Hep B Blog

The Link Between Hepatitis B and Liver Cancer

October is Liver Cancer Awareness Month!  Despite the aggressive nature of this cancer – only one out of every five diagnosed patients survive beyond five years – liver cancer receives little attention from those outside of the health field. To help raise awareness and support those who have been affected, we are using our #justB campaign to share the stories of individuals who have been directly impacted by liver cancer throughout the month of October. The stories are featured throughout the month on the Hepatitis B Foundation, Liver Cancer Connect and Hep B United social media outlets. Check out Alice, Bunmi, Dai, Wendy and Kim’s stories here.

What is Liver Cancer?

Liver cancer occurs when normal liver cells begin to grow uncontrollably and form a mass called a tumor. Cancerous tumors are dangerous because they begin to damage healthy cells that make up the organ and impair the liver’s functionality. Of the nine different types of liver cancer, Hepatocellular carcinoma (HCC) is the most common and often results from chronic hepatitis B. In the United States, new cases of liver cancer and liver cancer deaths are steadily rising. In fact, a recent study has shown that there has been a 53% increase in liver cancer deaths since 2000.

 

 

Hepatitis B and Liver Cancer

Although liver cancer is the sixth most common cancer in the world, it is the second most common cause of cancer deaths. Many people do not realize that chronic hepatitis B is the primary global risk factor for developing liver cancer. Certain viruses, including hepatitis B, can cause hepatitis, which translates to “inflammation of liver.” The virus attacks the liver and weakens its ability to perform important tasks like filtering toxins from your blood and maintaining the level of sugar in your blood. Chronic (long-term) infection with hepatitis B or hepatitis C viruses can lead to liver cancer. Worldwide, hepatitis B is much more widespread than hepatitis C, making it a priority when it comes to the prevention of liver cancer. Approximately 292 million people around the world are living with hepatitis B.

Liver Cancer by the Numbers:

  • 10% of the world’s liver transplants are due to hepatitis B
  • 60% of liver cancer diagnoses are due to cases of chronic hepatitis B
  • 43% of liver cancer deaths are due to chronic hepatitis B
  • 788,000 people die from liver cancer annually
  • 15% – 25% of people who were infected with hepatitis B at birth will die prematurely from cirrhosis, liver failure, or hepatocellular carcinoma, if their hepatitis B is not diagnosed and appropriately managed
  • 80% of liver cancer patients are in sub-Saharan Africa & in Eastern Asia

Preventing Liver Cancer

Educating oneself is the first step in preventing liver cancer! If you have hepatitis B, be aware of the risk factors and behaviors that can increase your likelihood of liver damage and liver cancer, such as consuming alcohol and high amounts of junk food. Groups such as the CDC Division of Viral Hepatitis, the American Cancer Foundation, the American Association for the Study of Liver Diseases, and the Cancer Support Community all provide free fact sheets, call lines, and literature by experts that can help you understand what may be occurring in your body and to make educated choices. You can also check out our Liver Cancer Connect resource for more information or for liver cancer support.

Did you know that the hepatitis B vaccine is the first anti-cancer vaccine ever created? That’s because it helps to prevent liver cancer! Remember that the vaccine is typically given in a set of 3 doses. It is extremely important to take all three in order to receive lifelong protection from hepatitis B-related liver cancer: with the first dose you 50% protected, with the second dose you are 80% protected, and with the third dose, you are 100% immune to hepatitis B. In the U.S., there is also a 2-dose vaccine available, so you can be fully protected with fewer doses! If you are worried about the cost of the birth dose for your infant or the vaccine for yourself, many countries have free health clinics that can administer it or link you to an organization that can help.

Another key to preventing liver cancer is to get screened for hepatitis B. If you have not received your vaccine and you think you fall into a high risk group, talk to your doctor about getting tested. Because hepatitis B often has no symptoms, it is important to get screened even if you do not feel ill. An early diagnosis means that you can begin treatment, if needed, sooner and prevent irreversible damage from occurring. Like the vaccines, your local doctor or health clinic may be able to test you for free or reduced cost – just ask! Some local community groups also provide free hepatitis B testing, so be sure to look out for flyers and announcements about them in your community as well!

Interested in learning more about the connection between hepatitis B and liver cancer? Join us on Tuesday, October 23rd from 2:00 pm – 3:00 pm ET for Hepatitis B is the Major Etiology of Liver Cancer: Is a Cure Possible? Is it Necessary? – a webinar by HBF’s co-founder Dr. Tim Block on hepatitis B, liver cancer, and where to go from the current research standpoint. Register for the webinar here.

