Hep B Blog

Tag Archives: Hepatitis B Outreach

The Hepatitis B Patient Community Loses Its “Mom”

Hep B List "parents" Sheree Martin and Steve Bingham at a 2005 patient conference.
Hep B List “parents” Sheree Martin and Steve Bingham at a 2005 patient conference.

The hepatitis B community recently lost its much-loved advocate, resource and “mom,” Sheree Martin. She was co-owner of the Hepatits B Information and Support List from 1998 to 2011 and comforter and consultant to thousands of people around the world who live with hepatitis B.

The reach of her kindness and wisdom cannot be under-estimated. In the early days of hepatitis B, when medical treatment was misguided and stigma ran rife, Sheree nurtured a safe, online community that provided reassurance and accurate medical information. For many, it was the first time they were able to share the confusion, loneliness and frustration of living with chronic hepatitis B with people just like them. Continue reading "The Hepatitis B Patient Community Loses Its “Mom”"

WHO’s New HBV Guidelines to Help Combat Africa’s Growing Hepatitis B Crisis

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The World Health Organization (WHO) will release their first management guidelines for hepatitis B virus (HBV) by the end of 2014. For the first time, the guidelines will be geared towards resource-constrained countries, where the disease burden is high but resources are lacking. The new guidelines will be particularly welcome in African nations, where the incidence of viral hepatitis is increasing.

The overall scope of the World Health Organization’s new management guidelines for hepatitis B will include prevention, screening, and treatment of chronic hepatitis B and will be geared towards resource-constrained countries. Thus, WHO’s guidelines will be valuable for countries where the disease burden is high but resources are lacking.

The WHO Global Hepatitis Programme established a Guideline Development Group of external experts in 2013, which includes Hepatitis B Foundation (HBF) executive director Joan Block, and is co-chaired by Dr. Brian McMahon, who also serves on the HBF Scientific and Medical Advisory Board.

The new WHO guidelines will be particularly welcome news to African nations, where the incidence of viral hepatitis is increasing.

According to the WHO Global Hepatitis Survey 2013, the prevalence of chronic hepatitis B virus (HBV) infection on the African continent is up to 8% of the general population, and 75% of the population may have had prior exposure to the virus.

Yet, only two of the African member states that responded to the WHO Survey have a written national strategy to prevent and control viral hepatitis.

In Ghana, where the incidence of viral hepatitis is increasing, the sero-prevalence rate is high among blood donors (6.7%), pregnant women (6.5%) and school
aged children (15.6%), according to Mr. Theobald Owusu-Ansah, president of the Theobald Hepatitis B Foundation and the Hepatitis B Coalition in Ghana.

Compounding the lack of public health plans and national investment are factors common in many low-resource countries: limited awareness of hepatitis B among the public and providers, poor access to care, expensive therapies, and few liver specialists.

Global agencies are beginning to recognize the urgency of the situation. In addition to the WHO, the World Health Assembly is taking steps to combat the growing crisis. The Assembly adopted a second resolution on viral hepatitis in May 2014 that advises governments on how to prioritize and coordinate public health efforts.

But governments cannot tackle these problems alone, Mr. Owusu-Ansah believes. He urges governments to partner with commercial and nonprofit organizations to mobilize much-needed expertise and resources.

Continue reading "WHO’s New HBV Guidelines to Help Combat Africa’s Growing Hepatitis B Crisis"

‘Think Again’ About Hepatitis – World Hepatitis Day Events in Ghana

imagesTheobald Owusu-Ansah of the Theobald Hepatitis B Foundation works tirelessly to raise the profile of hepatitis B in Ghana, where the HBV prevalence is approximately 30% in blood donors. Through collaboration with others, and heightening awareness with Ghanaian celebrities, Theobald and others were able to raise viral hepatitis awareness, and provide free screening and HBV vaccination during their World Hepatitis Day event this year. Read his account below and check out Theobald and the work he and his foundation are doing at the www.theobaldhepb.org or find THBF on Facebook

Viral hepatitis is the leading cause of liver cancer, which is the second most common cause of cancer deaths in Africa. On World Hepatitis Day, we urged the government to take actions ASAP to improve hepatitis awareness, monitoring, prevention and treatment.
 ASAP is a blue print framework for Global action, developed by the WHO to guide national government on the effective ways to prevent and control the transmission of viral hepatitis. This framework has four axes:

1.  Awareness raising, partnership promotion and resource mobilization,
2.  Scientific evidence that drives policies and actions,
3.  Access to immunization and information to prevent transmission,
4.  Provision of screening, care and treatment.

