If you’ve ever wanted to help guide the future of hepatitis B treatments, now is your chance! The Hepatitis B Foundation has created a short survey that is designed to capture a comprehensive view of the patient experience. The survey, which takes approximately 20-25 minutes to complete, will be made available for use by the US Food and Drug Administration (FDA) and drug development researchers to help clinical trial development for future hepatitis B therapies. All survey responses are anonymous.
All individuals living with chronic hepatitis B are welcome to take this survey! After answering a few standard questions, participants will be asked whether or not they are currently on treatment for hepatitis B. If they are on treatment, the survey will prompt the participant to answer a few questions about their experience with the medication, such as how it makes you feel to take it,
and what challenges you may face while taking your medication. All participants, regardless of their current treatment status, will have an opportunity to provide feedback on what they hope future medications will look like!
The patient perspective is essential to creating a treatment that is not only effective but something that those living with hepatitis B would be willing to take. Oftentimes, researchers do not have the opportunity to gather insight into what patients are looking for or how a therapy would impact their lives. This can result in missed dosages of a medication, or avoiding a therapy altogether, rendering the treatment ineffective. This survey is also unique because it seeks to capture the diverse experiences of global patients living with hepatitis B. As we want to ensure that new treatments are as universal as possible, gathering the thoughts of both international and national individuals will ensure that different voices and opinions are captured!
The survey is the first part of a multistep process to collect information on the patient experience. In the upcoming months, we will carry out focus groups and interviews to have a better understanding of what it is like to live with hepatitis B, its impact on a person’s daily life, and more. The information collected will help to direct our patient-focused drug development meeting – a chance for stakeholders and those living with hepatitis B to meet and discuss the patient perspective – in June 2020.
The work being done will result in a broader understanding of how individuals are affected by the disease and more informed decisions regarding future hepatitis B therapies. Help guide the future of hepatitis B clinical trials and drug development by taking the survey today!
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.
The Hepatitis B Foundation and the Hep B United coalition are excited to partner with the All of Us ResearchProgram, a program funded by the National Institutes of Health (NIH) to advance precision medicine – health care that is tailored to each person. All of Us will enroll and engage 1 million or more people across the country, from all walks of life, to contribute to research that could improve health for generations to come.
We are partnering with All of Us to increase representation of Asian American and Pacific Islander communities in biomedical research. Diversity and inclusion in health research is critical to understanding how certain diseases or treatments affect individuals differently and helping transform health care to be more customized and effective for each person.
In the U.S., over half of the 2.2 million people living with chronic hepatitis B are Asian Americans and Pacific Islanders. Join All of Us to help researchers better understand the causes and risk factors for chronic conditions like hepatitis B and make health equity a reality.
This is a guest blog post by Danjuma Adda, MPH, Executive Director of Chargo Care Trust, a non-profit dedicated to helping hepatitis patients in Nigeria.
In 2016, the World Health Organization (WHO) set targets for the elimination of viral hepatitis as a public health threat by 2030 and provided a global health sector strategy (GHHS) on viral hepatitis for 2016–2021 that has since been adopted and endorsed by 194 countries. Nigeria joined the league of other nations to sign up to the GHSS and was among the few countries in Africa to develop firm goals towards the elimination of viral hepatitis. The goals were mapped out in a comprehensive framework that includes the National Viral Hepatitis Strategic Plan 2016-2020, National Policy for the Control of Viral Hepatitis, and National Guidelines for the Care and Treatment of Viral Hepatitis. An estimated 26 million Nigerians are living with viral hepatitis. A national hepatitis control program was created and a Technical Working Group for the Control of Viral Hepatitis was set up to help address the issues.
Despite these achievements, there has been very little financial assistance or investments by the national government towards the elimination of hepatitis. Gaps like low awareness fueled by myths and misconceptions, lack of available information on hepatitis, poor systems of health, high cost of diagnostic testing and out of pocket expenses for viral hepatitis treatment, low capacity of health care providers, and the proliferation of substandard treatment centres across Nigeria poses a challenge to the elimination goal of hepatitis in the country.
