner infected, while the other is not, can add more stress to an already traumatic hepatitis B diagnosis. “It was very confusing and made me question how was it possible I was the only one infected,” said a woman who tested positive while her husband tested negative. “I thought it was possibly a mistake, maybe I was a biological anomaly, which of course I was not.”

Let’s look at the factors that may play a role in transmission of hepatitis B infection through sexual activity.

Viral load: Semen, vaginal fluids and blood all contain the hepatitis B virus (HBV), and the higher the viral load in the blood of an infected individual, the more infectious they are considered to be. Having an undetectable viral load might reduce or eliminate the chance of transmitting the virus to someone during unprotected sex; research is still trying to assess whether a person with an undetectable viral load in the blood is able to transmit the virus through sex. This is a good reason for individuals living with hepatitis B to talk to their doctor about the benefits of starting antivirals if they have detectable HBV viral load in their blood; treatment which lowers the viral load in the blood might also serve as a prevention measure for transmitting the virus.

Once an individual tests positive for hepatitis B surface antigen (HBsAg), they should encourage their partners to get screened for hepatitis B, and vaccinated if they are still susceptible to the virus.

The timing of sexual activity: An infected person who is menstruating is more likely to transmit hepatitis B infection to an unvaccinated partner, because menstrual blood can contain higher levels of HBV than vaginal secretions. That is why dental dams and condoms are recommended to provide a reasonable barrier against exposure, during that time of the month.

The type of sexual activity: Certain sexual activities are far more efficient at transmitting hepatitis B virus than others. Oral sex appears to have a lower rate of hepatitis B transmission than vaginal sex. Anal sex carries a higher risk of transmission because of tears in the skin that can occur during penetration, which increases the likelihood of transmission of HBV to an unvaccinated partner.

Fingering carries a lesser risk, unless the infected partner is menstruating while the other partner has bruises or cuts on their hands that could allow entry of hepatitis B virus from the body fluid into the bloodstream. In such cases, gloves are highly recommended.

The hepatitis B status of the other partner: The “uninfected” partner could have already been infected and cleared the virus, or vaccinated as an infant. When a person is first diagnosed with hepatitis B, doctors often test his or her partner for only the hepatitis B surface antigen (HBsAg), which indicates a current hepatitis B infection. If they are negative for HBsAg, they are advised to receive the hepatitis B vaccine as soon as possible. However, this does not mean that they were never infected.

Testing for the hepatitis B surface antibody (also known as anti-HBs or HBsAb), and hepatitis B core antibody (HBcAb) is the only way to identify a past recovered infection or prior vaccination.

Hepatitis B is often called the “silent” infection because many people who get hepatitis B may not experience any of the alarming symptoms (like fever or jaundice). As a result, many individuals may never realize they were infected. A partner who tested negative for HBsAg, may actually have been infected in the past and cleared the infection and now has protective hepatitis B surface antibodies to forever safeguard them from infection. If they’re vaccinated without proper screening, then tested for HBsAb after vaccination, they will test positive for surface antibodies, without ever knowing that their antibodies resulted from a past infection, not immunization.

Bottom line, if one partner is diagnosed with hepatitis B and the other is not, it might seem unusual, but it is not uncommon. Just like any other virus, there is not a 100% chance of transmission with exposure. The undiagnosed partner should get tested using the 3-panel blood test (HBsAg, HBsAb, and HBcAb) and immediately vaccinated if they are still vulnerable to a hepatitis B infection (HBsAb negative).

The hepatitis B vaccine is safe, effective, and provides lifelong protection.

Take a quiz to find out how much you know about hepatitis B transmission: click here.

Hepatitis B Advocacy, United States

Behind the Scenes of A Viral Hepatitis Elimination Plan in Pennsylvania

In Pennsylvania, the Hepatitis B Foundation is collaborating with various stakeholders to launch a State Viral Hepatitis Elimination Plan! Join us as we document our process from start to finish!

In this video, Michaela Jackson, MS recounts the Hepatitis B Foundation’s attendance to the first ever State Viral Hepatitis Elimination Stakeholder Planning Meeting! The meeting, which was hosted by the Pennsylvania Department of Health, brought awareness and education to the state’s lawmakers!

HDV, Hepatitis Delta (HDV)

Hepatitis B Foundation: Now Part of the NORD Rare Disease Community!

We’re pleased to announce that the Hepatitis B Foundation (HBF) is now a member of NORD, the National Organization for Rare Disorders, representing our program, Hepatitis Delta Connect. NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. We will join 280 other patient organization members, all committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

Although globally, hepatitis delta is estimated to affect 15-20 million people, in the U.S. it is classified as a rare disease, as it is estimated to affect less than 200,000 people. The complicated nature of the virus and limited prioritization contribute to the gap in awareness, resources, testing practices and adequate treatments for hepatitis B and delta coinfection. Joining NORD will help amplify our voice, raise awareness about hepatitis delta in people living with chronic hepatitis B, provider and pharmaceutical communities and contribute to health policy efforts.

Hepatitis Delta Connect has previously been active with NORD through participating in rare disease Twitter chats and presenting a poster at the NORD Rare Action Summit in October 2018. We’re very excited to be a part of the coalition, and to be spreading awareness about hepatitis delta!

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

Hepatitis B Advocacy, Living with Hepatitis B

#Tri4ACure: From Hepatitis B Diagnosis to Advocating for a Cure

 

 

 

 

 

 

 

 

 

Meet Edwin Tan – a 29-year-old mechanical design engineer from Minneapolis, Minnesota! In 2014, Edwin was diagnosed with hepatitis B. Like many others living with hepatitis B, his diagnosis was a shock. Before his diagnosis, all he knew was that he was banned from giving blood to the Red Cross, but no one had explained the reason why. A routine blood test provided no explanations either, so his doctor decided to test for hepatitis B. The test revealed that Edwin was living with chronic hepatitis B.