Join us for a Twitter Chat for Liver Cancer Awareness Month!

October is Liver Cancer Awareness Month. Often we neglect to think about the link between hepatitis and liver cancer. Tuesday, Oct. 16, representatives from Hepatitis B Foundation, CDC’s Division of Viral Hepatitis, and NASTAD will co-host a twitter chat at 3 p.m. EST to discuss this important link.

Featured guests include Prevent Cancer Foundation, Hep B United Philadelphia (HBUP) and Iowa Harm Reduction Coalition. Prevent Cancer Foundation is a national nonprofit dedicated to cancer prevention and early detection. HBUP is a Hep B United partner committed to testing and vaccination to fight hepatitis B and liver cancer in Philadelphia. Iowa Harm Reduction Coalition is a non-profit organization providing non-judgmental and compassionate services that empower people to care for themselves and one another.

Below are the questions to be discussed during the chat. How can you contribute?  Join the conversation that day and throughout the month with the hashtag #Liverchat. Share any resources or strategies you have that raise awareness about the link between liver cancer and hepatitis.

  • Q1:What are things everyone should know about liver cancer, and also the link between hepatitis and liver cancer?
  • Q2: What can people do to prevent hepatitis, or for those living with hepatitis, what can be done to protect the liver and prevent liver cancer?
  • Q3: What are the barriers that keep people from getting screened for hepatitis and liver cancer and how can they be addressed?
  • Q4: Why are some populations more vulnerable to hepatitis and liver cancer, and how do we address the disparities?
  • Q5: What resources are available to educate others about hepatitis B & C and liver cancer? What resources are needed?
  • Q6: Who are your key partners in addressing liver cancer? Who would you like to engage more in your work? (Tag them here!)
  • Q7: What is one lesson learned or piece of advice for others who want to expand their work on the link between viral hepatitis and liver cancer?

Co-hosts and featured partners of the chat include:

  • Hepatitis B Foundation – @hepbfoundation
  • NASTAD – @NASTAD
  • CDC Division of Viral Hepatitis – @cdchep
  • Prevent Cancer Foundation – @preventcancer
  • Hep B United Philadelphia – @hepbunitedphila
  • Iowa Harm Reduction Coalition – @IAHarmReduction
  • CDCNPIN will be moderating the chat – @cdcnpin

Confirmed participants and their handles include:

  • Hep B United  – @hepbunited
  • Coalition Against Hepatitis For People of African Origin – @CHIPO_HBV
  • Liver Cancer Connect – @livercancerconn
  • CDC’s Division of Cancer Prevention and Control – @CDC_Cancer
  • Hep Free Hawaii – @HepFreeHawaii
  • HBI-DC – @HBIDC
  • HepFreeNYC – @hepfreenyc
  • NAIRHHA Day – @NAIRHHADAY
  • Minnesota Department of Health – @mnhealth
  • Philly Hep C Coalition – @hep_CAP

Just getting started with Twitter? Do you wish to join the conversation but you don’t know how?  Type #Liverchat in 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 during 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 #Liverchat hashtag, which is not case sensitive, in all of your tweets.

If you plan to participate, please contact us at info@hepb.org and we’ll add you to the list of confirmed participants. Let us know if you have any other questions about joining the chat. We’re here to help!

 

 

 

Where is Hepatitis D? High Prevalence of Hepatitis B/D Coinfection in Central Africa

ResearchWhile hepatitis B is known to be highly endemic to sub-Saharan Africa and is estimated to affect 5-20% of the general population, the burden of hepatitis D, a dangerous coinfection of hepatitis B, has largely been left undescribed. Since the virus’s discovery 40 years ago, Africa has faced structural barriers that have contributed to the ongoing prevalence of the virus in this region. Widespread instability, under-resourced health systems, and poor surveillance have contributed to inadequate research and a lack of understanding about the health burden of hepatitis D on hepatitis B patients, particularly in Central Africa.

