Hep B Blog
Hepatitis B Advocacy, Living with Hepatitis B

Personal Reflection on the May 17th Congressional Briefing: Combating Viral Hepatitis

 

 

On May 17, I attended the Congressional Briefing on Chronic Hepatitis and Liver Cancer, hosted by our unwavering champions, Congressmen Michael Honda (CA) and Charlie Dent (PA).The room was filled with representatives from the advocacy community, elected officials and government agencies, and industry.

The event was scheduled to promote the first National Hepatitis Testing Day (May 19th) and to acknowledge the one-year anniversary of the HHS Action Plan for the Prevention and Treatment of Viral Hepatitis. Congressman Honda also wanted to recognize his colleagues who have joined the new Congressional Hepatitis Caucus and also attended today’s briefing:  Judy Chu (D-CA), Bill Cassidy (LA), Hank Johnson (GA), Barbara Lee (CA) and Donna Christensen(Virgin Islands). Although Congressman Dent was unable to attend the event, he sent his full support of both the issue and the event.

We now see more Congressional champions supporting the Hepatitis initiative,  and in many cases sharing their own personal stories on how this disease has impacted their lives. For example, Congressman Johnson spoke about his personal experience in combating hepatitis C and the need for more action to increase testing and access to care.

The HHS Assistant Secretary for Health Dr. Howard Koh was one of the most charismatic persons in the room, giving credit to both the Congressional Champions and the public health heroes.

Dr. Koh also specifically mentioned that the Hepatitis B Foundation, a Pennsylvania non-profit organization, has done incredible work developing a strong system to ensure that chronic hepatitis B patients identified during community screenings have access to care. Dr. Koh also commended his agency colleagues at HHS –  Dr. Ron Valdessari, Ms. Corrina Dan, and Ms. Sophie Tan for their tireless work to address this public health crisis.

It is all of these resources coming together and the strong interagency collaboration that has helped bring about the first National Hepatitis Testing Day in the U.S.. Dr. Koh also mentioned that the updated hepatitis C screening guidelines would soon be available.

Dr. John Ward (DVH/CDC)  spoke about the power of the  CDC’s “Know More Hepatitis“campaign and how interagency collaboration are positive steps toward getting the epidemic under control.  Dr. Ward also mentioned the successful Hepatitis B models in Philadelphia and Seattle, and noted that there will be more resources available in the future.

The CDC views viral hepatitis as a national crisis and Dr. Ward encouraged everyone to access the CDC website. In particular he mentioned a new CDC risk assessment tool that will help prompt testing discussions between high risk individuals and their doctor.

Mr. Bob Lubran (SAMSHSA) who oversees 1,250 opiod treatment centers across the country spoke about the challenge of treating Hepatitis C patients in these settings. He called for an extensive education program not only for patients, but for supporting health-care personnel.  There is also a significant challenge involved in managing viral hepatitis hepatitis patients and ensuring they remain on their treatment.  Mr. Lubran stated that almost 80% of the folks in these treatment centers are infected with hepatitis C.

The last speaker of the morning was Daniel Raymond, current chair of the National Viral Hepatitis Roundtable (NVHR) and representative of over 200 member organizations working at the grassroots level to promote community education and screening.  In his remarks he noted that there have been some successful programs, and that we are seeing many patients identified and getting care,but there is certainly more work to be done. We are not winning when it comes to effectively screening those at-risk groups such as pregnant women, AAPI communities, and HIV-infected MSM for hepatitis B, and subsequently vaccinating those individuals that would benefit. We are also missing an opportunity to screen for hepatitis C and potentially treating and curing identified patients. There is a solid plan in place, but we still have a long way to go.

Molli Conti
Director, Public Policy & Affairs
Hepatitis B Foundation

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!

Uncategorized

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!

