Hep B Blog

Tag Archives: Public Health

Hepatitis B Advocacy, Living with Hepatitis B

Viral Hepatitis Action Alert!

*ACTION ALERT*

HAP – Hepatitis Appropriations Partnership

 Urge Your Members of Congress to Support Viral Hepatitis Funding

In Their Appropriations Programmatic Requests

 

 

With the passage of the continuing resolution (CR) for FY2013 at the FY2012 levels (before the sequester) and no Prevention and Public Health Fund allocations, we do not know the total, final funding level for FY2013 at the Centers for Disease Control and Prevention (CDC) Division of Viral Hepatitis (DVH) or the future of the $10 million they received in FY2012 for a testing initiative. The President’s FY2014 budget has not yet been released. We need your help in raising awareness among Members of Congress about the viral hepatitis epidemics and asking their support for increased funding for viral hepatitis activities at the federal level.  Viral hepatitis advocates are urging for a total funding at the Division of Viral Hepatitis of $35 million, an increase of $5.3 above the total FY2012 level.

In the next week and a half, all Senators and Representatives will write their “programmatic appropriations request letters,” which ask members of the Appropriations Subcommittees (who put together the federal funding legislation) to include funding for their priorities. The more Members of Congress that include a request for hepatitis funding in their letters, the greater the likelihood the Appropriators will include additional funding in FY2014.

As you know, viral hepatitis impacts over 5.3 million people nationwide. With a lack of a comprehensive surveillance system, these estimates are likely only the tip of the iceberg and 75% of those infected do not know their status. Even with these daunting figures, there are only $19.7 million in federal funding dedicated to fund viral hepatitis activities nationwide at the CDC in the CR for FY2013, before sequester.  Members of Congress need to know that viral hepatitis is a concern in their district, that their constituents are being affected and that this is an issue they need to care about. We need you to tell your story and ask your elected representatives to take action by April 12.

Additionally, the CDC released FY2012 Grant Funding Profiles by state, here. When you click on your state and “Generate Report,” your state’s viral hepatitis funding is included in the report.

Step-by-step instructions on what to do are below:

1.   Determine what Members of Congress to contact.  You should contact your personal Member of the House of Representatives and two Senators.  You should also contact other House Members in areas where your organization is located or provides services.  To determine who your Representative is please go to www.house.gov and type in your zip code(s); to determine who your Senators are go to www.senate.gov and select your state from the drop down menu.

2.   Call the Members’ Offices to get the name and correct spelling of their health staff person.  Email the staff using the draft email text below.  House staff emails are First.Last@mail.house.gov (john.smith@mail.house.gov) Senate staff emails are First_Last@Last name of Senator.Senate.gov (john_smith@doe.senate.gov)

Sample email:
Your Name
State and Zip code

Dear (Name of Health Staffer):

My name is ____________ and I live in City/State. I am writing to urge Representative/Senator________________ to include funding for viral hepatitis in his/her Fiscal Year 2012 programmatic appropriations request letter.  [Include brief details on the impact of viral hepatitis on yourself or describe your organization].

There are over 5.3 million Americans impacted by viral hepatitis but, in FY2012, the only dedicated federal funding stream provided a mere $29.7 million through CDC.  This is insufficient to provide the most basic public health services such as education, counseling, testing, or medical management for people living with or at risk of viral hepatitis.

I urge Representative/Senator ___________ to support a total funding level of $35 million for the Division of Viral Hepatitis in FY2014 to effectively combat these epidemics.  I will be following up with you in the near future to discuss this request.  In the meantime, feel free to contact me with questions.

Thank you again for consideration of my request.

Your Name

3.   Follow-up with the staff you have emailed with a phone call to confirm they received the request and to determine when they may have an answer from their bosses as to whether or not they will include a hepatitis funding request in their Appropriation programmatic request letter.  If asked, make it clear to the staff that this is a program request and NOT a project request (i.e. money for a district specific project like a bridge, hospital or university).  You may need to follow-up again around the time the staff says they will have an answer from their chain of command.

4.   If you need assistance or want to talk through the process please email or call Oscar Mairena at (202) 434-8058 or omairena@NASTAD.org. If the staff member requests “report language” or “program language,” please contact Oscar and he will provide that for you. Please also share positive responses with the Hepatitis Appropriations Partnership by contacting Oscar.

