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Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention

World Hepatitis Day in Ghana

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Ghanians lined up for a viral hepatitis screening at last year's World Hepatitis Day event in Tamale, Ghana (Northern Region)

HBF is pleased to share World Hepatitis Day plans of our friend Theobald Owusu-Ansah of the Theobald Hepatitis B Foundation in Ghana. The Foundation is also a voting member of the World Hepatitis Alliance. 

On July 28th, 2013, The Theobald Hepatitis B Foundation and the Hepatitis Coalition of Ghana will join the World with one voice to celebrate World Hepatitis Day in Sunyani at Victoria Park. In attendance will be the Chiefs, members of Parliament, District Chief Executives, Municipal Chief Executives, Assembly Members and all the Opinion Leaders of the Region.

The Theobald Hepatitis B Foundation is a non-profit organization whose main aim is to educate and create awareness of hepatitis B and C to the general public, ranging from the causes, and symptoms of viral hepatitis, to preventive measures.

On World Hepatitis Day, the activities will start with an early morning Float with music and dance throughout the principal streets of Sunyani, along with the members and volunteers of the Foundation and the Coalition distributing educational materials to the crowds. These leaflets, posters, banners and stickers are part of the ongoing media blast that will draw the public’s attention to problem of chronic hepatitis B among the people of Ghana.

Free screening and hepatitis B vaccinations will be ongoing throughout the day’s activities. Resource persons will be delivering their messages and educating the general public about viral hepatitis. It is important that the people learn and understand whether or not they are positive or negative for viral hepatitis, and if they are positive, what is next.

The Delegation of the Government and other health care professionals will educate the public on Viral Hepatitis Policies and the way forward. Dieticians will also take the general public through the kind of food and diet one needs to eat, and the importance of avoiding alcohol, in order to defuse the public cry of the cost of prevention and treatment of hepatitis B.

Participating organizations will then take the opportunity to appeal for funds from the government officials and the Chiefs of the region present, in order to enable us to successfully organize our last programme of the year.

At the end of the event, the public will be provided with advice, and directed to seek medical information from qualified health professionals, in order to avoid falling into wrong hands of those trying to sell false cures for those with hepatitis B.

Please join us for our World Hepatitis Day activities in Victoria Park if you are in Sunyani, Ghana.

Theobald Owusu Ansah
Theobald Hepatitis B Foundation
P.O. Box GP 21325 Accra-Ghana:

Phone: 00233-20-8269214
theobald2003@yahoo.com
Theobald Hepatitis B Foundation website

 

Living with Hepatitis B

Hepatitis B and Social Security Disability Benefits

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Please welcome guest blogger, Ram Meyyappan, senior editor of Social Security Disability Help as he provides advice on applying for Social Security Disability Insurance or Supplemental Security  Income should your HBV prevent you from working.

Hepatitis B (HBV)  is often referred to as a “silent infection” because those chronically infected may have few or no symptoms, or may not be unaware of their infection for decades. However, over time, the risk of serious liver disease is certainly possible and symptoms can range from mild to severe.  Severe symptoms rarely occur with an acute HBV infection, but can have very serious outcomes.  If your condition is severe to the point that you can no longer continue to work, you may qualify for SSDI (Social Security Disability Insurance) or Supplemental Security Income (SSI) benefits from the Social Security Administration (SSA).

You can learn more about SSDI and SSI here

Hepatitis B and Qualifying for Benefits

When you submit an application for Social Security Disability benefits an adjudicator will review your file and compare your condition with a listing of conditions known as the SSA Blue Book (http://www.ssa.gov/disability/professionals/bluebook/). This Blue Book contains a listing of conditions and qualifying criteria that may qualify an individual for Social Security Disability benefits. Unfortunately Hepatitis B does not have its own listing in the Blue Book. You may still be able to qualify for disability benefits, however, if you are able to prove that you suffer from an associated condition (such as depression) that is included in the Blue Book. Some of the conditions that may qualify an individual for Social Security Disability benefits that are listed in the Blue Book and that may be associated with Hepatitis B include:

  • 5.05 Chronic liver disease
  • 5.08 Unexplained weight loss
  • 5.09 Liver transplant
  • 12.04 Affective disorders

If you are applying for disability benefits based on an associated condition that is listed in the Blue Book, you must provide medical documentation proving that your condition is severe enough to meet the criteria of that specific listing. For example, in the case of chronic liver disease, you must be able to prove that:

  • You are hemorrhaging from esophageal, gastric, or ectopic varices or from portal hypertensive gastropathy and it has resulted in hemodynamic instability and required hospitalization for transfusion of at least 2 units of blood; or
  • You suffer from ascites or hydrothorax that is not attributable to other causes, despite continuing treatment, as prescribed, and that the condition was present during at least 2 evaluations that were at least 60 days apart within a consecutive 6-month period; or
  • You suffer from spontaneous bacterial peritonitis with peritoneal fluid containing an absolute neutrophil count of at least 250 cells/mm3; or
  • You are suffering from end-stage liver disease with SSA CLD scores of 22 or greater.

