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Hepatitis B Advocacy, Living with Hepatitis B

March 1 is Zero Discrimination Day: Ending Hepatitis B Stigma Starts with Us

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2017-zero-discrimination-day_en.pdfBy Christine Kukka

Around the world, millions of people with chronic hepatitis B face wrenching discrimination that limits their dreams, education, careers, income and personal relationships. Here are examples:

  • A Vietnamese woman working in a hotel in Dubai is found to have hepatitis B and is fired, isolated, deported and given a life-time ban on re-entering the country.
  • A young person from the Philippines, aspiring to increase her income to support her impoverished family, is hired to work in Saipan, but her work visa is suddenly cancelled by the employment agency when it discovers she has hepatitis B.
  • A young man from the state of Washington, who worked hard in high school to get into the Naval Academy, is summarily dismissed within days of his arrival when it’s discovered he has hepatitis B. The U.S. military continues to bar people with hepatitis B from serving.

All of this discrimination is unethical, unnecessary and a violation of human rights. Hepatitis B is simply not transmitted through casual contact. The stigma that persists is based on ignorance and it impacts millions around the world daily. This is why we need to recognize Zero Discrimination Day on Wednesday, March 1.

Image courtesy of cooldesign at FreeDigitalPhotos.net.
Image courtesy of cooldesign at FreeDigitalPhotos.net.

This day, designated by the United Nations, highlights the negative impact of discrimination and promotes tolerance, compassion and peace. Many hepatitis activist organizations, including the Hepatitis B Foundation, is using this celebration to draw attention to global hepatitis B discrimination.

In the U.S., some progress has been made to eradicate the unequal treatment of people affected by chronic hepatitis B infection. In 2012, prompted in part by complaints filed by the foundation, CDC issued new regulations that clarified that hepatitis B should not, “disqualify infected persons from the practice or study of surgery, dentistry, medicine, or allied health fields.” These recommendations and a U.S. Department of Justice letter warned medical, nursing, dental schools that they could not exclude applicants and students with hepatitis B, concluding, “… for most chronically HBV-infected providers and students who conform to current standards for infection control, HBV infection status alone does not require any curtailing of their practices or supervised learning experiences.”

However, today people with hepatitis B can’t even get jobs as hotel maids in many countries in the Middle East and Asia. Fear and ignorance, and reluctance by government officials to outlaw these discriminatory practices, have allowed these rules that diminish basic human rights to continue. The young woman who was exiled from Dubai, wrote of her experience:

“When I was 21, I had my internship in Dubai and needed to undergo a blood test. I was not aware of the rules in that country so when I was tested positive, the hotel that I worked for isolated me. I was going through a very hard time because I was completely alone in a foreign country. My work visa was canceled, they brought me to a place that looked like a jail, they took my iris scan, and I was deported along with a lifetime ban, which means I can never come back to that country again. That was the most horrible memory in my life. I am still scared every time I think about it. Sometimes I cannot sleep at night, I keep blaming, cursing myself for having this kind of virus inside my body.”

Image courtesy of meepoohfoto at FreeDigitalPhotos.net,
Image courtesy of meepoohfoto at FreeDigitalPhotos.net,

No one is to blame for hepatitis B, including the millions who were infected at birth or from unsafe and contaminated syringes and medical devices. There is a safe and effective vaccine that prevents hepatitis B today. When people are protected, there is no reason to fear that healthcare workers or hotel maids will spread this infection.

It is morally reprehensible that given the tools and knowledge we have that this discrimination should continue today.

Every day is zero discrimination day, and ending discrimination starts with us working individually in any way we can in our communities to end this stigma.

Make the NOhep:NOexcuse pledge and take simple actions to help eliminate viral hepatitis. It only takes a minute to pledge your support! 

The United Nations first celebrated Zero Discrimination Day on March 1, 2014, after UNAIDS, a UN program on human immunodeficiency virus (HIV) and Acquired Immune Deficiency Syndrome (AIDS), launched its Zero Discrimination Campaign on World AIDS Day.

Hepatitis B Advocacy, Hepatitis B Prevention

Facing the Threat of Hepatitis B Following Sexual Coercion or Assault

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Image courtesy of tuelekza at FreeDigitalPhotos.net.
Image courtesy of tuelekza at FreeDigitalPhotos.net.

By Christine Kukka

Around the world, the most common way hepatitis B is spread is through sex — and sometimes it’s not consensual.

In the United States, sexual transmission of hepatitis B accounts for nearly two-thirds of acute or new cases in adults. According to a U.S. Centers for Disease Control and Prevention (CDC) report, about one in five women and one in 71 men reported experiencing rape at some point in their lives. And abusers rarely use condoms.

