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World Hepatitis Day 2012 in Cairns, Queensland, Australia

WHD 2012 Cairns: Hep Day Out friends - Yvonne, Rhondda, Murph & Allana

A personal reflection on WHD events from Guest Blogger Yvonne Drazic

WHD was again promoted and celebrated in style in Cairns with lots of dedicated people making it a great success. The key organizers were Rhondda, the Viral Hepatitis Health Practitioner from the Cairns Sexual Health Service, and Alanna and Julie from the Queensland Injectors’ Health Network (QuIHN). At present, the bulk of hepatitis B health promotion and patient support is done through these organizations as part of hepatitis C and HIV services because sufficient separate government funding for hepatitis B is not yet forthcoming.

Last year, Rhondda organized a fabulous free lecture about hepatitis B which, while aimed at health care professionals and medical staff, was open to the public and especially to people affected by or living with hepatitis B. The speaker was Dr. Benjamin Cowie, an infectious diseases physician from Melbourne with a special interest in hepatitis B. His passionate and compelling presentation evoked great feedback from the audience, many stating it was a real eye-opener. This year’s lecture was presented by Dr. Joshua Davis who spoke equally engaging about his efforts to address hepatitis B in Indigenous communities in the Northern Territory. The talk attracted an audience of more than 100 people. As an add-on to the lecture, Aboriginal and Torres Straits Islander health workers could move on to an event/workshop called Yarnin up HepB where they were able to discuss anything hepB – and get expert advice – from Dr. Davis. This was very well received although many participants were quite disturbed about the statistics of hep B in Aboriginal and Torres Strait Islander people.

This year the open day at Cairns Sexual Health Service was called “Hep Day Out”. It was designed to be fun with funky, colourful posters (created by the talented Murph) and a music jam session. Like last year, the day featured tours of the premises with screening opportunities, as well as the famous QuIHN van offering information, a scrumptious lunch and fun activities. Every visitor who took the tour and completed a short quiz received a cool t-shirt courtesy of Hepatitis Queensland (see photos) and a health pack. In addition, the resident psychologist was on site for people who wanted a chat and I was available for brain-picking for everyone who wanted to know more about hepatitis B. Invitations were distributed to migrant services and communities but unfortunately did not attract any visitors from these groups. Possibly the time was unsuitable due to work commitments but it could also be due to fear of stigmatization which may be increased in these populations. I am currently conducting research to explore barriers and other issues that may keep people from engaging in health-protective actions such as screening and monitoring. It will also help to find more effective ways of engaging with migrant communities and get a better turnout for next year’s WHD.

Overall, plenty of awareness was raised, many people were educated about viral hepatitis, and a fun time was had by all.

Raising awareness and Enabling Protective Action in an Affected Community in Australia: A work in progress…

Welcome Guest Blogger Yvonne Drazic. She is a PhD candidate at James Cook University in Cairns, Far North Queensland, Australia. Her research focus is on reducing the rate of undiagnosed and untreated chronic hepatitis B, in migrant communities from endemic areas, particularly the local Hmong community. Yvonne lives with chronic hepatitis B, and feels privileged to be one of the less than 3% of hepatitis B cases treated in Australia. She gives back in so many ways, and is also a list parent on the HB-List, an online patient forum

As a research student from tropical Far North Queensland in Australia, I am grateful that today’s technology allows me to be part of the global hepatitis B community. My goal is to help our local Hmong community of about 700 people to prevent future repercussions of undetected and untreated chronic hepatitis B (CHB). Having CHB myself, I was amazed to learn how many people miss out on vital medical care because they are unaware of their infection, or of its potential consequences. At present, the incidence of hepatitis B-related liver cancer is rising in Australia because undiagnosed CHB is doing much more harm than newly acquired infections in adults. The majority of affected people in Australia are migrants from endemic areas and Aboriginal and Torres Straits Islander people who were mostly infected at birth or in early childhood. Yet, less than 3% of cases are currently receiving antiviral therapy (Carville & Cowie, 2012).