Hepatitis B Diagnosis & Monitoring, Living with Hepatitis B

Hep B Parents: 10 Reasons You Should Get Yourself to Philly

Attention parents of children living with Hepatitis B. Please join the Hepatitis B Foundation for it’s “2012 B Informed Parent Conference“, Saturday May 19th in Philadelphia. It’s going to be an incredible program filled with expert, pediatric guest speakers. It’s also a wonderful opportunity for parents to meet face-to-face to talk about raising kids with HBV.  Think about it, clear your schedule, register, and join us for the day. And if that isn’t enough, here are 10 Reasons You Should Get Yourself to Philly, expressed by Eileen, a good friend of HBF…

1. The “B Informed” Conference for parents of children with Hepatitis B happens just once a year. You do not want to miss this.

2. You will get answers. No matter where your child is on the spectrum, I know you’ve got questions. You’re going to get those questions answered. This isn’t a doctor’s appointment, there isn’t a waiting room full of patients, the doctor’s hand isn’t already on the doorknob. Ask all the questions you want to ask and ask until the lightbulb turns on and you get it. You’ll go home a more confident, better informed advocate for your child.

Read more…

Hepatitis B Advocacy

United and Strong…

6 Comments

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

Uncategorized

Purchase a Raffle ticket to Benefit the Hepatitis B Foundation and WIN a 7-Day Cruise for Two!

1 Comment

Raffle to Benefit the Hepatitis B Foundation

Friday, April 27th at 6:30 pm the Hepatitis B Foundation  is hosting it’s signature fund raising event of the year at the PineCrest Country Club in Landsdale, Pennsylvania. It will be a wonderful evening filled with fine dining, dancing, and a silent and live auction. On that evening HBF is proud to honor Dr. Howard Koh, the Assistant Secretary for the United Sates Health and Human Services (HHS), with the inaugural Baruch S. Blumberg Prize for his leadership in creating the first HHS Action Plan for Viral Hepatitis.

We know not everyone can make it to Landsdale on the evening of April 27th, but we do hope you will show your support and purchase a raffle ticket to benefit the Hepatitis B Foundation and possibly WIN a 7 day, 5-star cruise for 2! The good news is that you do not need to be present to win. Check out the details about the cruise….

7 DAY CRUISE FOR TWO!!

Holland America Line Logo

Choice of Destination:

Alaska, the Caribbean, Mexico

or Canada/New England

$100 per Raffle Ticket

Valued up to $3,300!!

Drawing at CRYSTAL BALL, April 27, 2012

(Winner does not need to be present)

 

 

When you step aboard one of the five-star ships of Holland America Line, you will experience a voyage unlike any other. You can choose any cruise for two (same stateroom) up to seven days in length (based on minimum ocean view stateroom) to Alaska, the Caribbean, Mexico or Canada/New England.

Your journey will include extraordinary dining, spacious staterooms, elegant surroundings and days filled with new discoveries and gracious pampering by an award-wining crew. You can choose to partake in as many – or as few – activities as you wish, from the renowned Greenhouse Spa and Salon, to cooking demonstrations and wine tasting in the Culinary Arts Center, and much more. Or simply relax and enjoy the spectacular scenery from the beautiful wrap-around teak deck.

The certificate has no expiration date. The certificate may be applied to other cabin categories or cruise trades at an additional cost. This cruise! certificate is valued up to $3,300!

Travel to and from arrival ports, taxes, onboard charges, shore excursions and hotel services are not included. Click here for important cruise information.

Living with Hepatitis B

Update on the Adoption of a Waiting Child with Hepatitis B

3 Comments

We are very pleased to share a very special update on the status of William, a waiting child  living with chronic hepatitis B, who captured the hearts of the Hepatitis B Foundation staff. This update comes from Nathalie, Adoption Advocacy Director at An Orphan’s Wish…

“I am thrilled to report that William is in the process of being adopted by his forever family, where he will join his new, wonderful Mom and Dad and his two-new sisters. William’s youngest sister is also adopted from China. When William’s mother contacted An Orphan’s Wish to inquire about him, she had some questions about the implications of daily living with an HBV positive child, and how it affects the child’s life and the life of other family members. The information the Hepatitis B Foundation provided was extremely helpful in answering the family’s questions, and in providing them with enough knowledge to ask informed questions of health care providers. Information provided by the Hepatitis B Foundation allowed this prospective family to have peace of mind about William’s hepatitis B diagnosis, realizing that it is a manageable chronic condition. This enabled them to focus on the specifics of William rather than his HBV. William’s family very quickly responded with more questions for me about his personality, his likes and his dislikes, his dreams and his hopes, rather than focusing on his HBV. They were adopting a son they were thrilled to parent, and thought little of his HBV diagnosis.