After his diagnosis, Edwin decided to learn all that he could about the infection. Through his research, he found that one of the best ways to keep his liver healthy was through small lifestyle changes. Edwin began to pursue healthier life choices by increasing the amount of exercise he was getting and paying closer attention to his diet. Although he loved craft beer, he knew that drinking could be extremely dangerous to those with liver infections, so he willingly gave up all alcohol. Edwin’s dedication to a more active lifestyle led him to challenge himself by competing in local races and triathlons.

Edwin’s journey led him to realize that there is a lack of awareness about hepatitis B. He noticed that the stigmas facing those living with hepatitis B could take a physical and mental toll on an individual and impact how they viewed themselves. Edwin’s observations inspired him to reach out to the Hepatitis B Foundation to raise money and awareness for hepatitis B research, patient outreach, and education. Since his passion for racing was discovered due to his commitment to health after his diagnosis, it seemed appropriate for him to use his love of sports to fundraise for hepatitis B awareness and research! He hopes that his athletic achievements help others living with hepatitis B to realize that they are more than their infection.

Now, Edwin is training for a series of six races—triathlons, a marathon and an ironman – and we’ll be with him every step of the way! You can make a gift to support Edwin’s fundraising efforts here.

“I want to be a positive example against the stigma associated with Hep B and the shame that some people may feel for having it. Completing an Ironman, which is regarded as one of the most difficult one-day athletic events, serves as a good example that we each can accomplish anything we want as long as we believe in ourselves.”

To follow updates on Edwin’s journey, you can follow the Hepatitis B Foundation or Hep B United on Facebook. Be sure to use the hashtag #Tri4ACure!

Uncategorized

New Report: Increasing Hepatitis B Awareness and Prevention in the Nail Salon Workforce

North American Occupational Health and Safety Week (May 5-11) is a time to raise awareness about the importance of injury and illness prevention in the workplace! This week, we’re focusing on health and safety within the nail salon industry, specifically the risk for hepatitis B transmission and opportunities to increase awareness and education about hepatitis B among nail salon workers.

In the U.S., the nail salon workforce is comprised mostly of Vietnamese Americans, with many being immigrants. Refugee and immigrant communities are often susceptible to worker exploitation (including labor trafficking) and encounter cultural and linguistic barriers that may leave them vulnerable to occupational health and safety risks, including hepatitis B transmission.

During routine work, nail technicians may be exposed to a client’s blood or other bodily fluids. It is important for nail salon workers to take precautionary measures to protect themselves and their clients to prevent the potential spread of the hepatitis B virus. More importantly, the nail salon industry (including salon owners and state health departments or boards that regulate nail salons) should implement policies that support greater education, awareness, and prevention of hepatitis B transmission among its workforce.

In October of 2011, the American College of Gastroenterology urged the need for increased surveillance and information on disinfection and infectious disease prevention, particularly for hepatitis B and C in nail salons. Since then, no major research or analysis has been conducted to better understand hepatitis B transmission or the policies that protect nail salon workers. In a new report released by the Hepatitis B Foundation, “The Impact of Nail Salon Industry Policies and Regulations on Hepatitis B Awareness and Prevention,” we seek to further understand the nail salon industry landscape through analyzing state policies that govern nail salons and identify strategies to support increased hepatitis B education, awareness, and prevention.

The nail salon industry is regulated at the state level by a regulatory Board of Cosmetology that oversees and ensures nail technicians and nail salons comply with all rules and regulations. In this report, we analyze the nail salon workforce and industry regulations and provide recommendations that can address specific concerns. We conducted phone interviews with health clinics, public health workers, and other relevant stakeholders to better understand the challenges this population encounters when accessing hepatitis B education and care. In addition, we conducted a policy analysis of each state’s Board of Cosmetology to assess their effectiveness in protecting workers from exposure to bloodborne pathogens, specifically hepatitis B. In our analysis, we found that several states may not adequately protect workers from workplace hazards that may increase their risk of hepatitis B exposure. With sanitation and disinfection requirements that greatly vary between states, low compliance can leave workers susceptible to the transmission of bloodborne pathogens, including the hepatitis B virus.

We offered the following recommendations to provide industry changes and community initiatives that can help protect workers or link them to care:

  • Build partnerships between community organizations and nail salons to increase hepatitis B education, testing, and vaccination among nail salon workers
  • Integrate hepatitis B education into the nail technician licensing curriculum
  • Implement continuing education (CE) requirements around hepatitis B prevention and uphold sanitation requirements
  • Provide multilingual course training materials and written licensing exams
  • Adopt a sanitation rating system

Additionally, through our analysis, we found that four states have policies that discriminate against nail salon workers affected by hepatitis B by barring them from working in nail salons. Even with federal legal protections from the Americans with Disabilities Act, the continued discrimination in this industry presents a clear need to increase hepatitis B knowledge and awareness. Further state-level advocacy will be needed to address discriminatory policies. We must hold states accountable and advocate for policies and regulations that protect individuals affected by hepatitis B and prevent transmission of hepatitis B in the nail salon workplace.


Be sure to check out our full report for a detailed analysis of current state regulations and policies to assess their impact on educating and protecting nail salon workers and preventing hepatitis B transmission in the workplace.

Whether you work in a nail salon or visit one for a manicure or pedicure, be knowledgeable about the steps you can take to protect yourself. For further information about nail salon hazards and a complete guide to protecting your health and preventing injury in the workplace, check out OSHA’s guide here.

HBV, News

Join us 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.

Continue reading "Join us for a Hepatitis Awareness Month Twitter Chat!" →

Hepatitis Delta (HDV)

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

Baruch S. Blumberg Institute