New data, however, reveals pockets of hepatitis B/D coinfection in this region, particularly in countries such as Cameroon, Central African Republic and Gabon. In a recently published study of nearly 2,000 hepatitis B infected blood samples from 2010-2016 in Cameroon, 46.7% tested positive for hepatitis D antibodies, a marker of past or current hepatitis D coinfection. Another study of 233 chronic hepatitis B carriers from 2008-2009 found a 17.6% positivity for hepatitis D antibodies. Other small studies from the Central African Republic have revealed 68.2% prevalence in hepatitis B patients, 50% coinfection in liver cancer patients and an 18.8% coinfection in hepatitis B infected pregnant women. Not only are new studies revealing evidence that there are groups at higher risk for hepatitis D, but a 2008 study on 124 community members in Gabon found 66% of them had markers for hepatitis D, proving this virus can also be circulating in the general population. Globally, hepatitis D is thought to affect about 5-10% of hepatitis B patients, making Central Africa an area of extremely high prevalence.

A diagnosis with hepatitis B and D can increase the risk for cirrhosis and liver cancer by nearly three times, and with only one available treatment, the future for coinfected patients if often uncertain. Although hepatitis B and D can be safely prevented by completing the hepatitis B vaccine series, which is available in many countries throughout Africa, the birth dose of the hepatitis B vaccine is often not given within the recommended 24 hours of birth. Lack of awareness, availability, and high cost mean many infants will not begin the vaccine series until 6 weeks of age, creating a window for exposure to hepatitis B. Greater than 95% of babies infected with hepatitis B will go on to develop chronic hepatitis B infections, leaving them susceptible to a future hepatitis D infection. Spread the same way as hepatitis B, through direct contact with infected blood and sexual fluids, hepatitis D can be contracted through unsterile medical and dental equipment and procedures, blood transfusions, shared razors and unprotected sex. Although the severity of disease varies greatly by hepatitis D genotype, coinfection always requires expert management by a knowledgeable liver specialist, which are often difficult to find.

As an increasing number of studies continue to describe the widespread endemicity of hepatitis B/D coinfection and its public health burden, researchers and the Hepatitis Delta International Network are calling on the World Health Organization (WHO) to declare hepatitis D a “threat” in this region in order to promote increased priority and awareness. Addressing hepatitis B/D coinfection prevention and management will be complex and require a multi-pronged approach through methods such as government prioritization, increased funding for health systems, hepatitis B vaccination awareness programs, birth dose prioritization, better sterilization techniques in hospitals, clinics, and barbers, and public awareness of the disease.

For more information about hepatitis B/D coinfection and the Hepatitis Delta Connect program, please visit www.hepdconnect.org or email us at connect@hepdconnect.org. Hepatitis Delta Connect seeks to provide information, resources and support for hepatitis B/D patients and their families through its website, social media, fact sheets, webinars and hepatitis D liver specialist directory.

Creating a #HepBFree Future in Arizona

Layal Rabat, Empowerment and Advocacy Manager at Asian Pacific Community in Action (APCA), provides an inside look into APCA’s hepatitis B efforts in Arizona.

Asian Pacific Community in Action (APCA) was formed in 2002 to meet the health-related needs of Asian Americans and Native Hawaiian and Pacific Islanders (AA & NHPI) residing in Arizona. Our vision is to inspire diverse communities to seek healthier futures. Our mission is to provide services, advocacy and education for diverse communities to help create a healthier and more empowered population seeking good health. In addition to hepatitis B testing, education, and referrals, APCA’s programs include Oral Health Advocacy, Advocacy Training, Policy Work, , Messaging/Storytelling , the Affordable Care Act, Medicaid, SNAP enrollment assistance, Civic Engagement, and Pop-up Health Fairs & Clinics.

Engagement Through Storytelling 

Over the years, we’ve prided ourselves on our creativity and thinking of ways to connect with communities through arts and innovative practices. This has led to the creation of  #HepBGirl and the HepBoo basketball fundraiser to support our hepatitis B efforts.

APCA’s most recent work has been centered around a mini-grant project generously funded by Hep B United – a national coalition to address and eliminate hepatitis B. The goals of the mini-grant were to help establish or contribute to hepatitis B prevention, education, linkage to care, and surveillance on a local level. APCA focused on education and empowerment by implementing the Hepatitis B Foundation’s (HBF)  #justB storytelling campaign into the community.

The project timeline was based on the recruitment of storytellers, conducting storytelling events, and conducting the analysis. The biggest lesson learned is that recruitment can take the most time out of all of the goals. We were aware of the stigma around talking about the infection and wanted to conduct our work in an ethical, sensitive way. To do this, we worked with a provider who helped by offering the opportunity for their patients to share their experiences. The patients could then choose whether to contact us or not. We also assured those that chose to speak that we would not publish any of the stories without their explicit approval and consent. To respect participant time and efforts and reduce the labor required of them for the event, APCA took great care to do as many of the preparations as possible, simplify the questions being asked, and conduct the events in a manner that respected their emotional labor and centered their explicit consent.

