Join Hepatitis B Foundation, NASTAD and CDC’s Division of Viral Hepatitis for a Twitter #HepChat at 2 p.m. (EST) Thursday, June 14. The chat will highlight Hepatitis Awareness Month outreach events and allow hepatitis B and C partner organizations to share their successes, challenges and lessons learned from their efforts. HBF’s Kristine Alarcon and Jason Crum, this month’s featured storyteller will also be LIVE on Facebook, so if you’re not on twitter join us at hepbfoundation.
On Thursday, Oct. 12, representatives from Hepatitis B Foundation, CDC’s Division of Viral Hepatitis, and NASTAD (the National Alliance of State and Territorial Aids Directors) will co-host a twitter chat at 2 p.m. EST using the hashtag #liverchat.
Also participating is special guest Katherine McGlynn, PhD of the National Cancer Institute. Dr. McGlynn is a Senior Investigator at the National Cancer Institute, Division of Cancer Epidemiology & Genetics, Metabolic Epidemiology Branch. She is a researcher and expert in hepatocellular carcinoma.
Below are questions scheduled to be discussed during the chat. How can you contribute to the conversation? Share any resources or strategies you have that raise awareness and improve liver cancer surveillance. Join the conversation with the hashtag #liverchat.
Q1: What is primary liver cancer and why is raising awareness so important?
Q2: What are the risk factors for liver cancer and why should people with viral hepatitis worry?
Q3: What are some strategies to help prevent viral hepatitis and liver cancer?
Q4: What are the barriers that keep people from getting screened for hepatitis and liver cancer and how can they be addressed?
Q5: What can people living with chronic hepatitis B and C do to protect their liver health and prevent liver cancer?
Q6: Why are some populations more vulnerable to viral hepatitis and liver cancer, and how do we address the disparities?
Q7: What can we do to raise awareness & educate vulnerable communities about viral hepatitis and its link to liver cancer?
Q8: What resources are available to learn more about viral hepatitis and liver cancer?
Co-hosts and special guests for the chat include:
Hepatitis B Foundation – @hepbfoundation
NASTAD – @NASTAD
CDC Division of Viral Hepatitis – @cdchep
CDC Cancer – @cdc_cancer
Dr. Katherine McGlynn – National Cancer Institute, Division of Cancer Epidemiology and Genetics – @NCIEpiTraining
CDC National Prevention Information Network (CDCNPIN) will be moderating the chat – @cdcnpin
Confirmed participants and their handles include:
National Viral Hepatitis Roundtable – @NVHR1
Hep B United – @hepbunited
Coalition Against Hepatitis For People of African Origin – @CHIPO_HBV
Hep B United Philadelphia – @HepBUnitedPhila
Liver Cancer Connect – @livercancerconn
Hep Free Hawaii – @hepfreehawaii
Hep Free NYC – @hepfreenyc
Just getting started with Twitter? Want to know how to join the conversation? Type #liverchatin the search box of the Twitter application to follow the chat, and click on “Latest”.
You can prepare your tweets in response to the topics listed above in advance, or you can also tweet on the fly, re-tweet, or Like a tweet from the chat.
The questions are labeled Q1, Q2, etc. so please respond/answer specific question by using A1, A2, etc. in front of your tweets. Remember to include the #liverchathashtag, which is not case sensitive, in all of your tweets.
If you plan to participate, please contact us at email@example.com and we’ll add you to the list of confirmed participants. Let us know if you have any other questions about joining the chat.
In the U.S. and around the world, the medical community is finally acknowledging a hidden threat to people with hepatitis B – a virulent liver coinfection that requires the presence of the hepatitis B surface antigen (HBsAg) to survive.
Hepatitis D (Delta), which causes the most severe liver infection known to humans, infects between 15 to 20 million people worldwide and an estimated 20,000 people living with chronic hepatitis B in the U.S.
For years, health officials assumed hepatitis D did not threaten Americans and occurred primarily in Central Asia and Sub-Saharan Africa. However, recent U.S. Centers for Disease Control and Prevention (CDC) studies found 4 to 5 percent of Americans with chronic hepatitis B are also infected with hepatitis D.