If you are not suffering from a condition that is listed in the SSA’s Blue Book, you may still be able to qualify for disability benefits under what is known as a vocation allowance. In order to do this, however, you will have to prove that you are unable to perform any type of work activity whatsoever. This can be done through medical findings, laboratory reports and a residual functional capacity form. In the case of Hepatitis B, your condition must be very advanced and severe in order to qualify. Unless you are suffering from end-stage liver disease, you may have a hard time qualifying for benefits based on this condition.

Applying for Social Security Disability Benefits with Hepatitis B

To apply for Social Security Disability benefits, you can apply online at the SSA’s website (http://www.socialsecurity.gov/pgm/disability.htm) or apply in person at your local Social Security office. You will want to make sure that you have all of your medical evidence ready when you go to submit your application for benefits.

It can be very hard to prove that you qualify for Social Security Disability benefits when you are applying based on a condition that is not included in the SSA’s Blue Book. Because of this, you may want to consider retaining the services of a disability attorney prior to submitting your application. A disability lawyer can help you gather the evidence that you will need to prove your case. These attorneys will know which condition, if any, may qualify you under the SSA’s Blue Book or how to prove that you qualify based on a vocational allowance.

Article written by Ram Meyyappan, senior editor of Social Security Disability Help. Please refer to the Social Security Disability Benefits Help website for additional information. (www.disability-benefits-help.org)

 

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Big Thank You to 2 Hep B Heroes

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HBF would like to thank Hep B Heroes Nina and Richie Kahn. Richie recently ran the Delaware Marathon, and he and Nina used this opportunity to raise money for the Hepatitis B Foundation. Nina and Richie, thank you for your generous donation and your commitment to those living with hepatitis B!

“Back in 2008, I suffered a pretty horrific knee injury running the Philadelphia Half-Marathon. Several years, surgical procedures, and rehabilitation sessions later, I’m running again. So, I figured why not put my stamina to the test by running my first marathon while raising money for a wonderful cause?

On May 12th, I ran the Delaware Marathon to raise money for the Hepatitis B Foundation (HBF). For those of you who haven’t had the pleasure of working with HBF, the foundation is the only national non-profit organization solely dedicated to the global problem of hepatitis B. They are dedicated to finding a cure and improving the quality of life for those affected by hepatitis B worldwide. This commitment includes funding focused research, promoting disease awareness, supporting immunization and treatment initiatives, and serving as the primary source of information for patients and their families, the medical and scientific community, and the general public.

I finished the race in 3:59:23, 218th overall. More importantly, thanks to the generous support of friends, co-workers, and colleagues, we were able to raise nearly $3,000 for the Hepatitis B Foundation. Be sure to check out the Hepatitis B Foundation’s website to learn about the excellent work they do at http://hepb.org/.”

 

 

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HBF and HBUP’s Hepatitis B Awareness Raising Event at the Philadelphia Art Museum

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What a great hepatitis B awareness raising event for the Hepatitis B Foundation (HBF) and Hep B United Philadelphia (HBUP). The event took place at on the “Rocky Steps” of the Philadelphia Art Museum.  Participants including student volunteers, community leaders and health care professionals were dressed in their super hero t-shirts and red capes for their run up the steps to raise HBV awareness.

 

 

 

 

 

 

 

 

 

 

 

Hep B Heroes joined Philadelphia Councilman David Oh as he presented a city council resolution to eliminate Hepatitis B in the City of Philadelphia.

 

A special guest appearance was made by HBF’s own mascot, O’Liver B Hepatitis. In the past, O’Liver has appeared at numerous public events, and he was thrilled to step up and raise HBV awareness on the Rocky Steps.

 

 

 

 

 

Multicultural dancers get a thumbs up from O’Liver as he and other participants enjoy their performance on the steps.