The First Nigerian Hepatitis Summit
To spur action towards hepatitis elimination in Nigeria, hepatitis patient groups and civil society networks organized the first ever Nigeria Hepatitis Summit in December 2018. The groups were led by Danjuma Adda, Executive Director of ChargoCareTrust. The goals of the summit were to:
1. Improve health seeking behavior among Nigerians through disease awareness and, as more people become aware of the disease, help them discover their status and encourage them to seek treatment as appropriate;
2. Increase local and domestic health financing, increase domestic, local responses, and allocate needed funds towards the elimination of the disease as more state governments establish state actions plans;
3. Increase engagement and involvement of the private sector in accelerating the elimination goal of viral hepatitis in Nigeria and;
4. Increase the capacity of health care professionals and improve health care systems to deliver quality viral hepatitis cascade of care in line with WHO and national guidelines.
The summit was held on December 3-4 in Abuja, Federal Capital Territory. Over 200 participants from diverse sectors attended including the:
* WHO’s Nigerian office
* State Directors of Public Health across Ministries of Health
* State HIV/AIDS Program Managers-Hepatitis is domiciled in the State HIV/AIDS programs at both national and state levels.
* Civil society and NGOs from 26 states in Nigeria
* Academia including the Society of Gastroenterologist and Hepatologist in Nigeria (SOGHIN)
* Private sector representatives
* Professional Medical associations
The Society of Gastroenterologist and Hepatologist (SOGHIN) led the technical faculty. SOGHIN made up 70% of the speakers. Other Speakers included: World Health Organization (WHO); World Hepatitis Alliance (WHA); Clinton Health Access Initiative (CHAI); National Primary Health Care Development Agency; Harm Reduction Association of Nigeria; and Representatives of States Ministries of Health.
Outcomes from the Summit
* Increased advocacy at state ministries of health to ensure state governments prioritize hepatitis cascade of care
* The engagement of private institutions to invest in the hepatitis cascade of care
* Efforts to enhance collaboration towards improving hepatitis cascade of care between civil society organizations and state governments
* Increased domestic financing is needed by state governments towards the elimination of viral hepatitis in Nigeria
* The World Hepatitis Alliance (WHA) UK is partnering with CSOs/Patient groups to build advocacy efforts for hepatitis C financing. To this end, WHA is supporting the development of a hepatitis C financing model for the engagement of state governments and private sector players to invest in elimination projects across Nigeria.
Looking Towards the Future
For the first time, government representatives from the state and national ministry of health, patient representatives, and civil society members came together to talk about the burden of viral hepatitis with the common goal of finding solutions to the pandemic. It was evident during the meeting that the lack of commitment and political will by the national government may cause Nigeria to miss the target goal of eliminating viral hepatitis if strong actions are not taken. Viral hepatitis must be recognized as a disease of public health importance in the country.
At the moment, the viral hepatitis cascade of care remains beyond the reach of the majority of Nigerians, fueling the spread of fake and substandard practices and the proliferation of treatment centres around the nation.
Almost everyone in Nigeria is affected by the scourge of viral hepatitis. Brothers, friends, and relatives have been lost to this disease. The conspiracy of silence across the nation and lack of strong will to address the pandemic remains a puzzle that we all need to solve.
Nigeria has what it takes in terms of financial and human resources to be the regional leader in the drive towards the elimination of viral hepatitis in Africa. What it lacks is the political will and commitment of government at all levels and the interest of private sector players to invest in the elimination of viral hepatitis in Nigeria. At the moment, other African countries are overtaking Nigeria on the path towards elimination by launching ambitious plans for their citizens.
