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Living with Hepatitis B

Join CDC and HBF for a World Hepatitis Day Twitter Chat

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Are you planning to join us for the World Hepatitis Day Twitter Chat on Friday, July 27th? The CDC and HBF will be hosting a Twitter Chat at 2 pm EDT.  Are you thinking, “What… me??  I don’t know how to use twitter!!” Well, get-on- board with twitter before July 27th and join us!

What is twitter?  Twitter allows you to stay connected or exchange short messages called tweets with friends, family, co-workers, organizations and partners, and the world at large. You can tweet from your computer, your laptop, i-pad or smartphone. You can use it to update your status on the go, or in HBF’s case, use it to educate and raise hepatitis B awareness.  We also use it to send out current or new information on hepatitis B and to make our resources available to others.  If you are a hepatitis B advocate, twitter is a great outlet to get your message out there.

What is a handle? Your twitter username is your handle. For example HBF’s twitter handle is @HepBFoundation. Handles are preceded with a @symbol. You can find us at www.twitter.com/HepBFoundation.

What is a tweet? A tweet is basically a short message or status that you post to twitter. You can compose a tweet by clicking on the blue compose button in the top right corner, or from the “Compose New Tweet” box (top left after you login) Tweets are kept at 140 characters or less. If you make your tweets about 10 characters shorter, you’ll leave room for others to easily retweet your messages.  Don’t worry. Twitter does the counting for you.

Your message can be just that – a message: “2 billion people in the world have been infected with #hepatitis B”, or you can add a reference to the source such as HBF’s website where you can find this quote  A URL shortener will be invoked to take that long URLs like  http://www.hepb.org/hepb/statistics.htm  and turn it into: http://ow.ly/ciWvu

What is a retweet? A retweet or RT is when you repost someone else’s tweet so it will be shared with your followers. It lets everyone know you like that message and lets you spread the word.  Retweeting is a great way to get started if you’re a little nervous about composing your own tweets.  To retweet, all you need to do is put your cursor over a tweet that you like, and you’ll see retweet highlighted. Click and you’ve just done your first retweet!

What’s a hashtag? A hashtag allows you to categorize messages in twitter.  You precede a keyword with a hashtag, or the “#” symbol, to note a topic of interest. I typically use simple twitter hashtags such as #hepatitis B, or #HBV in my messages so that others interested in HBV topics will see my tweets. Rather than put them at the end of a tweet, I typically work them into my message. For example: “There are 400 million people chronically infected with #hepatitis B in the world.” Lots of viral hepatitis followers are using the #hepatitis hashtag, so they are sure to see my posted tweet. The hashtag will allow them to easily search twitter from the search box (top right) in twitter and retweet my message.  It might also encourage them to follow me since hepatitis B is an interest that we share. When I see tweeps tweeting with the #hepatitis hashtag, I tend to follow them, and if they continue to post good content, I might even add them to one of my twitter lists.

What is a Tweep? A tweep is a twitter user.

Getting Started.  All you need to get started is an email account, a picture or logo (though twitter will assign you their default image if you don’t upload one, so don’t let that stop you.), and a statement about you or your organization.

Go to www.twitter.com and sign up for a new account. It’s really pretty simple. If you have your email and image ready to upload, you can be in and out in a few minutes. Twitter will walk you through the whole thing – nothing tricky!

So what should you do to become familiar with twitter? Assuming you plan to follow what’s new in the world of hepatitis B, our twitter chat on the 27th and viral hepatitis events beyond World Hepatitis Day, then consider a few things:

Who do you want to follow? Consider following viral hepatitis organizations like the Hepatitis B Foundation (@HepBfoundation), CDCs Division of Viral Hepatitis (@cdchep), World Hepatitis Alliance (@Hep_Alliance) or other favorite viral hepatitis orgs you may know. You may also consider following medical doctors, journalists, or viral hepatitis advocates you find out there in the big-virtual world. Don’t forget about the community at large. You’ll find others interested in hepatitis B by using the #hepatitis, #HBV or #worldhepday hashtags in the search box. Part of the goal is to educate and raise HBV awareness. At HBF, The world is our target audience. We are happy to follow, or be followed by anyone that is interested in hepatitis B.

Who will follow you? In the beginning, you’re not going to have a lot of followers. Don’t worry about it! Building a following takes time. Slowly but surely as you start participating, you will gain new followers. Start by “retweeting” someone you are following, and most likely they will follow you back if you are helping them get their message out.

The World Hepatitis Day Twitter Chat sounds great! How do I join the conversation? It’s simple. The Twitter Chat starts at 2 pm EDT on Friday, July 27th. Login to your twitter account and be ready to contribute. We will be using the #WHDchat hashtag for this chat. All you need to do is search twitter for the #WHDchat and it will generate a list with all of the tweets from the conversation. If you see a tweet that you like, retweet it.  If you’d like to contribute to the conversation with your own message, compose your tweet and be sure to add the #WHDchat at the end of your tweet or no one will see it.

That’s it! Join the conversation on July 27th at 2 pm EDT!

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

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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!

Hepatitis B Advocacy, Hepatitis B Prevention

Reflection on 2012 Viral Hepatitis Policy Summit Meetings in D.C.

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L-R Daniel Raymond, NVHR Chair, Congressional Champion Staffers: Jirair Ratevosian (Congresswoman Barbara Lee), Philip Schmidt (Congressman Joe Serrano), Adrienne Hallett (Senate LHHS Appropriations Subcommittee, Senator Harkin)

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.

 

Baruch S. Blumberg Institute