Hep B Blog

Tag Archives: CDC

Advocate Nadine Shiroma Champions Civil Rights for All Affected by Hepatitis B

Nadine Shiroma and her grandchild.
Nadine Shiroma and her grandchild.

By Nadine Shiroma

I am a retiree and volunteer working to address hepatitis B discrimination, which involves a serious, relatively unknown chronic disease that impacts Asian-American and Pacific Islander American (AAPIA) immigrants and refugees who are often isolated by culture and language, which makes this discrimination especially egregious.

As a fifth-generation AAPIA, I’d heard of hepatitis B but was not aware that it leads to cirrhosis or liver cancer or that AAPIAs make up 50 percent of the country’s estimated 2 million hepatitis B cases, but represent less than 5 percent of the U.S. population.

These facts came into sharp focus in 2010, when a college senior was devastated to learn she would not be permitted to enroll in a healthcare program due to her chronic hepatitis B. Nothing in the school’s admissions policy or information published by the profession’s national admissions coordinating agency had prepared the student for this. When the student informed me that an older friend with hepatitis B was completing a similar healthcare program at a different institution, I advised her to challenge her school’s exclusion policy.

The issue raised many questions that called for research and consultation with hepatitis B specialists and community health and civil rights advocates to find out how and why schools were permitted to have such different hepatitis B policies. I also sought to compare various institutional policies with their respective state licensing laws for providers with hepatitis B. Fortunately, I was referred to an attorney who had an understanding of the disease who challenged the school’s exclusion policy. This led to the school’s implementation of a new, progressive policy for students with chronic hepatitis B.

Though gratified with the outcome for this student, I feared other students with hepatitis B would face similar discrimination, because too many medical school policies barring enrollment of students with hepatitis B were undisclosed. Future victims might not know how or where to access assistance or legal help. Given the World Health Organization’s map of global regions with high rates of hepatitis B and the current patterns of U.S. immigration, I believed hepatitis B discrimination would soon impact other immigrant/refugee communities.

My initial contact with the Hepatitis B Foundation in 2010 developed into a working relationship that won justice for five additional medical and dental students who contacted us between 2011 and 2013.

At the urging of the foundation and hepatitis B specialists,  the Centers for Disease Control and Prevention (CDC) revised and updated its 20-year old policy for infected healthcare workers; and the disability complaint I filed with the Department of Justice (DOJ) resulted in a Settlement Agreement for two students and a Technical Assistance Letter jointly issued by three federal agencies to inform healthcare schools of their responsibilities to accommodate individuals with hepatitis B and point out that failure to comply could also violate Title VI, which prohibits discrimination on the basis of race, ethnicity or national origin.

Hepatitis B civil rights advocacy is now focused on policies of all U.S. military services, including the Coast Guard, Public Health Service and the National Oceanic and Atmospheric Administration, which ban individuals with hepatitis B from joining.

Between 2013 and 2016, we advised nine active duty personnel and students who were not permitted to enlist for military service or scholarship programs or were discharged from active duty or a U.S. military academy due to hepatitis B. We continue to advocate for the Department of Defense to revise the policies that prohibit the people with chronic hepatitis B and establish reasonable, science-based accommodation policies for existing or future personnel who are diagnosed with chronic hepatitis B

Continuing hepatitis B education and civil rights challenges

Most immigrants and refugees do not understand the seriousness of the silent disease or the importance of hepatitis B screening. If diagnosed with hepatitis B, they often fear being treated as ‘pariahs’ in a society where they already feel like outsiders; or they worry that others in their family will be stigmatized or that hepatitis B will be used as an excuse to prevent immigrants from entering the U.S. Still others may be silenced by a code of silence within their professions.

Adding complexity to hepatitis B education and outreach are the diverse languages and cultures of the immigrant/refugee communities, along with the economic and social disparities experienced by so many families who start new lives in the U.S. living in relative isolation with limited English proficiency and few financial resources.

Lest we think hepatitis B discrimination is limited to Asian- and African-American and immigrant/refugee communities, new pockets of hepatitis B infection linked to the opioid epidemic have been reported in rural regions. Outbreaks of hepatitis B infection in majority white, non-immigrant, economically-depressed regions suggest that some of those infected may not have been immunized due to a lack of knowledge or healthcare access. These are social and economic disparities that mirror the disparities experienced by many immigrant/refugee families.

Like their healthier peers, teens and young adults with hepatitis B seek opportunities to fulfill their potential, earn a living wage and improve their lives. To this end, hepatitis B advocates are working to protect the rights of infected persons and ensure that our schools and institutions, and public and private employers administer reasonable, science-based chronic hepatitis B policies and accommodations.