 

 

 

 

 

 

 

B A Hero. B sure. Get Tested. Get vaccinated…

 

 

 

 

 

Hepatitis B Prevention

Celebrate Mother’s Day by Breaking the Cycle of Hepatitis B Transmission From Mother to Baby

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Great blog written by Corinna Dan, RN, MPH, Viral Hepatitis Policy Advisor, Office of HIV/AIDS and Infectious Disease Policy, HHS , discussing the strategy to eliminate perinatal transmission of hepatitis B in the U.S. In many parts of the world, transmission from an HBV infected mother to her baby is the most common mode of transmission.  If you are a pregnant woman, please ask your doctor to screen you for hepatitis B. If you learn you have hepatitis B, talk to your doctor to be sure your baby receives appropriate prophylaxis within 12 hours of birth so you can break the cycle of transmission from mother to baby. Happy Mothers Day! 

Eliminating Perinatal Transmission of Hepatitis B: More Than Just a Test 

Hepatitis B in the U.S.

Nationally, new hepatitis B infections have been reduced by 82% since 1991 because of the availability of safe and effective vaccines, as well as improved prevention in healthcare settings. The Centers for Disease Control and Prevention (CDC) estimates that 1.4 million Americans are living with chronic hepatitis B infection. Unfortunately, many of these people became infected before the widespread availability of the hepatitis B vaccine in the early 1980s. Most are unaware of their infection, which places them at greater risk for severe complications of the disease, and for transmitting the virus to others. For women of childbearing age, this lack of awareness also increases the likelihood of transmitting hepatitis B to their infants.

Perinatal hepatitis B – spread from an infected mother to her infant at the time of birth – is estimated to account for 800-1,000 new infections each year in the United States. Unfortunately, this number of annual new, preventable infections has remained unchanged in recent years, which is why the elimination of mother-to-infant transmission of hepatitis B is one of the main goals of the Action Plan for the Prevention, Care & Treatment of Viral Hepatitis. As the Plan observes, the persistent annual number of perinatal hepatitis B cases is particularly concerning because approximately 90% of HBV-infected newborns develop chronic infection; up to 25% of these children will die of cirrhosis, liver failure, or liver cancer later in life.

Tackling Perinatal Hepatitis B

To achieve the goal of eliminating perinatal HBV, the Action Plan calls for the provision of postexposure prophylaxis (i.e., hepatitis B immune globulin and hepatitis B vaccine) to all infants born to HBV-infected women, a strategy consistent with the recommendations of the Advisory Committee on Immunization Practices (ACIP) in its “Comprehensive Immunization Strategy to Eliminate Transmission of Hepatitis B Virus Infection in the United States.” This recommended treatment is to be provided within 12 hours of birth followed by timely completion of the rest of the three-dose hepatitis B vaccine series, to prevent the infant from contracting hepatitis B. The Action Plan and ACIP also observe that care coordination is needed to ensure that infants born to HBV-infected women receive the services needed to protect them against hepatitis B.

A vital partner in these efforts to eliminate mother-to-infant transmission of hepatitis B is CDC’s Perinatal Hepatitis B Prevention Program (PHBPP) which supports activities in all 50 states, six cities, and five territories. The PHBPP was established in collaboration with state/local health departments and healthcare providers to promote use of the available tools – prenatal testing and vaccines – to reduce perinatal HBV transmission. The program works to identify pregnant women who are infected and provides case management services to ensure that infants receive the appropriate vaccines after birth to help prevent perinatal transmission. This program has been successful, ensuring that 95% of the identified infants born to infected mothers and case managed by the program received hepatitis B immune globulin and the first dose of hepatitis B vaccine within one day of birth and 83% of these infants complete the hepatitis B series by 12 months of age. In addition, whenever possible, the mother is counseled about hepatitis B and encouraged to talk with her healthcare provider for a full HBV evaluation. The program also seeks to identify household and sexual contacts of women who test HBV-positive – CDC reports that in 2011 the programs identified 9,681 such contacts – providing prevention information and recommending screening.

Despite these successful outcomes, challenges remain; the PHBPP estimates it identifies and case manages only about half of the expected births to hepatitis B infected women annually. Although hepatitis B screening is recommended for all pregnant women as part of routine prenatal care, not all women are screened. Some women do not seek or remain in prenatal care. In other cases, even when HBV screening occurs, health departments are not informed of screening results that reveal a pregnant woman is infected with hepatitis B – in some cases this is because such reporting is not required in that jurisdiction, in other cases it is an error or oversight. Under these circumstances, the health department cannot connect the expectant mother and her family to the services available through the PHBPP.