Hepatitis B In Arizona

Centered upon vulnerable populations such as older Asian American and Pacific Islander (AAPI) adults who were born before certain vaccine policies, APCA’s hepatitis B work includes addressing policy issues, access to care, and direct services. Direct services around hepatitis B included screenings, vaccinations, and referrals to care and treatment. In the past, APCA tested 2,869 people and found that 6.7% had active hepatitis B infections. An additional 31.2% were not vaccinated.                                                                                     

Arizona’s hepatitis B story mirrors that of the United States overall. From 2006 – 2015, an average of 979 chronic hepatitis B and 128 acute hepatitis B cases were reported each year in Arizona, though there has been a decrease in the number of acute hepatitis B cases identified in recent years. 
The rate of new reports of acute hepatitis B was highest among persons aged 40-44 years. Chronic hepatitis B rates were highest among those 30-34 years. 
The average annual rate of hepatitis B infection among Asians/ Pacific Islanders was much higher than other racial/ethnic groups (1,2). 

Looking Towards the Future

The mini-grant opportunity will help to launch #HepBFreeArizona – a campaign aimed at eradicating hepatitis B in the state. We hope to continue working with those that shared their stories to help build our future hepatitis B program and get it to a level where we can provide a space for patients living with hepatitis B to lead the way. The same barriers that prevent community members from accessing care also hinder their efforts to get involved in advocating for the policy changes that will alleviate those barriers. We are always learning how to balance community member autonomy and valuing their labor with respect to the time and effort they contribute and not taking more than we are giving.

Thank you to Layal Rabat for serving as our guest blogger this week! If you would like more information from Layal or the Asian Pacific Community in Action, please visit their website or contact them here.

 

Layal Rabat is a third culture kid who has spent years practicing the fine art of parachuting into projects as the need for her skills arises. She takes an intersectional approach to her work and does not shy away from any cause where injustice is present and her contribution is welcomed and necessary. Her experience lies in project management, traditional and digital communications using all mediums from her own voice to videos to writing to tweeting, assembling audience-specific information for delivery in an infinite amount of ways. An infinitely curious researcher and an obsessive collector and assembler of information, she is often seen playing a supportive role in the background and amplifying the voices of those directly affected by injustice in her community. Fluent in English & Arabic, intermediate in Spanish & knows a tiny bit of Armenian. Current issues are immigrant rights and public health. With a BS in Psychology & an MA in Social Justice & Human Rights, she is currently working as the Empowerment & Advocacy Manager at the Asian Pacific Community in Action, and volunteering her time as IT/Web & Social Media Coordinator at Phoenix Allies for Community Health. She also volunteers with the Restoration Project, Phoenix, and serves as a board member with Sonoran Prevention Works. In her spare time, she enjoys listening to music (& karaoke), reading, writing, photography, and traveling.

 

References

  1. 2016, Viral Hepatitis Epidemiologic Profile for Arizona
  2. 2016, Arizona Department of Health Services

 

National African Immigrant and Refugee HIV & Hepatitis Awareness Day 2018

The Hepatitis B Foundation (HBF) is joining the Africans for Improved Access (AFIA) program at the Multicultural Aids Coalition (MAC), the Coalition Against Hepatitis for People of African Origin (CHIPO), the New England AIDS Education and Training Center (NEAETC), and the Harvard University Center for AIDS Research (CFAR) in continuing the national fight for federal recognition of National African Immigrant and Refugee HIV and Hepatitis Awareness Day (NAIRAHHA).

Founded during one of the African National HIV Alliance’s (ANHA) strategic planning summits, NAIRAHHA Day has been observed annually on September 9th by healthcare professionals, awareness campaigns, and other organizations since 2014. This year,  NAIRHHA Day commemoration began on September 1st. Quotes collected from #justB storytellers, healthcare providers, and health educators are currently being circulated across social media accounts to start a virtual conversation. The hashtags #StigmaCantWin and #NAIRHHADay2018 are being used to organize the discussion and raise awareness on Twitter. The quotes are centered upon addressing stigma and myths surrounding HIV and hepatitis in African immigrant communities. Some quotes remind viewers that despite how it may feel, many reliable HIV and hepatitis B resources are present around the country. Other quotes – like this one from #justB storyteller Bright – offer words of encouragement and support to those who may feel alone.