If only we can get the attention and support of the private sector players and business moguls in Nigeria, the country will be on track towards the elimination of this disease and surpass the WHO target. If some of the countries wealthiest individuals contributed just a million dollars each to a National Hepatitis Elimination Project, Nigeria would see profound health benefits for the entire nation.
In order to attract support from partners around the world including pharmaceutical companies, the government of Nigeria must make a bold commitment and investment in addressing the challenge of viral hepatitis for its citizens.
The government of Nigeria must take the first step by making the financial commitment towards provisions for prevention, testing and treatment programs in the country by launching a pragmatic and ambitious Viral Hepatitis Elimination Project with clear targets to reach each year on prevention and treatment, including harm reduction strategies.
This November, the Hepatitis B Foundation attended TheLiverMeeting – an annual conference hosted by the AmericanAssociationfor the Study of Liver Disease (AASLD). Inspired by the enlightening presentations and conversations at the conference, hepatitis B expert Timothy Block, Ph.D, co-founder and President of the Hepatitis B Foundation, took a moment to talk to us about the complexities of the hepatitis B virus and the status of a hepatitis B cure!
This is part one of a two-part series.
Why is finding a cure for chronic hepatitis B so challenging?
That’s the big question. A cure is only complicated until we are able to figure it out. Once we understand it, it will be simple! Hepatitis B is curable, but finding a cure for it is complex for two reasons. The first is that it is not a simple matter of virology. The virus establishes itself in a stable nest inside of the liver – called the covalentlyclosedcircularDNA (cccDNA) – and successfully invades the immune system. To do this, the virus enters a healthy cell and plants itself inside of the cell’s DNA – a component of the cell that allows it to function properly and produce more healthy cells. This makes it difficult – but not impossible – to create a treatment that will attack the hepatitis B virus while not damaging the rest of the healthy cell.
Another reason that finding a cure is so difficult is because of the body’s immune response. Typically, your body can recognize a virus as a potentially harmful invader, or something that is not supposed to be within your body. This triggers something called an “immune response”, which is when your body sends fighter cells to destroy the virus. With hepatitis B, the proper immune response often does not occur. Your body does not completely recognize the virus as a threat. Instead of eliminating the virus as it is supposed to, your body responds by creating an inflammatory reaction in the liver, which is called hepatitis. The incomplete attack on the virus allows it to replicate inside of healthy cells and kill them. Together, the cccDNA and the body’s incomplete immune response create a challenge for scientists and researchers.
What will a hepatitis B cure look like?
As a patient advocate, I believe that the term “cure” should be reserved for when a person is no longer at risk for illness or death due to the infection. Having said that, I also realize the need for more practical definitions. You don’t know how effective a drug is until it’s been used for a long time, so it is important to use a definition that can encompass a wide range of possibilities.
A functional, practical cure would ideally be a drug that a person can take for a short amount of time. Once they have completed their prescribed dosage, they will stop taking the medication and still have the same benefits of the drug without having to take it. It would be great to eliminate the viral markers of the disease, such as the hepatitis B surface antigen (HbsAg), along with the reversal of liver disease and the return of normal liver function.
What is the Hepatitis B Foundation’s contribution to the cure?
When we started the Hepatitis B Foundation in 1991, there was very little interest in hepatitis B. Our goal was to help people with chronic hepatitis B and the diseases with which it was associated, like liver cancer and cirrhosis. We wanted to help people by finding a cure and by linking them to care. The Hepatitis B Foundation aims to help find a cure in two ways: through our own research institute – the Baruch S. Blumberg Institute – or by providing assistance to other researchers who are working towards a cure. Through the ups and downs of governmental and pharmaceutical interest, the Hepatitis B Foundation has remained committed and focused on solely addressing hepatitis B.
We created the Pennsylvania Biotechnology Center, which became a home for other hepatitis B companies, and we kept the interest strong. The Pennsylvania Biotechnology Center has now grown into a place for hepatitis B education and collaboration for professionals and students alike. We host regular seminars that provide updates on current research in the field and provide a welcoming environment for other hepatitis B experts to share their knowledge through presentations, guest lectures, and interactive discussions.
