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.
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.
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….
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!
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! “
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.
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.
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…
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!
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!
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:
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.
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.
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.
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.
Senior Associate, Viral Hepatitis/Policy and Legislative Affairs
National Alliance of State & Territorial AIDS Directors (NASTAD)
Earlier this week, I attended the 2012 Viral Hepatitis Policy Summit held in Washington D.C. The audience at the summit is viral hepatitis advocates for both hepatitis B and C. With the recent data on deaths from HCV surpassing those from HIV, and with an arsenal of new, effective drugs, HCV is clearly in the forefront of discussions at this time. Since my personal experience is HBVpatient oriented, I always struggle with keeping up with the details of the meetings, but I suspect most people reading this blog are in the same place, so I’ll try to make the take home message as simple as possible.
The first day was held at NASTAD with visits from Dr. John Ward of the CDC, Division of Viral Hepatitis, and from Dr. Ron Valdiserri and Corinna Dan of the Health and Human Services (HSS) Office of the Assistant Secretary for Health, Infectious Diseases. Everyone is anxiously awaiting the release of the CDCs updated hepatitis C screening recommendations. They will be coming out later than expected, and that is unfortunate because it is hoped they will be released in time to help drive the guidelines written by (US Preventive Services Task Force)USPSTF, which helps determine what procedures will ultimately be covered by Medicare (and paid for by private insurance companies as well.) As of now, it doesn’t look like the USPSTF guidelines will include HCV testing for high-risk individuals, so it is hoped that the CDC recommendations will counter these guidelines to help improve future HCV screening rates in the U.S. This potential time bomb was a source of conflict throughout the entire two days of the summit.
The other hot button was the $10million that was allotted to the Division of Viral Hepatitis to carry out all tasks viral hepatitis oriented. I’m no accountant, but there’s a lot of work to be done and $10M is not that much money in the scheme of things. How will this money best be put to use – collecting surveillance data, running screening programs, linkage to care for those who test positive, HBV vaccinations…the list goes on. And the money must be carefully monitored and be associated with a successful program if we are to warrant additional future funding. One message was made clear – advocate groups had best collaborate and be very creative in order to make things happen on the viral hepatitis front. I believe this is true, but it’s hard to make things happen without money to build the infrastructure or put these programs into place.
The second day was held at the Rayburn building, which is one of the Congressional office buildings. There was a full day of presentations, starting with visits from some of viral hepatitis’s champions in Congress including Congressman Honda (CA), Congressman Dent (PA) and Congresswoman Judy Chu (CA). There are other champions in Congress, but we need more if we are to make a dent in the viral hepatitis problems. That’s where the work of the advocates and those living with hepatitis come into play. You need to get involved and make your state Representative understand how serious viral hepatitis is in his or her district.
There were various panels throughout the day including a panel of staff from some of the viral hepatitis Congressional champions, guests from the Office of Management and Budget (OMB), and an informal discussion with DC based policy experts on working with the Administration and Congress. Then there were the discussions of fiscal year 2013, appropriations discussions, a discussion of viral hepatitis testing and health care reform and how it applies to viral hepatitis. That’s a mouth full. I spent a lot of the day trying to figure out what money was really available, where it came from, and which pots of money were in jeopardy of disappearing. It’s complicated, and I’m not going to pretend to really understand it. There’s the President’s budget and what he recommends. Budgets need to be passed by the House and the Senate, which is very tough these days with the political and fiscal climate on the Hill.
I don’t believe it’s necessary for the average American living with viral hepatitis to talk-the-talk and track the pots of money that may or may not ever be dedicated to viral hepatitis. Your Congress person is under a lot of pressure to make fiscal decisions based on the needs of his or her constituents. We were told they literally enter their top picks into the computer on where they think money should be spent. It is our job to see that viral hepatitis is on the list. One of the staff members noted how important a number of small splashes are compared to a big splash that may occur with large, media driven events. He gave a take home message that even I can understand. As viral hepatitis advocates or patients living with hepatitis, if just one person from each district were to contact his Representative and drive home the importance of funding for viral hepatitis, it would make a difference. We need to put viral hepatitis on the radar of our Representatives and our Senators. Few politicians are knowledgeable about viral hepatitis. Individual efforts would go a long way towards educating and raising awareness of the people that are representing us in office. Make the story personal. Let them know the cost of treatment is nothing compared to the cost and burden of transplantation. Make viral hepatitis part of their vocabulary and put a face on it.
The final message I got, which is more patient oriented, was based on a side discussion about what happens after testing guidelines are established. For example, there are testing guidelines for HBV, and yet even those in high risk groups may not be getting tested, nor are they vaccinated. One physician recommended that as advocates, we need to stress the importance of these guidelines to the professional associations to which our doctors belong. That is the job of advocacy organizations like the Hepatitis B Foundation and others. However, ask around and see if you, or friends and loved ones are being screened for diseases such as HBV, HIV or HCV. Does your doctor ask you if you are foreign born, or if you travel frequently to developing nations? Does he spend enough time with you to know about your lifestyle and whether it might put you at risk? Most likely, your doctor does not know if you are willingly or unwillingly involved in activities that may increase your risk for HBV. It’s yet another reason why it’s so important for patients to get involved in their own care and offer up information that might make your doctor consider preventive screening. And if all else fails, ask your doctor about being screened for HBV, HCV or HIV if you believe you are at risk.