As a result of these findings, researchers including Hepatitis B Foundation‘s Medical Director Dr. Robert Gish, are now pushing medical organizations to establish hepatitis D testing and monitoring guidelines so doctors will start testing patients for this dangerous liver disease.
Recently, the foundation sponsored a webinar, attended by dozens of healthcare providers, patients and officials from around the world, in which Dr. Gish outlined whom should be tested for hepatitis D, and how it should be treated. A new webinar that examines hepatitis D prevalence in the U.S. is scheduled for 3 p.m. (EST), Wednesday, June 28. To register for the webinar click here.
How do people get infected with hepatitis D? Infection occurs when people are exposed to blood and body fluids from someone with an active hepatitis D infection. Basically, they get both hepatitis B and D in one exposure. This is called an acute coinfection. Some healthy adults are able to clear both infections, but they often experience serious liver damage during the clearance or recovery phase.
Another way to become infected is if someone infected with chronic hepatitis B is exposed to someone with hepatitis D. This is called a superinfection, and in 90 percent of cases, people with chronic hepatitis B will also develop chronic hepatitis D.
Who is at risk of hepatitis D? Anyone with chronic hepatitis B who themselves or their family comes from Sub-Saharan Africa, China, Russia, Middle East, Mongolia, Romania, Georgia, Turkey, Pakistan and the Amazonian River Basin should be tested. Hepatitis D rates in some of these countries can reach up to 30 percent in people infected with chronic hepatitis B.
What medical conditions suggest hepatitis D? Anyone with chronic hepatitis B who is not responding to antiviral treatment, or who has signs of liver damage even though they have a low viral load (HBV DNA below 2,000 IU/mL) should be tested. Fatty liver disease (caused by obesity) and liver damage from alcohol or environmental toxins should be ruled out before testing for hepatitis D.
Often, people with hepatitis D have low viral loads (even if they are hepatitis B “e” antigen HBeAg-positive), but they have signs of liver damage, including elevated liver enzyme (ALT/SGPT) levels.
Do hepatitis B antivirals work against hepatitis D? No. The hepatitis D virus (HDV) is structurally different from the hepatitis B virus (HBV) and does not respond to tenofovir and entecavir used to treat hepatitis B. Hepatitis B antivirals will lower HBV DNA, but they don’t reduce HBsAg, which HDV need to thrive and reproduce.
How is hepatitis D treated? The only proven hepatitis D treatment is pegylated interferon. Interferon cures hepatitis D 15 to 25 percent of the time after one year of treatment. Once interferon clears hepatitis D, doctors treat patients who continue to be infected with HBV with antivirals. There are dozens of research companies now looking into hepatitis D treatment, and if researchers can find a cure for hepatitis B that eradicates HBsAg, it will also be effective against hepatitis D.
How should people with hepatitis D be monitored? According to Dr. Gish, doctors should:
Monitor patients’ ALT/SGPT and liver function at least every six months
Perform an ultrasound of the liver and conduct a liver cancer biomarker panel (including AFP, AFPL3% and DCP) every six months;
And, perform viral load (HBV DNA) and HDV RNA testing every six months.
How is hepatitis D prevented? The hepatitis B vaccine prevents hepatitis D infection, as does use of safe sex and safe injection practices. According to Dr. Gish, all hepatitis B-positive pregnant women should be tested for hepatitis D if they or their families are from a country with high rates of hepatitis D, or if they have signs of liver damage — even if they do not come from a region with high hepatitis D rates.
If a pregnant woman is infected with either hepatitis B and/or hepatitis D, immunizing her newborn with the first dose of the hepatitis B vaccine within 12 hours of birth and giving the baby a dose of HBIG (hepatitis B antibodies) will prevent both infections.