A comprehensive webinar, titled Stigma Can’t Win: HIV and Hep B Among African Immigrants, will take place on Wednesday, Sept. 20 from 3 p.m. – 4:30 p.m.  and will complete the commemoration of NAIRHHA Day 2018. You can register for the webinar here. In addition to stigma’s impact on access to care and screening for HIV and hepatitis, viewers will learn about the root causes of these particular stigmas and how prevention-related stigma differs from the stigma of living with a certain disease. These topics are essential to the process of global eliminating viral hepatitis by 2030 – a goal set by the World Health Organization (WHO). Healthcare providers and community members will share their experiences with the audience during this interactive webinar.

In America, it is estimated that 5% – 15% of the African immigrant population is living with chronic hepatitis B. Less than 20% are aware of their infection. Unfortunately, these numbers are thought to be a low estimate due to lack of awareness, surveillance, and knowledge about modes of transmission. NAIRHHA Day was founded to help address the numerous barriers to prevention and treatment that African immigrants face. It was also founded to acknowledge the cultural and ethnic differences that influence how African-born individuals interact with their medical community and the concept of illness. The specific goals of the day of recognition include:  

  • Raising awareness about HIV/AIDS and viral hepatitis to eliminate stigma;
  • Learning about ways to protect against HIV, viral hepatitis and other related diseases;
  • Taking control by encouraging screenings and treatment, including viral hepatitis vaccination;
  • Advocating for policies and practices that promote healthy African immigrant communities, families, and individuals.

Last year, the Hepatitis B Foundation launched a project in partnership with CHIPO and the Centers for Disease Control and Prevention (CDC) to raise hepatitis B awareness among African immigrant communities. The project seeks to improve hepatitis B awareness, linkage to care, screening rates, and vaccination rates. The first phase of the project, which was completed in 2017, assessed the needs of African immigrant communities – including cultural beliefs, religious beliefs and common barriers to accessing healthcare. The second phase is currently underway and focuses on the development of educational materials to be disseminated amongst community leaders and healthcare professionals to further their understanding of both hepatitis B and the needs of the specific communities they are working with. Materials are anticipated to be released in early 2019.

Ending stigma and bringing attention to these issues doesn’t only start with coalitions and organizations; it also starts with YOU! Everyday actions can help to increase the visibility of HIV and hepatitis B, and encourage others to speak up. Below are some tips for individuals on NAIRHHA Day – or any day!

How to help:

    • Start a conversation in real life: Take the information that you see and talk about it with your friends, families, and co-workers!
    • Know your facts: Don’t have a lot of time to read? Fact sheets like this  one for NAIRHHA Day provide brief, but informational summaries of why a cause is important! HIV and hepatitis infographics are also available on the CDC website and the Know Hepatitis B campaign even has short videos and free posters so you can pass the knowledge along!
    • Share what you see: Social media may seem trivial at times, but it can help spread the message. Retweet, like, and repost the quotes you see or any information that can help combat stigma!
    • Help get NAIRHHA Day federally recognized: Contact your local health departments, local and national HIV and hepatitis organizations, and the HIV.gov Team at @HIVGov and express the need for NAIRHHA Day!

 

 

Be Your Own Advocate in the Medical Room

The hepatitis B virus (HBV) can be transmitted two ways: 1) through direct contact with blood and 2) infected body fluids. Some risks for direct blood contact are obvious, such as touching an open wound to another open wound or cleaning up someone’s blood without any protective gear. However, other methods of blood transmission are harder to catch. Common activities like sharing razors, earrings, or toothbrushes are simple, innocent actions, yet they all have the potential for blood exchange.

Medical and dental procedures are aspects of our lives that we might not think twice about. While beneficial to our health, they also carry the risk of exposure to another person’s blood. Surgeries, shots, and dental activities all use sharp objects that pierce the skin and draw blood.  If the tools are not properly sterilized, or cleaned, before they are used on a new patient, the blood that was on the equipment can be transferred to the next patient.

Image courtesy of Cook Services

How do I know if medical tools are sterile? Ask! It is your right to know if the equipment that will touch your body has been thoroughly cleaned. In a dentist office, the assistant might unwrap a package of tools in front of you; this typically means that the tools are either new or have been properly cleansed. In a medical setting, needles and surgical equipment might come in packaging as well. If you still are not certain, feel free to ask what the standard cleaning procedures are for the tools being used. The staff will be happy that you are taking your health into your hands!