Nowadays, we have entered a clinical renaissance; people have a renewed interest in hepatitis B. Our job is to keep the attention focused on the infection and the people who are affected by it. We remain committed, resolved and steady. The Hepatitis B Foundation is the organization that is there for the patients.
Disclaimer: The information provided in this article is based upon recent research and updates in the field. Please note that timelines and specific information regarding hepatitis B drugs are estimations and are subject to change as new research emerges.
Tell us why you think hepatitis B testing is important?
Globally, 292 million people are living with chronic hepatitis B. Only 10 percent are aware of their diagnosis. The theme for this year’s World Hepatitis Day is “Find the Missing Millions.” Help us raise awareness for World Hepatitis Day (July 28th, 2018) by telling the world why it is important to get tested for hepatitis B!
Create an awareness message about hepatitis B by answering the prompt below.The Hepatitis B Foundation will compile video entries for a larger video that will be released on World Hepatitis Day, July 28, 2018.
Who Can Enter? Anyone across the world!
Here’s how to Enter:
Record a short video or an audio clip of yourself (15 seconds or less) answering the prompt, “People should be tested for hepatitis B because ….”
2. Note: You may choose the audio option if you wish to remain anonymous. Film yourself answering the above question. Your face and/or your picture does not have to be in the video; however, we must be able to hear you. If you choose to record an audio clip you are welcome to send a picture from your country or something that represents you.
Keep your video no longer than 15 seconds!
Send your video to us:
By uploading your video to our Google form(You must have a gmail account)
When you send your video, please mention that you wish to participate in the World Hepatitis Day 2018 Campaign.
Your video must be 15 seconds or less
Your video should be in English
Note: If your video is recorded in a language other than English, please provide the English translation. If possible, provide a timed script with timings of phrases.
Videos must be recorded in Landscape/horizontal mode. Videos recorded in a Vertical format cannot be used.
Record your video in a quiet area or with a microphone.
Record your video in good lighting.
By submitting a video to this campaign, participants give the Hepatitis B Foundation permission to use their videos (audio and video), in the World Hepatitis Day campaign and promotion, as well as in future hepatitis B awareness efforts. The participant will waive any claims to royalty, right, or remuneration for such use. The Hepatitis B Foundation will not disclose any personal information obtained from participants (i.e., full names, email addresses, etc.) in the campaign to third parties or use the information for marketing or other purposes.
Join the Hepatitis B Foundation (HBF) for a hepatitis B awareness campaign to commemorate Hepatitis Awareness Month! Start with a photo and create an awareness message about hepatitis B and
what makes you a Hep beLIeVER. Your photo entries will be a part of our national awareness campaign during the month of May!
Anyone and everyone may participate! (International followers can enter as well!)
What to Do
Upload a photo of yourself with your hand over your liver and tells us whatmakes you a hep beLIeVER! You can take the picture of yourself or with a group of friends! Be creative with your photo! You can take a look at CDC‘s and Hep B United‘s Know Hepatitis B campaign for inspiration.
Images should not include any material that would require third-party consent or violate copyright, privacy, or other right of any third party. If used, Know Hepatitis B campaign materials should be used in their entirety and retain the CDC and Hep B United logos.
Submissions including offensive language, imagery, or themes will be excluded and disqualified from the competition.
2017 was a big year for us at the Hepatitis B Foundation! I’ll give you a rundown of some of our accomplishments over the year.
We started the year off with a fresh new look! We got a new logo!
We also launched our national storytelling campaign, “#justB: Real people sharing real stories of hepatitis B,” in partnership with StoryCenter and AAPCHO. Fifteen people have shared their stories to bring a human face to hepatitis B and help increase public awareness, decrease stigma and discrimination, and promote testing and treatment for hepatitis B. Look for new stories in the coming year!
