Category Archives: Advocacy

Operation Storm Philadelphia City Council : The Aftermath

Posted on May 14, 2014 | 1 Comment
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Operation SCC 01

Hepatitis B Foundation Intern and Guest Blogger Limi Lo shares her personal reflection of last week’s advocacy event when hepatitis B partners and advocates stormed Philadelphia City Council 

A few months ago, I was sitting in my public policy class learning about advocacy. In simple English, it means, “to fight for a cause that you believe in.” As much as I understood what it meant, I never thought I would take part in a real advocacy event until I attended the City Council resolution presentation on May 8th, 2014. The event was held at the Philadelphia City Council during a city council session, and included supporters from Hep B United Philadelphia (lead by the Hepatitis B Foundation), HepCAP, and Philadelphia County Medical Society. Together, supporters came out and advocated for better viral hepatitis care in the greater Philadelphia area. City Councilman David Oh had introduced a resolution declaring May as Hepatitis Awareness Month and calls for all high-risk Philadelphians to receive appropriate testing and proper care for viral hepatitis.

The event not only provided me with a valuable learning experience, but more importantly, it was a life changing experience. I was able to witness community partners, students, professors, and other advocates coming together to help raise awareness and fight for a substantial cause (to improve hepatitis care). There were dozens of posters held high and being displayed: “Be proactive, get tested today”, “know more hepatitis”, and “Give hope to your family”. These messages were inspirational in addressing the need for city leaders to pay greater attention for the silent epidemic of viral hepatitis. Throughout the event, the atmosphere was filled with positive energy and a sense of hope was tangibly present—a hope that, in Philadelphia, all high-risk individuals can access screening tests, vaccines, and care for viral hepatitis.

Since beginning my practicum with the Hepatitis B Foundation, I’ve gained a variety of hands-on experience to raise community awareness, such as through screening events, providing linkage to care and now, participating in public health advocacy. I am grateful to be working with passionate and motivated individuals that want to make a difference in their community. Although, there is still much work to get done in improving the care for viral hepatitis, I can already feel the positive impact we are making as a community. The City Council event was a major stepping stone in advocating the cause at a local level and it was a huge success. I know in the near future, more and more people will become aware of the hepatitis issue and attention will be brought up to the federal and state level. But until then, let’s all be heroes and help save lives through advocacy.

 

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Posted in Advocacy, Hep B Awareness, Hepatitis B Foundation Events

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Viral Hepatitis Action Alert!

Posted on March 19, 2014 | 2 Comments
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red-phoneRepresentatives Mike Honda, Hank Johnson, and Judy Chu are asking all House Representatives to sign an important letter supporting increased funding for viral hepatitis programs in the Fiscal Year 2015 appropriations bill (see text of letter below)

Please take a few minutes before March 25th to call your House Representative’s office in Washington, DC and ask/him to sign this letter.

You can reach your Representative through the Congressional Switchboard at (202) 224-3121. Ask to be connected to your Representative. Once you are connected to the office, ask to speak to the staff person who handles health care issues. Whether you speak to that person live or leave a voicemail, tell them (1) your name, (2) where you live and that you are a constituent, (3) that you would like the Representative to sign the “Dear Colleague” letter from Representatives Honda, Johnson, and Chu supporting increased funding for viral hepatitis and (4) a brief message why this issue is important to you. Tell them they can sign the letter by contacting Kelly Honda in Representative Honda’s office, Scott Goldstein in Representative Johnson’s office, or Linda Shim in Representative Chu’s office. The deadline for Representatives to sign is March 25th.

Text of “Dear Colleague” letter from Representatives Honda, Johnson, and Chu:

Support Funding for Viral Hepatitis

March XX, 2014

The Honorable Jack Kingston
Chairman
Subcommittee on Labor, Health and Human Services
United States House
Washington, D.C., 20515

The Honorable Rosa DeLauro
Ranking Member
Subcommittee on Labor, Health and Human Services
United States House
Washington, D.C., 20515

Dear Chairman Kingston and Ranking Member DeLauro:

As you begin deliberations on the Fiscal Year 2015 Labor, Health and Human Services, Education, and Related Agencies Appropriations bill, we would like to respectfully request that you allocate $47.8 million for the Division of Viral Hepatitis (DVH) at the Centers for Disease Control and Prevention (CDC), an increase of $16.4 million over the FY2014 level.

The CDC’s 2010 professional judgment (PJ) budget recommended $90.8 million each year from FY2011-FY2013, $170.3 million annually from FY2014-FY2017, and $306.3 million annually from FY2018-FY2020 for DVH in order to comprehensively address the viral hepatitis epidemic. While past increases have been helpful, these have only been small steps toward building a more comprehensive response to viral hepatitis. Our recommendation of $47.8 million is in line with the needs determined by the PJ and the goals of the Viral Hepatitis Action Plan, but pales in comparison to the CDC’s PJ.