Why is it important to have sterile tools?   Hepatitis B earned the nickname “silent infection” because there are often no symptoms. Those who have been infected may not take the necessary precautions simply because they do not know that they should. They may not even know they are infected! In many cases, medical and dental professionals are unaware when a patient has hepatitis B. Therefore, it is important to make sure that all equipment that is being reused has been sterilized. Although there are no global sterilization standards, many countries and medical facilities around the world – like hospitals, dental offices, and doctor offices – have disinfection guidelines and practices for their equipment.

Tips to Protect Yourself:

  1. Be your own advocate: Ask the dental hygienist, nurse, doctor, acupuncturist or person in charge of your procedure if the tools have been sterilized.
  2. Know where you go: Try to visit medical or dental facilities that you trust and that provide clean, safe environments for any procedures involving blood or body fluids.
  3. Get vaccinated: Hepatitis B is a vaccine preventable disease. After receiving all three doses, most people are protected for life! Check your immunization records to make sure that you have been vaccinated or ask your doctor or local clinic about the vaccine.
  4. Share with caution: Sharing or eating food prepared by someone with hepatitis B is safe, but any activities that may involve direct contact with blood carry a risk. A good guideline is to keep all personal hygiene items personal.

If you think you have been exposed to hepatitis B, it is important to get tested. Visit your doctor or local health clinic to get screened.

If you have been diagnosed with chronic hepatitis B, our Physicians Directory*  can help you locate a liver specialist near you. The World Hepatitis Alliance can also help you find health care services and hepatitis B education in your country.

*Disclaimer

The Hepatitis B Foundation Liver Specialist Directory is intended for use by the public to assist in locating a liver specialist within a specific state or country. All data is self-reported and is not intended for use by organizations requiring credentialing verification. The HBF does not warrant the accuracy, completeness, timeliness, or appropriateness for a particular purpose of the information contained in the Liver Specialist Directory. The HBF does not endorse the individuals listed in the service, nor does HBF verify medical qualifications, licenses, practice areas or suitability of those listed. In no event shall the HBF be liable to you or anyone else for any decision made or action taken by you based upon the information provided in the service. Note: This is not a physician referral service. The HBF cannot provide referrals to specific physicians nor advice on individual medical problems.

Journey to the Cure: What Does Liver Cancer Research Look Like? ft. Aejaz Sayeed, PhD

Welcome to “Journey to the Cure.” This is a web series that chronicles the progress at the Hepatitis B Foundation and Baruch S. Blumberg Institute towards finding the cure for hepatitis B.

In the fourth episode (part 2), Kristine Alarcon, MPH sits down with Aejaz Sayeed, PhD, Assistant Professor at the Baruch S. Blumberg Institute, to talk about his research in liver cancer. For any questions about hepatitis B, please email info@hepb.org.

Disclaimer: The information provided in this audio post is not intended to serve as medical advice of endorsement of any product. The Hepatitis B Foundation strongly recommends each person discuss this information and their questions with a qualified health care provider.

Edited by:
Kristine Alarcon, MPH

Special thanks:
Samantha Young

Music:
Modern – iMovie Library Collection

Script:

Welcome to “Journey to the Cure!” Every month, we’ll sit down with scientists from the Hepatitis B Foundationand the Baruch S. Blumberg Instituteto talk to you about hepatitis B and efforts to find a cure for hepatitis B. There’s still a long way to go, but we’re here to walk you through our journey.

Kristine Alarcon, MPH:
Can you tell me about your research?

Aejaz Sayeed, PhD:
That’s an interesting question. I’vespent a lot of time pursuing breast cancer and prostate cancer. I just started working on the liver cancer. There are millions of people who are pursuing cancer research, but the challenge is that we have done a lot of progress in some cancers, but some cancers, still, we do not have a handle on. For example, we have done a lot of progress in breast and prostate cancer. We have not done much in pancreatic and liver cancer. And, the five-year survival rates of breast and prostate and other cancers have drastically increased, but we have not done much of a progress in pancreatic or a specific form of brain cancer or pancreatic cancer or liver cancer. The problem, again, is that we’re not able to detect the disease at an early stage, and if we had a good set of biomarkers available, there’s a good opportunity, there’s a good chance that we should be able to control these diseases as well.

Kristine Alarcon, MPH:
What attracted you to studying liver cancer?