One of the hardest things to talk about is the relationship between how hepatitis B is spread and sexual assault or coercion – defined as anytime a woman, man or child is forced to submit to sex either through rape or assault, or with a partner who refuses to use a condom.

About one in 20 women and men (5.6% and 5.3% respectively) experienced sexual violence, such as sexual coercion or unwanted sexual contact in the 12 months prior to the CDC’s survey; and 13 percent of women and 6 percent of men reported they had experienced sexual coercion at some time in their lives. Among women, most abusers were intimate partners, family members or acquaintances. Among males, most perpetrators were acquaintances.

Research suggests these figures under-estimates the true prevalence of sexual violence around the world, which endangers public health on many levels. There is the mental trauma victims experience and there is the spread of sexually-transmitted infections, such as hepatitis B and HIV.

Hepatitis B is 50- to 100-times more infectious than HIV and can be passed through the exchange of body fluids, such as semen, vaginal fluids and blood. The CDC recommends the following steps to protect against hepatitis B following sexual assault.

When the perpetrator has hepatitis B (is positive for the hepatitis B surface antigen-HBsAg):

  • If the victim has never been vaccinated, he or she should receive the hepatitis B vaccine series and also receive a dose of HBIG (hepatitis B antibodies).
  • If the victim has been vaccinated in the past, he or she should immediately get a hepatitis B vaccine dose (called a booster dose.)

When the perpetrator’s hepatitis B status is not known:

  • If the victim has not been immunized against hepatitis B, he or she should received the hepatitis B vaccine series.
  • If the victim has already been vaccinated against hepatitis B, no treatment is needed.

In South Africa, for example, women’s inability to control their lives sexually is fueling the HIV epidemic. One study that followed 1,500 pregnant women who were in married or stable relationships found an astonishing HIV infection rate of 38 percent. Many reported having been abused physically and sexually in the recent past, which helps explain why AIDS is now the biggest killer of young women in southern Africa.

Image courtesy of Sira Anamwong at FreeDigitalPhotos.net
Image courtesy of Sira Anamwong at FreeDigitalPhotos.net

Sexual assault is not always accompanied by physical violence. A woman may not have the power to require her partner to use a condom without risking physical or verbal abuse, or a person may not tell his or her sexual partner that they have hepatitis B. Coercion can be silent, and fueled by ignorance and low self-esteem.

Here is an email that the Hepatitis B Foundation recently received that illustrates this: “My boyfriend is hepatitis B and C positive, as he was a drug addict. We had unprotected sex often over two to three months. I want to ask, is there any chance of myself being infected?”

Sadly, this woman is at very high risk of infection, especially from hepatitis B. What stopped her from insisting he wear a condom or walking away from a relationship with a man who had little concern for her health and welfare?

Poverty, a lack of choices, resources and education, and a host of other factors stop victims from walking away from their abusers every day around the world.

To protect the health of people around the world, we need to fight in any way we can to stop sexual violence, protect women’s reproductive health, and enable everyone to control their lives.

In southern Africa, researchers have come up with a vaginal ring that contains anti-HIV drugs and discreetly protects a woman from HIV infection, without requiring her to negotiate condom use with an abuser inside or outside her marriage.

But this treats a symptom, not the disease of sexual violence that spreads trauma, fear and diseases such as hepatitis B. However we can, whenever we can, we must work to make a difference.

Hepatitis B Advocacy, Hepatitis B Prevention, Living with Hepatitis B

The Hepatitis B Community Cringes As Vaccine Skeptics Take the Stage in Washington

Image courtesy of Tuomas_Lehtinen at FreeDigitalPhotos.net
Image courtesy of Tuomas_Lehtinen at FreeDigitalPhotos.net

By Christine Kukka

In a profound blow to science, public health and the hepatitis B community, President-elect Donald Trump is reportedly asking Robert F. Kennedy Jr. — who believes that vaccines cause autism — to chair a national commission on vaccines.

Countless studies show vaccines are safe and effective and do not cause autism. The hepatitis B vaccine alone has contributed to an 82 percent drop in this deadly liver disease in the U.S. since 1991. Before universal childhood immunizations became available, one in 20 Americans had been infected with hepatitis B. Sadly, that spectacular success has not quieted vaccine skeptics.

It is heart-breaking to hear that an anti-vaccine activist may gain a public forum to promote his scientifically-unfounded opinions. If the hepatitis B vaccine had been available to my daughter and millions of others around the world at birth, there would be fewer people with chronic hepatitis B, fewer deaths from liver disease and cancer and far less anguish, fear and stigma. Vaccines safely and effectively prevent disease, and all of us who have been touched by hepatitis B can attest to their life-saving value.

Let’s review the indisputable scientific facts about vaccines, and why this controversy has resurfaced.