The need to enhance and expand these prevention efforts is growing more urgent. Viral hepatitis is the leading cause of liver cancer – one of the most lethal, expensive and fastest growing cancers in America. More than 5.3 million people in the U.S. are living with hepatitis B (HBV) and/or hepatitis C (HCV) and 65-75% of them are undiagnosed. Without an adequate, comprehensive surveillance system, these estimates are only the tip of the iceberg. Viral hepatitis kills 15,000 people each year and is the leading non-AIDS cause of death in people living with HIV – nearly 25 percent of HIV-positive persons are also infected with HCV and nearly 10 percent with HBV.

The epidemic is particularly alarming because of the rising rates of new infections and high rates of chronic infection among disproportionately impacted racial and ethnic populations, and presents a dramatic public health inequity. For example, HCV is twice as prevalent among African Americans as among Caucasians. Asian Americans comprise more than half of the known hepatitis B population in the United States and, consequently, maintain the highest rate of liver cancer among all ethnic groups. Additionally, African American and Latino patients are less likely to be tested for HCV in the presence of a known risk factor, less likely to be referred to treatment for subspecialty care and treatment, and less likely to receive antiviral treatment. Recent alarming epidemiologic reports indicate a rise in HCV infection among young people throughout the country. Some jurisdictions have noted that the number of people ages 15 to 29 being diagnosed with HCV infection now exceeds the number of people diagnosed in all other age groups combined.

Further, the baby boomer population (those born 1945-1965) currently accounts for two out of every three cases of chronic HCV. As these Americans continue to age, they are likely to develop complications from HCV and require costly medical interventions that can be avoided if they are tested earlier and provided with treatment options. It is estimated that this epidemic will increase costs to private insurers and public systems of health such as Medicare and Medicaid from $30 billion in 2009 to over $85 billion in 2024, and also account for additional billions lost due to decreased productivity from the millions of workers suffering from chronic HBV and HCV.Over the last two years, CDC and the U.S. Preventive Services Task Force (USPSTF) have begun to align their recommendations for hepatitis screening, recommending one-time testing of baby boomers and screening vulnerable groups for HCV.

We appreciate the Committee’s support for viral hepatitis prevention, in particular the increased support to prioritize the identification of HBV and HCV-positive individuals who are unaware of their status. We strongly encourage you to sustain your commitment this year. We have the tools to prevent the major causes of viral hepatitis and liver cancer – a hepatitis B vaccine and effective treatments that reduce disease progression, new diagnostics for HCV and treatments that increase cure rates over 90%, and even more medical advances in the research pipeline. Making this relatively modest investment in the prevention and detection of viral hepatitis represents a key component in addressing a vital public health inequity and will get more Americans into care, strengthen our public health infrastructure and combat the devastating and expensive complications caused by viral hepatitis.

Sincerely,

XXX

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Posted in Advocacy, HBV Awareness, Viral Hepatitis

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Fighting FHC: A Family’s Battle Against a Rare Liver Cancer

Posted on February 28, 2014 | 1 Comment
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In recognition of Rare Diseases Day today, Liver Cancer Connect is honored to feature an article by guest blogger, Gail Trecosta. Gail’s son is fighting a rare form of liver cancer.

MatthewWe’ve all heard or seen heartbreaking stories of children with cancer. Ours began in October 2012. Our world turned upside down when our 13-year-old son was diagnosed with fibrolamellar hepatocellular carcinoma (FHC).

Continue reading →

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Posted in Advocacy, Chemotherapy, Deadliest Cancers, Fibrolamellar cancer, hepatocellular carcinoma, Liver Cancer Awareness, liver cancer prevention, Liver resection surgery, Public Health, Radiation therapy, Rare Diseases Day, Research, Sequestration, Uncategorized

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Joan Block, Hepatitis B Foundation Co-founder, Honored for Advocacy Work

Posted on August 23, 2013 | Leave a comment
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A wonderful article (reprinted below) and short video was published last weekend in Phillyburbs.com recognizing the work of Joan Block, the Executive Director and co-founder of the Hepatitis B Foundation. In commemoration of World Hepatitis Day, Joan and Dr. Anna Lok were honored by the Viral Hepatitis Action Coalition of the Centers for Disease Control Foundation, for advocacy work resulting in the protection of medical students from HBV discrimination, and ultimately having HBV recognized as a disability protected under the Americans with Disabilities Act (ADA). This amazing accomplishment is just one of the many successes Joan and the HBF have had over the last 23 years as a result of her tireless efforts and dedication to the mission to help improve the lives of those affected by hepatitis B.

Please visit Phillyburbs.com to access to view the short video where Joan talks about the Foundation’s beginnings and how the HBF has grown from a grass roots effort to the leading national nonprofit for hepatitis B. Joan Block and the HBF truly are the “voice of hepatitis B”.

Read more about the story and the mission of the Hepatitis B Foundation and be sure to visit the HBF website to learn more about hepatitis B and the work of the Foundation.

For more than two decades, the Hepatitis B Foundation has fought to find a cure for the liver disease and advocate for those who have it.

What started as a grass-roots effort of four passionate people has grown into one of the leading nonprofit research and disease advocacy organizations in the United States.

“We are the voice for hepatitis B in the United States,” said co-founder and executive director Joan Block. “There’s still a lot of work to do, but we’ve accomplished a lot in the past 23 years.”

