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Action Alert! Urge Members of Congress to Include Viral Hepatitis Funding in Programmatic Requests

If you read Hepbtalk’s blog last week summarizing the Viral Hepatitis Policy Summit, you know that it will take efforts from all advocacy organizations and people like YOU telling your story and asking that money be dedicated to viral hepatitis. Please get involved. We need YOUR help!

 

On February 13, 2012, President Obama kicked off the Fiscal Year 2013 appropriations process with the release of his budget proposal.  The President’s FY2013 budget flat funds the Centers for Disease Control and Prevention (CDC) Division of Viral Hepatitis (DVH) at the total funding level of FY2012 – including the $10 million from the Prevention and Public Health Fund.  We need your help in raising awareness among Members of Congress about viral hepatitis and asking their support for increased funding for viral hepatitis activities at the federal level.  Viral hepatitis advocates are urging for protection of the President’s request and an increase to $59.8 million for DVH, which is $30.1 million more than the current funding level of $29.7 million.

In the next 2-3 weeks, all Senators and Representatives will write their “programmatic appropriations request letters,” which ask members of the Appropriations Subcommittees (who put together the federal funding legislation) to include funding for their priorities. The more Members of Congress that include a request for hepatitis funding in their letters, the greater the likelihood the Appropriators will include additional funding in FY2013.

Viral hepatitis impacts over 5.3 million people nationwide. With a lack of a comprehensive surveillance system, these estimates are likely only the tip of the iceberg and 75% of those infected do not know their status. Even with these daunting figures, there are only $29.7 million in federal funding dedicated to fund viral hepatitis activities nationwide at the CDC.  Members of Congress need to know that viral hepatitis is a concern in their district, that their constituents are being affected and that this is an issue they need to care about. We need you to tell your story and ask your elected representatives to take action by March 20.

Step-by-step instructions on what to do are below:

  1.  Determine what Members of Congress to contact.  You should contact your personal Member of the House of Representatives and two Senators.  You should also contact other House Members in areas where your organization is located or provides services.  To determine who your Representative is please go to www.house.gov and type in your zip code(s); to determine who your Senators are go to www.senate.gov and select your state from the drop down menu.
  2.  Call the Members’ Offices to get the name and correct spelling of their health staff person.  Email the staff using the draft email text below.  House staff emails are First.Last@mail.house.gov (john.smith@mail.house.gov) Senate staff emails are First_Last@Last name of Senator.Senate.gov (john_smith@doe.senate.gov)

Sample email:

Your Name

State and Zip code

Dear (Name of Health Staffer):

My name is ____________ and I live in City/State. I am writing to urge Representative/Senator________________ to include funding for viral hepatitis in his/her Fiscal Year 2012 programmatic appropriations request letter.  [Include brief details on the impact of viral hepatitis on yourself or describe your organization].

There are over 5.3 million Americans impacted by viral hepatitis but the only dedicated federal funding stream provides a mere $29.8 million through CDC.  This is insufficient to provide the most basic public health services such as education, counseling, testing, or medical management for people living with or at risk of viral hepatitis.

I urge Representative/Senator ___________ to support the President’s budget request of $29.8 million for FY2013 and increase the request to a total of $59.8 million for the Division of Viral Hepatitis to effectively combat these epidemics.  I will be following up with you in the near future to discuss this request.  In the meantime, feel free to contact me with questions.

Thank you again for consideration of my request.

Your Name

  1. Follow-up with the staff you have emailed with a phone call to confirm they received the request and to determine when they may have an answer from their bosses as to whether or not they will include a hepatitis funding request in their Appropriation programmatic request letter.  If asked, make it clear to the staff that this is a program request and NOT a project request (i.e. money for a district specific project like a bridge, hospital or university).  You may need to follow-up again around the time the staff says they will have an answer from their chain of command.
  2. If you need assistance or want to talk through the process please email or call Oscar Mairena at (202) 434-8058 or omairena@NASTAD.org. If the staff member requests “report language” or “program language,” please contact Oscar and he will provide that for you. Please also share positive responses with the Hepatitis Appropriations Partnership by contacting Oscar.

