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Hepatitis B Advocacy

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.

Hepatitis B Diagnosis & Monitoring, Living with Hepatitis B

China Approves Hepatitis E Vaccine – What that means if you have HBV

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.

Hepatitis B Advocacy

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 Advocacy

Distinguished Doctor and Contributor to the Viral Hepatitis Community Dies

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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

 

Uncategorized

A World Hepatitis Day Message from Dr. Philanbangchang, WHO South-East Asia

This World Hepatitis Day message by Dr. Philanbangchang, WHO South-East Asia addresses some of the many challenges of viral hepatitis in the South-East Asia region, and also applies to other areas of the world.

However, it is interesting to first note some fast facts specifically about hepatitis B…

 

 

  • The statistics on hepatitis B are staggering.  Two billion people worldwide have been infected with HBV.  That’s one in three people globally, and one in twenty in the U.S..  Four hundred million are chronically infected, and approximately two people die each minute as a result of hepatitis B.
  • Hepatitis B is transmitted through blood and bodily fluids.  It is readily transmitted from mother to child at birth, and children born with HBV have a 90% chance of life-long infection.
  • HBV is called the silent epidemic because it is often asymptomatic. Many have no idea how they acquired the virus.
  • Sadly, HBV leads to terrible discrimination and stigma throughout the world.  Family members, workers, and children are shunned and opportunities are denied.
  • Hepatitis B is not curable, but there are excellent treatments available. However, not everyone needs to be treated, but everyone needs to be monitored.
  • The good news is that hepatitis B is vaccine preventable.  Children must be vaccinated at birth to prevent the transmission from mother to child, and people at high risk must be screened before they are vaccinated.  The HBV vaccine does not work if you are already infected with HBV, but it will protect family, sexual partners and household members.  It would be great if the HBV vaccine were universally recommended, available and funded…
  • Practicing simple standard precautions is another way to prevent the transmission of infectious disease – especially those diseases for which there are no vaccines.  If you have hepatitis B, it is best to avoid coinfection with other infectious diseases such as HCV and HIV.  Practice safe sex.  Do not share needles and follow basic prevention methods.
  • With a safe and effective HBV vaccine, good treatments with new treatment protocols on the horizon, it is our hope that hepatitis B will soon be eradicated.
  • It is essential that everyone know the FAQs about hepatitis B.  It is a preventable disease, and we all need to do our part to ensure we prevent the spread of HBV, and treat those living with hepatitis B with the compassion they deserve.

And now a message from Dr. Philanbangchang…

Viral hepatitis kills more people than any other communicable disease in the South-East Asia Region. In the next 10 years, over five million people in the region is projected to die from this disease and its consequences.

Today, more than 130 million people in South-East Asia alone, carry the hepatitis B or C virus, even though they may appear healthy. It usually strikes people at their most productive age.

The hepatitis B virus is 50 to 100 times more infectious than HIV, and just as lethal. Hepatitis E results in 2700 still births every year. For such a major public health threat, hepatitis has a low profile, among policy-makers and the public.

Recognising hepatitis as a threat to public health, the World Health Assembly passed a resolution to prevent and control the disease last year. The World Health Organization has decided to observe July 28 this year as the world’s first ever World Hepatitis Day.

It is thus an opportune time to ask if we are doing enough to protect ourselves from this disease?

Many people recognise the symptoms of jaundice by the yellowing of the eyes and skin. Yet, jaundice is only the face of the disease and the common symptom for any of the four common types of viral hepatitis. These are easily contracted from drinking water to casual contact to sexual intercourse. Even then, not every infected person shows symptoms.

WHO is developing guidelines, strategies and tools for surveillance, prevention and control of this disease. Prevention and focussing on the source and mode of spread of the virus, is crucial to control this disease.

Chronic hepatitis B and C are among the leading causes of preventable deaths in 11 countries of the region. About 100 million hepatitis B carriers, and 30 million hepatitis C carriers, live in South-East Asia.

However, about 60 percent of the infected are unaware of their status until the disease manifests as cirrhosis or liver cancer – an aggressive cancer without a cure. Hepatitis C, in particular, has no vaccine or effective cure. Those who undergo blood transfusion, as well as injecting drug users, are at risk.

Due to lack of knowledge and resources among healthcare workers, many providers in the region do not comply with WHO’s and national guidelines and recommendations for hepatitis B and C screening, prevention, treatment and follow-up services. A patient requiring transfusion may receive blood that has been screened for HIV, but not for hepatitis B or C.

The hepatitis B vaccine can go a long way to prevent hepatitis B. It is more than 95 percent effective in preventing infections and their chronic consequences, and is the first vaccine that protects against a major human cancer. In WHO’s South-Asia Region, more than 130 million infants have received the three required doses of hepatitis B vaccine.

Hepatitis infection is also linked to personal hygiene, sanitation and urban health – hepatitis A and E are both commonly spread through eating or drinking contaminated food or water. Pregnant women are at high risk of hepatitis E. Hepatitis E acquired during pregnancy is also associated with prematurity, low birth weight and an increased risk of perinatal mortality.

In countries of WHO’s South-East Asia Region, more than 6.5 million people are infected with hepatitis E annually accounting for half the cases worldwide, leading to an estimated 160 000 deaths.

Hepatitis E outbreaks often occur in urban areas when leaky underground water pipes are contaminated with sewage. In developing countries, with increasing population pressure and rapid urbanisation leading to people living in close, unsanitary conditions, such diseases are likely to increase rapidly.