Another key support to efforts to eliminate perinatal HBV transmission is the implementation of provisions of the Affordable Care Act that will help improve prenatal hepatitis B screening. Under the Affordable Care Act, the hepatitis B test for pregnant women is among the Preventive Services that new health insurance plans issued after September 23, 2010 are required to cover without the consumer having to pay a copayment or co-insurance or meet her deductible. By making hepatitis screening more widely accessible and eliminating cost barriers, the healthcare law will also help bring us closer to the Action Plan’s goal of eliminating perinatal transmission of HBV.

In order to further reduce the number of infants who are perinatally infected with hepatitis B, healthcare providers, practices, and hospitals that care for pregnant women need to increase awareness and efforts to accurately report hepatitis B-infected pregnant women and refer the families to the PHBPP.

What Can Healthcare Providers Do?

Healthcare providers play a key role in eliminating perinatal hepatitis B. Steps that healthcare providers can take include:

  • Ensure that your practice is collaborating with the public health department to report women who are chronically infected so that their infants can benefit from case management. The CDC viral hepatitis reporting form [PDF 46KB] is available online.
  • Educate your patients about hepatitis B and listen to their concerns; the CDC has great educational materials available for patients.
  • Work with your local hospitals and birthing centers to ensure that they are following recommended policies and procedures.
  • Reach out to your state/local Perinatal Hepatitis B Coordinator if you have any questions or need additional assistance to implement the CDC recommendations.

What Can Pregnant Women Do?

  • Ask your healthcare provider if you were tested for hepatitis B and what the result of the test was.
  • Learn more about hepatitis B to make sure your new infant receives the preventive services needed to prevent hepatitis B infection at birth and throughout your child’s life.
  • If you learn that you are living with hepatitis B, check out the CDC’s frequently asked questions and talk with your healthcare provider to find out what you should do to stay healthy and ensure that you will be there to nurture and watch your child grow.

On this Mother’s Day during Hepatitis Awareness Month, please take the opportunity to learn more about hepatitis B and what steps you can take to realize the goal of eliminating mother-to-infant transmission of this preventable disease.

Please link to the original article if you would like to listen to this blog in it’s entirety.

 

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Hepatitis B Awareness Month at HBF

Daniel Chen - "Hep B Hero", HBF Public Health Program Manager, today's guest blogger

“B a hero!” is not simply a slightly-cheesy-yet-very-awesome campaign theme and slogan. It is a statement that we stand behind and strive for. It is about having the courage to stand up for the disenfranchised among us. It is about taking the time and effort to improve the lives of those we could have easily ignored. It is about not just doing the right thing, but going above and beyond.

Over 900 people. That’s the number of people we provided free hepatitis B screening tests for within just the past 12 months. The screening tests were offered at 17 different events that took place all around the city.

Over 70 organizations. That’s the number of partners we currently work with to serve the community and empower the underserved. Besides hosting screening events, our partners also help us raise awareness through education, provide in-language patient follow up service for linkage to care, connect us with new partners, and many more aspects of our work in the community.

Over 30 vaccine clinics. That’s the number of vaccine clinics we will have held in collaboration with the Philadelphia Department of Public Health at community sites by the end of 2013. By hosting the clinics at community sites, we remove the transportation and language barriers and make vaccines much more accessible for community members.

The list of accomplishments goes on. And all of this became possible because Philadelphia, as a city, has decided to “B a hero”. So get involved this May and help us celebrate the Hepatitis Awareness Month by coming out to one of our events. Come and support heroes everywhere in our fight against hepatitis B.

Friday, May 17

Hepatitis B Awareness & Media Event

11:30am-12:15pm @ Rocky Steps (Philadelphia Museum of Art, 2600 Benjamin Franklin Pkwy)

Join us in celebration of Hepatitis Awareness Month and Asian Pacific American Heritage Month by running up the Rocky Steps with us! All participants get a “B a hero” t-shirt and a cape. City Councilman David Oh will present a city council resolution, and a surprise performance will take place when we reach the middle level of the steps.

Saturday, June 1

Independence Dragon Boat Regatta

8am-5pm @ Schuylkill River (Kelly Drive, near St. John’s Boathouse)

Come cheer for team Philadelphia Hep B Heroes as well paddle our way to victory! The regatta is a family event with lots of entertainment such as cultural performances, rock climbing, and of course the exciting dragon boat races. So visit the Hepatitis B Foundation/Team Philadelphia Hep B Heroes tent for some snacks and cheer for our heroes.

