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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!

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.

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”

 

Love Safely This Valentine’s Day

Please be sure to love safely this Valentine’s Day.  Are you living with HBV or hoping to avoid living with HBV? HBV is a vaccine preventable disease that is effectively transmitted sexually. If you are not infected with HBV, why not get vaccinated and protect yourself for life? The HBV vaccine is a safe and effective, 3 shot series. If you think you might be in a high risk group for HBV, talk to your doctor about first being screened for HBV before being vaccinated.

If you already have HBV, the vaccine won’t protect you. You need to talk to your doctor about your HBV status and whether or not you would benefit from treatment at this time (Not everyone needs treatment, but you need blood work interpreted by an HBV knowledgeable doctor to be sure).

Show the love by protecting yourself and your sexual partners by wearing a condom. They protect the mouth, vagina or rectum from infected semen if used consistently and correctly.  Keep in mind that the riskiest sexual activity is unprotected receptive anal intercourse. This is because the lining of the rectum is very thin and more likely to bleed leading to the possibility of infection with blood borne pathogens like HBV, HCV and HIV, along with other sexually transmitted diseases. Receptive vaginal intercourse is the next highest risk. Although the lining of the vagina is stronger than the rectum, inflammation, infection, or microscopic scrapes make the vagina vulnerable to unprotected intercourse. The likelihood of blood borne pathogen transmission with oral sex is least risky, but that is because the risk of blood contact is much lower. However, any kind of intimate sharing of bodily fluids presents some degree of risk of transmitting blood borne pathogens like HBV, HCV and HIV, and may effectively transmit other sexually transmitted diseases.

It’s important if you’re living with HBV, not living with HBV, or not quite sure of your infectious disease status. If you are living with HBV, properly wearing a condom keeps you safe from becoming co-infected with another infectious disease. No one wants a co-infection.  It complicated and dangerous for your health.  If you do not have HBV, then avoid getting an infection by you or your partner wearing a condom. HBV is vaccine preventable, but HCV, HIV and other STDs are not vaccine preventable. Considering the health and safety of yourself and your sexual partners is paramount. You may not know what they have, and they may not know what you have. Why take the risk? Love safely, get vaccinated against HBV, and wear a condom consistently and correctly. “Share affection, not infection”.

Considering the Transmission of HBV Through Tattooing or Piercing

This month’s Clinical Infectious Diseases evaluated the transmission of HCV through tattooing and piercing. It is important to note that HBV is also of great concern when considering a tattoo or piercing. Unless you are vaccinated against hepatitis B, you are at risk for HBV if you are tattooed or pierced under unsterile conditions. The net-net is if you have a tattoo or piercing in a professional parlor – one that follows infection control practices and uses single-use items whenever possible and sterilizes re-used equipment using ultrasonic cleaning and sterilization with an autoclave , there does not appear to be an increased risk, though additional study is warranted. However, tattoos or piercings in prisons, or other settings that are not performed under sterile conditions are a serious danger.

The process of tattooing entails repeated injections of tiny drops of ink. That’s thousands of tiny needle sticks per minute, and a very effective transmission route for blood borne pathogens like HBV, HCV and HIV. This does not mean getting a tattoo will expose you to infectious disease, but if you choose a tattoo parlor that is not well regulated and safely follows all infection control practices, then you greatly increase your risk of infection.

Here’s the problem with tattoo parlors in the United States. They are not carefully or consistently regulated. There are no federal regulations. For the most part they are state regulated, with each state having its own rules and regulations.  Regulated states require that tattoo parlors have permits, and be inspected. Who inspects the parlor? – Sometimes it’s the State Department of Health, and sometimes it’s the local health department, so the inspections vary. There are some states with local regulations within the state, and even a few states with NO regulations. That is worrisome and dangerous. What are the rules and regulations for your state on this unofficial list? (Please read the site disclaimer) Do the research on the rules in regulations in your state, or city before looking for a tattoo parlor.