We have had a few additions to the HBF leadership team this year. Dr. Nat Brown, Ram Kapur, Dr. Su Wang, and Dr. Carol Brosgart all joined our board of directors. Dr. Francis Chisari and Dr. Robert Perrillo joined the scientific and medical advisory board.
After 25 years of service, our amazing and dedicated co-founder Joan Block retired in June. Without Joan, we would not have many of the programs we have today, especially the ones that provide multi-platform, multi-lingual educational materials, newsletters, and email and telephone helplines. She also pioneered a robust advocacy presence in Washington, D.C. that has resulted in hepatitis B becoming a protected condition under the Americans With Disabilities Act to prevent discrimination, and increased federal funding for hepatitis B and liver cancer research.
May was definitely a big month. Not only because we had numerous screening events and celebrations for Hepatitis Awareness Month, but also because we launched our Hep B Cure Campaign. The Hep B Cure Campaign is a national advocacy campaign to Double the Federal Funding within five years for hepatitis B and liver cancer research and public health. In March, we convened a virtual workshop with more than 30 of the world’s leading scientists to determine the research needed to find a cure for hepatitis B, and identify specific research projects in virology, immunology, and liver cancer, as well as strategies for expanding clinical research for therapeutic drug testing. The Hep B Cure Campaign is calling for increased federal investment to accelerate the pace of research for a cure, which will also significantly improve health and economic outcomes. Our full plan can be found in our “Roadmap for a Cure,” which can be found on our website.
Every year, we hold the crystal ball gala, our signature fundraising event. This event gives us a chance to recognize individuals who have made significant contributions to hepatitis B, and to our local Doylestown community. This year, Professor Mario Rizzetto, MD was awarded the Baruch S. Blumberg Prize for his discovery of the hepatitis delta virus. Marvin and Dee Ann Woodall were honored with the 2017 Community Commitment Award, and our own Joan Block was recognized with the distinguished Founders’ Award.
Just last week, it was announced that Hepatitis B Foundation’s president and co-founder, Dr. Timothy Block, was named a 2017 National Academy of Inventors Fellow! This is the highest professional accolade given to academic inventors who have demonstrated a prolific spirit of innovation in creating or facilitating outstanding inventions that have made a tangible impact on quality of life, economic development, and welfare of society. Congratulations Dr. Block!
Also during this year, our programs expanded, and our reach grew!
We updated our website in 2016 and we’re so glad to see that you have found us. We’re close to 1.5 million unique page views for the year, which is about 4,000 people visiting our website every day!
The Hepatitis B Foundation grew its’ social media reach to over 14,500 followers on Facebook, Twitter, and Instagram. We’re close to 10,000 likes on Facebook! Hopefully, we’ll hit 10 K before the end of the year! Ask your friends to follow us and like the page!
The Hepatitis Delta Connect program had a breakout year since its 2016 launch with over 11,000 website views from over 4,000 patients and providers in 92 countries! Hepatitis Delta Connect reaches 4,650 people on social media through Facebook, Twitter, and Instagram. Not bad for the first-of-its kind outreach and awareness program!
With Hep B United, our national coalition, we distributed 6 mini-grants this year and held 12 hep B virtual training seminars reaching 2,000 live attendees and nearly 6,000 online viewers! We also had a record number of attendees at our annual Hep B United Summit during World Hepatitis Day in Washington D.C.! Together, our partners screened 4,649 people, educated 11,884 people, gave out 13,112 hepatitis B handouts, and were featured in 2 newspapers, 1 TV appearance (496,189 views), and 1 social media video. Hep B United has a social media reach that includes over 1,500 people across Facebook, Twitter, and Instagram.
