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!
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.
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!
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:
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.
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!
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!"
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
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
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:
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. 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:
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.
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?
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.
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!
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:
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):
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:
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
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!