Oscar Mairena

Senior Associate, Viral Hepatitis/Policy and Legislative Affairs

National Alliance of State & Territorial AIDS Directors (NASTAD)

444 North Capitol Street NW, Suite 339

Washington, DC  20001

Phone: (202) 434.8058      Fax: (202) 434.8092

omairena@NASTAD.org     www.NASTAD.org

“Bridging Science, Policy, and Public Health”

 

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.

 

Hepatitis Health Action Alert: Stop the Attacks on Prevention and Public Health Fund

Action Alert! The Hepatitis Community Responds to Health Care Reform. Tell Congress Not To Cut The Prevention and Public Health Fund

The Prevention and Public Health Fund is under attack in Congress once again. Some leaders in the House of Representatives would like to make drastic cuts to the Fund as part of negotiations on a long-term deal on the payroll tax cut and Medicare payments rates to medical providers.

The Prevention and Public Health Fund, part of the Affordable Care Act, provides money each year for vital prevention and public health services. The fund will grow each year until it eventually provides $2 billion/year.

This fund is extremely important to the nation’s fight against the viral hepatitis epidemic. Later this year, the Department of Health and Human Services is expected to allocate $10 million from the Fund for viral hepatitis screening, testing, and education programs. This initiative will greatly help efforts to identify the millions of Americans who have chronic hepatitis B or C and link them to care and treatment.

Please take a few minutes to call Congress in support of this lifesaving program!

What YOU can DO:

Please call your U.S. House Representative and two U.S. Senators immediately. We are hearing directly from Congressional staff that phone calls are the most effective form of communication. 

Call the Capitol Switchboard toll-free at 1-888-876-6242 and ask to be connected to your United States Representative. When you reach your Representative’s office, tell whoever answers the phone that you are a constituent and that you would like to speak to the staff person who handles health care issues. Whether you speak to the staff person live or leave a voicemail, tell him/her:

“My name is _______________ and I live in (city/state). I am calling in strong support of the Prevention and Public Health Fund, which is an important part of the Affordable Care Act. This Fund is a great opportunity to provide badly needed funding for viral hepatitis prevention, testing, and screening programs and must be preserved. I urge Representative_____________ to oppose any efforts to cut the Fund as part of the payroll tax/Medicare physician reimbursement negotiations.”

After you speak to your Representative’s office, call the Capitol Switchboard again and deliver the same message to the health care staff person in your two U.S. Senators’ office.

Thank you for taking the time to make a difference! Please spread the word.

Get involved with Hepatitis Health Action!

  • Join Hepatitis Health Action’s Facebook group:  http://tinyurl.com/hephealthfacebook where you can participate in discussions with other advocates and share your ideas and strategies.

Hepatitis Health Action is a campaign led by viral hepatitis advocates working to make sure that health care reform addresses hepatitis B and C.

Viral Hepatitis Meetings in D.C.

Last week was an eventful week for this HBV blogger.  I was fortunate to be able to attend the National Viral Hepatitis Technical Assistance and the National Viral Hepatitis Round Table (NVHR) meetings in Washington D.C. last Tuesday and Wednesday. These meetings were followed by Capitol Hill visits on Thursday by viral hepatitis advocates to their legislative offices.

In attendance at the meeting were state viral hepatitis coordinators from around the country, other state health department personnel, government representatives from various agencies and organizations, and numerous viral hepatitis advocates from various non-profit organizations. It was a great opportunity to meet colleagues from all over the country dedicated to combating viral hepatitis in the United States.

Please keep in mind that my background is patient oriented, and that I do not have a master’s degree in public health, nor do I have experience working in the public health system.  Keeping up with the political front is challenging as is keeping up with the public health system. I’m still trying to figure it all out. Both have their own language and acronyms. After a couple of days of meetings, I have a great deal of respect for those working in public health at both the federal and state level.  I also have a great deal of respect for those working to push policy on behalf of viral hepatitis. There’s always more to learn, but you can still make an impact by jumping in and getting involved at a number of different levels.

A couple of messages were loud and clear at the meeting and you didn’t need to be an expert to understand them. Perhaps the biggest message is that funding for viral hepatitis public health programs is very limited and the burden is well beyond the level of funding.  This comes as no surprise since these are difficult times for both state and federal government programs.  This lack of funding will require that all health departments, government organizations and agencies, advocacy groups and non-profits pull together using what I call the 3-C’s:  communication, coordination, and collaboration.  Don’t forget to be creative, resourceful and wrap it all up with a coordinated IT system.