I chose to focus on the Hmong community because studies in the U.S. show a particularly high CHB prevalence (~15%) in this population (Kowdley, Wang, Welch, Roberts, & Brosgart, 2011). And sure enough, when talking to members of the community, I heard sad stories of family members getting sick or dying from liver disease. Hepatitis B as a threat to public health has long been neglected in Australia, compared to the attention given to HIV and hepatitis C. However, based on a National Hepatitis B Needs assessment (Wallace, McNally, & Richmond, 2008) and other reports that showed an urgent need for a co-ordinated public health response, the first National Hepatitis B Strategy was finally released in 2010. The strategy highlights priority action areas such as raising awareness in patients and doctors, improving screening and diagnosis practices, and removing barriers in culturally and linguistically diverse (CALD) populations.

In Australia, pregnant women are routinely screened for hepatitis B. However, research suggests that many who test positive during pregnancy do not receive adequate follow-up care (Guirgis, Zekry, Yan, Bu, & Lee, 2009). In addition, recent studies indicate that CHB awareness is still low in Australian general practitioners (GPs), and that many patients are not managed according to guidelines (Dev, Nguyen, Munafo, Hardie, & Iacono, 2011; Guirgis, Yan, Bu, & Zekry, 2011). Therefore, in order to achieve improvements in early detection and timely referral for treatment, increasing GP involvement is a priority.

My project comprises (1) an assessment of knowledge, current practice, awareness of resources and educational preferences of local GPs; (2) assessments (pre- and post) and an appropriate intervention in the Hmong community (all based on behavioural theory); and (3) an assessment of pregnant women and new mothers. At the time of writing, data collection from GPs is under way.

Community engagement is, of course, an ongoing process. The project has the support of a community leader who is providing invaluable information about what may and may not work in his community. Initial information about the project was recently distributed. Building trust and showing that my motives are genuine takes time and it is important to let things develop instead of pushing ahead too fast. The fact that I have CHB myself may help to convey the message that it is okay and even necessary to talk about hepatitis B. Normalization assists in the removal of stigma.

More of my work to be shared in another blog. A big thank you to the special people who have been inspiring and encouraging me to do this work and keep offering tremendous, ongoing support.

Yvonne

References:

Carville, K. S., & Cowie, B. C. (2012). Recognising the role of infection: preventing liver cancer in special populations. Cancer Forum, 36(1), 21-24.

Dev, A., Nguyen, J., Munafo, L., Hardie, E., & Iacono, L. (2011). Chronic hepatitis B: A clinical audit of GP management. Australian Family Physician, 40(7), 533-537.

Guirgis, M., Yan, K., Bu, Y. M., & Zekry, A. (2011). A study into general practitioners’ knowledge and management of viral hepatitis in the migrant population. Internal Medicine Journal, Accepted article. doi: 10.1111/j.1445-5994.2011.02440.x

Guirgis, M., Zekry, A., Yan, K., Bu, Y. M., & Lee, A. (2009). Chronic hepatitis B infection in an Australian antenatal population: Seroprevalence and opportunities for better outcomes. Journal of Gastroenterology and Hepatology, 24(6), 998-1001. doi: 10.1111/j.1440-1746.2009.05841.x

Kowdley, K., Wang, C., Welch, S., Roberts, H., & Brosgart, C. (2011). Prevalence of chronic hepatitis B among foreign-born persons living in the United States by country of origin. Hepatology, Accepted preprint.

Wallace, J., McNally, S., & Richmond, J. (2008). National hepatitis B needs assessment. Melbourne: Australian Research Centre in Sex, Health, and Society, La Trobe University.

 

 

An Event-Filled Hepatitis Awareness Month for the Hepatitis B Foundation and Hep B United Philadelphia

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…

HBF preceded the month with its annual, signature fund-raising event. The Crystal Ball was held April 27th and was a very successful, enchanted evening for all in attendance. HBF exceeded goals for the year, and we were pleased to honor Dr. Howard Koh, Assistant Secretary of Health and Human Services (HHS), who was presented with the Baruch S. Blumberg Prize for his leadership in creating the HHS Action Plan for Viral Hepatitis.

