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Operation Storm Philadelphia City Council : The Aftermath

Operation SCC 01

Hepatitis B Foundation Intern and Guest Blogger Limi Lo shares her personal reflection of last week’s advocacy event when hepatitis B partners and advocates stormed Philadelphia City Council 

A few months ago, I was sitting in my public policy class learning about advocacy. In simple English, it means, “to fight for a cause that you believe in.” As much as I understood what it meant, I never thought I would take part in a real advocacy event until I attended the City Council resolution presentation on May 8th, 2014. The event was held at the Philadelphia City Council during a city council session, and included supporters from Hep B United Philadelphia (lead by the Hepatitis B Foundation), HepCAP, and Philadelphia County Medical Society. Together, supporters came out and advocated for better viral hepatitis care in the greater Philadelphia area. City Councilman David Oh had introduced a resolution declaring May as Hepatitis Awareness Month and calls for all high-risk Philadelphians to receive appropriate testing and proper care for viral hepatitis.

The event not only provided me with a valuable learning experience, but more importantly, it was a life changing experience. I was able to witness community partners, students, professors, and other advocates coming together to help raise awareness and fight for a substantial cause (to improve hepatitis care). There were dozens of posters held high and being displayed: “Be proactive, get tested today”, “know more hepatitis”, and “Give hope to your family”. These messages were inspirational in addressing the need for city leaders to pay greater attention for the silent epidemic of viral hepatitis. Throughout the event, the atmosphere was filled with positive energy and a sense of hope was tangibly present—a hope that, in Philadelphia, all high-risk individuals can access screening tests, vaccines, and care for viral hepatitis.

Since beginning my practicum with the Hepatitis B Foundation, I’ve gained a variety of hands-on experience to raise community awareness, such as through screening events, providing linkage to care and now, participating in public health advocacy. I am grateful to be working with passionate and motivated individuals that want to make a difference in their community. Although, there is still much work to get done in improving the care for viral hepatitis, I can already feel the positive impact we are making as a community. The City Council event was a major stepping stone in advocating the cause at a local level and it was a huge success. I know in the near future, more and more people will become aware of the hepatitis issue and attention will be brought up to the federal and state level. But until then, let’s all be heroes and help save lives through advocacy.

 

Re-energized in Our Mission … A Message from Joan Block of HBF

Historic ruling now officially recognizes HBV infection as a protected disability under the Americans with Disabilities Act.

What a difference two years make. In 2011 the Hepatitis B Foundation celebrated its 20th anniversary and we were ready to rest awhile on our laurels after working so hard. But instead, we rallied for new challenges and now we have a lot to celebrate in 2013! Continue reading "Re-energized in Our Mission … A Message from Joan Block of HBF"

Hepatitis B Mutation Seen in Only Men, Increased Risk of Liver Cancer

High Level of Sexual Harassment in Men Linked to Purging: Study

Are you depressed? (Photo : Reuters)

Posted in Science World Report, October 17, 2013

A recent study looks at a form of hepatitis B that is only found in men and may explain higher rates for certain types of cancer.

According to a team of researchers from Seoul National University in Korea, they identified a mutation from the hepatitis B virus that seems to appear only in men and may explain why HBV-infected males are roughly five times more likely than HBV-infected women to develop certain types of liver cancer. Continue reading "Hepatitis B Mutation Seen in Only Men, Increased Risk of Liver Cancer"

HBV Journal Review – October 2013

HBF is pleased to connect our blog readers to Christine Kukka’s monthly HBV Journal Review that she writes for the HBV Advocate. The journal presents the
latest in hepatitis B research, treatment, and prevention from recent academic and medical journals. This month, the following topics are explored:

  • Study Finds Only 21% of Hepatitis B Patients Are Treated Correctly
  • Combination of Chinese Herbs Plus Antiviral Entecavir Proves Effective
  • Caesarians Reduce Infection of Newborns When Mothers Have High Viral Loads
  • Combined Antiviral and Interferon Treatment Effective in Those Under Age 30
  • New Tenofovir Formula May Lead to Less Bone Loss and Kidney Problems
  • HBV Mutation Found Only in Men May Explain Their Higher Rates of Liver Damage
  • Sumo Wrestlers Found to Transmit HBV Infection
  • Taiwan’s Hepatitis B Immunization of Infants Reduces Hepatitis B by 90%
  • Tenofovir Reverses Severe, Decompensated Cirrhosis