What was nice about this forum is that people were able to see what was going on in other states.  Bringing people together infuses new information into the group, while creating relationships where people want to help one another.  This is imperative if we are to address viral hepatitis needs with a minimal budget. One viral hepatitis coordinator reminded people during a break-out session that there are small pots-of-money out there, but you’re going to have to be creative when looking for grant opportunities.

Chris Taylor from the National Alliance of State & Territorial Aids Directors (NASTAD) asked me, and others to do a video-taped interview where I was asked about my personal hepatitis B story. This was a great way for me to make a contribution, and I was happy to help. Telling your story can be a compelling way to raise awareness and get involved.

Natalie Cole was in D.C. doing a press conference promoting her “Tune In to Hep C” campaign. NASTAD arranged for her to make an appearance at the NVHR meeting.  It’s always great to have a celebrity figure to promote a cause and raise awareness with the general public. They are able to reach so many people at one time!

Thursday’s Capitol Hill visits were a great opportunity for viral hepatitis advocates to get in front of their own Representatives in Congress, or their state Senators. Each person on the visit brought her talents to the table.  Some were up on politics, policy and the process, while others dealt with the hepatitis at the public health level.  Finally, there are people like me that are most familiar with hepatitis B on a personal level.

The meetings made it clear that we all need to collaborate and be creative if we are going to combat viral hepatitis.  Americans living with viral hepatitis may be wondering what Washington or their home-state is doing about viral hepatitis.  Things are being accomplished.  Based on the Institute of Medicine (IOM) report, we have the HHS Action Plan for the Prevention, Care & Treatment of Viral Hepatitis that was introduced last May.  Planning and process is currently being written around the plan.  People are in place and they are working hard, but the system and its processes are huge, complicated, and slow moving.  It is certainly not a perfect system, but we can all contribute at some level to make this an issue important to those that do drive policy, and ultimately fund programs.

Where do you fit in?  If you are in policy or public health you know you have a big job ahead of you, but it is essential that you keep looking for ways to move the system more effectively and efficiently. If you’re living with HBV, you might think you can’t make a contribution, but that is not true. This is where “arm-chair advocacy” comes in.  Not everyone is going to head to D.C. to meet with their Senator or Congress person. However, you can make your voice heard.  Visit your representative when she is home for constituent work week.  A simpler, but equally effective alternative is to write, call, email or tweet your Representative or Senator.  Let your Representative know that you are living with hepatitis B, and that you want him to support viral hepatitis legislation. Use your voice and make your vote work for those living with HBV in your state!

Hepatitis B Carriers Need Not Apply: Discrimination in China

Please take look at this video on HBV discrimination in China.  This isn’t a new story for China, rather an ongoing problem. Despite the high numbers of HBV infected persons living in China, discrimination is rampant.  One in ten Chinese carry the hepatitis B virus. The range of HBV discrimination in China is vast.  Life changing opportunities are lost due to rejection: rejection from school, lost employment opportunities, and even lost love, all due to HBV carrier status.  Even simple, every-day routines like meals with friends and family are impacted. Many of those infected are expected to eat separately, or carry their own bowl and chopsticks.  This is due to widespread ignorance on how HBV is transmitted.

An HBF friend told me Lei Chuang, the student in the video who was rejected from a top post-graduate University program due to his HBV status, is a very popular.  Evidently he is a very visible and admired anti-HBV discrimination activist in China.  Lei Chuang suspended his post-graduate studies in order to campaign against HBV discrimination. One of his on-going projects is an invitation to dine with the Chinese Premier. Every day he sends one letter to the Premier – 151 letters and counting. That takes a lot of courage.

Lu Jun is the director of the Beijing Yirenping Center.  He has been actively fighting discrimination in China, along with providing education, outreach and patient counseling.  His organization works tirelessly to defend the rights of those living with HBV by providing legal support for anti-discrimination lawsuits. He was also pivotal in creating the Chinese HBV internet forum, www.hbvhbv.com, creating a critical link between nearly half a million Chinese subscribers. (Keep in my that social media outlets such as facebook, twitter and Youtube are blocked in China.) Lu Jun is also a friend of the Hepatitis B Foundation, and joined us for our patient conference in June of 2008.