Thousands of Ghanaians live with viral hepatitis. About a third of Ghanaians living with viral hepatitis are unaware of their status and are not receiving care and treatment for the condition. It is estimated that hepatitis B kills over 1 million people each year, and an estimated 1 in 12 persons are currently infected and have to face life with chronic liver disease.

Ghana belongs to one of the areas where the prevalence of chronic HBV infection is high (≥8%), and that of hepatitis C is from 5-10%. There is high prevalence in approximately 30% among blood donors.
 In the year ending 2010, the incidence of viral hepatitis in Ghana was 43/100,000 population, with 102 deaths, which represents a 30% increase as compared to the year 2006 incidence of 30/100,000 population. (Source: www.theobaldhepb.org)

Ghana is rated a high-risk country for hepatitis B & C with between 10 and 15 percent prevalence rate. Out of every 100 Ghanaians, 13 may test positive for hepatitis B, which is far more prevalent than HIV/AIDS.

On the 20th July 2014, Celebrities in Ghana united to raise funds to support free Hepatitis B screening and vaccination. The program was under the theme “Celebrities Car Wash”.  Celebrities including Okyeame Kwame, Ghana Rap Doctor, former national black stars captain Stephen Appiah, Ghanaian actor Van Vicker and others volunteered to wash public cars for a fee to raise funds to support the programme.

The staff of Theobald Hepatitis B Foundation, Okyeame Kwame Foundation and other medical officials joined the celebrities for the car washing fundraising event. Members of the public took advantage of the celebrities’ car wash to bring their cars to be washed by their favorite’s celebrities. Celebrities expressed their interest in becoming viral hepatitis ambassadors in Ghana.

The event showed that you don’t need a big bank account to be able to make a difference, but with a bit of vision, one can create awareness.

On that day, we are calling on the government to develop and implement coordinated national action plans to fight viral hepatitis. The Theobald Hepatitis B Foundation in collaboration with the Hepatitis Coalition of Ghana, Okyeame Kwame Foundation together with MDS Lancet Laboratories, Roche and Ridge Hospital RPD on Saturday 26th July, 2014, offered free hepatitis B screening and vaccination to hundreds of people at James Town – Mantse Abgona in Accra. Out of 359 people screened, 49 people tested positive and they received counseling on what to do and what not to do, in terms of treatments and other biochemical tests they needed to undergo.

The Rapper observed that the youth turned out for the screening this year and expressed appreciation for the turnout. “I am really glad to see most of the young people come for the screening. This is to say that the youth is giving attention to health and this also indicates that we are moving in the right direction as a people,” says Okyeame Kwame.

The president of the Theobald Hepatitis B Foundation, Mr. Theobald Owusu Ansah delivered his speech for the occasion on the theme: “HEPATITIS: THINK AGAIN”, calling on the government to give much attention to Hepatitis B.

Thank you to all World Hepatitis Day supporters, sponsors and the media who volunteered their time, supplies, and/or funds to support this year’s events, and raising the profile of viral hepatitis in Ghana.

 

The Public Health Popularity Contest: Why You’ve Never Heard of Hepatitis B

charlotte_lee_hep_b-1Please welcome guest blogger Charlotte Lee, a pre-med Duke University Senior who has a passion for global health. Charlotte recently learned first hand how viral hepatitis  disproportionately impacts her community and how it tragically touched her own family.  

I walked into the first day of my internship ready to take on what I thought were the major public health crises of the world – malaria, AIDS, avian flu. Instead, my supervisor gave me a hefty stack of literature on hepatitis B. Sure, as a premed student I knew that hepatitis had something to do with the liver, but I was shocked to find out that hepatitis B was the most common serious liver infection in the world—one that chronically affects over 350 million people worldwide, including 1 in 12 Asian Americans—and I had never heard of it.

As a 21-year old Asian American who is passionate about global health, I felt cheated to only now discover that there is an infectious disease disproportionately affecting my community. Somebody should have told me about this! To then find out that it was completely vaccine-preventable – somebody should have told everyone about this!

About halfway through my internship, I found out that my grandfather died from viral hepatitis that he contracted through a blood transfusion. Suddenly the disease had a face, and it was a smiling man with wide rimmed glasses who used to sit me on his lap and feed me popcorn. It now feels like my duty to spread the word.

Hepatitis B is transmitted through blood or body fluids and causes deadly liver disease, including liver cancer, in 1 out of every 4 chronically infected people. Meanwhile, the famous West Nile Virus causes serious illness in less than 1% of infected people.