In 1998, the well-respected medical journal Lancet published a paper by researcher Andrew Wakefield and 12 of his colleagues linking a standard measles, mumps and rubella (MMR) vaccine and its preservative  thimerosal to autism. Despite its tiny sample size (just 12 children) and its speculative conclusions, the study was publicized and bolstered the anti-vaccine movement.

The study proved to be a fraud. Editors of the Lancet later retracted the report, and additional investigations into the study found some of children in the study did even have autism. But the damage was done and hepatitis B vaccine makers and others scrambled to remove thimerasol from their vaccines to counter the undocumented claims that it posed a threat to children. A thimerasol-free, hepatitis B vaccine became available in  late 1999.

Image courtesy of meepoohfoto at FreeDigitalPhotos.net.
Image courtesy of meepoohfoto at FreeDigitalPhotos.net.

But parents in the U.S. increasingly chose not to vaccinate their children, even after the disappearance of thimerasol. They didn’t like all the shots their babies were given, and vaccines became victims of their own success. They were so effective that parents began to believe their children were no longer at risk of these vaccine-preventable diseases and did not need immunization.

Before the measles vaccine became available, there were 500,000 cases of measles annually in the U.S. and 500 deaths. By 2000, due to universal immunization, measles had been eradicated. Then the anti-vaccine movement took hold and more and more parents chose not to vaccinate their children. In 2014, the U.S. experienced 667 cases of measles in 27 states, including an outbreak at Disneyland. This is what happens when parents stop vaccinating their children.

What is so piercing and terrible is that millions of us would be free of hepatitis B if only we had been vaccinated at birth or during childhood.

To arouse suspicion about vaccines that save millions of people every day is unforgivable. My daughter has hepatitis B today because this vaccine was not available when she was born. To plant false seeds of doubt about a life-saving vaccine undermines all we have worked for in our effort to eradicate hepatitis B in the next 30 years.

“A conspiracy theory such as the one about the autism vaccine is like an untreated wound,” wrote Michael Specter recently in The New Yorker. “It has festered for years, and yesterday Trump and Kennedy guaranteed that it can only deepen—causing tremendous destruction and needless pain.”

For factual information about vaccine safety, schedules, and why babies are given so many vaccines, click here.

Hepatitis B Advocacy, Hepatitis B Prevention, Hepatitis B Treatment

Kate Moraras: Making Sure Federal Policies Work to Eliminate Hepatitis B Locally

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Kate Moraras, Hepatitis B Foundation senior program director and Hep B United director.
Kate Moraras, Hepatitis B Foundation senior program director and Hep B United director.

By Christine Kukka

It’s Kate Moraras’ job to make sure federal programs crafted in the elite halls and federal agencies of Capitol Hill are what’s really needed to eliminate hepatitis B in Asian-American, African and other at-risk communities across the country.

Simply put, her goal is to eradicate, “the most staggering health disparity facing immigrant communities.”

The people on whose behalf Moraras works are among the most vulnerable and powerless in the country. They include Asian-American and Pacific Islander (AAPI) and African immigrants who were infected at birth or by contaminated syringes or medical tools in their countries of origin.

As senior program director at the Hepatitis B Foundation and director of the Hep B United national coalition for the past three years, Moraras has worked with federal officials and dozens of hepatitis community advocates across the country to align federal policy with the need of diverse, hard-to-reach communities.

“I have always been drawn to systems-level change and I saw public health policy as a key area where there are opportunities to make an impact,” she explained. She was energized by the prospect of finding solutions that would improve healthcare at the individual and community level, and she obtained her master in public health at George Washington University.

After graduation, Moraras learned about hepatitis B when she was working on AAPI health disparities in the federal government. “Then, my uncle found out he had chronic hepatitis B when he tried to donate blood,” she recalled. Suddenly, what had been a matter of political injustice became a personal cause and she began working at the foundation.

Moraras knows federal policies don’t succeed unless they make a difference on the streets of America. “Grassroots and culturally-focused organizations are pivotal to eradicating hepatitis B because they know their communities and how they are at risk of hepatitis B,” she explained.

Preventing and treating hepatitis B in immigrant communities requires cultural nuance. Each community has its own language, cultural practices and healthcare beliefs. Many lack insurance coverage and when they finally reach a clinic or doctor’s office, the cultural disconnect creates an insurmountable barrier to learning about this complex disease.

This is why having local organizations whose staff know the culture, speak the language and can bridge the glaring healthcare gap that now stops people from getting vaccinated and treated for hepatitis B is key. “Their communities trust them, which is so critical when it comes to navigating healthcare and communicating accurate information about hepatitis B, a disease that is stigmatized in many AAPI communities. If we want to eradicate hepatitis B in the U.S., we must partner with local organizations and make sure they have adequate resources to do the job.”

Hep B United and the foundation are working to make sure federal policy helps, rather than hinders, these vital, local initiatives.