HBV Journal Review
October 1, 2013
Volume 10, Issue 10
by Christine M. Kukka 

Study Finds Only 21% of Hepatitis B Patients Are Treated Correctly

A new study, examining how well San Francisco primary care providers care for their patients infected with the hepatitis B virus (HBV), finds most fail to screen them for liver cancer or regularly evaluate their viral load or hepatitis B “e” antigen (HBeAg) status, though medical guidelines require annual or semi-annual testing.

The study, published in the September 2013 issue of the journal Digestive Diseases and Sciences, surveyed doctors who provide care through a safety net program to many uninsured patients. They were asked how well they thought they followed current medical guidelines, and then patient medical records were analyzed to assess the true quality of care.

Of the 148 doctors surveyed, 79% claimed to follow medical guidelines and monitor patients’ liver health every 6 six 12 months. However, patient medical records covering the last 12 months showed substandard care.

  • • Only 75% of patients had their alanine aminotransferase (ALT) levels, which shows liver damage, tested in the past year.
  • • Only 51% had their viral load (HBV DNA) tested.
  • • Only 51% had been screened for liver cancer (either with an alpha fetoprotein test or some type of liver imaging). This test should be performed annually, and doctors are at risk of medical malpractice if they do not screen patients for cancer.
  • • HBeAg tests were performed in only 29% of patients.
  • • Only 32% of the hepatitis B patients had been immunized against hepatitis A, another guideline requirement, to protect them from another liver infection.

Bottom line, researchers found that only 21% of patients had been monitored properly in compliance with current hepatitis B guidelines. Forty-three percent of doctors were not familiar with medical guidelines for hepatitis B management and only 73% answered all questions about hepatitis B correctly.

There was also a racial bias regarding which HBV-infected patients were screened for hepatitis C and HIV. Doctors tended to test African-American and Latino patients for hepatitis C (48% and 44% respectively) at a higher rate than they tested whites and Asian-American patients (34% and 31%.)

The study suggests that fear of malpractice—more than knowledge of current practice guidelines—may drive doctors to perform the required liver cancer screenings each year. Also, the researchers suggest that hepatitis B public education initiatives, spearheaded by the San Francisco Hepatitis B Free Campaign, may have contributed to better monitoring of Asian-Americans because it raised awareness among the public and their providers.

“These findings highlight the importance of targeted provider education to improve overall care,” for hepatitis B, the researchers from the University of California, San Francisco, suggest.

Continue reading about this and additional HBV related studies

Join Hep B United, CDC DVH, HBF, AAPCHO and CDC NPIN for a Twitter Chat!

Mark you calendars! Join Hep B United,CDC Division of Viral Hepatitis , HBF, AAPCHO and CDC NPIN for a Twitter Chat on Tuesday, November 19th, 3pm EST to discuss the Know Hepatitis B campaign and what Hep B United, partners and coalition members are doing to raise awareness and increase hepatitis B testing and vaccination among Asian Americans and Pacific Islanders (AAPIs). Hepatitis B is the leading cause of liver cancer and a major health disparity among AAPIs who are disproportionately impacted by HBV. Continue reading "Join Hep B United, CDC DVH, HBF, AAPCHO and CDC NPIN for a Twitter Chat!"

HBV Journal Review – September 2013

HBF is pleased to connect our blog readers to Christine Kukka’s monthly HBV Journal Review that she writes for the HBV Advocate. The journal presents the
latest in hepatitis B research, treatment, and prevention from recent academic and medical journals. This month, the following topics are explored:

  • 39.2% of U.S. Newborns Aren’t Getting Hepatitis B Vaccine at Birth
  • Researchers Suggest Banning or Restricting Lamivudine to Avoid Drug Resistance
  • Knowledge Gap About Hepatitis B Persists Among Asian-Americans
  • Even Liver Specialists Fail to Immunize Patients Against Viral Hepatitis
  • Many Seek Viral Hepatitis Tests Only When Symptoms Appear
  • After Six Years of Tenofovir Treatment, Still No Signs of Drug Resistance
  • More Studies Examine Link Between Vitamin D and Liver Damage
  • Study Examines Which Hepatitis B Patients Relapse with Chemotherapy
  • Interferon Treatment May Cause Some Hearing Loss
  • African-Americans Suffer the Highest Rates of New HBV Infections in the U.S.