Having witnessed HBV discrimination in China, first-hand, I can tell you that I admire these men, and all others willing to take a stand and actively fight discrimination in their country. Not everyone is able to find their voice in this fight, so the sacrifice of these individuals is to be commended. However, whether outwardly speaking out or quietly behind the scenes, it is imparative that we all do our part to help raise HBV awareness.

Distinguished Doctor and Contributor to the Viral Hepatitis Community Dies

Dr. Emmet B. Keeffe, Professor of Medicine Emeritus at Stanford University in Hepatology, passed away unexpectedly on August 8, 2011 after a distinguished career in hepatology. He was sixty-nine years old.

Please join us in extending our condolences to the family, and many friends, colleagues and patients of Dr. Emmet Keeffe.  We are all saddened by his death. Dr. Keeffe was a major contributor in the viral hepatitis community and made significant contributions throughout his 42 years practicing medicine.  Dr. Keeffe had an impressive list of professional achievements, administrative appointments, honors and awards. His clinical research interests focused on the treatment of chronic hepatitis B and C, where he was a principle investigator for many clinical trials treating numerous patients.  Dr. Keeffe has been published extensively throughout his career.

Dr. Keeffe was a true thought leader in the field of hepatitis B who grasped all aspects of this liver disease. He created bridges of understanding between the science, medicine and patient experiences for the entire hepatitis B community. We will miss his active involvement and support of the Hepatitis B Foundation, but most importantly, we will miss his vital contributions to the science and medicine of chronic viral hepatitis.

Emmet B. Keeffe, MD

April 12, 1942 – August 8, 2011

 

Gearing up for World Hepatitis Day!

World Hepatitis Day is July 28th!  What are you doing to raise awareness and educate others about hepatitis B?  I asked this on HBF’s facebook page, and a friend from Ghana wondered what he could do to help raise awareness.  Another friend replied about his concern with HBV in Malawi.

When you consider the scope of hepatitis B, globally, it is indeed sobering.  Statistically, two billion people have been infected with hepatitis B worldwide, and 400 million are chronically infected.  Don’t let these numbers discourage you from your efforts.

When I returned from China in 2003, my heart was heavy with the burden the Chinese people experience on a day-to-day basis, living with HBV.  At the time I was providing infectious disease training for specific groups of Chinese people, but of course in the scheme of things, the outreach effort seemed minimal when compared to the burden.  I had to focus my efforts one-person-at-a-time.  I couldn’t let the sheer numbers discourage me from my mission to educate and raise HBV awareness at any level.

If you have the money or the connections to do something in a big way, that is wonderful.  Then many will benefit from your contribution.  However, I think it is important to note that hepatitis B education and awareness is fundamentally carried out at a grassroots level, where small numbers of individuals band together to make a difference.   Organizations like the Hepatitis B Foundation are crucial due to their ability to reach out and impact larger numbers of people through research, outreach, education and increased HBV awareness.  Utilize their website, social media channels and outreach to gain and share educational information, and help raise awareness.

So what can you do as an individual?  First thing you need to do is get educated on viral hepatitis.  There is much confusion among people about how HBV is transmitted.  If you mention hepatitis B, someone will invariably say, “oh yes.  My uncle got that from eating contaminated food!”  Well, he did get NOT hepatitis B from food!  Know the ABC’s of viral hepatitis, and eliminate these myths.  Hepatitis B is not spread casually, or by sharing a meal, hugging or kissing someone with hep B.  However, HBV is non-discriminating, and we are all vulnerable if we are not vaccinated.

Learn the facts about HBV.  Know some of the statistics, and how it is transmitted.  Know the difference between an acute infection vs. a chronic infection.  Know that 90% of adults will clear an acute infection, while 90% of infants infected will surely live with hepB for life.  Be sure safe injection and medical practices are followed in health care settings.

To raise awareness and eliminate confusion, you don’t have to know the details of surface antigens, antibodies or how to interpret blood test results.  You can look that up on HBF’s website!   This detailed info comes with time.  Start with the hep B basics.  If you are educated, you can educate others.

