May is Hepatitis Awareness Month and Saturday, May 19this National Hepatitis Testing Day in the United States. This day is an opportunity to increase awareness and testing for both hepatitis B and C. It is also a reminder for health care providers and the public of the importance of testing for viral hepatitis.
Why is hepatitis B testing necessary? Hepatitis B is largely asymptomatic, which means that symptoms don’t always occur or are not obvious. Some people will not know that they have hepatitis B until it is too late, or they may learn of their infection from a blood donation screening or lab work. There are groups of people who have a greater risk of hepatitis B compared to others, so it doesn’t hurt to be sure. here are some places around the world that have an extremely high hepatitis B prevalence (where many people are infected). It is important that people who are at high risk for a hepatitis B infection see a doctor to get tested, to find out if they have a hepatitis B infection. People living with chronic hepatitis B should be monitored regularly and appropriately screened for liver cancer. So, if you find you do have hepatitis B, talk to your doctor about what to do next.
Remember, hepatitis B does not discriminate. Don’t wait for symptoms. B sure. B tested. If you do not have hepatitis B, then give yourself lifelong protection with the hepatitis B vaccine. The hepatitis B vaccine is safe and effective. Children or adults can get the 3-shot vaccine series, and there isa newly approved two-dose adult vaccine to protect us against hepatitis B! However, the vaccine doesn’t work if you are already infected.
Don’t forget to check out these free, confidential hepatitis screenings this weekend! Check out Hep B United’s resource to find local events in your area. You can also visit the CDC’s website for more ideas on how to increase awareness on National Hepatitis Testing Day, and every day!
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!
Hepatitis B is the global pandemic no one talks about, yet one in three people worldwide has been infected. In 2013, hepatitis B and C together was the seventh-leading cause of death worldwide, with hepatitis B causing 780,000 deaths annually.
Today, 257 million people have chronic hepatitis B. Despite the availability of an effective vaccine, the number of people living with hepatitis B virus is projected to remain at the current, unacceptably high level for decades and cause 20 million deaths through 2030.
May is Asian-Pacific American Heritage Month – a celebration of Asians and Pacific Islanders in the United States. The month of May was selected in 1978 to mark the first major Japanese immigration to the United States (May 7, 1843), and the completion of the transcontinental railroad (May 10, 1869), built primarily by Chinese immigrants.
Like all immigrants, Asians and Pacific Islanders brought with them unique cultures, languages, and lingering health problems from their homeland, including hepatitis B.
This blood-borne infection, unknowingly passed from mother-to-child, is an infection without a cure that would impact Asian immigrants and their children for decades until a vaccine was developed.
Today, administration of the first dose of the hepatitis B vaccine along with a dose of HBIG within 12 hours of birth severs this viral legacy and protects newborns from inheriting this infection. But that is not the end of the story. There are still many Asian-Americans who remain infected, and many Asian immigrants arriving today live with hepatitis B.
An estimated one in 12 Asian-Americans currently has hepatitis B, and two in three don’t know they are infected. Their infection rate is more than 20 times higher than that of the total U.S. population. Hepatitis B is the greatest health disparity between Asian-Americans and the general U.S. population. Approximately 1 million Asian-Americans are living with chronic hepatitis B infection – that’s about half of all cases in the United States. Continue reading "Celebrate Asian-Pacific American Heritage Month, And Get Tested for Hepatitis B"→
HBF is pleased to connect our blog readers to Christine Kukka’s monthly HBV Journal Review that she writes for the HBV Advocate. The journal presents the latest in hepatitis B research, treatment, and prevention from recent academic and medical journals. This month, the following topics are explored:
HBV Liver Cancer Requires Aggressive Treatment from the Start
Experts: Treat Cirrhotic Patients, Even if Viral Load Is Low
Some Patients Can Safely Stop Antiviral After Four Years
Tenofovir Safe and Effective in Pregnant Women with Drug Resistance
Researchers Discover Why Children Become Chronically Infected
Expert Recommends Treatment for Mental Confusion from Cirrhosis
Antivirals Increase Survival After Liver Cancer Treatment
HBV Patients with Diabetes Have a Higher Risk of Liver Cancer
Long-term Antiviral Use Increases Hip Fracture Rates Slightly
Second Vaccine Series May Be Needed for Children with Celiac Disease
Researchers Find HBV B Strain in Cuba Did Not Come from Africa
Harnessing the Power of RNAi Gene Silencing in a Quest of a Cure for Chronic Hepatitis B, and the HBV KnockDown blog written by Dirk Haussecker, who believes it’s about time everyone got serious about a functional cure for hepatitis B.