Our newest program, the #justB storytelling campaign, has been very successful so far. We now have 15 storytellers, ranging in age from 21 to 75, representing 10 U.S. states, and sharing a diversity of stories around HBV and liver cancer, transplantation, treatment, stigma and disclosure. The #justB digital stories were released on May 1, 2017, in recognition of Hepatitis Awareness Month, on HBF’s YouTube Channel and at www.hepb.org/justb. Since the launch, there have been over 60,000 views of the 18 multi-lingual videos! We want to thank our partners for helping promote these videos, including CDC Division of Viral Hepatitis Shot By Shot in California. And We are very proud that a few of the videos were selected for screening at the American Public Health Association Annual Film Festival and the Philadelphia Asian American Film Festival.
Our storytellers have been very busy this year! They have conducted local hepatitis B education in their home towns, and have given interviews with print, online and radio news outlets! They have even written blogs to help spread awareness about hepatitis B! Our storytellers have also been on the move – they have made multiple visits to Washington, DC – to participate in a Congressional briefing and reception, an FDA hearing, and an in-person panel at the Hep B United Summit.
With our local efforts in Philadelphia, the Hep B United Philadelphia program screened 100 people, distributed nearly 700 HBV handouts through 27 community events and educated approximately 650 individuals on hepatitis B. Throughout the year we hosted 123 student volunteers from local University organizations including Asian Pacific American Medical Student Association (APAMSA) that provide BMI, blood pressure, blood glucose and vision screenings for any individual in attendance of our health fairs or screening events. Our Facebook, Twitter, and Instagram accounts have a following of 1,400 people!
Our outreach team has been very busy this year addressing your questions and concerns about hep B. Our counselors have answered over 2,200 emails, 3,650 questions on social media, and spent over 66 hours on over 400 phone calls.
2018 will be an even bigger year! We will be releasing our “Journey to the Cure” talk show and expanding our campus in Doylestown. We will continue to work every day to find a cure for hepatitis B and improve the quality of life for all those affected. We want to thank all of our partners, supporters and friends in the U.S. and around the world.
Be sure to follow us on Facebook, Instagram, Twitter, and Snapchat (@hepbfoundation) for all the updates in the next year!
The documentary film, produced by The Vaccine Makers Project, follows the unknown story of a man who “had more of an impact on [people’s] lives compared to Einstein.” The film tells the story of a courageous and gutsy scientist, Dr. Maurice R. Hilleman, and the elimination of diseases of children. With his unwavering determination, Dr. Hilleman invented the first-ever vaccine against a human cancer (the hepatitis B vaccine), developed the measles-mumps-rubella (MMR) combination vaccine, and prevented pandemic flu. During World War II he developed an urgently needed vaccine for Japanese B encephalitis in 30 days.
He is responsible for more than half of the vaccines children receive today and is credited with saving more than eight million lives every year. Now through exclusive interviews with Dr. Hilleman and his peers, rare archival footage, and 3-D animation, this new documentary puts a human face to vaccine science, revealing the character that drove this bold, complex, and heroic man.
When parents began choosing not to vaccinate their children in the 1990s, a cruel irony became clear; Hilleman’s unprecedented successes have allowed us to forget just how devastating childhood diseases can be. The documentary reminds us by allowing us to see these diseases as part of the film.
Community members from Philadelphia and Bucks County came for the film screening as they enjoyed fun movie snacks. They also enjoyed a panel discussion moderated by Timothy Block, PhD, with the documentary director and esteemed representatives from scientific community. Expert panelists included Donald Rayne Mitchell, Paul Offit, MD, David Oshinsky, PhD, and Walter Tsou, MD, MPH. They shared their thoughts on the documentary, Dr. Hilleman’s life, and the future of vaccines. Mitchell and Dr. Offit expressed that the documentary film was created to “inspire a kid or to get into [scientific] work someday,” and to “put a human face on vaccines.”
For more information about the film, click here. If you are interested in learning more about the hepatitis B vaccine, click here.
Be on the look out for a special “preview” vlog of the film screening at the end of December 2017.