Learn about the HBV vaccination.  Know that if you are in a high risk group, you should be screened before you are vaccinated.  The vaccine doesn’t work if you already have hepB!  If you are not infected, then get vaccinated.  Let everyone know why vaccination is necessary.  Encourage pregnant women to be screened for HBV.  Ninety percent of  mother-to-child transmission of HBV can be eliminated by ensuring an infant receives a birth dose of the hepatitis B vaccine, followed by the other two shots in the series.  If HBIG is available to newborns of infected mothers, that is even better.

Many believe that hepatitis B will not affect them because they may not have symptoms. They do not realize HBV is a silent epidemic.  They may not realize the importance of their non-complaining liver, and how HBV can destroy it over time.

If you or loved ones have HBV, be sure you are vaccinated for Hepatitis A.  Take care of your liver and abstain from alcohol and tobacco use.  Eat a healthy diet, and practice safe sex.  Practice standard precautions.  Use common sense!

Now for the outreach part… Depending on your hep B status, you might be reluctant to share your new found information with everyone.  Start with your family, friends and household contacts.  They may not understand the global significance of HBV.  It’s okay to start small.

If you’re ready to increase your effort, then reach out to your church, and your community.  Join with others and participate in local city or village health center and community awareness events.  Join an HBV support group, and if you’re interested, create a language specific group for your country.  Volunteer, speak out, and help educate the masses of people who are unaware that HBV is truly a silent epidemic.

Together we can make a difference!

Impressions of the Congressional Briefing and HHS Viral Hepatitis Action Plan Press Release

Last Thursday, May 12th, I attended the Congressional Briefing, and the Press Conference releasing the U.S. Department of Health and Human Services (HHS) Action Plan to Prevent, Care and Treat Viral Hepatitis, in Washington D.C..  The HHS Action Plan is in response to the 2010 Institute of Medicine (IOM) report on viral hepatitis.

I have been involved with viral hepatitis, specifically hepatitis B, from a patient perspective for over a decade, but my recent involvement in the political arena is new.   So, I’m still struggling with the numerous acronyms, political calendars and jargon…

It was encouraging to see members of Congress in attendance at the Congressional Briefing – hosted by U.S. Senator John Kerry (D-MA) and Rep. Mike Honda (D-CA), but it is clear that viral hepatitis needs more champions in Congress.  Congressional leaders who spoke included Rep. Honda (D-CA) , Rep. Cassidy (R-LA), Rep. Judy Chu (D-CA), Rep. Dr. Christensen (D-VI), Rep. Barbara Lee (D-CA), and Rep. Dent (R-PA).  Federal public health leaders Dr. Howard Koh, Assistant Secretary of Health, and Dr. Kevin Fenton, Director, National Center for HIV/AIDS, Viral Hepatitis, STD and TB Prevention of the CDC  spoke regarding the direction and implementation of the plan.

Congressman Honda’s message was loud and clear to the audience:  “You need to be the megaphone.”  As advocates we need to educate and get our representatives on-board. The other, clear message is that the plan is a strategy with the tactics not yet clearly defined.  More importantly, there is no clear funding dedicated to the roll-out.  Rep. Bill Cassidy, a hepatologist, tells us we must be “fiscally responsible”, and yet he also said “Sometimes you have to increase the budget to reduce the deficit”.  Rep. Donna Christensen, also a doctor, states:  “We can save money and reduce the debt” with the viral hepatitis plan.  As a hepatologist and physician, these representatives understand that money spent on patient education, screening, prevention and treatment will be cost effective over time.  I wonder how many Representatives truly understand the ticking time bomb of this silent epidemic.

The representation at the press conference in D.C. was encouraging –everyone in the room with the same goals.   Dr. Susan Wang, a doctor in NYC spoke of her patient base where one in eight patients are infected with HBV.  Michael Ninburg told his personal story with his fight with hepatitis C, and the successful prevention of HBV from his chronically infected wife to their newborn son.  Michael was cured with the new HCV drugs, and his son was protected by a safe vaccine.  All good.

The HHS Action Plan for Viral Hepatitis will roll out through 2013.  Some of the goals are more attainable than others, such as delivering the first birth dose of the HBV vaccine to infants prior to discharge.  Dr. Koh describes this as the “first shot of life.” Administering prophylaxis and vaccination to infants born to HBV infected mothers is also feasible.  Other goals are loftier, less clearly defined, and will require significant funding.