Nadine Shiroma is a community civil and voting rights advocate and policy advisor to the Hepatitis B Foundation. She can be contacted at nadine.shiroma@gmail.com.

Diagnosed in March, 2009, with stage 4 metastatic non-Hodgkin’s lymphoma, Nadine spent the remainder of the year undergoing chemotherapy and recurrent hospitalizations. “That I lived and recovered is due to doctors at the City of Hope Cancer Research Center, my family and especially my husband and daughter,” she recalled. “Assisting the college senior in 2010 helped me discover a new normalcy. On that day in 2011, when a new, progressive chronic hepatitis B accommodation policy was published by the healthcare school that previously excluded students with hepatitis B, I told myself, ‘This is why I lived.’”

 

Know Hepatitis: Reduce Liver Cancer Risk and Join a Liver Cancer Awareness Twitter Chat Oct. 25

October is Liver Cancer Awareness Month and it’s time to “chat” about reducing liver cancer in people living with hepatitis B and C.

On Tuesday, Oct. 25, representatives from Hep B United, CDC’s Division of Viral Hepatitis, and NASTAD (the National Alliance of State and Territorial Aids Directors) will co-host a twitter chat at 2 p.m. EST using the hashtag #liverchat.

Also participating are special guests from CDC’s Division of Cancer Prevention and Control, Prevent Cancer Foundation, and Dr. Katherine McGlynn of the National Cancer Institute. Dr. McGlynn is a Senior Investigator at the National Cancer Institute, Division of Cancer Epidemiology & Genetics, Metabolic Epidemiology Branch. She is a researcher and expert in hepatocellular carcinoma.

Below are questions scheduled to be discussed during the chat. How can you contribute to the conversation? Share any resources or strategies you have that raise awareness about liver cancer. Join the conversation with the hashtag #liverchat.

Q1: What is liver cancer and why is it so deadly?

Q2: What are the risk factors for liver cancer and why should people viral hepatitis worry?

Q3: What are some strategies to help prevent viral hepatitis and liver cancer?

Q4: What are the barriers that keep people from getting screened for viral hepatitis and how can they be addressed?

Q5: What can people living with chronic hepatitis B and C do to protect their liver health and prevent liver cancer?

Q6: Why are some populations more vulnerable to viral hepatitis and liver cancer, and how do we address the disparities?

Q7: What can we do to raise awareness & educate vulnerable communities about viral hepatitis and its link to liver cancer?

Q8: What resources are available to learn more about viral hepatitis and liver cancer?

Co-hosts and special guests for the chat include:

  • Hep B United – @HepBUnited
  • NASTAD – @NASTAD
  • CDC Division of Viral Hepatitis – @cdchep
  • CDC Division of Cancer Prevention – @CDC_Cancer
  • Dr. Katherine McGlynn – @LiverCancerConn
  • Prevent Cancer Foundation – @PreventCancer

Confirmed participants and their handles include:

  • Hepatitis B Foundation – @hepbfoundation
  • CDC National Prevention Information Network (Twitter chat moderator) – @CDCNPIN
  • White House Initiative on Asian Americans and Pacific Islanders @whitehouseaapi
  • Hep B United Philadelphia – @HepBUnitedPhila
  • Coalition Against Hepatitis For People of African Origin – @CHIPO_HBV
  • Asian American Community in Action – @apcaaz
  • Assn. of Asian Pacific Community Health Organizations (AAPCHO) – @HepBPolicy
  • National African Immigrant and Refugee HIV/AIDS and Hepatitis Awareness Day (NAIRHHDay) – @NAIRHHADay
  • Hep Free NYC – @HepFreeNYC
  • Asian Health Coalition – @aapinews
  • Thelma Thiel – @theLiverLady
  • Charles B Wang Community Health Center – @CBWCHC
  • Office of HIV/AIDS & Infectious Disease Policy – @HHS_ViralHep
  • Hope Clinic – @AAHC_HOPEClinic
  • World Hepatitis Alliance – @Hep_Alliance
  • National Viral Hepatitis Roundtable – @NVHR1

Just getting started with Twitter? Want to know how to join the conversation?  Type #liverchat in the search box of the Twitter application to follow the chat. You can prepare your tweets in response to the topics listed above in advance, or you can also tweet on the fly, re-tweet, or Like a tweet from the chat.

The questions are labeled Q1, Q2, etc. so please respond/answer specific question by using A1, A2, etc. in front of your tweets. Remember to include the #liverchat hashtag, which is not case sensitive, in all of your tweets.