As an adoption advocate, the information provided by the Hepatitis B Foundation has been invaluable in educating me about hepatitis B, and HBV positive children. I feel that I have a much better understanding of this chronic condition, and I am in a much better position to answer questions from families considering the adoption of an HBV positive child. I will continue to refer families inquiring about hepatitis B positive children to the Hepatitis B Foundation. They are a wonderful resource! “

Nathalie

The Hepatitis B Foundation wishes only the best for William, his new family, adoption advocates like Nathalie, and all of the children out there who are waiting, living with HBV.

Uncategorized

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

1 Comment

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.

Uncategorized

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…

 

 

 

Hepatitis B Advocacy, Hepatitis B Prevention

Reflection on Liver Capitol Hill Day Visits

 

 

Wednesday I participated in the Liver Capitol Hill Day Visits sponsored by the American Association for the Study of Liver Diseases (AASLD). I wanted to write this reflection to demystify Hill visits for those that are reluctant to participate or feel that they are not particularly political or up on on the legislative issues. I would certainly put myself in that category, but I am an HBV advocate, and I recognize that there are simple ways I can participate that might make a difference for those living with HBV in my state and in our country.

Liver Capitol Hill Day was a well organized event with specific “talking points” and “asks”, and the logistics were very well coordinated, but in general the individual visits themselves were the same as others where I have participated. If you are in D.C. and wish to visit with your Representative or Senator’s office, I would highly encourage it. They want and need to hear from their constituents, and if you have a personal story to tell, that’s even better.

Call your Representative’s or Senator’s office and ask to make an appointment with the staff member that handles health issues. If you are not sure who your Representative is, merely type in your zip code at www.house.gov. To determine who your Senators are go to www.senate.gov and select your state from the drop down member. Call them and set up an appointment. If you are looking for specific talking points, you could consider contacting an organization like the Hepatitis B Foundation, AASLD or other viral hepatitis organizations that might be able to provide you with some ideas for your visit.

It is very unlikely you will even catch a glimpse of your Representative or Senator, so don’t worry about feeling nervous. The Staffers are accustomed to constituents coming in with their requests. There is nothing formal about the meeting and often you are crammed in a closet-sized room with a desk and a chair, or meeting wherever there is space.  This is definitely not a formal presentation and time is tight. Plan on the whole visit taking 20 minutes or less.  No one will be offended if your piece isn’t well-polished, or if you pull out a paper with your talking points.  I always show a picture of my daughter in the hospital, after one of her liver biopsies.  It really personalizes the visit.

This is a great opportunity to tell your personal hepatitis B story. It puts a face on the infection. Often, your staffer will have little or no knowledge of viral hepatitis, but from that moment on, your face and your story will be what he remembers.

I am terrible with numbers, but because this is a time of tight budgets, I always drive home the much lower cost for prevention, screening and treatment versus caring for a patient with advanced liver disease or liver cancer, or a patient in need of a liver transplant. There are the obvious medical costs, and likely the inability for the person to continue working.  And of course there are the emotional aspects. In my case, my daughter was fortunate to have treatment and respond at a young age. It was expensive at the time, but nothing compared to costs associated had we been unaware of her HBV status, and her condition had progressed over time to a much more unfavorable outcome.

So consider meeting with your Representative or Senator while you are in D.C., or even at their local, home office. If you’re still not comfortable with the idea of meeting face-to-face with the health staffer, then please consider calling or emailing your Representative’s and your Senator’s office and telling them your personal story living with hepatitis B. It only takes a few minutes, and last week’s blog will tell you exactly what you need to do. We need your help!

 

Baruch S. Blumberg Institute