The Hepatitis B Foundation was selected as this month’s featured partner by CDC NPIN. What a great honor, and a wonderful opportunity for HBF to showcase some of our programs, services and materials.

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!

National Hepatitis Testing Day. Why Should I Get Tested?

Saturday, May 19th is the first National Hepatitis Testing Day.  Viral hepatitis partners will be working together with local health departments and other community partners in to bring viral hepatitis testing events to a neighborhood near you. Hep B United Philadelphia and the Hepatitis B Foundation and other partners will be holding screening events in downtown Philly.

Why is hepatitis testing necessary? Hepatitis B is largely asymptomatic – until it is too late, or caught with blood donation screening, or lab work.  There are clearly defined risk factors for hepatitis B, or groups that are at greater risk, but there are also less clearly defined risks, or just bad luck. Think about this list and ask yourself if you might want to think about getting tested. If you are young, or when you were younger, was your behavior ever wild or impulsive? Are you a little older and you’re still a little impulsive, or occasionally wild? Did you ever get drunk, or do drugs – even once, or perhaps “lose a night”? Did you have unprotected sex, or do you have multiple partners? If you are monogamous, are you sure your SO is equally monogamous? Does a friend or family member possibly have a known or even an unknown infection? Maybe they know, but they aren’t telling you. Do you like traveling the world?  Outside of the U.S. there are some really wonderful places that have an extremely high HBV prevalence. Roughly 40% of Americans have tattoos, or various piercings. Did you check out the shop- not for the artistry, but for infection control practices before you got your tatt? Ever borrowed a razor or nail clippers or other personal hygiene tools from someone else? How about the nail salon? Do enjoy a good pedicure? Things happen. People are different, they have different lifestyle choices. People make mistakes. They change. Things happen.

Sometimes I take calls from people that call HBF’s consult line. In the last couple of weeks I have spoken to a few consults that do not necessarily fit the standard at-risk profile for hepatitis B. One was an older, senior citizen, who is a regular blood donor, but just recently tested positive for hepatitis B during her most recent donation. Because her blood was being regularly screened, it appears clear that she has an acute case of hepatitis B. She can’t figure out how in the world it happened. She is not having sex, nor is she an injecting drug user. She lives in a small town, and does not have any family from other parts of the world where there is a high prevalence of HBV such as Asia, sub-Saharan Africa, parts of Central America. She is dumbfounded by this diagnosis.

Another consult was concerned about his wife who had also contracted an acute case of hepatitis B. They’re also a little older and in a monogamous, married relationship. After speaking with him, we determined she likely contracted her infection through her job. She works as a cleaning woman. Although most people are not symptomatic, this woman was quite symptomatic for HBV and required close monitoring. After discussing her case with her husband, I recommended that he also be tested, though he was sure he could not be infected since he had no symptoms. He called me last week to tell that he was in fact, acutely infected. He is stunned.

I am not here to judge anyone’s apparent risks or lack of risks.  I am only here to answer questions about their hepatitis B infection. Hepatitis B is not casually transmitted, but it is one-tenacious virus that can effectively be transmitted through infected blood and body fluids.

Fortunately, there is a safe and effective 3-shot vaccine series to protect us against hepatitis B. However, the vaccine doesn’t work if you are already infected.  Remember, HBV does not discriminate. B sure. B tested. If you are do not have HBV, then give yourself lifelong protection with the hepatitis B vaccine. If you find you do have hepatitis B, talk to your doctor about further testing. Don’t forget to check out those free, confidential hepatitis screenings this weekend!

May is Hepatitis Awareness Month

May is Hepatitis Awareness Month! What are you or your organization doing to help educate and raise HBV awareness in your community? Will you be holding viral hepatitis screening events, or other events?

The CDC has launched the “Know More Hepatitis Campaign”, which is an educational initiative striving to educate the public about viral hepatitis and encourage screening. They have designated May 19th as the first Hepatitis Testing Day. Organizations around the country will be providing viral hepatitis screening. Many will be focusing on at-risk populations. This is a great opportunity to get tested to be sure of your HBV or HCV status. Talk to the members of the organizations running the screening to learn more about these diseases, and what you can do to get involved.  Don’t forget to register your viral hepatitis screening event with the CDC, or check out screening events in your area.