So what can be done to prevent and control hepatitis?

To begin with, all countries, especially those urbanising rapidly, need to make hepatitis a health priority. Lives could be saved through simple preventive measures such as hand washing, eating cooked food and boiled water, using condoms and not sharing needles.

Countries need to make screening of all blood and blood products for hepatitis B and C mandatory. Governments should ensure that children are adequately immunised against hepatitis B. Healthcare workers, and the public, need to be educated on the risks and the surveillance system for hepatitis needs to be strengthened.

Unless we act now to create greater awareness among policymakers, healthcare workers, and the public, viral hepatitis will remain a major public health threat.

Dr Samlee Plianbangchang
Regional Director
WHO South-East Asia

 

Hepatitis B Prevention, Living with Hepatitis B

Hepatitis B and Your Neighborhood Pool

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Photo by Sheila http://ht.ly/6eRlt

Memorial Day marks the unofficial beginning of the summer, and with it, the opening of the community pool.  Every summer, questions regarding hepatitis B and the public pool are asked.  Typically it is those that are infected, or have children that are infected with HBV, that have concerns.  Hepatitis B is 100 times more infectious than HIV.  Does that mean you should be worried about contracting or spreading a blood borne pathogen like hepatitis B at the community pool?  Personally I don’t believe so, but there are a couple of things to consider.

If you’re concerned about a blood spill in the pool water than do not worry.  As long as you are frequenting a well-maintained pool that follows guidelines for consistently monitoring chlorine and pH levels in the pool, you’ll be fine.

Use common sense when at the pool.  Check that the water is clear, and the sides aren’t slimy. If the odor of your pool is too strong, something may be off.  Speak with management if you have concerns.  Pool staff are responsible for keeping water safe.  There are strict guidelines that must be followed.  Still have doubts?  Purchase your own pool test strips to confirm disinfecting quality of the pool.

Blood spills on the deck are a plausible transmission route for blood borne pathogens like HBV, but this hazard can be readily averted with proper cleanup.  Chlorine is a very effective agent against hepatitis B and other pathogens.  When made fresh and used in the correct concentrations, (nine parts water to one part chlorine) it kills pathogens like HBV.  As a team manager of a neighborhood swim team, I found the lifeguard slow to clean up a blood spill on deck.  The protocols are in place, but everyone needs to be vigilant to ensure they are followed.  If you have HBV and are bleeding on deck, don’t be afraid to insist that the blood spill be properly disinfected.  There’s no need to disclose your status.  These are standard precautions that should be followed for all blood and other body fluid spills.

The big culprit at the pool is swimmers with diarrhea.  Diarrhea causing germs may survive even in a well-maintained pool.    Chlorine resistant Cryptosporidium, also known as “Crypto”, is one such microbe.  One inadvertent gulp of contaminated pool water and it’s possible you, too, will contract diarrhea.  The good news is HBV is not spread via contaminated water, or the oral-fecal route.  Know the ABC’s of viral hepatitis!  Keep little ones out of the pool if they have diarrhea, make frequent swim-diaper changes, and don’t count on the plastic swim pants to keep everything in.  Oh, and don’t let the kids drink the pool water.  Parents, good luck with that one!

There are legitimate dangers lurking at the pool – a recent recall on pool drain covers jeopardize the safety of children, the risk of drowning and injury always exists, and of course there’s the risk of diarrhea causing illnesses.  Fortunately the odds of transmitting or contracting HBV are infinitesimal in a well maintained pool.  As always, remember that HBV has a safe and effective vaccine. Be sure those you know and love are vaccinated.

Beat the heat at your neighborhood pool this summer.  And finally, if your public pool looks like this… well, common sense would tell you there’s a lot more to worry about than hepatitis B!

 

Hepatitis B Advocacy, Hepatitis B Prevention

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.

Hepatitis B Advocacy

Hepatitis Health Action Alert: The Hepatitis Community Responds to Health Care Reform

ACTION ALERT!

Prevention funding in Health Care Reform is under attack.

Tell your representative to vote NO on H.R. 1217

On April 5th, the assault on the Affordable Care Act continued when the House Energy and Commerce Committee voted along partisan lines in favor of H.R. 1217, which would repeal the Prevention and Public Health Fund. This fund, part of the health care reform law, 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 offers a great opportunity to get some of the money targeted to viral hepatitis prevention, screening, and testing programs. We cannot advocate for that money if the entire fund is repealed. We also must protect this fund as part of defeating the ongoing strategy by those who oppose the Affordable Care Act to attack the law by repealing and de-funding its important pieces.

The full House of Representatives is expected to vote on H.R. 1217 as early as this week. Please take a few minutes to call your Representative and tell him/her to vote NO.

Here’s what YOU can DO:

Please call your U.S. House Representative 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 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 voice mail, tell him/her:

“My name is _______________ and I live in (city/state). I am calling to urge Representative ____________ to vote no on H.R. 1217. This bill would repeal 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.”

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

Get involved with Hepatitis Health Action!

·         Sign up for the Hepatitis Health Action email list by visiting http://groups.google.com/group/HepHealth or, email Christina at cchun@projectinform.org and we will make sure you are added.

·         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.

·         Follow Hepatitis Health Action’s blog for news and commentary: http://hephealthaction.wordpress.com

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

Baruch S. Blumberg Institute