“Fortunately, we have had champions within the federal government who have taken the opportunity to lead national efforts to address hepatitis B — for example, former Assistant Secretary for Health Dr. Howard Koh who led the development of the National Viral Hepatitis Action Plan and a White House Initiative tasked with specifically focusing on AAPI communities, with a cross-cutting voice and broad reach,” she said.

“CDC now has a multilingual communications campaign, the Know Hepatitis B campaign, to encourage hepatitis B testing among AAPI communities with educational materials in a variety of Asian languages,” she added. At state and local levels, there have been city councilors and state legislators who have become champions who advocate for funding for effective community programs to increase public awareness.

“What remains challenging is the disconnect between local groups providing direct services to people and federal agencies that are working to make and implement policy at the 30,000-foot level,” she said. “For example, we still do not have a national surveillance system to monitor chronic hepatitis B cases and trends and there remains an overall lack of awareness and attention to hepatitis B at the national level. We must all continue to ask for real investment by the federal government to combat hepatitis B.

“We need to build a national hepatitis B grassroots movement, which is something that I would like to see happen through my job and Hep B United in the years ahead,” she added. “We have built a strong coalition that continues to expand every year, we have powerful advocates from local communities who have taken on leadership roles in national hepatitis advocacy and I would like to see our movement continue to grow and translate to the millions of individuals we have the potential to reach.”

Hep B United is a national coalition to address and eliminate hepatitis B, a serious liver infection that is the leading cause of liver cancer.  An estimated 2 million people in the United States are chronically infected with the hepatitis B virus.  Hep B United aims to meet this public health challenge by increasing hepatitis B awareness, testing, vaccination and treatment.

Hepatitis B Advocacy, Hepatitis B Diagnosis & Monitoring, Hepatitis B Treatment, Living with Hepatitis B

Be Brave: Join a Hepatitis B Clinical Trial and Help Find a Cure

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Photo courtesy of CDC.
Photo courtesy of CDC.

By Christine Kukka

One of the bravest things people living with hepatitis B can do is participate in a clinical trial  to help find the drug that will one day eradicate the virus that infects more than 240 million worldwide.

There are medical and financial advantages to participating in a trial. We may gain access to a drug that is more effective than what is currently available. We may get free lab tests and medications, and we know we have helped millions of others in the pursuit of a cure.

For example, if you participate in the Hepatitis B Research Network Adult Cohort Study, which is currently collecting data on how hepatitis B affects in 2,500 people in the U.S. and Canada over a five-year period, you helps scientists better understand this disease while getting free annual liver tests.

There are different types of clinical trials, for example some compare the effectiveness of a new drug against current treatments. When TAF, a new formulation of tenofovir, was in clinical trials, one group of patients received TAF and the other received the standard tenofovir drug. Researchers then compared viral loads (HBV DNA) and liver health from the two groups to see if TAF was as effective as tenofovir in lowering viral load and reducing the risk of liver damage.

Other drug trials compare the effectiveness of a new drug against no treatment. In this double-blind study, a control group receives no treatment (a placebo – or sugar pill) and the other group gets the experimental drug. Researchers don’t know until the end of the study which participants received the experimental drug in order to achieve an objective view of a drug’s effectiveness.

Clinical trials are also used to test the accuracy of new monitoring equipment or approaches, or they can help define what screening practices work best in individual immigrant communities.

Photo by Amanda Mills of CDC.
Photo by Amanda Mills of CDC.

They can also assess the effectiveness of herbal supplements and vitamin D in reducing liver damage or help identify when a pregnant woman should receive antivirals to lower her risk of infecting her newborn.

There are drawbacks to clinical trials that participants need to know. While pharmaceutical companies have spent years developing new drugs and testing them in lab animals before they reach human clinical trials, some drugs will not work.

A recent example of this is the Arrowhead Pharmaceutical’s ARC 520, 521 and AAT drugs, which were in clinical trials on 300 people in 17 countries. Last month, Arrowhead halted the trials after test animals that were receiving much higher doses of the drug died.

And, some trial participants risk getting the placebo instead of the experimental drug. In many of these cases, if the “experimental” drug is successful, those who received the placebo eventually gain access to the new drug. Also, these trials take commitment, including your time, travel and perseverance. But one day, these trials will help find a cure, but it can’t happen without the help of people living with hepatitis B.

How do we find a clinical trial? Most hepatitis B trials are managed by clinical researchers who work at universities, large hospitals or pharmaceutical companies. But you do not have to be a patient at one of these institutes to participate in a trial.

Step 1: Talk to your provider at your clinic, primary care office or liver treatment center and tell them you’re interested in participating in a trial. If you find one you think you’d qualify for, show them the information. Your provider can refer you to a trial even if he or she isn’t participating directly in the trial.