HBV Journal Review
September 1, 2013
Volume 10, Issue 8
by Christine M. Kukka 

 

 39.2% of U.S. Newborns Aren’t Getting Hepatitis B Vaccine at Birth

Which newborns aren’t getting immunized against hepatitis B in the U.S.? The infants who:

  • • Do not have health insurance
  • • Live in states without a universal hepatitis B vaccine supply policy
  • • And have only one provider who administered vaccines.

According to a U.S. Centers for Disease Control and Prevention study, published in the August issue of the journal Preventive Medicine, an alarming 39.2% of newborns missed the first, critical birth dose of hepatitis B vaccination that can protect newborns from hepatitis B even if their mothers are infected.

These results come from data analysis of the 2009 National Immunization Survey of 17,053 U.S. children, aged 19-35 months.

“Children who reside in states without a universal hepatitis B vaccine supply policy, and are not covered by health insurance are two important modifiable risk factors for not receiving the birth dose hepatitis B vaccination, future intervention studies could be needed to help control those modifiable risk factors,” CDC researchers wrote.

Source: www.ncbi.nlm.nih.gov/pubmed/23988497

Researchers Suggest Banning or Restricting Lamivudine to Avoid Drug Resistance
A global team of researchers suggest lamivudine (Epivir-HBV) never be used to treat hepatitis B patients because it frequently leads to drug resistance and sets the stage for resistance to other antivirals, such as entecavir (Baraclude).

Lamivudine, the first antiviral approved for hepatitis B treatment, has fallen out of favor in North America and Europe because of its high rate of drug resistance. But because of its low cost, it continues to be commonly used to treat hepatitis B virus (HBV) infection in Asia and Africa, where the majority of the world’s hepatitis B patients live.

This report, published in the July 30 issue of PLoS One, examined the molecular make-up of the virus in many patients who had been treated with lamivudine as well as patients who had never been treated. They found the many untreated patients carry a mutation that allows HBV to quickly mutate and develop resistance to lamivudine.

“Our findings strongly suggest that the use of lamivudine will not benefit …patients,” they wrote because of the high risk of lamivudine resistance.

“Finally, since patients can quickly develop drug resistance to entecavir in the presence of lamivudine mutations, the lamivudine mutations can significantly compromise the efficacy of entecavir,” they concluded.

They proposed that doctor screen patients for these mutations before ever prescribing lamivudine,”… to most effectively treat chronic hepatitis B patients by selecting only sensitive drugs.” …

Continue reading about this and additional HBV related studies

Joan Block, Hepatitis B Foundation Co-founder, Honored for Advocacy Work

A wonderful article (reprinted below) and short video was published last weekend in Phillyburbs.com recognizing the work of Joan Block, the Executive Director and co-founder of the Hepatitis B Foundation. In commemoration of World Hepatitis Day, Joan and Dr. Anna Lok were honored by the Viral Hepatitis Action Coalition of the Centers for Disease Control Foundation, for advocacy work resulting in the protection of medical students from HBV discrimination, and ultimately having HBV recognized as a disability protected under the Americans with Disabilities Act (ADA). This amazing accomplishment is just one of the many successes Joan and the HBF have had over the last 23 years as a result of her tireless efforts and dedication to the mission to help improve the lives of those affected by hepatitis B.

Please visit Phillyburbs.com to access to view the short video where Joan talks about the Foundation’s beginnings and how the HBF has grown from a grass roots effort to the leading national nonprofit for hepatitis B. Joan Block and the HBF truly are the “voice of hepatitis B”.

Read more about the story and the mission of the Hepatitis B Foundation and be sure to visit the HBF website to learn more about hepatitis B and the work of the Foundation.

For more than two decades, the Hepatitis B Foundation has fought to find a cure for the liver disease and advocate for those who have it.

What started as a grass-roots effort of four passionate people has grown into one of the leading nonprofit research and disease advocacy organizations in the United States.