So, what makes this disease so easy to ignore? Hepatitis B is unfortunately an invisible disease; it can take up to 20-30 years before symptoms appear, at which time cirrhosis or liver cancer may have already developed. Hepatitis B is a silent killer and it affects a population invisible to the media and policy.  Anyone can get hepatitis B; however, people born in countries outside the US that have not instituted a strong hepatitis B testing and vaccine program have a large population (2 out of 3 people) who are unaware they are infected. Most get the disease at birth from their mothers who are chronically infected with hepatitis B. Many are impoverished and disenfranchised. Asian Americans make up more than half of hepatitis B cases in the US, but those from many other countries around the world are also at risk for having the disease.

However, the “it won’t happen to me, so I don’t care” rule doesn’t work for all diseases. Most people in the US don’t consider themselves at risk for AIDS, malaria, or tuberculosis, yet those diseases have plenty of name recognition.

One thing that AIDS, malaria, and tuberculosis all have in common is their deadliness. AIDS killed 1.47 million people in 2010. But did you know that viral hepatitis (hepatitis B & C combined) killed 1.44 million that same year?

Its symptomless nature also makes it hard to visualize. While other diseases invoke graphic images of illness, hepatitis devastates the liver. Most people probably don’t really know where their liver is located.

What frustrates me most is that it is a preventable disease, one that we can eradicate. The hepatitis B vaccine is one of the safest and most effective immunizations available, and it protects you for life. The CDC recommends all babies receive the vaccination at birth, yet many major hospitals in NYC are not immunizing newborns, with some vaccination rates as low as 20%.

Hepatitis B needs public health champions to get it into the spotlight. Policies need to be passed to fund much-needed education, surveillance, and treatment programs. Doctors should be educated about it, tests should be automatically ordered, and the government should pay for everyone to be vaccinated. This system doesn’t yet exist, but thankfully there are people working tirelessly towards it.

Monday was World Hepatitis Day 2014. This year, the Viral Hepatitis Testing Act was introduced in the House and Senate to provide $80 million over three years for prevention, testing, and linkage to care. This is the second term this bill has been introduced, and now it’s time to pass it. Locally, the New York City Council just introduced a $750K viral hepatitis initiative for 2015. And just last week, Councilwoman Margaret Chin was on NBC talking about the first ever NYC Hepatitis B Awareness Week. My internship will soon end, but advocacy never rests. There is always more to be done.

charlotte_leeCharlotte Lee is a premed Duke University senior, where she studies Public Policy with minors in Global Health and Chemistry. This summer, she has been working on hepatitis B policy issues at the Charles B. Wang Community Health Center in New York City, where she was co-coordinator of the first-ever NYC Hepatitis B Awareness Week. She is passionate about health disparities and aspires to be an OB/GYN and women’s health advocate. Her biggest claim to fame is that she may have discovered a new species of sand fly last summer in the Peruvian Amazon (confirmation still pending). 

Join Hep B United, CDC DVH, HBF, AAPCHO and CDC NPIN for a Twitter Chat!

Mark you calendars! Join Hep B United,CDC Division of Viral Hepatitis , HBF, AAPCHO and CDC NPIN for a Twitter Chat on Tuesday, November 19th, 3pm EST to discuss the Know Hepatitis B campaign and what Hep B United, partners and coalition members are doing to raise awareness and increase hepatitis B testing and vaccination among Asian Americans and Pacific Islanders (AAPIs). Hepatitis B is the leading cause of liver cancer and a major health disparity among AAPIs who are disproportionately impacted by HBV. Continue reading "Join Hep B United, CDC DVH, HBF, AAPCHO and CDC NPIN for a Twitter Chat!"

World Hepatitis Day in Ghana

Ghanians lined up for a viral hepatitis screening at last year's World Hepatitis Day event in Tamale, Ghana (Northern Region)

HBF is pleased to share World Hepatitis Day plans of our friend Theobald Owusu-Ansah of the Theobald Hepatitis B Foundation in Ghana. The Foundation is also a voting member of the World Hepatitis Alliance. 

On July 28th, 2013, The Theobald Hepatitis B Foundation and the Hepatitis Coalition of Ghana will join the World with one voice to celebrate World Hepatitis Day in Sunyani at Victoria Park. In attendance will be the Chiefs, members of Parliament, District Chief Executives, Municipal Chief Executives, Assembly Members and all the Opinion Leaders of the Region.