If you plan to participate, please contact us at info@hepb.org and we’ll add you to the list of confirmed participants. Let us know if you have any other questions about joining the chat.

In America, It Takes a Coalition to Combat Hepatitis B

Hep B United Summit members meet with California lawmakers in Washington DC.
Hep B United Summit members meet with California lawmakers in Washington DC.

By Christine Kukka

In late July, during World Hepatitis Day 2016, the fourth annual Hep B United Summit convened in Washington D.C. and dozens of advocates met with federal officials and brainstormed strategies to increase screening, immunization and linking people to care to eliminate hepatitis B across the country.

The Hepatitis B Foundation and the Association of Asian Pacific Community Health Organization (AAPCHO) established Hep B United in 2011 to address the silent epidemic of hepatitis B. The liver disease infects 2 million people in the U.S., and 67 percent don’t know they’re infected.

Asian-American and Pacific Islanders (AAPI) and African immigrant

Members of the Hep B United 2016 Summit in Washington DC.
Members of the Hep B United 2016 Summit in Washington DC.

communities are among those hardest hit. Crafting a culturally- and liguistically-adept approach on small or non-existent budgets to educate and screen these diverse populations remains a challenge for Hep B United’s  more than 30 community coalitions in 15 states and Washington D.C.

On the upside, the coalition’s organizations have educated 4 million Americans and screened about 40,000. However, large swaths of the country lack outreach efforts to prevent the spread of hepatitis B. For a map and list of Hep B United Summit member organizations, click here.

The coalition’s ongoing hepatitis B prevention efforts mirror HIV and hepatitis C campaigns that have sought to increase education, screening, and linkage to care. But in many respects, Hep B advocates face more challenges:

  • Because there is a safe and effective vaccine that prevents hepatitis B, many state and federal health officials assume the infection will go away on its own and government resources for screening and prevention have been minimal.
  • Many immigrant populations affected by hepatitis B have unique languages and cultures, which requires careful, individual approaches to each community.
  • Federal healthcare programs often under-funded or inhibit effective prevention work. For example, Medicare currently does not cover the cost of life-saving hepatitis B tests in seniors, many of whom are in high-risk groups because of their ethnicity or personal history. The federal government has proposed to cover screening, but only if it’s ordered in a primary care office.  Some of the most effective screening in high-risk communities often occurs at community-based settings or emergency rooms, far from a primary care office. Summit participants are orchestrating letter-writing to endorse the federal government’s proposed decision to cover hepatitis B screening under Medicare and to convince Medicare officials to broaden coverage of hepatitis B screening.

Summit also participants met with federal officials from the U.S.  Department of Health and Human Services, Centers for Disease Prevention and Control (CDC) and the Department of Justice to push for more effective policies and increased funding to fight the world’s most common serious liver infection. One afternoon was spent visiting Congressional representatives to boost lawmakers’ awareness of the terrible toll hepatitis B takes on their constituencies.

“If community organizations can learn from each other and develop effective ways to educate people about hepatitis B and to get them screened and referred to medical care in the early stages of their infection, we can succeed in preventing new cases, save health care dollars and, most importantly, save lives,” said Jeffrey Caballero, AAPCHO executive director and Hep B United co-chair.

The following four hepatitis B advocates were honored at the summit for their work to eradicate hepatitis B:

Alex Shirreffs, Philadelphia's Viral Hepatitis Prevention Coordinator
Alex Shirreffs, Philadelphia’s Viral Hepatitis Prevention Coordinator

Alex Shirreffs, MPH, Viral Hepatitis Prevention Coordinator with the Philadelphia Department of Health. She was recognized for her collaboration with Hep B United Philadelphia to screen area AAPI communities. Her work ensures that hepatitis B remains a public health priority, and she serves as a critical liaison between Hep B United and other Adult Viral Hepatitis Prevention Coordinators nationwide.

Mohammed Abdul-Kadir, coordinator of Hepatitis B Coalition of Washington
Mohammed Abdul-Kadir, coordinator of Hepatitis B Coalition of Washington

Mohammed Abdul-Kadir, MPH, MSIS, coordinator of the Hepatitis B Coalition of Washington, (now part of International Community Health Services in Seattle), is recognized for his commitment to eradicating hepatitis B in Washington’s AAPI communities by bringing together stakeholders from across the state and providing free screening, education and linkage to care for thousands of individuals.

