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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!

Living With HBV and Drinking Coffee

The pros and cons of drinking coffee have been wildly debated for years.  However, for those with Hepatitis B and other liver diseases, the addition of a couple of cups of coffee per day to slow down the progression of liver disease, along with decreasing the risk of diabetes and heart disease just makes sense.

Dr. Melissa Palmer was a guest speaker at a previous Hepatitis B Foundation patient conference. The information from her presentation had all sorts of nutritional nuggets for those with HBV (Check out Dr. Palmer on podcast if you would like to have a listen!) She stated, based on studies, that coffee and caffeine intake has been associated with improvements in liver ALT and AST levels.  There also seems to be a correlation between increased coffee consumption and warding off cirrhosis and HCC.

Just recently there are was an article that discussed the benefits of coffee for those patients with HCV, undergoing treatment with pegylated interferon (PEG) and ribavirin therapy.  It claimed that drinking three or more cups of coffee a day not only reduced some of the difficult side-effects associated with treatment of PEG, but it also increased the treatment success.  However, like so many of these coffee studies, it was a small study and had to be adjusted for other factors.

We all know that HBV and HCV are very different viral infections, but you have to wonder if any of the benefits of coffee that is seen in those being treated for HCV can be extrapolated to include those with HBV being treated with Pegylated interferon or antivirals.  Dr. Palmer did mention that coffee did seem to have a greater impact on those with hepatitis C, although I have no idea why.

Regardless, if you’re living with HBV, you have to think about the pros and cons of adding coffee to your daily list.  Since all studies seem to show an increased number of cups of coffee having a more positive impact on preventing liver disease progression, or warding off cirrhosis or potentially reducing PEG side effects or benefiting treatment, you have to consider just how much caffeine you can take.  It does not appear that caffeine is the only factor involved, but rather the coffee bean itself and associated antioxidant features.  This seems to be the case because tea, despite all of its benefits, does not appear to have the same protective effect on the liver.

What about decaffeinated coffee?  I kept looking to see if it was specifically referenced, but I haven’t seen it. However, during the decaffeinating process, much of the bean is lost, and it may be treated with a chemical solvent, both which might nix the positive benefits.  If you’re going to give decaffeinated coffee a try, consider a coffee with a more natural decaffeinating process. Personally, I’d have a tough time balancing the jitters and racing heart rate associated with drinking more than a cup or two of high-test coffee a day, but we’re all individuals.  If you can drink coffee and sleep well at night, it seems like it can’t hurt your liver health to add a few cups to your daily regimen.

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 staggeringTwo 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 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.