Step 2: Your provider can contact the research center on your behalf, submit an intake form for you, and transfer your patient records after you complete a HIPAA form. Your provider can still continue to care for you even if you join a trial.

Step 3: If you qualify, you may have to travel to the research center at least once. After that, your blood tests and any other lab results can be performed locally and sent to the researchers.

Step 4: Do your research before you participate. Ask questions and make sure you understand how the trial will affect your health. If there’s a chance you’ll get the placebo pill, ask what will happen and if you get access to the drug later on. Make sure you get the information in your primary language and that trial doctors are culturally-sensitive. Trust and knowledge is essential.

Below are some resources to help you. If you need more information, contact the foundation at 215-489-4900 (U.S.) or email info@hepb.org.

Where to find a clinical trial

  • Hepatitis B Foundation’s directory  of hepatitis B-related clinical trials: This resource lists hepatitis B-related clinical trials registered with the U.S. National Institutes of Health. These include hepatitis B-related treatment and liver cancer trials for adults and children in the U.S. and around the world. They also include coinfections, hepatitis D and trials investigating ways to prevent mother-to-children transmission of hepatitis B during childbirth. You can also email the foundation for more information at info@hepb.org.
  • The U.S. National Institutes of Health directory of clinical trials. This is a searchable directory of all NIH-approved clinical trials. You can search by condition and location.
  • Center for Information & Study on Clinical Research Participation: This offers a clinical trial database you can search, and the organization will also help you find clinical trials and email or mail you the information.  Call 877-MED HERO. Allow one to two weeks for response.

To watch a webinar about how to participate in a clinical trial, click here.

Hepatitis B Advocacy, Hepatitis B Treatment, Liver Cancer

Shop Carefully for Lowest-Cost Hepatitis B Drugs When Signing Up for Medicare by Dec 7

Image courtesy of Witthaya Phonsawat at FreeDigitalPhotos.net
Image courtesy of Witthaya Phonsawat at FreeDigitalPhotos.net

By Christine Kukka

With the cost of healthcare and prescription drugs soaring, it’s important for people age 65 and older who live with hepatitis B to shop for Medicare coverage carefully before they sign up by Dec. 7, especially if they need costly antivirals and frequent lab tests.

As we age, our immune system weakens and loses its ability to suppress our hepatitis B infection. We may notice a gradual rise in our viral load (HBV DNA) and/or our liver enzymes (ALT/SGPT), which indicate liver damage.

We may also experience other medical conditions, such as cancer or arthritis that require immune-suppressing drugs that unfortunately enable our hepatitis B to reactivate. To lower our viral load and reduce the risk of liver damage, we’ll need antivirals, and they’re not cheap. Medicare recipients must shop carefully for the most affordable plan. Here are the three key Medicare coverage areas:

Part A is free. It covers most of hospital and nursing home care, however you still pay for some deductibles and copays. For example, if you go to a hospital for a liver biopsy, you will pay a portion of that cost if you only have Part A.

Part B covers doctor visits and lab tests, and it costs about $150 a month and increases based on your income. There is a deductible of $166 a year and you pay a 20 percent copay for many services. Instead of selecting Part B, you may instead choose a private or employer-sponsored Medicare advantage plan.

Part D covers your drug costs and it’s optional, but if you’re on antivirals, interferon or other medications, it important that you have drug coverage under this or a Medicare Advantage plan (such as HMOs or PPOs) that cover all Medicare benefits including drugs. If you have a low income, you may be eligible for assistance to help pay for your Part D plan.

Image courtesy of Ambro at FreeDigitalPhotos.net
Image courtesy of Ambro at FreeDigitalPhotos.net

It is critical that you shop around before selecting a drug plan. Just like the Affordable Care Act’s Health Exchange, there will be fewer drug programs available to you to choose from this fall. You also need to make sure your plan:

  • Has your specialist or primary care doctor and lab in its network, and
  • Offers the lowest copay for the drugs you need.

When you shop for a Medicare Part D drug plan: You select from plans based on where you live and what drugs you take. For example, if you’re shopping for a drug plan to cover tenofovir (Viread), plan prices can vary by more than $1,000 a year. Comparison shopping is critical!

To find a plan, go to Medicare Plan Finder and enter your zip code and select the drugs you expect to take during 2017. It’s a good idea to sit down with someone who can help you during your search or call a Medicare representative at 1-800-633-4227 (1-800-MEDICARE) as you search online.

The drug plans have different pricing tiers for prescription drugs, a simple generic antibiotic can be less expensive Tier 1 or 2 drug, while a brand name drug like tenofovir can be a more costly Tier 4 or 5 drug.  Without Part D drug coverage, a year’s supply of tenofovir could cost about $12,880 a year. Before you select a plan, here are some suggestions:

Check the fine print: Make a list of all of your medications and check how much each plan reimburses for each. Search for any “hidden extras” you’ll have to pay if you’re using a brand name or specialty drug. Some plans have separate, high copays for brand-name and specialty drugs, which can include hepatitis B drugs.