Earlier this year, the foundation’s mission got a boost when the U.S. Department of Justice said hepatitis B patients are protected under federal disability law in a case brought by the foundation against a New Jersey medical school on behalf of two students who were denied admission because they had the disease.

The case earned Block and Dr. Anna Lok, director of clinical hepatology at the University of Michigan Health System, recognition from the Centers for Disease Control Foundation, which honored both women on World Hepatitis Day July 25.

“That award is really being given to the foundation,” said Block, who lives in Doylestown Township. “It’s not me; it’s the work of the foundation. Without the foundation, I honestly don’t know if hepatitis B would even have much on the radar screen. There are very few voices, and we are probably the primary voice at the national level.”

Hepatitis B is an infectious liver disease that can be spread by sexual contact, sharing infected needles or at birth from mother to child, according to the Centers for Disease Control and Prevention. Chronic infection can lead to liver failure and cancer.

Block, her husband, Timothy Block — a researcher and academic who more often serves as the public face of the foundation — and New Hope philanthropists Jan and Paul Witte founded the Hepatitis B Foundation 23 years ago to draw more attention to and develop a cure for the disease, which affects up to 1.4 million Americans.

The couples initially started out to help a local family dealing with the disease. But what they found was little interest from the public health sector in researching a cure. The hepatitis B vaccine has led to dramatically lower rates of infection, and the prevailing, yet incorrect, belief at the time was that the disease infected mainly gay men and intravenous drug users.

“The more we dug, the more we realized there was nothing out there,” Joan Block said. “It was really grass roots, just the four of us in (the Wittes’) kitchen. We had the grand mission of raising a lot of money to start a research effort. That’s really what we needed. But it was hard to raise money when people didn’t know what hepatitis B was.”

Over the years, she said, the foundation has received numerous phone calls from people who believed they were being discriminated against because they have the disease. Some of them were medical professionals.

In 2011, four students contacted the foundation over six months, all claiming they were denied admission to or kicked out of medical and dental schools after discovering they had hepatitis B. All four were Asian Americans who were infected at birth. About half of infected patients in the U.S. are of Asian descent.

“It seemed like an avalanche,” said Block, a registered nurse who taught at Abington’s nursing school.

The foundation and Lok lobbied the CDC to update hepatitis B guidelines for medical professionals and students last changed in 1991. Since that last update, there have been no reports of hepatitis B transmission from medical or dental students, according to the CDC.

The Hepatitis B Foundation also filed a lawsuit on behalf of two students denied admission to the University of Medicine and Dentistry of New Jersey. The school settled with the Department of Justice.

In an added step, the departments of justice, health and human services and education sent a joint letter to the nation’s medical and dental schools about hepatitis B, encouraging them to adopt the CDC guidelines and informing them that people with hepatitis B are protected under the Americans with Disabilities Act.

But the foundation’s advocacy work is far from over. The organization is now lobbying on behalf of servicemen and women who are fighting discharge from the military on the grounds that they’re infected with the disease.

And the foundation’s executive director continues to push for a cure.

“We still want that cure,” Joan Block said. “We’re not satisfied that it’s preventable and controllable. We still have an urgent mission. That has not changed.”

 

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Posted in Advocacy, HBV Awareness, HBV discrimination, Hep B Awareness

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Viral Hepatitis Action Alert!

Posted on April 3, 2013 | Leave a comment
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*ACTION ALERT*

HAP – Hepatitis Appropriations Partnership

 Urge Your Members of Congress to Support Viral Hepatitis Funding

In Their Appropriations Programmatic Requests

 

 

With the passage of the continuing resolution (CR) for FY2013 at the FY2012 levels (before the sequester) and no Prevention and Public Health Fund allocations, we do not know the total, final funding level for FY2013 at the Centers for Disease Control and Prevention (CDC) Division of Viral Hepatitis (DVH) or the future of the $10 million they received in FY2012 for a testing initiative. The President’s FY2014 budget has not yet been released. We need your help in raising awareness among Members of Congress about the viral hepatitis epidemics and asking their support for increased funding for viral hepatitis activities at the federal level.  Viral hepatitis advocates are urging for a total funding at the Division of Viral Hepatitis of $35 million, an increase of $5.3 above the total FY2012 level.

In the next week and a half, 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 FY2014.

As you know, 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 $19.7 million in federal funding dedicated to fund viral hepatitis activities nationwide at the CDC in the CR for FY2013, before sequester.  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 April 12.

Additionally, the CDC released FY2012 Grant Funding Profiles by state, here. When you click on your state and “Generate Report,” your state’s viral hepatitis funding is included in the report.

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  () Senate staff emails are First_Last@Last name of Senator.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, in FY2012, the only dedicated federal funding stream provided a mere $29.7 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 a total funding level of $35 million for the Division of Viral Hepatitis in FY2014 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

3.   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.

4.   If you need assistance or want to talk through the process please email or call Oscar Mairena at (202) 434-8058 or . 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
 Manager, 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
     www.NASTAD.org
“Bridging Science, Policy and Public Health”

 

 

 

 

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Posted in Advocacy, HBV Awareness, Public Health, Viral Hepatitis

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