Bottom line, if you are infected with chronic hepatitis B, you should be tested for hepatitis D if:
You or your family comes from a region with high rates of hepatitis D; and/or
You have a low viral load, but you continue to have signs of liver damage, indicated by elevated ALT/SGPT or an ultrasound exam of your liver, if your doctor has ruled out fatty liver, NASH or alcohol-related liver damage.
Talk to your doctor about getting tested. Click here for a hepatitis D fact sheet to give to your doctor and click here for a patient-oriented fact sheet. An affordable hepatitis D test has recently become available in the U.S. For more information, click here.
Find answers to frequently-asked-questions about hepatitis D here.
To watch the webinar featuring Dr. Gish discussing the hidden, hepatitis D epidemic, click here.
I am a retiree and volunteer working to address hepatitis B discrimination, which involves a serious, relatively unknown chronic disease that impacts Asian-American and Pacific Islander American (AAPIA) immigrants and refugees who are often isolated by culture and language, which makes this discrimination especially egregious.
As a fifth-generation AAPIA, I’d heard of hepatitis B but was not aware that it leads to cirrhosis or liver cancer or that AAPIAs make up 50 percent of the country’s estimated 2 million hepatitis B cases, but represent less than 5 percent of the U.S. population.
These facts came into sharp focus in 2010, when a college senior was devastated to learn she would not be permitted to enroll in a healthcare program due to her chronic hepatitis B. Nothing in the school’s admissions policy or information published by the profession’s national admissions coordinating agency had prepared the student for this. When the student informed me that an older friend with hepatitis B was completing a similar healthcare program at a different institution, I advised her to challenge her school’s exclusion policy.
The issue raised many questions that called for research and consultation with hepatitis B specialists and community health and civil rights advocates to find out how and why schools were permitted to have such different hepatitis B policies. I also sought to compare various institutional policies with their respective state licensing laws for providers with hepatitis B. Fortunately, I was referred to an attorney who had an understanding of the disease who challenged the school’s exclusion policy. This led to the school’s implementation of a new, progressive policy for students with chronic hepatitis B.
Though gratified with the outcome for this student, I feared other students with hepatitis B would face similar discrimination, because too many medical school policies barring enrollment of students with hepatitis B were undisclosed. Future victims might not know how or where to access assistance or legal help. Given the World Health Organization’s map of global regions with high rates of hepatitis B and the current patterns of U.S. immigration, I believed hepatitis B discrimination would soon impact other immigrant/refugee communities.
My initial contact with the Hepatitis B Foundation in 2010 developed into a working relationship that won justice for five additional medical and dental students who contacted us between 2011 and 2013.
At the urging of the foundation and hepatitis B specialists, the Centers for Disease Control and Prevention (CDC) revised and updated its 20-year old policy for infected healthcare workers; and the disability complaint I filed with the Department of Justice (DOJ) resulted in a Settlement Agreement for two students and a Technical Assistance Letter jointly issued by three federal agencies to inform healthcare schools of their responsibilities to accommodate individuals with hepatitis B and point out that failure to comply could also violate Title VI, which prohibits discrimination on the basis of race, ethnicity or national origin.
Hepatitis B civil rights advocacy is now focused on policies of all U.S. military services, including the Coast Guard, Public Health Service and the National Oceanic and Atmospheric Administration, which ban individuals with hepatitis B from joining.
Between 2013 and 2016, we advised nine active duty personnel and students who were not permitted to enlist for military service or scholarship programs or were discharged from active duty or a U.S. military academy due to hepatitis B. We continue to advocate for the Department of Defense to revise the policies that prohibit the people with chronic hepatitis B and establish reasonable, science-based accommodation policies for existing or future personnel who are diagnosed with chronic hepatitis B
Continuing hepatitis B education and civil rights challenges
Most immigrants and refugees do not understand the seriousness of the silent disease or the importance of hepatitis B screening. If diagnosed with hepatitis B, they often fear being treated as ‘pariahs’ in a society where they already feel like outsiders; or they worry that others in their family will be stigmatized or that hepatitis B will be used as an excuse to prevent immigrants from entering the U.S. Still others may be silenced by a code of silence within their professions.