If you need a brand-name maintenance drug (like tenofovir) that isn’t available as a generic yet, you may want to focus only on plans that have the lowest co-pay for that drug. Your other drug needs may be less expensive, generic cholesterol- or blood pressuring-lowering medication.

Consider both the monthly premium and the copay. You must consider both costs when searching for the best plan.

Does the plan require you to use a specific pharmacy? An increasing number of plans require you to use a preferred pharmacy, or even a mail-order option. Factor in convenience and your premium and copay.

Can you get discounts because of your income? You may be eligible to get all or part of your Medicare premiums, deductibles or co-payments covered if you have limited income and resources. Individuals with incomes less than $17,820 and assets less than $13,640, and couples with incomes less than $24,030 and assets less than $27,250, qualify for subsidies. You also may qualify, even if your income is higher, if you support other family members who live with you. Call Social Security at 800-772-1213 for information.

The good news: The dreaded “doughnut hole” or the gap during which you must pay a higher percentage of your drug costs, continues to shrink next year and will be completely phased out in 2020.

Even if you’re happy with what you had last year, do your research: Kaiser Foundation research found only 10 percent of Medicare enrollees switched plans between 2007 and 2014. Those who switched on average saved about $16 a month just on premiums. It pays to shop around.

Like your doctor? Make sure he/she is in your provider networks: Advantage plans can shuffle their provider and hospital networks each year. And their provider lists may not be included in Medicare’s online Plan Finder or the basic plan documents.

Contact your plan and ask for their 2017 provider directory before making a decision. Check if specialty facilities like university-based teaching medical centers are included. Or, call your physician and ask if they will be in the plan you’re considering — and, if not, where they’re going. And be aware: While doctors can leave a plan in the middle of a year, you typically can’t.

Hepatitis B Advocacy, Hepatitis B Treatment

Hepatitis B Foundation Expert Timothy Block Predicts Transformational New Therapies for Hepatitis B

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Hepatitis B Foundation President Timothy Block
Hepatitis B Foundation President Timothy Block

By Christine Kukka

For more than 25 years, Timothy Block, Ph.D,, has worked tirelessly to find a cure for hepatitis B, promoting research, writing papers, mentoring students and collaborating with experts around the world to find a cure for the 240 million people living with this deadly liver disease.

Today, the cofounder and president of the Hepatitis B Foundation, the Baruch S. Blumberg Institute and the Pennsylvania Biotechnology Center, is optimistic and believes there are new therapies in sight for those living with chronic hepatitis B.

An unprecedented number of researchers are scrutinizing every stage of the hepatitis B virus (HBV) replication cycle to find its vulnerabilities and develop drugs to permanently disable it. The cure Block wants would completely eradicate the infection so no one would ever wake up worrying about the risk of liver damage or cancer to themselves or a loved one.

This global, active march towards a cure is in stark contrast to 1991 when Block began his solitary quest, after a friend’s devastating hepatitis B infection made him rethink his career and start focusing on the liver disease that infects more than one in three people worldwide.

Twenty-five years ago, the only available treatment was conventional interferon, which was largely ineffective. The first antiviral, lamivudine, appeared shortly thereafter. It would be one of several to emerge from HIV’s drug arsenal. Since then, more antivirals designed to disrupt HBV’s replication process have been developed that target the polymerase—the essential enzyme needed for HBV replication.

“But they are not cures,” Block explained during a recent webinar. “They’re good at reducing viral load (HBV DNA), but they don’t get rid of the virus, and considerable viral DNA and  hepatitis B surface antigen (HBsAg) remain in liver cells.” Nor do current antivirals get rid of the HBV chromosome called cccDNA that embed in liver cells and stubbornly remain, ready to churn out more virus if a person stops taking antiviral drugs, or if their immune system weakens due to advancing age or another illness.

There are other roadblocks that make hepatitis B far harder to cure than hepatitis C. HBV generates massive amounts of HBsAg that appear to overwhelm the immune system’s B cells, whose job is to produce antibodies to eradicate HBV’s antigens. When newborns or young children are infected, these B-cells become paralyzed or “exhausted” by the flood of HBsAg engulfing them and they don’t generate the antibodies needed to fight infection. In contrast, when healthy adults are infected, these B-cells act quickly and aggressively to eradicate HBsAg within six months.

“Now for the first time, we’re looking beyond the polymerase to find more targets that are essential for HBV replication,” Block explained. HIV researchers have already done this and have identified more than 30 different “targets” in the HIV replication process. Hepatitis B researchers are also expanding their target range.