“We are the voice for hepatitis B in the United States,” said co-founder and executive director Joan Block. “There’s still a lot of work to do, but we’ve accomplished a lot in the past 23 years.”

Earlier this year, the foundation’s mission got a boost when the U.S. Department of Justice said hepatitis B patients are protected under federal disability law in a case brought by the foundation against a New Jersey medical school on behalf of two students who were denied admission because they had the disease.

The case earned Block and Dr. Anna Lok, director of clinical hepatology at the University of Michigan Health System, recognition from the Centers for Disease Control Foundation, which honored both women on World Hepatitis Day July 25.

“That award is really being given to the foundation,” said Block, who lives in Doylestown Township. “It’s not me; it’s the work of the foundation. Without the foundation, I honestly don’t know if hepatitis B would even have much on the radar screen. There are very few voices, and we are probably the primary voice at the national level.”

Hepatitis B is an infectious liver disease that can be spread by sexual contact, sharing infected needles or at birth from mother to child, according to the Centers for Disease Control and Prevention. Chronic infection can lead to liver failure and cancer.

Block, her husband, Timothy Block — a researcher and academic who more often serves as the public face of the foundation — and New Hope philanthropists Jan and Paul Witte founded the Hepatitis B Foundation 23 years ago to draw more attention to and develop a cure for the disease, which affects up to 1.4 million Americans.

The couples initially started out to help a local family dealing with the disease. But what they found was little interest from the public health sector in researching a cure. The hepatitis B vaccine has led to dramatically lower rates of infection, and the prevailing, yet incorrect, belief at the time was that the disease infected mainly gay men and intravenous drug users.

“The more we dug, the more we realized there was nothing out there,” Joan Block said. “It was really grass roots, just the four of us in (the Wittes’) kitchen. We had the grand mission of raising a lot of money to start a research effort. That’s really what we needed. But it was hard to raise money when people didn’t know what hepatitis B was.”

Over the years, she said, the foundation has received numerous phone calls from people who believed they were being discriminated against because they have the disease. Some of them were medical professionals.

In 2011, four students contacted the foundation over six months, all claiming they were denied admission to or kicked out of medical and dental schools after discovering they had hepatitis B. All four were Asian Americans who were infected at birth. About half of infected patients in the U.S. are of Asian descent.

“It seemed like an avalanche,” said Block, a registered nurse who taught at Abington’s nursing school.

The foundation and Lok lobbied the CDC to update hepatitis B guidelines for medical professionals and students last changed in 1991. Since that last update, there have been no reports of hepatitis B transmission from medical or dental students, according to the CDC.

The Hepatitis B Foundation also filed a lawsuit on behalf of two students denied admission to the University of Medicine and Dentistry of New Jersey. The school settled with the Department of Justice.

In an added step, the departments of justice, health and human services and education sent a joint letter to the nation’s medical and dental schools about hepatitis B, encouraging them to adopt the CDC guidelines and informing them that people with hepatitis B are protected under the Americans with Disabilities Act.

But the foundation’s advocacy work is far from over. The organization is now lobbying on behalf of servicemen and women who are fighting discharge from the military on the grounds that they’re infected with the disease.

And the foundation’s executive director continues to push for a cure.

“We still want that cure,” Joan Block said. “We’re not satisfied that it’s preventable and controllable. We still have an urgent mission. That has not changed.”

 

Kudos to HBF’s Blog Voted as a “Sexual Health Top 10, Must Read Blog”

The team at Health Express has voted HBF’s blog as one of the “Must Read Blogs of 2013 – Sexual Health Top 10!”  HealthExpress.co.uk is an online clinic that provides support, advice and treatment for common medical conditions that patients do not always feel comfortable talking about. You can take a look at their recommended Top 10 blogs and learn more about them at healthexpress.co.uk.