Additional event:

Saturday, May 11

Hepatitis B Screening & Mini Health Fair

10am-1pm @ AmeriCare Pharmacy (600 Washington Avenue, Unit 18E, Philadelphia)

May Hepatitis Awareness Month would be incomplete without a screening event. In collaboration with the Jefferson Medical College APAMSA medical students and the AmeriCare Pharmacy, we will be providing free hepatitis B screening tests for those who were born in Asia or whose parents were born in Asia. Additional service such as blood pressure and blood glucose measurements will also be available at this event.

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Hep B Discrimination – Part Deux

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Francis Deng is a medical student at Washington University School of Medicine in St. Louis. He is a graduate of Harvard University, Bachelor of Arts (AB), magna cum laude, Human Development and Regenerative Biology. Mr. Deng was an instrumental leader of Team HBV – President at Harvard, and the co-chair of the National Advisory Board, Team HBV Collegiate.

I wrote previously about discrimination against health care workers and trainees who have chronic hepatitis B on KevinMD.com.  Since that time, major advances have happened. News surfaced that since 2011, the US Department of Justice (DOJ) has investigated 4 cases of Asian/Pacific Islander students who were infected and were not allowed to enroll in specific medical or dental schools, both private and public, that they were initially accepted to. Another case is still pending investigations from the Department of Health and Human Services Civil Rights Division.

In March 2013, the DOJ released a settlement noting that chronic hepatitis B infection is considered a disability, so discrimination, under specific circumstances, is prohibited under the Americans with Disabilities Act (ADA). This was groundbreaking in being the first ADA settlement ever reached on behalf of hepatitis B carriers. If you or someone you know has experienced HBV-related discrimination in the community, school, or the workplace, you are encouraged to file ADA complaints to the DOJ.

You might be thinking, I’ve never heard of such a thing, there must be so few cases where denial of admission or other discrimination has occurred based on hepatitis B status; or I know my school has students with hep B, so this really isn’t an important issue.

Here’s why the issue is important. Discrimination issues are only ever important to minority groups; I don’t mean racial minorities, I mean people who are not the majority in some way. It happens to people who don’t have a political voice or were not involved with policy making and are helpless in the face of institutional policies. When there are not explicit and systematic policies to protect such individuals, they are at the mercy of individuals who make judgments on behalf of the institution. In this situation, school administrators may be reasonable, allow students with hep B to matriculate, ensure proper precautions are made with respect to patient care, and give non-coercive guidance to students regarding career decisions. I know several schools where this is the case. Or they may be unreasonable and ignorant (willfully or unwillfully) of the CDC recommendations regarding HBV-infected health care workers. They may bar such infected students to matriculate, bar them from clinical activities even when it’s reasonably safe (i.e. they are not highly viremic or it’s a minimally invasive activity), or coerce them into going into specialties that do not involve direct patient care. Their lives are derailed and redirected needlessly.

Here’s who should care.

Pre-health students, especially 1st and 1.5 generation API Americans: If you were born outside of the US or your parents were born outside the US, particularly in a highly endemic region such as Asia, Africa, or Eastern Europe, you should know that you are at greater risk for having chronic hepatitis B infection. You may have been vaccinated as a requirement of entering school, and you may feel in excellent health, but you probably will have never been screened for hepatitis B infection or antibodies until you enter a healthcare environment. In these cases investigated by the DOJ, 3 out of 4 students were previously vaccinated but did not discover their infection until entering medical/dental training. This is because maternal screening and newborn vaccination policies have not been universally applied until recently, and screening children is not standard. There are always holes in the health care system where people fall through, whether in the US or (especially) abroad. Further, HBV immunization at birth, while effective, is not guaranteed to protect against infection. Get tested.

Health students: If you know of someone who has been denied enrollment based on HBV infection or experienced other types of discrimination in any kind of arena (childcare, employment, etc.), get in contact with hep B advocates. They can connect you to private or pro bono attorneys that will help you file a complaint with the DOJ. This can be confidential (name not public) and doesn’t even have to be filed by the individual. Nadine Shiroma, a community civil rights advocate, gave me most of the information I used to write this blog post. Joan Block, co-founder and executive director of the Hepatitis B Foundation, is another key resource.