Oscar Mairena
Manager, Viral Hepatitis/Policy and Legislative Affairs
National Alliance of State & Territorial AIDS Directors (NASTAD)
444 North Capitol Street NW, Suite 339
Washington, DC  20001
Phone: (202) 434.8058      Fax: (202) 434.8092
omairena@NASTAD.org     www.NASTAD.org
“Bridging Science, Policy and Public Health”

 

 

 

 

Hepatitis B Advocacy, Hepatitis B Prevention, Liver Cancer, Living with Hepatitis B

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.

Hepatitis B Diagnosis & Monitoring, Liver Cancer, Living with Hepatitis B

Launch of New Patient-Focused Website at LiverCancerConnect.org

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A dedicated program of the Hepatitis B Foundation for patients and families 

The statistics are sobering. Liver cancer is the seventh most common cancer in the world, but the third leading cause of cancer-related deaths. Worldwide, more than 700,000 people are diagnosed with primary liver cancer each year, accounting for more than 600,000 deaths annually. Equally disturbing is the fact that while the incidence rates of most cancers have declined in recent years, the incidence rate for liver cancer is increasing.

But there is encouraging progress in the fight against liver cancer. Scientific research into new treatments is yielding promising results. And perhaps more significantly, the major causes of liver cancer— such as chronic hepatitis B or hepatitis C infections, and cirrhosis — are largely preventable. A safe and effective vaccine against hepatitis B has been available since 1986. In fact, this vaccine was named the world’s first “anti-cancer” vaccine, because it prevents chronic hepatitis B infection, the world’s leading cause of liver cancer. While no vaccine for hepatitis C currently exists, new drugs can eliminate the virus, thereby halting the progression to liver cancer. And cirrhosis can be avoided by preventing chronic hepatitis B and C infections, limiting alcohol intake, and preventing fatty liver disease associated with obesity.

Knowing that these risk factors are preventable makes it all the more important to identify people at risk for liver cancer, educate them about prevention and treatment options, and direct them to appropriate medical care.

To provide accurate, easy-to-understand information to people diagnosed with liver cancer, the Hepatitis B Foundation has created the first patient-focused website, www.LiverCancerConnect.org. The website aims to help people better understand how liver cancer is diagnosed and how it can be treated or prevented. In addition, wwwLiverCancerConnect.org includes a Drug Watch of potential new liver cancer therapies, an expanding directory of liver cancer specialists, and a clinical trials listing.

The Hepatitis B Foundation is also organizing a series of webinars in 2013 to educate the public about the link between liver cancer and its main risk factors, namely hepatitis B and C infections and cirrhosis caused by fatty liver disease. The webinars, presented by leading international experts in liver diseases, will explain what primary liver cancer is, the importance of liver cancer screening and surveillance, and the treatment options and clinical trials that are currently available. Additional information will be announced on both the Liver Cancer Connect website and HBF’s blog when it is available.

The Foundation invites you to use www.LiverCancerConnect.org to learn about liver cancer and its treatment options, and to locate liver cancer specialists and clinical trials. We welcome your feedback and suggestions at connect@livercancerconnect.org so that we may continue to build on this valuable resource for the global liver cancer community.

Liver Cancer Connect is available on Facebook and Twitter. Join LCC on Facebook at http://www.facebook.com/LiverCancerConnect and follow LCC on twitter with the handle @LiverCancerConn.

 

 

 

Hepatitis B Prevention

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

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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!

Living with Hepatitis B

Which is Worse Chronic Hepatitis B or C? What Do You Think?

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From HBF’s expert Guest Blogger, Dr. Thomas London…

If you ask doctors in the United States, or patients with liver disease, or the average person on the street, the answer that you usually get is that Hepatitis C is worse.  Hepatitis C has a bad reputation in the media and with the public. We, at the Hepatitis B Foundation, tend to think that hepatitis B is the worse disease, but until now we have not had any basis for that answer. Now we do.