Adding complexity to hepatitis B education and outreach are the diverse languages and cultures of the immigrant/refugee communities, along with the economic and social disparities experienced by so many families who start new lives in the U.S. living in relative isolation with limited English proficiency and few financial resources.
Lest we think hepatitis B discrimination is limited to Asian- and African-American and immigrant/refugee communities, new pockets of hepatitis B infection linked to the opioid epidemic have been reported in rural regions. Outbreaks of hepatitis B infection in majority white, non-immigrant, economically-depressed regions suggest that some of those infected may not have been immunized due to a lack of knowledge or healthcare access. These are social and economic disparities that mirror the disparities experienced by many immigrant/refugee families.
Like their healthier peers, teens and young adults with hepatitis B seek opportunities to fulfill their potential, earn a living wage and improve their lives. To this end, hepatitis B advocates are working to protect the rights of infected persons and ensure that our schools and institutions, and public and private employers administer reasonable, science-based chronic hepatitis B policies and accommodations.
Nadine Shiroma is a community civil and voting rights advocate and policy advisor to the Hepatitis B Foundation. She can be contacted at firstname.lastname@example.org.
Diagnosed in March, 2009, with stage 4 metastatic non-Hodgkin’s lymphoma, Nadine spent the remainder of the year undergoing chemotherapy and recurrent hospitalizations. “That I lived and recovered is due to doctors at the City of Hope Cancer Research Center, my family and especially my husband and daughter,” she recalled. “Assisting the college senior in 2010 helped me discover a new normalcy. On that day in 2011, when a new, progressive chronic hepatitis B accommodation policy was published by the healthcare school that previously excluded students with hepatitis B, I told myself, ‘This is why I lived.’”
In late July, during World Hepatitis Day 2016, the fourth annual Hep B United Summit convened in Washington D.C. and dozens of advocates met with federal officials and brainstormed strategies to increase screening, immunization and linking people to care to eliminate hepatitis B across the country.
Asian-American and Pacific Islanders (AAPI) and African immigrant
communities are among those hardest hit. Crafting a culturally- and liguistically-adept approach on small or non-existent budgets to educate and screen these diverse populations remains a challenge for Hep B United’s more than 30 community coalitions in 15 states and Washington D.C.
On the upside, the coalition’s organizations have educated 4 million Americans and screened about 40,000. However, large swaths of the country lack outreach efforts to prevent the spread of hepatitis B. For a map and list of Hep B United Summit member organizations, click here.
The coalition’s ongoing hepatitis B prevention efforts mirror HIV and hepatitis C campaigns that have sought to increase education, screening, and linkage to care. But in many respects, Hep B advocates face more challenges:
Because there is a safe and effective vaccine that prevents hepatitis B, many state and federal health officials assume the infection will go away on its own and government resources for screening and prevention have been minimal.
Many immigrant populations affected by hepatitis B have unique languages and cultures, which requires careful, individual approaches to each community.
Federal healthcare programs often under-funded or inhibit effective prevention work. For example, Medicare currently does not cover the cost of life-saving hepatitis B tests in seniors, many of whom are in high-risk groups because of their ethnicity or personal history. The federal government has proposed to cover screening, but only if it’s ordered in a primary care office. Some of the most effective screening in high-risk communities often occurs at community-based settings or emergency rooms, far from a primary care office. Summit participants are orchestrating letter-writing to endorse the federal government’s proposed decision to cover hepatitis B screening under Medicare and to convince Medicare officials to broaden coverage of hepatitis B screening.
Summit also participants met with federal officials from the U.S. Department of Health and Human Services, Centers for Disease Prevention and Control (CDC) and the Department of Justice to push for more effective policies and increased funding to fight the world’s most common serious liver infection. One afternoon was spent visiting Congressional representatives to boost lawmakers’ awareness of the terrible toll hepatitis B takes on their constituencies.
“If community organizations can learn from each other and develop effective ways to educate people about hepatitis B and to get them screened and referred to medical care in the early stages of their infection, we can succeed in preventing new cases, save health care dollars and, most importantly, save lives,” said Jeffrey Caballero, AAPCHO executive director and Hep B United co-chair.