Aejaz Sayeed, PhD:
I’ve been working on breast cancer and prostate cancer, so in liver cancer, I want to use the tools and techniques, which I used in breast and prostate cancer. That’s why there’s that desire to use the similar strategies, which I used in breast and prostate cancer to discover and characterize markers. That’s why I’m still setting up collaborations with transplant surgeons because liver cancer is treated generally by either resecting the tumor or transplanting the liver. The liver is such an important organ that you cannot really take the liver away. You need the liver. Transplanting the liver is another strategy of treating these patients, so, yes, it is basically that desire that we have more biomarkers, and I can use the knowledge that I gained in breast and prostate to recapitulate the same kind of events, so that we can make a dent.

Kristine Alarcon, MPH:
Yeah; that’s so cool.

Aejaz Sayeed, PhD:
Thank you.

Kristine Alarcon, MPH:
Well, thank you for joining us on this episode of “Journey to the Cure.” Please join us next time for our next episode. Thank you for joining us!

Aejaz Sayeed, PhD:
Thank you!

Karen and Dave’s Story

One Couple’s Journey through Hepatitis B, Hepatitis D and Liver Cancer

“Dave knew he had hepatitis B for decades, but honestly, no one ever seemed concerned. His liver
enzymes were slightly elevated, so the doctor told him to just watch what he ate and drank. He didn’t
even insist on bi-yearly blood tests!

In 2016, Dave was scheduled for a routine colonoscopy. Because he’d been looking pale and sickly
around that time, I suggested they do a blood test first at his family doctor. His numbers were off the
chart. They sent us back for the colonoscopy and added an endoscopy too. They found four varices
(enlarged veins in the esophagus that can indicate serious liver disease). How did this happen?

This was when I started to get angry. The gastroenterologist called us in to discuss the results. He asked
if Dave knew he had hepatitis B. Dave said yes, knowing his drug use in his teens and early twenties was
likely the source. Dave never felt shame about it at all, and just accepted it as a path he took, and
thankfully came out of. After that conversation, the doctor slammed his chart shut and pushed it across
the desk. He said that Dave’s liver was so badly damaged that there was nothing he could do and to
‘come back in a year’. When we asked about his options for treatment for the varices and his hepatitis B,
he actually told me that no one would treat the varices unless they were bleeding! He also told us that
hepatitis B antivirals would “make things worse”. That didn’t make sense. We asked about a transplant.
He said there was ‘no way’ anyone would give him a new liver. He didn’t even let us know that there
were actual liver clinics for this very purpose. He sent Dave away to die, really.

Many months later, with much perseverance, we made it to Stanford, where he was immediately put on
entecavir to treat his hepatitis B and to hopefully relieve some of his liver damage. That doctor alerted
us that he should also be tested for hepatitis D, a coinfection of hepatitis B. “It won’t be good if you have
it.” He did.

Due to changes in our health insurance, we were sent to continue at the University of California San
Francisco Liver Center…they were our saving grace. They treated the varices right away and put him on
other medications to help his failing systems. His hepatitis B viral load was now undetectable, with
hepatitis D being the biggest concern. Dave tried interferon to treat the hepatitis D, but with no luck. His
only chance was a transplant, but even though he was doing poorly, his test results didn’t qualify him to
get on the transplant list right away. He had lots of ER visits – 210 office visits in 2017 alone. It was a
whirlwind. Dave hadn’t even driven in 2 ½ years. It was an enormous stress on me, too.

Dave developed liver cancer but wasn’t in good enough shape to go through treatment. As he got sicker,
he eventually qualified for two different                  
liver transplant waiting lists. Finally, on
Thanksgiving night 2017, we got the call
that a healthy liver was available, and we
took it.
Caregiving is a very tough road. Especially
when your person also has encephalopathy,
caused by years of liver damage – and Dave
had it really bad. The encephalopathy
caused mood swings, short-term memory
loss, hand tremors, low appetite. He could
be down-right nasty. At that time, we were
doing the 4 ½ hour drive to San Francisco
once or twice a week. It was stressful for
both of us – and he was really unaware of
the stress that was put on me. Between
driving, taking out the garbage, bills, our
construction business…you name it, I did it
all.

The first 3-4 months out of the transplant, people were telling him all that had gone on. Much to my
frustration, he didn’t believe any of it! Now, over 6 months post-transplant, little things are coming back
to him. I showed him about 2 dozen pictures of him during his journey, and he was shocked! He said he
thought he was fooling everyone into thinking he was well.

