Please join the Hepatitis B Foundation’s Liver Cancer Connect program and world-renowned liver disease specialist, Dr. Robert Gish for a webinar on Monday, April 27th 12 noon EDT to learn about liver cancer treatment. How does the stage of the cancer affect treatment? Why are screening and surveillance so important? What are the available treatments and what are the therapies in development? Continue reading "Webinar on Treatment Options for Liver Cancer: What You Need to Know"
Representatives 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:
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
Liver cancer is the world’s second leading cause of cancer deaths, according to the latest World Cancer Report 2014 released by the International Agency for Research on Cancer (IARC), which is the specialized cancer agency of the World Health Organization (WHO). About 800,000 deaths per year are related to liver cancer. Continue reading "The World’s Second Deadliest Cancer Is …Preventable"
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).
Thank you to Prof., Dr. Muhammad Sadik Memon, MBBS, FCPS (Gastro), FCPS (Med), MACP, MAGA, for his personal reflection from World Hepatitis Day, 2012 events in Pakistan.
Gastroenterologists, family physicians, GPs, postgraduate students and para- medical staff all participated in the open discussion.
The program was started in the name of “Almighty Allah” and a recitation from the Holy Quran.
Dr Iqbal Haroon, Director of Hajiyani Hospital, was the moderator of the open discussion.
“It is closer than you think” was the theme of this year’s World Hepatitis Day, and the open discussion focused on raising awareness on the different forms of viral hepatitis: what they are, how they are transmitted, who is at risk, and the various methods of prevention and treatment.
Professor, Dr. Sadik Memon, organizer of this event, said that in Pakistan, many patients have lost their lives at the hands of quacks, so Pakistan needs the strictest possible laws to fight against these quacks, and must eradicate these deadly liver diseases.
Dr. Sadik Memon further described how in Pakistan millions of people are infected with HBV . He added that every 10th to 12th individual in the Pakistani population is infected with hepatitis B or C ,which far exceeds the numbers from the last big earthquake in Pakistan. It is essential that Pakistani doctors unite to save human lives and spare them of these deadly diseases.
The most important aspects of prevention are hepatitis B vaccination, the screening of blood products, sterilized equipments and better hygiene standards in barber shops.
Dr. Waqar, focal person of the Government Hepatitis Program, discussed the efforts of the Sindh government regarding the hepatitis program. He said that thousands of peoples from Sindh are receiving free interferon and anti- viral therapy from Zakat and Bait-ul-mal funds.
Before the end of open discussion Dr. Aamir Ghouri gave thanks to the audience, the guests of honor, and also the Roche Pharmaceutical company for sponsoring such a wonderful event in this blessed Month of Razman.
After completing the open discussion, DUA, (prayer) was performed for patients who are suffering from liver diseases by the Asian Institute of Medical Sciences staff. Another open discussion was followed by Iftaar dinner. It was a memorable World Hepatitis Day.
Saturday, May 19th is the first National Hepatitis Testing Day. Viral hepatitis partners will be working together with local health departments and other community partners in to bring viral hepatitis testing events to a neighborhood near you. Hep B United Philadelphia and the Hepatitis B Foundation and other partners will be holding screening events in downtown Philly.
Why is hepatitis testing necessary? Hepatitis B is largely asymptomatic – until it is too late, or caught with blood donation screening, or lab work. There are clearly defined risk factors for hepatitis B, or groups that are at greater risk, but there are also less clearly defined risks, or just bad luck. Think about this list and ask yourself if you might want to think about getting tested. If you are young, or when you were younger, was your behavior ever wild or impulsive? Are you a little older and you’re still a little impulsive, or occasionally wild? Did you ever get drunk, or do drugs – even once, or perhaps “lose a night”? Did you have unprotected sex, or do you have multiple partners? If you are monogamous, are you sure your SO is equally monogamous? Does a friend or family member possibly have a known or even an unknown infection? Maybe they know, but they aren’t telling you. Do you like traveling the world? Outside of the U.S. there are some really wonderful places that have an extremely high HBV prevalence. Roughly 40% of Americans have tattoos, or various piercings. Did you check out the shop- not for the artistry, but for infection control practices before you got your tatt? Ever borrowed a razor or nail clippers or other personal hygiene tools from someone else? How about the nail salon? Do enjoy a good pedicure? Things happen. People are different, they have different lifestyle choices. People make mistakes. They change. Things happen.
Sometimes I take calls from people that call HBF’s consult line. In the last couple of weeks I have spoken to a few consults that do not necessarily fit the standard at-risk profile for hepatitis B. One was an older, senior citizen, who is a regular blood donor, but just recently tested positive for hepatitis B during her most recent donation. Because her blood was being regularly screened, it appears clear that she has an acute case of hepatitis B. She can’t figure out how in the world it happened. She is not having sex, nor is she an injecting drug user. She lives in a small town, and does not have any family from other parts of the world where there is a high prevalence of HBV such as Asia, sub-Saharan Africa, parts of Central America. She is dumbfounded by this diagnosis.
Another consult was concerned about his wife who had also contracted an acute case of hepatitis B. They’re also a little older and in a monogamous, married relationship. After speaking with him, we determined she likely contracted her infection through her job. She works as a cleaning woman. Although most people are not symptomatic, this woman was quite symptomatic for HBV and required close monitoring. After discussing her case with her husband, I recommended that he also be tested, though he was sure he could not be infected since he had no symptoms. He called me last week to tell that he was in fact, acutely infected. He is stunned.