The accolades from the HealthExpress team are a great opportunity to review transmission of the hepatitis B virus. HBV is transmitted through infected blood and body fluids. This includes direct blood-to-blood contact, unprotected sex, unsterile needles, and from an infected woman to her newborn baby at birth.  Sharing sharp, personal items that may have trace amounts of blood on them such a razors, toothbrushes, nail clippers and body jewelry including earrings, can also spread the virus.  Remember that the HBV virus may live up to a week on a surface resulting in possible transmission through direct blood-to-blood contact. This is why close, household contacts or family members are at greater risk of infection if one or more members are living with HBV. Don’t forget to be sure your tattoo or piercing experience is safe and that the parlor carefully follows infection control practices. Hepatitis B is also 50-100 times more infectious than the HIV virus.

Hepatitis B is also a sexually transmitted disease and is spread through infected semen, vaginal fluids and any blood that may be exchanged as part of a sexual practice – most often through sexual intercourse. In the United States, sexual transmission is the most common mode of HBV transmission and is responsible for 2/3 of acute HBV infections. A common question is “what about oral sex?” In general, oral sex would be considered less risky, but any kind of intimate sharing that may result in the exchange of bodily fluids will present some degree of risk.

So how can you prevent hepatitis B transmission between sexual partners? Fortunately there is a safe and effective hepatitis B vaccine to protect against the spread of HBV.  Get screened for HBV and vaccinate to protect – especially if you or your partner has more than one sexual partner, or if one or more partners is at greater risk.  When in doubt, get screened. Keep in mind that HBV is referred to as a “silent infection” since it may take decades for symptoms to occur. People with chronic HBV may be completely unaware of their infection and inadvertently spread HBV to their partner(s) if precautions are not taken.

Other precautions include practicing safe sex by using a latex or polyurethane condom. A lambskin condom will not prevent the spread of hepatitis B or other viral STDs. Looking for condom details?

A general comment to those with multiple sex partners– We are very fortunate to have a vaccine to protect against the hepatitis B virus. However, practicing safe sex with an effective condom is always advised to prevent the transmission of other infectious diseases that are not vaccine preventable, such as HCV and HIV, along with condom use to prevent the spread of other sexually transmitted diseases. Use common sense. No one wants a sexually transmitted disease, and if you have HBV, you really don’t want a coinfection. It can really complicate your life.

World Hepatitis Day in Ghana

Ghanians lined up for a viral hepatitis screening at last year's World Hepatitis Day event in Tamale, Ghana (Northern Region)

HBF is pleased to share World Hepatitis Day plans of our friend Theobald Owusu-Ansah of the Theobald Hepatitis B Foundation in Ghana. The Foundation is also a voting member of the World Hepatitis Alliance. 

On July 28th, 2013, The Theobald Hepatitis B Foundation and the Hepatitis Coalition of Ghana will join the World with one voice to celebrate World Hepatitis Day in Sunyani at Victoria Park. In attendance will be the Chiefs, members of Parliament, District Chief Executives, Municipal Chief Executives, Assembly Members and all the Opinion Leaders of the Region.

The Theobald Hepatitis B Foundation is a non-profit organization whose main aim is to educate and create awareness of hepatitis B and C to the general public, ranging from the causes, and symptoms of viral hepatitis, to preventive measures.

On World Hepatitis Day, the activities will start with an early morning Float with music and dance throughout the principal streets of Sunyani, along with the members and volunteers of the Foundation and the Coalition distributing educational materials to the crowds. These leaflets, posters, banners and stickers are part of the ongoing media blast that will draw the public’s attention to problem of chronic hepatitis B among the people of Ghana.

Free screening and hepatitis B vaccinations will be ongoing throughout the day’s activities. Resource persons will be delivering their messages and educating the general public about viral hepatitis. It is important that the people learn and understand whether or not they are positive or negative for viral hepatitis, and if they are positive, what is next.

The Delegation of the Government and other health care professionals will educate the public on Viral Hepatitis Policies and the way forward. Dieticians will also take the general public through the kind of food and diet one needs to eat, and the importance of avoiding alcohol, in order to defuse the public cry of the cost of prevention and treatment of hepatitis B.

Participating organizations will then take the opportunity to appeal for funds from the government officials and the Chiefs of the region present, in order to enable us to successfully organize our last programme of the year.

At the end of the event, the public will be provided with advice, and directed to seek medical information from qualified health professionals, in order to avoid falling into wrong hands of those trying to sell false cures for those with hepatitis B.