The hardest part of this journey was seeing Dave so sick at times. I spent a lot of time in my closet
crying. It was hard on our adult girls too, to see their dad so weak and disoriented. I had a lot of support
through our girls though, and my family, which made a world of a difference. My sister is also a retired
nurse, and she accompanied us to most of our visits. She was a helpful adviser, since his medications
always needed tweaking, and we were often on long calls with our care team, health insurance
company, and pharmacies.

The good we took away is his health! He still doesn’t feel it’s real. We went through so much, and are so
grateful to be on the other side.

Things I’ve learned:
• Get on a Facebook forum for liver transplant patients…they are a great resource and a wealth of
information from other patients.
• Take a third person with you to doctor visits and procedures. At times, I was so consumed with
my concern for Dave, it was easy for me to forget some of the things we discussed. My sister
would take notes, and we would review them after.
• Always get a second opinion if you don’t have a good feeling about your doctor. You will all
become a team, and it’s important to have a team you can trust.
• Get on the transplant list at multiple hospitals, their criteria for transplant varies!
• Have willing family members and friends get tested to see if they are donor matches. Usually the
recipient’s insurance will pay for the testing and survey if they are a match. My sister-in-law and
I were both tested but were not a match.
• Ask about organ swap programs. Apparently, my kidneys were in perfect health. My
hepatologist had me apply to the kidney donor program, in hopes that I may be able to donate
my kidney in exchange for a piece of someone’s liver for Dave.
• Dave was put on depression and anxiety medication early in the process. He was initially very
resistant, mostly because of the stigma. His doctors finally convinced him it would be very
helpful for his general mood…it was!
• I had to make several phone calls to his team without his knowing. Encephalopathy really makes
you confused, and in Dave’s case, grumpy. I asked the doctor to push for the depression and
anxiety medications, which she did. Also, he wouldn’t exercise or take short walks before
surgery, which she had asked him to, to better prepare for surgery. I made the phone call, and
at the next visit, she set him up with a Fitbit! It helped that the ‘suggestions’ came from his
doctor and not me!
• After the transplant, I was so surprised he wasn’t more ‘thankful’ …that he wasn’t in awe of
what we had all gone through for HIM! I got angry with him. I made a private call to our new
post-transplant team. She said depression right after is very common. The patient feels
overwhelmed, and sometimes not very thankful. It’s kind of a way to deny they were in trouble,
to deny that they needed help. That fits my man to a tee!
• I would strongly suggest lots of patience after the transplant. I wish our team would have told
me the possible mental-state Dave might be in. Don’t force them to be thankful. Don’t play the
‘remember when’ game, “remember when I drove you to the ER in the middle of the night?
Remember when they told us you had cancer? Remember when I tried to be your donor?”
Because a lot of it he doesn’t remember.
• Take pictures along the way, but don’t show them until at least 6 months out. I showed Dave
pictures right away, and they didn’t resonate. I just showed him them the other night…and he
was floored! He really ‘got it’. He’s been looking at things differently lately: he’s calmer and
more loving.
• I wish I had kept a journal. The ups and downs of this journey were sometimes excruciating, and
Dave wasn’t ‘present’ to understand it. Hire cleaning help if needed. Get family and friends to
take the patient to lesser important appointments. Don’t let household things pile up on you. Fix
the gutter. Repair the screen. Hire a gardener for a few hours. Ask family to set things up for
you. It’s amazing how in two years without Dave to physically help around the house, things
started to go south pretty quickly! Luckily, I dug in and kept up.

Quite the journey for sure. I feel blessed to be on this side of health!”

– Karen

Vlog: Advocacy Day on Capitol Hill

Join Michaela Jackson for A Day in the Life of a Public Health Coordinator as she takes you behind the scenes of Advocacy Day – a day of speaking to Congress members and their staffers about hepatitis B.

In this episode, participants visit Capitol Hill to ask Congress to support funding for Hepatitis B research and to raise awareness on the topic. Advocacy Day takes place the day before the Hep B United Summit.

Vlog: Why is the Hep B United Summit Important?

Join Michaela Jackson for A Day in the Life of a Public Health Coordinator to learn about why the annual Hep B United Summit is important!

In this episode, some of the Hep B United coalition partners explain why some of the leaders in the hepatitis B world gather in Washington D.C. each year. The Summit took place from July 24th – July 26th, 2018.