As I was reading the latest PK-PD study by Gilead on its lead experimental chronic HepB drug candidate GS-9620 (Fosdick et al. 2013), it finally dawned on me that much-touted GS-9620 has been designed to be nothing more than a better tolerated, more convenient version of an already existing treatment option, recombinant interferon. GS-9620 is therefore an example of the typical incrementalist Big Pharma value creation strategy. By contrast, if successful, an HBsAg knockdown approach such as with Arrowhead’s ARC520 would bring to healthcare providers and patients an entirely new, desperately needed treatment option as the field has become stuck with interferons and RT inhibitors for years. Continue reading "Gilead Lead Chronic HepB Candidate GS-9620 Conceived as a More Patient-Friendly Interferon"→
Hepatitis Awareness Month has come to a close, and it has been one exciting, busy month for those of us at HBF and Hep B United Philadelphia. In the course of 6 weeks, we have had many of our major events of the year – nearly all featured during Hepatitis Awareness Month or on Hepatitis Testing Day. Have a look at what we’ve been up to this past month…
On May 15th, AAPCHO and HBF, with the support of the U.S. Department of Health and Human Services’ Office of Minority Health, launched the Hep B United national campaign. This unique partnering and collaborative effort will bring attention and action to end hepatitis B – especially among high-risk Asian Americans and Pacific Islanders (AAPIs) in the U.S. You’re going to see a lot of activity out of Hep B United...
HBF’s Director of Public Policy & Affairs set off to Washington D.C. to attend the Congressional Briefing on Chronic Viral Hepatitis and Liver Cancer hosted by our champions in Congress. Keeping Hepatitis in the hearts and minds of our elected Representatives is paramount in supporting viral hepatitis efforts in our country.
Hep B United Philadelphia wrapped up its awesome “B A Hero” PSA video contest and finalists and winners were announced. Check out these great PSAs!
Hepatitis Testing Day and the days leading up to the event were extremely busy for the Hepatitis B Foundation, Hep B United Philadelphia, and Partners. We kicked off testing day with our awareness-raising Flash Mob Event in Love Park in Philadelphia. This fantastic event included special guests Mayor Nutter, and Councilman David Oh, and plenty of other notable Hep B Heroes in attendance. It was an honor to receive a City Proclamation by Councilman Oh, supporting efforts to eradicate hepatitis B in the city of Philadelphia. And of course the students put their spin on the event with a “B A Hero” Rap. You have to listen to this...
Saturday, Hepatitis Testing Day, Hep B United Heroes donned their hero capes for the Hepatitis Testing Day Event held at the Asian Pacific Heritage Festival in Philadelphia. It was a successful event with 112 screened. Those screened and in need of vaccination will be provided with the HBV vaccination series, free of charge, from the Philadelphia Department of Health.
That same day, Hepatitis B Foundation heroes hosted HBF’s B Informed Conference. This year’s conference was specifically directed to parents of children with hepatitis B. This was an incredible full-day conference. Expert specialists in the field addressed both the medical issues and personal challenges of parenting a child with hepatitis B. It was a wonderful opportunities for parents to meet and discuss, face-to-face, with families facing like challenges. Lasting bonds were created that day. You’ll want to check back at a later time to read a reflection on the day, and access information presented by our expert speakers.
And finally we end this month’s awareness efforts this weekend by participating in the Philadelphia Independence Dragon Boat Regatta. Team Philadelphia Hep B Heroes will (hopefully) row their boat to victory, but even if they don’t win, they are winners at heart. The team is composed not of an expert crew, but rather Hep B United Philly community partners, student partners and staff. If you’re in Philly, stop by and cheer the team to victory. Plenty of team members will be at the event to raise HBV awareness and discuss hepatitis B testing, prevention and treatment.
There were a lot of Hep B Heroes out there this month. Feel free to share the events of your organization this month!
If you are a family with a child with HBV, or a family considering the adoption of a child with HBV as a special need, it is important to consider how you will manage your child’s hepatitis B information. As an adult you are making your own personal disclosure decision, but when you are dealing with your child’s personal information, it is a decision that needs to be made with the entire family to be considered. Think long and hard. Once this information is out, you cannot take back.