The following four hepatitis B advocates were honored at the summit for their work to eradicate hepatitis B:
Alex Shirreffs, MPH, Viral Hepatitis Prevention Coordinator with the Philadelphia Department of Health. She was recognized for her collaboration with Hep B United Philadelphia to screen area AAPI communities. Her work ensures that hepatitis B remains a public health priority, and she serves as a critical liaison between Hep B United and other Adult Viral Hepatitis Prevention Coordinators nationwide.
Mohammed Abdul-Kadir, MPH, MSIS, coordinator of the Hepatitis B Coalition of Washington, (now part of International Community Health Services in Seattle), is recognized for his commitment to eradicating hepatitis B in Washington’s AAPI communities by bringing together stakeholders from across the state and providing free screening, education and linkage to care for thousands of individuals.
Nadine Shiroma, a national hepatitis B civil rights advocate from Seattle, has worked tirelessly with the Hepatitis B Foundation to eliminate hepatitis B-related discrimination in the United States. She is recognized for advocacy on behalf of hepatitis B-infected health care students, which resulted in hepatitis B being added as a protected condition under the Americans with Disabilities Act (ADA). The fight now has been taken to the U.S. Department of Defense, which currently bars infected applicants and discharges military personnel diagnosed with hepatitis B.
Moon Chen, Ph.D., director of the Asian American Network for Cancer Awareness, Research and Training in Sacramento, Calif., is recognized for making hepatitis B a priority for academic and public health research, and for continuing to research and identify effective hepatitis B prevention, screening and referral-to-care intervention models that can be replicated nationwide.
For more information about joining Hep B United, click here.
May is Hepatitis Awareness month. Why do we need an annual reminder about hepatitis B? Because 65 percent of the estimated 2.2 million people in the U.S. living with hepatitis B don’t know they’re infected.
Studies show when people know their hepatitis B status, they’re more likely to get monitored regularly, get treatment, and take steps to avoid passing on the disease to partners and their children.
So why are so many Americans unaware of their hepatitis B infection? Here are five roadblocks that stop us from getting tested for hepatitis B, and what how we can do to overcome them.
On Tuesday, March 8, more than 120 advocates from across the U.S. fanned out on Capitol Hill to talk to their representatives about the importance of funding the Viral Hepatitis Division of the U.S. Centers for Disease Control and Prevention (CDC). Dozens of people laid their hearts on the line and told their stories about how they, their families, and friends have been touched by hepatitis.
In meetings with Congressional staff, and in some cases their senators, they shared stories about family members who discovered they had hepatitis B only when they were diagnosed with late-stage, inoperable liver cancer. Others talked about how lucky they were to have been immunized at birth, considering their mothers were infected. Courageous advocates described losing loved ones to hepatitis B and C spread through the heroin epidemic, and recalled indifferent healthcare workers who saw only addicts instead of human beings who had lost their battle with both addiction and hepatitis.
Our goal was to get our representatives to allocate more funding for CDC’s hepatitis division, which is sorely needed. It’s CDC’s job to investigate disease outbreaks and educate the public and healthcare providers about infectious disease. For example, CDC publishes a variety of reports and promotional materials to educate people how to protect themselves against hepatitis B and C. The agency also funds a “hepatitis coordinator” in nearly every state whose job it is to help prevent hepatitis, investigate outbreaks, and collect data—a Herculean task for just one person. Continue reading "“Hepatitis on the Hill” Advocates Fight for Hepatitis Prevention, And So Can You"→
Are you planning to join us for the World Hepatitis Day Twitter Chat on Friday, July 27th? The CDC and HBF will be hosting a Twitter Chat at 2 pm EDT. Are you thinking, “What… me?? I don’t know how to use twitter!!” Well, get-on- board with twitter before July 27th and join us!