There are now new drugs in development, some have even reached Phase II clinical trials, that target new HBV reproductive terrain. They employ a variety of strategies ranging from immune system enhancers to molecular weapons designed to halt cccDNA integration into liver cells.

“If you can suppress cccDNA, the game would be over,” Block said, “but cccDNA is small, tough target. It’s so small compared to other material, that it’s almost impossible to distinguish from other molecules.” However, biologicals that are able to “inhibit” or block cccDNA from entering a liver cell could stop the virus from hijacking and reproducing in liver cells. Here are some types of drug strategies currently in development that could lead to a cure:

Restructured versions of tenofovir: There are two new tenofovir “prodrug” compounds, called TAF and CMX 157, that are more effective at reaching liver cells and impeding HBV replication. TAF is now in Phase III clinical trials and is expected to reach the U.S. Food and Drug Administration (FDA) this month (November 2016).

Molecular agents that target and disable HBV replication:

  • A new agent, called the CRISPR/Cas9 system, may be able to operate on a molecular level to search out and destroy HBV cccDNA molecules.
  • One of the more advanced molecular strategies, already in Phase II trials, is a “silencing” RNA process. This approach uses RNAi gene silencers to target and destroy HBV RNA to prevent viral reproduction. “CccDNA remains,” Block explained, “but all of its gene products it needs are choked.”

Entry inhibitors: Some of these drugs resemble HBsAg, but they work as decoys to prevent the virus from entering or binding to the liver cell. One is in Phase II clinical trial.

Capsid inhibitors: This approach interferes with the viral DNA’s ability to connect or glue together during the replication process. Several of these drugs are in Phase II clinical trials.

HBsAg inhibition and eradication: “There are 1 million more HBsAg as the actual virus,” Block observed. “Why are there so many? What is it doing in the blood? Why is it able to exhaust our B-cells?” Because HBsAg appears to hold a key in stopping infection, researchers are working to develop a way to eradicate HBsAg. Two of these HBsAg eradicator products are in Phase II trials.

Adaptive and innate host defense: This approach involves a two-step strategy, first reducing viral load to undetectable levels by helping liver cells become “in-hospitable” hosts to HBV’s reproductive efforts, and then introducing a vaccine or some other immune enhancer that can break the B-cell exhaustion cycle while firing up immune cells to aggressively fight and eradicate the infection. There are several of these drugs in Phase I and II clinical trials.

Block told his webinar audience that ideally one of these drugs would emerge as a single, simple cure. “But every infectious disease today, such as hepatitis C and HIV, is almost always treated with a combination of drugs. We might see two direct-acting antivirals and maybe a third drug that work as an immune system activator.”

When asked which patients would get first access to a new cure, Block predicted that people with high viral loads and liver damage would be treated first based on medical need. “As drugs get safer, I hope we will  treat people in the immune tolerant phase (with high viral load but no signs of liver damage yet), before they begin to have signs of liver damage.”

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Hepatitis B Advocacy, Liver Cancer, Living with Hepatitis B

October is Liver Cancer Awareness Month

Image courtesy of Stuart Miles at FreeDigitalPhotos.net
Image courtesy of Stuart Miles at FreeDigitalPhotos.net

By Christine Kukka

In an era of hepatitis B immunization and improved health care, an alarming trend is happening — liver cancer is increasing and is now the second-leading cause of cancer deaths around the world.

This is why it’s critical that everyone living with hepatitis B should demand to be screened for liver cancer. There are three key reasons why liver cancer rates remain high:

  • Too few people are tested for hepatitis B, which is why two-thirds of Americans living with hepatitis B don’t know they’re infected.
  • Only 20 percent of doctors follow liver cancer screening guidelines and test at-risk hepatitis B patients for liver cancer. By the time liver cancer is diagnosed, it’s often too late for effective treatment.
  • And, screening guidelines themselves are inadequate and fail to use valuable blood tests that help identify liver cancer in its early, treatable stages.

Today, the majority of liver cancer cases occur in developing countries, fueled by undiagnosed and untreated hepatitis B. More than 80 percent of these cancers are found in sub-Saharan Africa and Eastern Asia where more than 20 of every 100,000 people will suffer and die from liver cancer.

But make no mistake, liver cancer happens in North America and Europe too. Because people aren’t effectively screened for hepatitis B and liver cancer, an estimated 10 percent of people with chronic hepatitis B will develop liver cancer in developed countries. Most face a bleak outlook, only 20 percent of people diagnosed with liver cancer survive beyond five years.

But you can beat these odds. In celebration of Liver Cancer Awareness Month, we need to insist that our doctors screen us for liver cancer. When diagnosed early, treatment succeeds and survival improves markedly.

Medical guidelines that recommend when and how we are tested for liver screening vary dramatically around the world, but most of them are inadequate, according to a recent report. The U.S. and European guidelines, for example, recommend an ultrasound of the liver every six months.