Recently a group of investigators from Johns Hopkins University published a paper with the title “Comparative Risk of Liver-Related Mortality from Chronic Hepatitis B Versus Chronic Hepatitis C Virus Infection”.  The answer from this publication is that hepatitis B is more likely to cause liver related death than hepatitis C.  It is worth dwelling on how the authors came to this conclusion: unexpectedly, the AIDS epidemic triggered the studies, which made the conclusion possible.

Acquired immune deficiency disease (AIDS) was first reported in the United States in 1981. The disease appeared to be deadly, and it was thought-to-be confined to homosexual men. In fact, it was initially called Gay Related Immune Deficiency or GRID.  Although it was soon proven that this new immune deficiency disease was not limited to gay men, it is true that men who had sex with men (MSM) accounted for most of the early cases.  In the 1970’s there were several reports that MSM had a high incidence of hepatitis B.  For the initial clinical trial of the then new hepatitis B vaccine, MSM in New York City were selected as the study population because of their high risk for hepatitis B infection. In the trial about 27% of the unvaccinated population became infected with hepatitis B virus (HBV) within 18 months, whereas less than 3% of the men who received the vaccine became infected over the same time interval.  This result proved the efficacy of the vaccine.

Fast forward to 1984 before the virus causing AIDS was clearly identified, several researchers suggested that a variant of hepatitis B was the cause. A group of investigators proposed a prospective study of MSM who had been tested for hepatitis B and a newly reported anti-HIV antibody, but who did not have immune deficiency disease.  By following the men over time, the thought was that it would be possible to observe which infection – HIV or hepatitis B or a combination of both – led to AIDS.

MSM were recruited from 4 cities in the USA (Baltimore, Chicago, Pittsburgh, Los Angeles); thereafter called the Multicenter Cohort Study (MACS).  Over four time intervals from 1984 to 2002, 6972 MSM were enrolled.  The men were followed until 2010, on average for more than 8 years. Serum samples were collected every 6 months, frozen and stored.  Although the hepatitis C virus had not yet been identified in 1984, all the samples were later tested for HIV, HBV and hepatitis C virus (HCV).  All deaths were recorded as were all liver related deaths.

The results were surprising. Comparable numbers of men were infected with HBV and HCV, but MSM with chronic hepatitis B were twice as likely to die a liver related death as the men with chronic hepatitis C.  The statistical analyses were carefully done to account for the treatments of HCV, HBV, and HIV that were used during the course of the study.  Immunodeficiency further increased the risk of liver death in the men with hepatitis B over that in the men with chronic hepatitis C.

The study showed that in the two and a half decades after 1984, hepatitis B infection was more serious than hepatitis C. Now, in 2012, this difference is even greater. Chronic hepatitis C has become a curable disease.  Chronic hepatitis B is manageable, but not yet curable.  This means that hepatitis B, which was already a worse disease than hepatitis C before the new therapies for HCV, is now a much more important unsolved health problem.

– Dr. Tom London

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The Hepatitis B Foundation Mourns the Loss of Dr. R. Palmer Beasley

Dr. Palmer Beasley (center), with his wife Dr. Lu-Yu Hwang at his side, received the HBF's Distinguished Scientific Award from Dr. Timothy Block (left) and Nobel Laureate Dr. Baruch Blumberg, HBF co-founder (far right) in 2010.

The Hepatitis B Foundation mourns the loss of a great hepatitis B champion. Dr. R. Palmer Beasley. The Hepatitis B Foundation was proud to have honored Dr. Beasley with the Distinguished Scientist Award 2010, at HBF’s annual Crystal Ball. Dr. Beasley’s groundbreaking research discoveries in Taiwan included identifying mother-to-infant hepatitis B transmission, and the fatal link between hepatitis B and hepatocellular carcinoma (primary liver cancer). Additionally, Dr. Beasley’s initiation of a national hepatitis B immunization program has protected a generation of people in Taiwan against hepatitis B and liver cancer.

Dr. Timothy Block, President and Co-Founder of the Hepatitis B Foundation wrote: “Our cause has lost another great one with the passing of Palmer Beasley. He was passionate and visionary in working to advance hepatitis B awareness and research. His work with the HBV vaccine, particularly in Taiwan, is considered definitive and as having set the stage for saving millions of people. The HBF recognized him as our honoree in 2010, and for that, I am glad.”