I am not here to judge anyone’s apparent risks or lack of risks. I am only here to answer questions about their hepatitis B infection. Hepatitis B is not casually transmitted, but it is one-tenacious virus that can effectively be transmitted through infected blood and body fluids.
Fortunately, there is a safe and effective 3-shot vaccine series to protect us against hepatitis B. However, the vaccine doesn’t work if you are already infected. Remember, HBV does not discriminate. B sure. B tested. If you are do not have HBV, then give yourself lifelong protection with the hepatitis B vaccine. If you find you do have hepatitis B, talk to your doctor about further testing. Don’t forget to check out those free, confidential hepatitis screenings this weekend!
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.
This month’s Clinical Infectious Diseases evaluated the transmission of HCV through tattooing and piercing. It is important to note that HBV is also of great concern when considering a tattoo or piercing. Unless you are vaccinated against hepatitis B, you are at risk for HBV if you are tattooed or pierced under unsterile conditions. The net-net is if you have a tattoo or piercing in a professional parlor – one that follows infection control practices and uses single-use items whenever possible and sterilizes re-used equipment using ultrasonic cleaning and sterilization with an autoclave , there does not appear to be an increased risk, though additional study is warranted. However, tattoos or piercings in prisons, or other settings that are not performed under sterile conditions are a serious danger.
The process of tattooing entails repeated injections of tiny drops of ink. That’s thousands of tiny needle sticks per minute, and a very effective transmission route for blood borne pathogens like HBV, HCV and HIV. This does not mean getting a tattoo will expose you to infectious disease, but if you choose a tattoo parlor that is not well regulated and safely follows all infection control practices, then you greatly increase your risk of infection.
Here’s the problem with tattoo parlors in the United States. They are not carefully or consistently regulated. There are no federal regulations. For the most part they are state regulated, with each state having its own rules and regulations. Regulated states require that tattoo parlors have permits, and be inspected. Who inspects the parlor? – Sometimes it’s the State Department of Health, and sometimes it’s the local health department, so the inspections vary. There are some states with local regulations within the state, and even a few states with NO regulations. That is worrisome and dangerous. What are the rules and regulations for your state on this unofficial list? (Please read the site disclaimer) Do the research on the rules in regulations in your state, or city before looking for a tattoo parlor.
What does this mean if you’re considering a tattoo? Your tattoo is a personal decision that will live with you for the rest of your life. You don’t want to contract an infectious disease that may also live with you for the rest of your life and potentially threatens your life. Shop for a clean, parlor that treats each tattoo like a mini, out-patient procedure – with all infection control practices followed. You want a tattoo parlor that uses single-use needles, ink, ink cups, and gloves. You want to see these tools come out of their sterile packaging –right in front of your eyes. You want a tattoo parlor with a functioning, inspected autoclave so that re-usable tools such as tattoo machines and needle bars can be properly sterilized. You want a tattoo parlor that is clean and an artist that washes his hands and wears gloves. If the shop is dirty, keep looking. Speak up and ask the artist questions about his shop and his infection control practices. Don’t forget to ask to see the autoclave. If anything makes you wary about the visit, look else-where.
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!
Hepatitis Health Action is a campaign led by viral hepatitis advocates working to make sure that health care reform addresses hepatitis B and C.
It was an interesting couple of weeks for viral hepatitis vaccines. A potential vaccine for Hepatitis C appears to be on the horizon, and China announced it has approved a vaccine for use for hepatitis E virus (HEV).
What does this mean if you have hepatitis B? I’m not sure. If you are living with HBV, it is clear that it is best to avoid coinfection with another hepatitis virus or infectious agent. Coinfection will likely hasten liver disease progression and increase the risk for liver cancer. At this time, the hepatitis A vaccine is recommended for those who are infected with HBV in order to avoid additional stress to the liver. Please keep in mind that the mode of transmission is the same for HBV and HCV, but is different for HAV and HEV. It’s important to keep your viral hepatitis ABC’s straight!
Hepatitis E is a self-limiting disease, which is shed in the feces and transmitted via contaminated water and food – very much like HAV. Although HEV is an acute infection like hepatitis A (HAV), it has about a 3% overall mortality rate and a much higher rate among pregnant women, and solid organ transplant recipients. It predominantly affects those between the ages of 15 and 40 years. HEV is endemic in Central and South-East Asia, North and West Africa, Mexico and developing nations where there may not be access to clean water and proper sanitation and hygiene. At this time, it is not prevalent in the U.S., but we are a traveling nation, and it’s something to think about when traveling abroad.
The HEV vaccine, developed by Xiamen University and Xiamen Innovax Biotech Co. Ltd. is a three-shot series : shot one followed one month later by shot 2, followed by shot 3 six-months after the third shot. The phase III trial results were found to be well tolerated and safe for the general adult population. This would make the HEV vaccine a good choice for travelers in endemic areas who can receive adequate protection with a 2-shot series in one month.
However, these results for the phase III study were for the general population only and did not include children, adults over 65 years, pregnant women and those living with chronic liver diseases such as HBV or HCV. If you are infected with HBV, it would make sense to be vaccinated against a virus that can cause additional harm to the liver, but at this time, additional research needs to be done ensuring the vaccine will benefit those living with hepatitis B or C.