But an increasing number of experts, including Hepatitis B Foundation Medical Director Dr. Robert Gish, are promoting the combined use of an ultrasound plus two blood tests — for alpha fetoprotein (AFP) and des-gamma carboxyprothrombin (DCP) — to help identify liver cancer in its early, treatable stages.

Current medical guidelines recommend anyone with cirrhosis (liver scarring) should be screened every six months for liver cancer because 80 percent of people diagnosed with liver cancer also have cirrhosis. The guidelines also state that patients who have a family history of liver cancer, are coinfected with HIV or hepatitis C, or who are young males of African descent should also be tested for cancer at any age.

Many of us don’t have these risk factors, but we are still at risk. Our liver cancer incidence is much lower than if we had cirrhosis, but it’s still there and we need to be tested using the best tools available.

Age is clearly an important factor when it comes to liver cancer, especially if we have had hepatitis B for several decades, but current guidelines only provide age-specific screening recommendations in people of Asian ethnicity (men over age 40 and women over age 50).

As doctors debate whether these guidelines should be changed to promote earlier or more frequent screening, here are some questions to review with your doctor to determine if you should be screened for liver cancer:

How many years have you had hepatitis B? The longer you’re infected, the higher your risk of liver cancer. Men of African descent are found to develop liver cancer at an earlier age than other races and should be screened starting in their 20s.

What is your gender? Men are considered at higher risk of liver cancer at an earlier age because they may be more likely to smoke, drink alcohol, have more “active” hepatitis, and higher iron stores—all of which increase cancer risk. Estrogen is believed to protect pre-menopausal women against liver cancer.

Have you had a high viral load (HBV DNA) after age 30? Having a viral load exceeding 2,000 international units per milliliter (IU/mL) is associated with a higher risk of liver cancer even if you have no other signs of liver damage.

Do you have a family history of liver cancer? If an immediate family member has had liver cancer, this greatly increases your risk.

Are you overweight, or have you been diagnosed recently with type 2 diabetes? A fatty liver and/or diabetes increase your risk of liver damage and cancer dramatically when you’re also infected with hepatitis B.

Do you have hepatitis B virus genotype C or core/precore viral mutations? Originating in Asia, this hepatitis B strain is associated with loss of the hepatitis B e antigen (HBeAg) later in life. That means you may have had a high viral load and liver damage for a longer period than people with genotypes who clear HBeAg at a younger age. Having core or precore mutations in your HBV also increase liver cancer risk.

Talk to your doctor, even if you haven’t had liver damage and have had a low viral load or undetectable viral load for many years, ask if it’s time for a liver cancer test. For more information about liver cancer visit the Liver Cancer Connect website and for more information about screening for liver cancer, click here.

On Tuesday, Oct. 25, representatives from Hep B United, CDC’s Division of Viral Hepatitis, and the National Alliance of State and Territorial Aids Directors (NASTAD)  will be co-hosting a twitter chat at 2 p.m. EST using the hashtag #liverchat.

Hepatitis B Advocacy, Hepatitis B Diagnosis & Monitoring

Why Raised Voices, Phone Calls and Letter Writing Are Critical to Eradicate Hepatitis B

2013-05-17_HepbUnitedEventBy Christine Kukka

Getting the medical care we need requires advocacy, because in the U.S. the quality of our healthcare–and even how long we live–depends on our income, ethnicity, gender and where we live. That is especially true when we live with hepatitis B.

Many affected by hepatitis B are not endowed with money, privilege or political power. Most of us are immigrants and people of African and Asian descent. This infection illuminates our country’s racial divides in healthcare. Asian-Americans, for example, have liver cancer rates 13-times higher than white Americans because they were never tested for hepatitis B, diagnosed or treated until it was too late.

Many of us are gay or injecting drug users. We are often uninsured or under-insured, which leaves us unable to pay for testing or treatment.

Our doctors, who often work in healthcare systems focused more on the bottom line than patient care, see too many patients in too little time. They may not know to screen us for hepatitis B, or monitor us properly and refer us for treatment when the infection damages our livers.

Despite good intentions, we live with a broken healthcare system and like any political system it requires the actions of patients, voters and advocacy organizations to improve.

Participants Perform a B A Hero Chant
Participants Perform a B A Hero Chant

The Hepatitis B Foundation and national coalitions including Hep B United are working within the political system to make healthcare more equitable and accountable.  They’re fighting to get more funding so the U.S. Centers for Disease Control and Prevention and the National Institute of Health have more resources to eradicate hepatitis B. Recently, these advocates scored a victory. Continue reading "Why Raised Voices, Phone Calls and Letter Writing Are Critical to Eradicate Hepatitis B" →

Baruch S. Blumberg Institute