Please join us for our World Hepatitis Day activities in Victoria Park if you are in Sunyani, Ghana.

Theobald Owusu Ansah
Theobald Hepatitis B Foundation
P.O. Box GP 21325 Accra-Ghana:

Phone: 00233-20-8269214
theobald2003@yahoo.com
Theobald Hepatitis B Foundation website

 

Hepatitis B and Social Security Disability Benefits

Please welcome guest blogger, Ram Meyyappan, senior editor of Social Security Disability Help as he provides advice on applying for Social Security Disability Insurance or Supplemental Security  Income should your HBV prevent you from working.

Hepatitis B (HBV)  is often referred to as a “silent infection” because those chronically infected may have few or no symptoms, or may not be unaware of their infection for decades. However, over time, the risk of serious liver disease is certainly possible and symptoms can range from mild to severe.  Severe symptoms rarely occur with an acute HBV infection, but can have very serious outcomes.  If your condition is severe to the point that you can no longer continue to work, you may qualify for SSDI (Social Security Disability Insurance) or Supplemental Security Income (SSI) benefits from the Social Security Administration (SSA).

You can learn more about SSDI and SSI here

Hepatitis B and Qualifying for Benefits

When you submit an application for Social Security Disability benefits an adjudicator will review your file and compare your condition with a listing of conditions known as the SSA Blue Book (http://www.ssa.gov/disability/professionals/bluebook/). This Blue Book contains a listing of conditions and qualifying criteria that may qualify an individual for Social Security Disability benefits. Unfortunately Hepatitis B does not have its own listing in the Blue Book. You may still be able to qualify for disability benefits, however, if you are able to prove that you suffer from an associated condition (such as depression) that is included in the Blue Book. Some of the conditions that may qualify an individual for Social Security Disability benefits that are listed in the Blue Book and that may be associated with Hepatitis B include:

  • 5.05 Chronic liver disease
  • 5.08 Unexplained weight loss
  • 5.09 Liver transplant
  • 12.04 Affective disorders

If you are applying for disability benefits based on an associated condition that is listed in the Blue Book, you must provide medical documentation proving that your condition is severe enough to meet the criteria of that specific listing. For example, in the case of chronic liver disease, you must be able to prove that:

  • You are hemorrhaging from esophageal, gastric, or ectopic varices or from portal hypertensive gastropathy and it has resulted in hemodynamic instability and required hospitalization for transfusion of at least 2 units of blood; or
  • You suffer from ascites or hydrothorax that is not attributable to other causes, despite continuing treatment, as prescribed, and that the condition was present during at least 2 evaluations that were at least 60 days apart within a consecutive 6-month period; or
  • You suffer from spontaneous bacterial peritonitis with peritoneal fluid containing an absolute neutrophil count of at least 250 cells/mm3; or
  • You are suffering from end-stage liver disease with SSA CLD scores of 22 or greater.

If you are not suffering from a condition that is listed in the SSA’s Blue Book, you may still be able to qualify for disability benefits under what is known as a vocation allowance. In order to do this, however, you will have to prove that you are unable to perform any type of work activity whatsoever. This can be done through medical findings, laboratory reports and a residual functional capacity form. In the case of Hepatitis B, your condition must be very advanced and severe in order to qualify. Unless you are suffering from end-stage liver disease, you may have a hard time qualifying for benefits based on this condition.

Applying for Social Security Disability Benefits with Hepatitis B

To apply for Social Security Disability benefits, you can apply online at the SSA’s website (http://www.socialsecurity.gov/pgm/disability.htm) or apply in person at your local Social Security office. You will want to make sure that you have all of your medical evidence ready when you go to submit your application for benefits.

It can be very hard to prove that you qualify for Social Security Disability benefits when you are applying based on a condition that is not included in the SSA’s Blue Book. Because of this, you may want to consider retaining the services of a disability attorney prior to submitting your application. A disability lawyer can help you gather the evidence that you will need to prove your case. These attorneys will know which condition, if any, may qualify you under the SSA’s Blue Book or how to prove that you qualify based on a vocational allowance.

Article written by Ram Meyyappan, senior editor of Social Security Disability Help. Please refer to the Social Security Disability Benefits Help website for additional information. (www.disability-benefits-help.org)