What is twitter? Twitter allows you to stay connected or exchange short messages called tweets with friends, family, co-workers, organizations and partners, and the world at large.You can tweet from your computer, your laptop, i-pad or smartphone. You can use it to update your status on the go, or in HBF’s case, use it to educate and raise hepatitis B awareness. We also use it to send out current or new information on hepatitis B and to make our resources available to others. If you are a hepatitis B advocate, twitter is a great outlet to get your message out there.
What is a tweet?A tweet is basically a short message or status that you post to twitter. You can compose a tweet by clicking on the blue compose button in the top right corner, or from the “Compose New Tweet” box (top left after you login) Tweets are kept at 140 characters or less. If you make your tweets about 10 characters shorter, you’ll leave room for others to easily retweet your messages. Don’t worry. Twitter does the counting for you.
What is a retweet?A retweet or RT is when you repost someone else’s tweet so it will be shared with your followers. It lets everyone know you like that message and lets you spread the word. Retweeting is a great way to get started if you’re a little nervous about composing your own tweets. To retweet, all you need to do is put your cursor over a tweet that you like, and you’ll see retweet highlighted. Click and you’ve just done your first retweet!
What’s a hashtag? A hashtag allows you to categorize messages in twitter. You precede a keyword with a hashtag, or the “#” symbol, to note a topic of interest. I typically use simple twitter hashtags such as #hepatitis B, or #HBV in my messages so that others interested in HBV topics will see my tweets. Rather than put them at the end of a tweet, I typically work them into my message. For example: “There are 400 million people chronically infected with #hepatitis B in the world.” Lots of viral hepatitis followers are using the #hepatitis hashtag, so they are sure to see my posted tweet. The hashtag will allow them to easily search twitter from the search box (top right) in twitter and retweet my message. It might also encourage them to follow me since hepatitis B is an interest that we share. When I see tweeps tweeting with the #hepatitis hashtag, I tend to follow them, and if they continue to post good content, I might even add them to one of my twitter lists.
What is a Tweep? A tweep is a twitter user.
Getting Started. All you need to get started is an email account, a picture or logo (though twitter will assign you their default image if you don’t upload one, so don’t let that stop you.), and a statement about you or your organization.
Go to www.twitter.com and sign up for a new account. It’s really pretty simple. If you have your email and image ready to upload, you can be in and out in a few minutes. Twitter will walk you through the whole thing – nothing tricky!
So what should you do to become familiar with twitter? Assuming you plan to follow what’s new in the world of hepatitis B, our twitter chat on the 27th and viral hepatitis events beyond World Hepatitis Day, then consider a few things:
Who do you want to follow? Consider following viral hepatitis organizations like the Hepatitis B Foundation (@HepBfoundation), CDCs Division of Viral Hepatitis (@cdchep), World Hepatitis Alliance (@Hep_Alliance) or other favorite viral hepatitis orgs you may know. You may also consider following medical doctors, journalists, or viral hepatitis advocates you find out there in the big-virtual world. Don’t forget about the community at large. You’ll find others interested in hepatitis B by using the #hepatitis, #HBV or #worldhepday hashtags in the search box. Part of the goal is to educate and raise HBV awareness. At HBF, The world is our target audience. We are happy to follow, or be followed by anyone that is interested in hepatitis B.
Who will follow you? In the beginning, you’re not going to have a lot of followers. Don’t worry about it! Building a following takes time. Slowly but surely as you start participating, you will gain new followers. Start by “retweeting” someone you are following, and most likely they will follow you back if you are helping them get their message out.
The World Hepatitis Day Twitter Chat sounds great! How do I join the conversation? It’s simple. The Twitter Chat starts at 2 pm EDT on Friday, July 27th. Login to your twitter account and be ready to contribute. We will be using the #WHDchat hashtag for this chat. All you need to do is search twitter for the #WHDchat and it will generate a list with all of the tweets from the conversation. If you see a tweet that you like, retweet it. If you’d like to contribute to the conversation with your own message, compose your tweet and be sure to add the #WHDchat at the end of your tweet or no one will see it.
That’s it! Join the conversation on July 27th at 2 pm EDT!