The Hepatitis B Foundation and Hep B United Philadelphia have a couple of big activities planned for Hepatitis Awareness Month. On Friday, May 18th, we will be having our “B A Hero” Photo Flash mob event in Love Park in downtown Philadelphia. Everyone is excited about the event.  Some of the students have created a Hep B Rap video to get everyone psyched for the event! We also have some fabulous guests slated to make an appearance. If you’re downtown that day be sure to join us! If you’re nowhere near Philly, consider organizing your own Flash Mob! Its lots of fun and a great opportunity to raise HBV awareness with a splash!

Hep B United Philadelphia will also be offering free HBV screening at the Asian Festival on Saturday, May 19th from 12pm-3pm at the Pennsylvania Governor’s Asian Pacific Heritage Festival, at Franklin Square Park in Philly.  Folks that are screened will get a free Hepatitis B tote bag and will be entered into a raffle to win a free Kindle! Counseling will be available in Chinese, English and Korean. Educational literature will be available in Chinese Vietnamese, Korean, Lao, Khmer, and Indonesian. Look for Hep B United Philly’s tent in the health fair section, along with blood pressure, glucose and vision screening. It’s going to be a great event!

The Hepatitis B Foundation will be hosting the B Informed Parent Conference in downtown Philadelphia on Saturday, May 19th. This will be an incredible opportunity for parents of kids with hepatitis B to meet with leading pediatric experts in the field that address both medical issues and the personal challenges of parenting a child with hepatitis B. It is also a wonderful opportunity for parents to meet face-to-face with other families facing similar challenges.  Be sure to check out the detailed program agenda, and if you are a family with a child living with HBV, or know of a family living with HBV, please encourage them to attend this unique event. Pre-registration is required, though there is no charge for the event. And if that’s not enough, here are 10 reasons you need to get yourself to Philly for this event…

So let us know what you are up to for Hepatitis Awareness Month!  If you’re not already part of an organization, lend a hand and volunteer at a screening in your community. If you speak another language, volunteer your translation services, or hand out pamphlets. Make a commitment to start your own organization, or join an organization. Don’t feel like getting out there? Become an at-home HBV advocate and use social media channels such as twitter or Facebook and support viral hepatitis efforts right from home, or your phone. The opportunities are endless!

United and Strong…

I have the best job in the world. I get to walk all around Philadelphia, meet people, and talk with them to find win-win collaboration opportunities. Creativity and innovation are required at all times for adaptations to the ever-changing environment in a diverse and bustling city. My schedule is rarely the same from one week to another—productive late night meetings and well-attended weekend health fairs make me happy. I am never bored.

Community work on the local level is challenging, yet extremely rewarding. This is the level where the lack of resources can be felt most significantly. This is also the level where the fruit of our efforts are the most direct and observable. Being the program manager for Philadelphia’s local hepatitis B coalition, driving day-to-day progress to accomplish the coalition partners’ common goals, has caused me to place high value on partnership and collaboration. There is a Chinese idiom that says “three ignorant cobblers together exceed a Zhuge Liang”. Zhuge Liang was a genius war strategist during the Three Kingdom era at the turn of the 2nd Century. The idiom emphasizes the importance of collective wisdom. Since our community partners are smart and savvy, and could never be described as “ignorant cobblers”, our collective wisdom and effort have achieved great things and made significant impacts in the Philadelphia community—even with the limited resources available to us.

Imagine my excitement when the individual local grassroots hep B campaigns from around the U.S. came together and decided to form a national coalition—Hep B United (the Philadelphia campaign becomes Hep B United Philadelphia). Having a formal national coalition will help local campaigns to become more versatile and more effective, both collectively and individually. Having a national coalition means there will be a unified body of leaders that are connected to the local efforts. They will be able to work with federal and national partners without losing touch with the local campaigns. A unified national presence and identity will also strengthen the ongoing advocacy work to raise awareness among policy makers. Within the national coalition, resource sharing will become more efficient, preventing redundancy or duplication. The quality of our communication across the nation will also improve due to a stronger infrastructure. The local campaigns will enjoy elevated profile thanks to the national-local one-two punch of increased exposure. Ultimately, all of these benefits will help us better serve our communities.

