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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!

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…

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

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

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.

Update on the Adoption of a Waiting Child with Hepatitis B

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.

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…

 

 

 

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!

 

Simple Impediments to Hepatitis B and C Screening

There was an article in the Baltimore Sun a couple of weeks ago that discussed screening for hepatitis B and C.  Approximately 600 million people around the world and five million people in the U.S. are infected with viral hepatitis. According to the Annals of internal Medicine, the CDC reports that there are more deaths attributed to HCV than HIV in the U.S.

The Baltimore doctor believes that ideally, everyone should be tested for hepatitis B and C. Although he is not alone in his thinking, there are many physicians that may not be as aware of the need for screening, and even those in high risk groups may be inadvertently missed. And should a physician decide to screen, there is no ICD code, or International Classification of Diseases code for high-risk based HCV or HBV screening. Insurance companies use these codes to determine if services and payment is warranted. An insurance company may actually deny payment for HBV or HCV testing if they do not believe there is a valid reason for screening.  For example, elevated ALT levels might prompt a physician to “legitimately” screen for viral hepatitis. There is also no problem with ICD codes if you are already diagnosed with HBV or HCV, but you can’t readily be screened using a convenient code. Viral hepatitis does not discriminate. There are certainly high risk groups where HBV or HCV may be more prevalent, but that should not discourage a doctor from screening a patient if she feels it is warranted.

How might a doctor get around a lack of adequate diagnostic codes? We asked a physician who cares for Asian-Americans. This group is at particular risk for HBV infection and should be screened whether they have elevated ALTs or not. He circumvents the lack of an official ICD code with a work-around. He uses the “CMS code V15.85 – Contact with and (suspected) exposure to potentially hazardous body fluids”. This works, but some physicians may not be as comfortable as others with this work-around. Sadly, this likely equates to fewer across-the board screenings for hepatitis B and C.

New HCV testing recommendations are to be released sometime this year by the CDC, and the US Preventive Services Task Force will weigh in on the HCV screening debate as well. Thus, there might be an ICD code for routine HCV screening code available in the near future. Despite established HBV screening guidelines, there are currently no ICD codes for routine HBV screening and to my knowledge, none are to be proposed. Would more patients be routinely screened for HBV if the process were more straight forward? Probably. It is unfortunate that an important screening may be impeded by the lack of a simple diagnostic code. Naturally this is not the only problem, but it is one that should be easy to resolve.

If you think you are at risk for HBV, or wish to be screened for HBV, please tell your doctor that you want to be sure about your HBV status. If you insist, I’m sure he will comply with your wishes and work around any issues regarding inadequate diagnostic screening codes for hepatitis B. Speak up and be your own advocate!

Action Alert! Urge Members of Congress to Include Viral Hepatitis Funding in Programmatic Requests

If you read Hepbtalk’s blog last week summarizing the Viral Hepatitis Policy Summit, you know that it will take efforts from all advocacy organizations and people like YOU telling your story and asking that money be dedicated to viral hepatitis. Please get involved. We need YOUR help!

 

On February 13, 2012, President Obama kicked off the Fiscal Year 2013 appropriations process with the release of his budget proposal.  The President’s FY2013 budget flat funds the Centers for Disease Control and Prevention (CDC) Division of Viral Hepatitis (DVH) at the total funding level of FY2012 – including the $10 million from the Prevention and Public Health Fund.  We need your help in raising awareness among Members of Congress about viral hepatitis and asking their support for increased funding for viral hepatitis activities at the federal level.  Viral hepatitis advocates are urging for protection of the President’s request and an increase to $59.8 million for DVH, which is $30.1 million more than the current funding level of $29.7 million.

In the next 2-3 weeks, 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 FY2013.

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 $29.7 million in federal funding dedicated to fund viral hepatitis activities nationwide at the CDC.  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 March 20.

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 the only dedicated federal funding stream provides a mere $29.8 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 the President’s budget request of $29.8 million for FY2013 and increase the request to a total of $59.8 million for the Division of Viral Hepatitis 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

  1. 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.
  2. 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

Senior Associate, 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”