Dr. Fenton, of the CDC, tells us the viral hepatitis plan will be implemented as a collaborative effort, leveraging resources between government agencies such as HHS, HRSA (Health Resources and Services Adminstration , CDC (Centers for Disease Control), and CMS (Centers for Medicare and Medicaid Services). 

Portions of the plan are dependent on the Affordable Care Act (ACA) and Health Care Reform, which are under attack.  It will be important for these programs remain intact for the plan to be successful.

We are all well aware of shrinking budgets and the need to be fiscally responsible, keeping in mind the human component.  This plan cannot be implemented without collaboration and cooperation between government and community organizations and efforts, and most importantly – funding.

That’s where we, as voting Americans, fit into the equation.  We need to get educate our Representatives and Senators by raising their awareness of viral hepatitis.  We need to tell them there is a plan to combat viral hepatitis.  We need to personalize this, tell our stories, and let them know that we do NOT want funding for viral hepatitis cut from the budget.  

Was your Representative present at the briefing?  Mine was not…

Visit your Representative during Constituent Work Week.  Write a letter, send an email, call and speak to a health staffer, or tweet your Representative, today.

Read the HHS Action Plan to Prevent and Treat Viral Hepatitis.

Happy 20th Anniversary to the Hepatitis B Foundation!

Hepatitis B Foundation 20th Anniversary Gala

 

Join the Hepatitis B Foundation with this short, fun, YouTube video with great snapshots and music as the Hepatitis B Foundation  celebrates its 20th Anniversary.  The Hepatitis B Foundation is the only national non-profit organization solely dedicated to the global problem of Hepatitis B. 

If you want to know more about HBF, check out our mission and story.  We’ve had some great accomplishments over the last year, so take a moment and review our  2010 annual report, and see what contributions HBF has made to hepatitis B research, outreach, and advocacy.

Call to Action! Urge Your Members of Congress to Attend Viral Hepatitis Congressional Briefing!

On Thursday, May 12th, Congressman Mike Honda and Senator John Kerry will hold a Congressional briefing entitled “Combating the Hidden Epidemic: U.S. Department of Health and Human Services Action Plan for the Prevention and Treatment of Viral Hepatitis.” This briefing will inform Members of Congress and their staff about the long-awaited report from HHS that will detail the federal government’s strategy for combating hepatitis B and C in the United States.

The release of this report and the briefing offer a tremendous opportunity to change the course of the viral hepatitis epidemic in the U.S. and demonstrate Congressional leadership in moving forward a comprehensive prevention and treatment strategy.

We need as many Members of Congress and their staff to attend this briefing to show their commitment to implement and fund the HHS plan. You can help make this happen by making three important phone calls right now!

How you can make a difference:

Call the Capitol Switchboard toll-free at 1-888-876-6242 and ask to be connected to your U.S. Representative. When you are connected, ask for the staff person who handles health care issues. Whether you speak directly to the staff person or leave a message, tell him/her:

“My name is _____________ and I live in (city/state). I am calling to urge Representative _____________ to attend a Congressional briefing on fighting the viral hepatitis epidemic in the United States. This important briefing will outline the new HHS “Action Plan for the Prevention and Treatment of Viral Hepatitis.” The briefing will be held on Thursday, May 12th, from 9:30 – 11:00 am in 210 Cannon House Office Building. Please contact Meina Banh in Congressman Mike Honda’s office for more information and to register. In the next 10 years, about 150,000 people in the United States are projected to die from liver cancer and liver disease associated with chronic hepatitis B and C. I strongly urge your office to participate in this briefing and show your commitment to fighting these preventable diseases.”

Next, call both of your two U.S. Senators (using the Capitol Switchboard number) and deliver the same message to their health care staff.

You can also ask the staff person for his/her email address and forward the attached “Dear Colleague” letter with more information about the briefing.

Thank you for taking the time to make a difference!

This Action Alert was created by the Hepatitis Appropriations Partnership, the National Task Force on Hepatitis B: Focus on AAPIs, and the National Viral Hepatitis Roundtable.