School administrators: Protect your institution by implementing clear policies regarding HBV that are compliant with the ADA, and consistent with CDC recommendations for that matter. Help prospective students by making these policies public.

Student leaders: If you’re in APAMSA, serve on school policy committees, you can push your schools to make public and make clear their policies regarding hepatitis B infected students and staff involved in health care.

Hepatitis B Advocacy, Living with Hepatitis B

Viral Hepatitis Action Alert!

*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 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, 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 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
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
omairena@NASTAD.org     www.NASTAD.org
“Bridging Science, Policy and Public Health”

 

 

 

 

Hepatitis B Advocacy, Hepatitis B Prevention, Liver Cancer, Living with Hepatitis B

The Hepatitis B Foundation Participates in Liver Capitol Hill Day, 2013 – A Personal Reflection

Yesterday the Hepatitis B Foundation participated in the American Association for the Study of Liver Diseases (AASLD) annual “Liver Capitol Hill Day” visits. This is a great opportunity to get in front of state Senators and Congressmen in order to make requests known to them. It is also an opportunity to educate. As a constituent, your state representatives are interested in what you have to say. The “Asks” for the day were to support funding for liver related research, prevention strategies, and support of liver patient access to quality medical care.  Specifically, we were asking for NIH funding growth, rather than the 20% cut over the last decade, along with support of government agencies such as the CDC Division of Viral Hepatitis, and the delivery of health care systems and payment policies for patients living with liver diseases.  Prevention is also critical with specific asks for new, one-time hepatitis C testing and screening for hepatitis B for at-risk patients. As we are all aware, budgets are tight and we will all soon feel the effects of the Sequester. Research programs may no longer be funded, or severely cut, public health agencies and programs will be cut, and patients who are currently receiving medical assistance will suffer. For treated patients with HBV, it is essential nothing interrupts the daily antiviral use, and of course HBV and liver cancer prevention through screening, vaccination and surveillance is both necessary and cost effective in the long run.

Due to the Sequester, the day started in a panic for many Hill visitors. I was fortunate to arrive early – a good thing since I waited in a long security line for 45 minutes that wrapped around the building. As Maryland residents, Dave Li and I met with staff from both Senator Ben Cardin’s (D) and Senator Barbara Mikulski’s (D) offices.  Senator Mikulski was recently appointed the Chairperson of the U.S. Senate Appropriations Committee. This means she will have a great deal of influence on budget and spending decisions. We were told that due to the Sequester, the Continuing Resolution (CR) will remain in place for the remainder of the 2013, but Senator Mikulski is optimistic that the FY14 and future funding for the NIH, specifically, will be maintained. As a Maryland Senator, this is extremely important to Sen. Mikulski on many fronts. Senator Cardin has been making visits to agencies in MD, including the NIH, and researchers are frustrated they are unable to do their work.  Both Senator Cardin and Senator Mikulski support federal agencies (such as the CDC, Division of Viral Hepatitis, Public Health Agency etc.) and initiatives that provide care and services to meet the health care needs of Marylanders.  Fortunately this supports the Health and U.S. Health and Human Services (HHS) Viral Hepatitis Action Plan initiatives, since both Senators are supportive of prevention and surveillance initiatives.  Dave and I walked out of our Senate meeting feeling pretty good.

Unfortunately, the outlook was not so optimistic on the House side. We visited staffers from Congressman Chris Van Hollen and Congressman Elijah Cummings offices. Although they are working on budgets, they are meeting with opposition and resigned to deep cuts in their supported programs.  Congressman Cumming’s staffer was pleased to hear an optimistic viewpoint from Mikulski’s office.  Although clearly mixed signals from our House and Senate meetings, we can only hope that Congress will eventually work together and move forward with continued funding of agencies and programs that support those living with liver disease.

Please remember that your state Senators and Representatives have been voted to serve YOU. It is imperative that your voice be heard. If you don’t let them know what is important to you, important programs and agencies will be drastically cut.  You do not need to be a political machine to participate. Don’t know your Representative?   Find your Rep. on-line by putting in your zip code or state to learn who you need to contact. Find your Senator, Governor and Congressmen here. Call the Capitol switchboard’s toll free number at 1-888-876-6242 , or send an email  or letter with your asks, and your personal stories. Be sure your message is clear and concise, and personalize it if you can. You can visit your Representative or Senator when you are visiting Washington, D. C., or in the local, state office. Let your voice be heard – especially during this very difficult time.

Baruch S. Blumberg Institute