Something that I did not truly consider when we were making this decision was the fact that this was not really my information, but rather my child’s information. Our child was a baby at the time. We could not know her personality, and what kind of a person she would become with time. We were fully immersed in the baby scene, and were not even thinking about the teenage years. Little did I know that teens have an opinion about everything. My kids lost interest in discussing their adoption story at the store check-out by the time they entered elementary school. Certainly no one wanted to be the adopted kid with hepatitis B. No one wanted to be the adopted sister of the adopted kid with HBV. I cannot speak for other kids, but that was the case with our own children. In general, kids want to blend.
Initially we were concerned about sending the wrong message to our children by not disclosing this information. There should be nothing to hide, so we forged ahead with our information in a couple of small, selective circles. These were carefully chosen groups, nothing permanent like our neighborhood, since we could not afford to move if there were repercussions. Disclosure was abruptly halted after a confrontation with the early intervention team at our home school. Had we not been under the advisement of counsel, I fear the situation would have resulted in a breach of information we might not have been able to contain. I have heard similar stories from other adoptive parents, and it makes me cringe every time.
Parents are fiercely protective of their children – especially when they are young. I have heard heart-wrenching stories of broken friendships, neighbors that no longer speak, and the distancing of family members, all over the disclosure of information that perhaps should not have been imparted. But who knows who will be accepting and tolerant, and who will refuse to let your child play next door? Sadly, people lack basic information about HBV, and even in the U.S., there is a stigma associated with infectious diseases. They do not know anything about HBV, or how it is transmitted. They may not even be aware that their child is vaccinated against hepatitis B. They may choose to err on the side of caution, and choose not to have your child play with their child.
Although we made a family decision to not disclose, there were people that we chose to tell. Disclosing to family did not go the way I had expected, and I’m glad there are a few states between us. Fortunately with time and distance, people forgot about it, because they never fully understood it from the beginning. Disclosure to selective friends worked for us, but there were few that were told. We disclose to all treating physicians.
On the pro-disclosure side, I am aware of families that have disclosed their child’s HBV information and it works well for them. They are pleased with the support they receive from friends, school, church and family. They have made the decision to educate and raise awareness as a family. I commend that. Perhaps I am even a little envious, because that is how it should work! Unfortunately it did not work well for our family, where we live. Now that my daughter is in high school, she is okay with her HBV status. Fortunately she’s not truly “out there” with her information, but she has contributed in her own way to raising HBV awareness in selective circles.
To disclose or not to disclose, it’s a family decision. Think about it, and do what is best for your entire family.
Prevention funding in Health Care Reform is under attack.
Tell your representative to vote NO on H.R. 1217
On April 5th, the assault on the Affordable Care Act continued when the House Energy and Commerce Committee voted along partisan lines in favor of H.R. 1217, which would repeal the Prevention and Public Health Fund. This fund, part of the health care reform law, provides money each year for vital prevention and public health services. The fund will grow each year until it eventually provides $2 billion/year.
This fund offers a great opportunity to get some of the money targeted to viral hepatitis prevention, screening, and testing programs. We cannot advocate for that money if the entire fund is repealed. We also must protect this fund as part of defeating the ongoing strategy by those who oppose the Affordable Care Act to attack the law by repealing and de-funding its important pieces.
The full House of Representatives is expected to vote on H.R. 1217 as early as this week. Please take a few minutes to call your Representative and tell him/her to vote NO.
Here’s what YOU can DO:
Please call your U.S. House Representative immediately. We are hearing directly from Congressional staff that phone calls are the most effective form of communication.
Call the Capitol Switchboard toll-free at 1-888-876-6242 and ask to be connected to your Representative. When you reach your Representative’s office, tell whoever answers the phone that you are a constituent, and that you would like to speak to the staff person who handles health care issues. Whether you speak to the staff person live or leave a voice mail, tell him/her:
“My name is _______________ and I live in (city/state). I am calling to urge Representative ____________ to vote no on H.R. 1217. This bill would repeal the Prevention and Public Health Fund, which is an important part of the Affordable Care Act. This Fund is a great opportunity to provide badly needed funding for viral hepatitis prevention, testing, and screening programs and must be preserved.”
Thank you for taking the time to make a difference! Please spread the word.