The Theobald Hepatitis B Foundation is a non-profit organization whose main aim is to educate and create awareness of hepatitis B and C to the general public, ranging from the causes, and symptoms of viral hepatitis, to preventive measures.

On World Hepatitis Day, the activities will start with an early morning Float with music and dance throughout the principal streets of Sunyani, along with the members and volunteers of the Foundation and the Coalition distributing educational materials to the crowds. These leaflets, posters, banners and stickers are part of the ongoing media blast that will draw the public’s attention to problem of chronic hepatitis B among the people of Ghana.

Free screening and hepatitis B vaccinations will be ongoing throughout the day’s activities. Resource persons will be delivering their messages and educating the general public about viral hepatitis. It is important that the people learn and understand whether or not they are positive or negative for viral hepatitis, and if they are positive, what is next.

The Delegation of the Government and other health care professionals will educate the public on Viral Hepatitis Policies and the way forward. Dieticians will also take the general public through the kind of food and diet one needs to eat, and the importance of avoiding alcohol, in order to defuse the public cry of the cost of prevention and treatment of hepatitis B.

Participating organizations will then take the opportunity to appeal for funds from the government officials and the Chiefs of the region present, in order to enable us to successfully organize our last programme of the year.

At the end of the event, the public will be provided with advice, and directed to seek medical information from qualified health professionals, in order to avoid falling into wrong hands of those trying to sell false cures for those with hepatitis B.

Please join us for our World Hepatitis Day activities in Victoria Park if you are in Sunyani, Ghana.

Theobald Owusu Ansah
Theobald Hepatitis B Foundation
P.O. Box GP 21325 Accra-Ghana:

Phone: 00233-20-8269214
theobald2003@yahoo.com
Theobald Hepatitis B Foundation website

 

Hepatitis B Awareness Month at HBF

Daniel Chen - "Hep B Hero", HBF Public Health Program Manager, today's guest blogger

“B a hero!” is not simply a slightly-cheesy-yet-very-awesome campaign theme and slogan. It is a statement that we stand behind and strive for. It is about having the courage to stand up for the disenfranchised among us. It is about taking the time and effort to improve the lives of those we could have easily ignored. It is about not just doing the right thing, but going above and beyond.

Over 900 people. That’s the number of people we provided free hepatitis B screening tests for within just the past 12 months. The screening tests were offered at 17 different events that took place all around the city.

Over 70 organizations. That’s the number of partners we currently work with to serve the community and empower the underserved. Besides hosting screening events, our partners also help us raise awareness through education, provide in-language patient follow up service for linkage to care, connect us with new partners, and many more aspects of our work in the community.

Over 30 vaccine clinics. That’s the number of vaccine clinics we will have held in collaboration with the Philadelphia Department of Public Health at community sites by the end of 2013. By hosting the clinics at community sites, we remove the transportation and language barriers and make vaccines much more accessible for community members.

The list of accomplishments goes on. And all of this became possible because Philadelphia, as a city, has decided to “B a hero”. So get involved this May and help us celebrate the Hepatitis Awareness Month by coming out to one of our events. Come and support heroes everywhere in our fight against hepatitis B.

Friday, May 17

Hepatitis B Awareness & Media Event

11:30am-12:15pm @ Rocky Steps (Philadelphia Museum of Art, 2600 Benjamin Franklin Pkwy)

Join us in celebration of Hepatitis Awareness Month and Asian Pacific American Heritage Month by running up the Rocky Steps with us! All participants get a “B a hero” t-shirt and a cape. City Councilman David Oh will present a city council resolution, and a surprise performance will take place when we reach the middle level of the steps.

Saturday, June 1

Independence Dragon Boat Regatta

8am-5pm @ Schuylkill River (Kelly Drive, near St. John’s Boathouse)

Come cheer for team Philadelphia Hep B Heroes as well paddle our way to victory! The regatta is a family event with lots of entertainment such as cultural performances, rock climbing, and of course the exciting dragon boat races. So visit the Hepatitis B Foundation/Team Philadelphia Hep B Heroes tent for some snacks and cheer for our heroes.

Additional event:

Saturday, May 11

Hepatitis B Screening & Mini Health Fair

10am-1pm @ AmeriCare Pharmacy (600 Washington Avenue, Unit 18E, Philadelphia)

May Hepatitis Awareness Month would be incomplete without a screening event. In collaboration with the Jefferson Medical College APAMSA medical students and the AmeriCare Pharmacy, we will be providing free hepatitis B screening tests for those who were born in Asia or whose parents were born in Asia. Additional service such as blood pressure and blood glucose measurements will also be available at this event.