The Washington Post obituary of Dr. Beasley, dated August 5th, presented a wonderful review of some of Dr. Beasley’s many accomplishments and touches on his unique personality. Please see the reprint below –

Adventurous, meticulous and intensely curious about the world and its people, Dr. R. Palmer Beasley, epidemiologist and infectious-disease expert, used those skills to discover the link between the hepatitis B virus and liver cancer — proof that a virus could cause a human cancer, and a finding that ultimately led to vaccinations that saved hundreds of thousands of lives.

Dr. Beasley, a former University of Washington faculty member and dean of the University of Texas School of Public Health, died Aug. 25 at his home in Houston. He was 76. His death, from pancreatic cancer, was confirmed by his wife Lu-Yu Hwang.

Measles, plague, HIV — they all intrigued Dr. Beasley, who had decided as a student at Harvard Medical School that he wanted to be an epidemiologist, studying infectious diseases. In the early 1970s, as a fellow at what later became the University of Washington School of Public Health, he jumped at the chance to go to Taiwan to research rubella (German measles). There, he became determined to delve into the mysteries of hepatitis B, which he considered the least understood unconquered virus of the time.

“He took an approach like Albert Schweitzer,” said Herbert DuPont, director of the Center for Infectious Diseases at the University of Texas. “He lived in the field, he worked with patients, with the people. He didn’t go back to Seattle and sit in an office at the University of Washington and contact people in Taiwan.”

J. Thomas Grayston, then Dr. Beasley’s supervisor at the University of Washington, recalls a bit of friction in that regard. “We talked to him about coming back, and he wasn’t going to do that,” he said.

Dr. Beasley arranged independent funding for his research project, married a co-researcher and settled down in Taiwan, where he would spend the next 14 years. But he kept his affiliation with the University of Washington, which lasted nearly two decades.

With exacting attention to detail, Dr. Beasley and his colleagues designed long-term studies that would follow more than 22,000 Taiwanese government workers for decades, in the process proving that the hepatitis B virus is a main cause of liver cancer — at the time a controversial theory — and that childbirth can transmit the virus from a mother to her baby, who becomes a carrier and much more likely to develop liver cancer.

Dr. Beasley found that a shot of immune globulin at birth protected babies; later, his work helped push the World Health Organization to include the hepatitis B vaccine in routine vaccination programs.

For his work, Dr. Beasley was awarded the King Faisal International Prize in Medicine, the Charles S. Mott Prize, the Maxwell Finland Award for Scientific Achievement and the 2010 Distinguished Scientist Award by the Hepatitis B Foundation.

“There are at least a million people alive today who otherwise would not be here if not for Dr. Beasley’s pioneering research in hepatitis B,” Nobel laureate Baruch Blumberg said at the award ceremony, according to the foundation.

Robert Palmer Beasley was born in Glendale, Calif. He received a degree in philosophy from Dartmouth College in 1958, a medical degree from Harvard University in 1962 and a master’s degree in preventive medicine from the University of Washington in 1969.

Early in his career, he worked as an epidemic investigator for what is now the Centers for Disease Control and Prevention in Atlanta from 1963 to 1965, including an assignment to find a sample of plague in Bolivia.

Riding in trucks and on burros, he and his colleague James Gale tracked down plague in a tiny village on the east side of the Andes, said Gale, now an emeritus professor of epidemiology at the University of Washington. Because the disease had killed nearly all those in the village, they had to exhume a body, cut off a finger and get it back to the capital city, where the material containing the plague was injected into a guinea pig, which promptly died.

Assured that the pathogen was still viable, the two doctors packed it up in dry ice for shipment to a secure lab in Maryland.

From 1987 to 2005, Dr. Beasley was dean of the University of Texas School of Public Health.

His first marriage, to Sonia Garon, ended in divorce. Survivors include his wife of 32 years, Dr. Lu-Yu Hwang of Houston, an epidemiologist who collaborated with him on his research; two children from his first marriage, Monica Payson of Seattle and Fletcher Beasley of Los Angeles; a daughter from his second marriage, Bernice Hwang Beasley of Seattle; a brother; and two grandchildren.

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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.

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

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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.

 

 

Hepatitis B Advocacy, Hepatitis B Prevention

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!

Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention, Living with Hepatitis B

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!

Baruch S. Blumberg Institute