Hepatitis B civil rights advocate Nadine Shiroma
Hepatitis B civil rights advocate Nadine Shiroma

Nadine Shiroma, a national hepatitis B civil rights advocate from Seattle, has worked tirelessly with the Hepatitis B Foundation to eliminate hepatitis B-related discrimination in the United States. She is recognized for advocacy on behalf of hepatitis B-infected health care students, which resulted in hepatitis B being added as a protected condition under the Americans with Disabilities Act (ADA). The fight now has been taken to the U.S. Department of Defense, which currently bars infected applicants and discharges military personnel diagnosed with hepatitis B.

Moon Chen, director of the Asian American Network for Cancer Awareness, Research and Training.
Moon Chen, director of the Asian American Network for Cancer Awareness, Research and Training.

Moon Chen, Ph.D., director of the Asian American Network for Cancer Awareness, Research and Training in Sacramento, Calif., is recognized for making hepatitis B a priority for academic and public health research, and for continuing to research and identify effective hepatitis B prevention, screening and referral-to-care intervention models that can be replicated nationwide.

For more information about joining Hep B United, click here.

It’s Hepatitis Awareness Month: Five Reasons We Don’t Get Tested, and How to Overcome Them

Members of Drexel University's Asian Pacific American Medical Student Association participate in a hepatitis B screening program at a Chinese Christian church in Philadelphia.
Members of Drexel University’s Asian Pacific American Medical Student Association participate in a hepatitis B screening program at a Chinese Christian church in Philadelphia.

May is Hepatitis Awareness month. Why do we need an annual reminder about hepatitis B? Because 65 percent of the estimated 2.2 million people in the U.S. living with hepatitis B don’t know they’re infected.

Studies show when people know their hepatitis B status, they’re more likely to get monitored regularly, get treatment, and take steps to avoid passing on the disease to partners and their children.

So why are so many Americans unaware of their hepatitis B infection? Here are five roadblocks that stop us from getting tested for hepatitis B, and what how we can do to overcome them.

We feel fine, so we assume we’re not infected. Hepatitis B rarely causes symptoms. There are very few sensory nerves around the liver, so when a viral hepatitis infection strikes, we rarely feel its effects. As a result, most of us – especially if we were infected as children or newborns – never experience any symptoms for decades. So remember, “feeling OK” is no excuse to avoid testing. Continue reading "It’s Hepatitis Awareness Month: Five Reasons We Don’t Get Tested, and How to Overcome Them"

“Hepatitis on the Hill” Advocates Fight for Hepatitis Prevention, And So Can You

Hepatitis on the Hill advocates, March 2016.
Hepatitis on the Hill advocates, March 2016.

On Tuesday, March 8, more than 120 advocates from across the U.S. fanned out on Capitol Hill to talk to their representatives about the importance of funding the Viral Hepatitis Division of the U.S. Centers for Disease Control and Prevention (CDC). Dozens of people laid their hearts on the line and told their stories about how they, their families, and friends have been touched by hepatitis.

In meetings with Congressional staff, and in some cases their senators, they shared stories about family members who discovered they had hepatitis B only when they were diagnosed with late-stage, inoperable liver cancer. Others talked about how lucky they were to have been immunized at birth, considering their mothers were infected. Courageous advocates described losing loved ones to hepatitis B and C spread through the heroin epidemic, and recalled indifferent healthcare workers who saw only addicts instead of human beings who had  lost their battle with both addiction and hepatitis.

Our goal was to get our representatives to allocate more funding for CDC’s hepatitis division, which is sorely needed. It’s CDC’s job to investigate disease outbreaks and educate the public and healthcare providers about infectious disease. For example, CDC publishes a variety of reports and promotional materials to educate people how to protect themselves against hepatitis B and C. The agency also funds a “hepatitis coordinator” in nearly every state whose job it is to help prevent hepatitis, investigate outbreaks, and collect data—a Herculean task for just one person. Continue reading "“Hepatitis on the Hill” Advocates Fight for Hepatitis Prevention, And So Can You"

Join Hep B United, CDC DVH, HBF, AAPCHO and CDC NPIN for a Twitter Chat!

Mark you calendars! Join Hep B United,CDC Division of Viral Hepatitis , HBF, AAPCHO and CDC NPIN for a Twitter Chat on Tuesday, November 19th, 3pm EST to discuss the Know Hepatitis B campaign and what Hep B United, partners and coalition members are doing to raise awareness and increase hepatitis B testing and vaccination among Asian Americans and Pacific Islanders (AAPIs). Hepatitis B is the leading cause of liver cancer and a major health disparity among AAPIs who are disproportionately impacted by HBV. Continue reading "Join Hep B United, CDC DVH, HBF, AAPCHO and CDC NPIN for a Twitter Chat!"

Join CDC and HBF for a World Hepatitis Day Twitter Chat

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!

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

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!

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

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.