The creation of this national coalition has been in the works for months. The Hepatitis B Foundation is one of the main leaders, and has been faithfully moving the progress along throughout the whole process. As of last week, the official logo for the coalition was voted on and approved. And in the upcoming weeks, each local campaign will gradually update their materials, online and printed, in alignment with the national campaign. While getting a new name is certainly a fresh new beginning, we continue to work with the same integrity and diligence that will always be our identity.

Hep B United. Together, we cannot fail.

Kuan-Lung Daniel Chen, MPH, CPH

Public Health Program Manager

Hepatitis B Foundation

Gateway to Care: A Hepatitis B Public Health Program in Haimen City, China

The Hepatitis B Foundation launched its Gateway to Care public health program on April 8, 2011. The program has been up and running ever since.  An introduction to the program, followed by a quarterly update by Dr. Gang Chen, seems important, so others are aware of this successful program.  The Haimen City project is led by Gang Chen, MD, PhD, and Director of China Programs for HBF. Dr. Chen was born in Haimen City and received his training from the Shanghai Medical School approximately 60 miles from Haimen City, in Shanghai. For the past 15 years, Dr. Chen has been traveling bi-annually to continue data collection for the Haimen City cohort study. He was the perfect candidate to lead the Gateway to Care public health campaign.

The Gateway to Care campaign, Haimen City, was made possible by a $400,000 educational grant from the Bristol-Myers Squibb Foundation. Haimen City was selected because it has one of the highest HBV and liver cancer rates in China. Over 10% of the population are hepatitis B carriers.

The goal of the Gateway to Care campaign is to educate and help raise HBV and liver cancer awareness among its one million residents.  The project has three primary goals focusing on raising public awareness, providing target group education and providing hepatitis B management for pregnant women. Ultimately the main goal of the campaign is to create a model program that can readily be adapted and duplicated in other cities throughout China, where the hepatitis B and liver cancer burden is also enormous.

Public health programs like the Haimen City, Gateway to Care campaign must be carefully created based on the culture and the population and the language. China is a large, diverse country. Materials must be developed that address the needs of the community and will be accepted. It’s not a speedy process, but one that must be slowly integrated into the fabric of the community. The goals of the program were emphasized through community events, giveaways, public displays, public screenings, and the education of local doctors, who are the community’s front line physicians. Because HBV is very effectively transmitted vertically from HBV infected mom to her baby at birth, an HBV management program was also put into place specifically for pregnant women, which also includes both a retrospective and a prospective study.

A project logo was created emphasizing the key message and creating a brand. Standard playing cards with 15 key messages pertaining to HBV transmission, prevention, testing and treatment were also printed on the cards making them both functional and educational. Pamphlets and billboards with more detailed information were created and displayed or distributed at community events along with the cards.  A bi-monthly health education publication featured important knowledge about hepatitis B was delivered to every household, or a total of 280,000 households, reaching the one million residents of the city. These are very effective modes of outreach in the Haimen City community.

Stay tuned for the next update from Dr. Chen on more detailed specifics of the Gateway to Care, public awareness part of the public health campaign.

Help Us Choose the Round 2 Winner of the “B A Hero” PSA Video Contest!

Round 2 of the “B A Hero” PSA Video Contest is over and there are two great PSA videos that have been created! View and cast your vote for your favorite. Both videos are awesome! Vote once, or better yet, vote once per day through March 30th!

We can’t post the videos directly, or you won’t be able to vote, so just click here, and you will be directed to the application that will allow you to view the videos and choose your favorite! Make sure you’re logged into your facebook account, and don’t forget to invite your friends!

Now that you know how cool the videos are, how about joining the fun and raising HBV awareness by creating your own “B A Hero” PSA video?  Round 3 is open and will close on April 13th! Join the fun. Here’s how…