The Hepatitis B Foundation Participates in Liver Capitol Hill Day, 2013 – A Personal Reflection

Yesterday the Hepatitis B Foundation participated in the American Association for the Study of Liver Diseases (AASLD) annual “Liver Capitol Hill Day” visits. This is a great opportunity to get in front of state Senators and Congressmen in order to make requests known to them. It is also an opportunity to educate. As a constituent, your state representatives are interested in what you have to say. The “Asks” for the day were to support funding for liver related research, prevention strategies, and support of liver patient access to quality medical care.  Specifically, we were asking for NIH funding growth, rather than the 20% cut over the last decade, along with support of government agencies such as the CDC Division of Viral Hepatitis, and the delivery of health care systems and payment policies for patients living with liver diseases.  Prevention is also critical with specific asks for new, one-time hepatitis C testing and screening for hepatitis B for at-risk patients. As we are all aware, budgets are tight and we will all soon feel the effects of the Sequester. Research programs may no longer be funded, or severely cut, public health agencies and programs will be cut, and patients who are currently receiving medical assistance will suffer. For treated patients with HBV, it is essential nothing interrupts the daily antiviral use, and of course HBV and liver cancer prevention through screening, vaccination and surveillance is both necessary and cost effective in the long run.

Due to the Sequester, the day started in a panic for many Hill visitors. I was fortunate to arrive early – a good thing since I waited in a long security line for 45 minutes that wrapped around the building. As Maryland residents, Dave Li and I met with staff from both Senator Ben Cardin’s (D) and Senator Barbara Mikulski’s (D) offices.  Senator Mikulski was recently appointed the Chairperson of the U.S. Senate Appropriations Committee. This means she will have a great deal of influence on budget and spending decisions. We were told that due to the Sequester, the Continuing Resolution (CR) will remain in place for the remainder of the 2013, but Senator Mikulski is optimistic that the FY14 and future funding for the NIH, specifically, will be maintained. As a Maryland Senator, this is extremely important to Sen. Mikulski on many fronts. Senator Cardin has been making visits to agencies in MD, including the NIH, and researchers are frustrated they are unable to do their work.  Both Senator Cardin and Senator Mikulski support federal agencies (such as the CDC, Division of Viral Hepatitis, Public Health Agency etc.) and initiatives that provide care and services to meet the health care needs of Marylanders.  Fortunately this supports the Health and U.S. Health and Human Services (HHS) Viral Hepatitis Action Plan initiatives, since both Senators are supportive of prevention and surveillance initiatives.  Dave and I walked out of our Senate meeting feeling pretty good.

Unfortunately, the outlook was not so optimistic on the House side. We visited staffers from Congressman Chris Van Hollen and Congressman Elijah Cummings offices. Although they are working on budgets, they are meeting with opposition and resigned to deep cuts in their supported programs.  Congressman Cumming’s staffer was pleased to hear an optimistic viewpoint from Mikulski’s office.  Although clearly mixed signals from our House and Senate meetings, we can only hope that Congress will eventually work together and move forward with continued funding of agencies and programs that support those living with liver disease.

Please remember that your state Senators and Representatives have been voted to serve YOU. It is imperative that your voice be heard. If you don’t let them know what is important to you, important programs and agencies will be drastically cut.  You do not need to be a political machine to participate. Don’t know your Representative?   Find your Rep. on-line by putting in your zip code or state to learn who you need to contact. Find your Senator, Governor and Congressmen here. Call the Capitol switchboard’s toll free number at 1-888-876-6242 , or send an email  or letter with your asks, and your personal stories. Be sure your message is clear and concise, and personalize it if you can. You can visit your Representative or Senator when you are visiting Washington, D. C., or in the local, state office. Let your voice be heard – especially during this very difficult time.

Cast Your Vote for HBF in the Philly DoGooder Video Contest!

HBF is entering the Philly DoGooder contest with the fantastic video by HBF’s own, Daniel Chen. Click and watch below. There will be 5 winners total, so if we win we’ll be splitting the $250,000 prize money with 4 other organizations. Help us win and get more resources to empower the community by voting once a day!

Voting is easy! Click on the big “VOTE FOR THIS ENTRY” button directly below the video and you will directed to log into your Facebook account. If you don’t have a Facebook account, you can register with your email so you can vote. Every vote counts, so be sure to share this information with family and friends and on all of your social media outlets. Don’t forget to vote once every 24 hours!