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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.
We’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).
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
Tagged Cancer research, deadliest cancers, Fibrolamellar Cancer Foundation, Fibrolamellar carcinoma, hepatocellular carcinoma, liver cancer, National Institutes of Health, Rare Diseases Day, Sequestration
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livercancerconnect.org
Welcome to the newly launched blog from Liver Cancer Connect, the Hepatitis B Foundation’s dedicated program on liver cancer. The blog will focus on issues that affect families facing liver cancer.
On the recent World Cancer Day 2014, we ushered in the new year with both sobering news and some optimism.
First the sobering news. The American Cancer Society recently reported1 that the number of new cases of liver cancer and the number of deaths due to this disease continue to increase.
The rate of liver/bile duct cancer has risen by 3% to 4% per year and mortality by about 2% over the past 2 decades. In sharp contrast, the death rate for all cancers combined has been steadily declining over the same period and the number of new cases has decreased for most cancers.
Liver cancer is the fifth most common cancer in the world, and the third leading cause of cancer-related deaths. In fact, every 30 seconds, one person in the world dies of liver cancer.
Yet liver cancer is largely preventable!
Eliminating the main risk factors for liver cancer — chronic hepatitis B and C infections and fatty liver disease — can stop the development of liver cancer.
Chronic hepatitis B and C infections, which cause about 85% of liver cancers worldwide, are preventable and treatable. A safe vaccine against hepatitis B (the world’s first anti-cancer vaccine) has been available since 1986. And while a cure is not yet available, hepatitis B infections can be kept under control with effective treatments. There is no vaccine yet for hepatitis C, but it can be cured. And fatty liver disease can be prevented by maintaining a healthy weight and diet.
Equally important in preventing liver cancer are screening and surveillance, which help to find the cancer early. Screening is the first test that a person undergoes to detect either an increased risk for liver cancer or the actual presence of the cancer. Surveillance refers to the regular monitoring for liver cancer on a ~6-month basis.
Early detection increases the number of treatment options available and the chances of successful treatment. A targeted oral therapy called Nexavar (sorafenib) is currently approved for liver cancer in more than 70 countries, and researchers are looking for new ways to fight liver cancer with fewer side effects. Many of these potential new treatments are being studied in clinical trials.
So there is room for optimism. With greater public awareness of the risk factors and how to prevent them, and new therapies being developed, it is possible to reverse the bleak statistics for liver cancer.
With the rallying call, “Liver cancer is preventable!” Liver Cancer Connect is putting the spotlight on the prevention of liver cancer.
Our patient-focused website (www.livercancerconnect.org) explains the main risk factors for liver cancer and the importance of screening, surveillance, and early intervention. Over the next few months we will be expanding the resources on the website and bringing you more news and information on liver cancer. We encourage you to explore the website and send us your comments.
1. Siegel R, Ma J, Zou Z, Jemal A. Cancer Statistics, 2014. CA Cancer J Clin 2014 (epub ahead of print).
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Enjoy last year’s video from HBF and HBU’Photo Flash Mob. It was a fabulous awareness raising event!
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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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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.