What does this mean if you’re considering a tattoo? Your tattoo is a personal decision that will live with you for the rest of your life. You don’t want to contract an infectious disease that may also live with you for the rest of your life and potentially threatens your life.  Shop for a clean, parlor that treats each tattoo like a mini, out-patient procedure – with all infection control practices followed. You want a tattoo parlor that uses single-use needles, ink, ink cups, and gloves. You want to see these tools come out of their sterile packaging –right in front of your eyes. You want a tattoo parlor with a functioning, inspected autoclave so that re-usable tools such as tattoo machines and needle bars can be properly sterilized. You want a tattoo parlor that is clean and an artist that washes his hands and wears gloves. If the shop is dirty, keep looking.  Speak up and ask the artist questions about his shop and his infection control practices. Don’t forget to ask to see the autoclave. If anything makes you wary about the visit, look else-where.

 

Create, Submit, & Win The B A Hero PSA Video Contest! Help Raise HBV Awareness!

Hep B Free Philadelphia “B A Hero” PSA Video Contest 2012

Channel your creativity and skills for a good cause and win prizes!

Raise HBV awareness!

 

Hep B Free Philadelphia and Hepatitis B Foundation invite you to create a 30-second Public Service Announcement (PSA) to raise awareness about hepatitis B. Finalists will receive prize money and the winner’s PSA will be shown at Hep B Free Philadelphia’s annual media event as well as ** drum rolls** the 2012 Philadelphia Asian American Film Festival! Thousands will get to see your creative brainchild!

Hepatitis B is a serious infection that affects about 2 million people in the United States. About 1 in 10 Asian Americans and Pacific Islanders are chronically infected—with African immigrants approaching a similar ratio as well. About 1 in 4 of the chronically infected individuals will die of liver cancer or cirrhosis.

Many infected individuals are not aware of their status because hepatitis B doesn’t usually produce symptoms for decades, and when the symptoms start showing it is often too late for treatment—it is a silent killer!

Help us raise awareness by entering the “B A Hero” PSA Video Contest and submitting a PSA made by you! Videos should highlight hepatitis B and include the “B A Hero” theme.

5 Easy Steps:

1. Make a 30-second video to raise awareness and B a hero
2. Check the fact sheet below to make sure all your HBV information is correct
3. Submit the PSA through Facebook
4. Get all your friends to vote for your PSA
5. Win prizes and B famous!

Submission deadlines:

Round 1 – February 17

Round 2 – March 16

Round 3 – April 13

Register NOW at Hep B Free Philadelphia’s Facebook Page!!

Submissions can also be emailed toPSAContest@hepb.org.

For the official contest guidelines, please click here

For the hepatitis B fact sheet, please click here

Questions? Please contact Hep B Free Philadelphia program manager Daniel Chen at Daniel.chen@hepb.org

Three finalists will win $100 each!

One Grand Prize winner will win an additional $150
AND have their video shown at the 2012 Philadelphia Asian American Film Festival!

B a hero! Make a PSA Video and raise HBV awareness!

There are some excellent HBV PSA videos on YouTube. Here’s an example of a great one, but feel free to visit Hep B Free Philadelphia’s Facebook Page and scroll down for more examples!

Join the Fun! We’d Love Your Help!

There’s a contest going on and we’d love your help! Facebook is having a little competition to see who can get the most “likes” on their facebook page.  The Hepatitis B Foundation wants to help jump-start Hep B Free Philadelphia’s Facebook page, and help them win “facebook Ad cash” in the process.  What will Hep B Free Philly do with those Facebook  Ad dollars? Well, Hep B Free Philly will use those Ad dollars to possibly raise donations, but perhaps more importantly, it’s another way to use one of our favorite social media channels to help promote hepatitis B awareness.

Here’s what you need to do….

  • Visit Hep B Free Philadelphia’s Facebook page and like their page. The like button is at the top of the page.
  • That’s it!  If you really want to help Hep B Free Philly win, ask your friends or family to “like” the page.  It’s that simple!
  • Use the little “Facebook share button” at the top of this blog to share it with your facebook friends!
  • This little competition ends March 31, 2012, so please don’t delay!

While you’re there, feel free to check out the page and see what Hep B Free Philadelphia’s community-owned public health campaign is doing in Philadelphia to educate and raise public awareness, along with increasing testing and vaccination in the fight against hepatitis B and liver cancer.  You can also check out Hep B Free Philly’s website! They’ve got a lot of great activities going on!

Finally, the Hepatitis B Foundation also joined the competition. At this time our facebook page has 684 “likes” of our page! We’d like to win some of those free Facebook Ad dollars and see how we can use them to  raise HBV global awareness.  So, if you haven’t already, be sure to “like” HBF’s Facebook page!

Thanks!