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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" →

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

Hepatitis B Foundation: Answering Questions and Dispelling Fears One Call or Email at a Time

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Maureen Kamischke, Hepatitis B Foundation's social media and outreach manager.
Maureen Kamischke, Hepatitis B Foundation’s social media and outreach manager.

Hepatitis B is a complex infection, it can impact our health, lifestyle choices and threaten relationships. Sometimes, we need to ask for help.

One of the most personal and valuable services the Hepatitis B Foundation provides is answering individuals’ emails and phone calls about hepatitis B. These queries, which can come from all over the world, often involve discrimination, disclosure and how to interpret lab tests that baffle inexperienced doctors and nurses.

One of the people at the foundation who answers these emails and calls is Maureen Kamischke, the foundation’s social media and outreach manager. Kamischke, whose daughter had hepatitis B, knows first-hand the difficulty of finding healthcare providers with expertise in hepatitis B treatment. She has grappled with decisions about disclosing her child’s infection at school and to friends. Today, she continues to advise her daughter (now an adult) about her liver health, and she also answers the dozens of emails and calls that reach the foundation each week.

Maureen Kamischke's daughter Maren.
Maureen Kamischke’s daughter Maren.

Today, guided by decades of personal and professional hepatitis B experience, Kamischke helps others navigate the challenging world of hepatitis B. “My goals are to disseminate accurate information, provide hope and information that will empower people living with hepatitis B to make simple lifestyle changes that will help them feel like they have some control over their lives,” she explained. “I understand that the disease will shape them, but I want them to understand it should not define or limit them. “ Continue reading "Hepatitis B Foundation: Answering Questions and Dispelling Fears One Call or Email at a Time" →

Hepatitis B Advocacy, Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention

Advocates Raise Awareness About African Immigrants’ High Risk of Hepatitis B

Volunteers at Boston's National African Immigrant and Refugee HIV/AIDS and Hepatitis Awareness Day
Volunteers at Boston’s National African Immigrant and Refugee HIV/AIDS and Hepatitis Awareness Day

By Christine Kukka

For years, public health advocates have struggled to educate both doctors and Asian-Americans about the high risk of hepatitis B that this ethnic group faces. It’s been a slow, uphill battle marked by moderate success.

Despite the fact that one in 12 Asian-Americans and Pacific Islanders (AAPI) is chronically infected with hepatitis B, more than two-thirds of them haven’t been screened and don’t know they’re infected.

But another group of immigrants and their children—from Sub-Saharan Africa—are also at high risk of hepatitis B and have received even less attention from public health advocates and the medical community across the U.S.

Of foreign-born U.S. residents with hepatitis B, about 58 percent are AAPIs and 11 percent come from Africa. In the past 20 years, the number of immigrants–primarily from war-torn Somalia, Nigeria, Ethiopia, Ghana, Kenya, and Egypt–have increased more than 750 percent. There are now 1.6 million African immigrants in the U.S. and 10 percent are believed to be infected with chronic hepatitis B.

In the largest study of its kind, 955 African-born residents living in New York City were screened for hepatitis B between 2011 and 2013. Doctors found 74 percent had been infected with hepatitis B in the past, and 9.6 percent had current, chronic or long-term infections.

Ponni V. Perumalswami, MD, director of the Hepatitis Outreach Network (HONE) at Mount Sinai School of Medicine in New York City
Ponni V. Perumalswami, MD, director of the Hepatitis Outreach Network (HONE) at Mount Sinai School of Medicine in New York City

“I believe African immigrants have been underserved by our healthcare system,” observed Ponni V. Perumalswami, MD, assistant professor of medicine and director of the Hepatitis Outreach Network (HONE) at Mount Sinai School of Medicine in New York City and lead researcher of the New York City study. “Similar to Asian-Americans, African immigrants are often not screened or referred to treatment. Additionally, many at-risk African immigrants are not currently engaged in health care and have struggled to access medical care in our communities.”

Healthcare providers have struggled for decades to provide the resources and culturally-competent care needed to screen, immunize and refer infected AAPIs for treatment; now they must develop new strategies to reach African immigrant communities. These communities, found in large cities such as Atlanta and New York and in small towns such as Lewiston, Maine, have a wide array of distinct cultures, healthcare practices and languages.

A young Somali refugee. Courtesy of USAID (USAID) [Public domain], via Wikimedia Commons.
A young Somali refugee. Courtesy of USAID (USAID) [Public domain], via Wikimedia Commons.
Like their AAPI counterparts, many African immigrants lack access to any healthcare, let alone culturally-competent medical care that is trusted and embraced. “There is clearly a healthcare disparity with respect to the large burden of hepatitis B disease in this community, however very little research has been done to identify these gaps and develop successful interventions to bridge them,” Perumalswami explained.

She is now testing a group education program—called the Hepatitis Outreach NEtwork (HONE)–that could be adapted nationwide to raise awareness about hepatitis B. HONE enlists local public health agencies, community organizations, health care providers and community leaders to reach African immigrant communities. She also recommends using patient navigators from each immigrant African ethnic group to help people get screened, immunized and into treatment. “Not every person needs a patient navigator, but they can be very effective in getting some people screened and those infected linked to care,” she said

But for many, this outreach is too little too late. “Unfortunately, it is not uncommon for me to see patients who have been silently infected for decades with advanced liver cancer or suffering from complications of liver failure when we diagnose their hepatitis B infection for the first time,” she said.

That lack of screening and treatment continues to haunt AAPI communities. Vietnamese-American men whose infections were not diagnosed until it was too late make up a large percentage of people with liver cancer in the U.S.

Courtesy of the U.S. Centers for Disease Control and Prevention.
Courtesy of the U.S. Centers for Disease Control and Prevention.

“It’s particularly troubling as we have a highly effective vaccine to

prevent hepatitis B and highly effective treatments to decrease the risk of liver cancer and liver disease progression,” Perumalswami commented.

In an effort to raise awareness about hepatitis B and C and HIV in the African immigrant community, a coalition of organizations, including the Hepatitis B Foundation and Hep B United, and local and national groups are supporting National African Immigrant and Refugee HIV/AIDS and Hepatitis Awareness Day (NAIRHAA Day) on Sept. 9.

A Twitter chat exploring ways to raise awareness among African immigrants in the U.S. is scheduled for 2 p.m. (EST) Tuesday, Sept. 13. Use hashtag  #AIHHchat

For more information about NAIRHAA, including webinar training for healthcare providers and public health officials, please explore the following:

Facebook: https://www.facebook.com/NAIRHHA

Twitter: @NAIRHHADay

Thunderclap: http://thndr.it/1IQC4TB

Webinar training on Improving Hepatitis B Screening and Care Among African Immigrants (June 2016): https://www.youtube.com/watch?v=ixyelHdVPh4

Webinar 1 (Epidemiology)  https://www.youtube.com/watch?v=RWYGgyNSIK8

Webinar 2 (HIV)  https://www.youtube.com/watch?v=T0LOybRvjNw

Webinar 3 (Hepatitis B) https://www.youtube.com/watch?v=g47Dm3rV4-Y

For more information, contact Siede Slopadoe, lead organizer for NAIRHAA Day, at sslopadoe@mac-boston.org

Hepatitis B Advocacy, Hepatitis B Prevention

A Hero Takes the Fight Against Hepatitis B to Rural Ghana

A street scene in Ghana. Photo by Ebenezer Akakpo.
A street scene in Ghana. Photo by Ebenezer Akakpo.

By Christine Kukka

The HIV/AIDS epidemic, ebola and malaria have infected and killed millions in Sub-Saharan Africa , but another infection, more silent and insidious, has also destroyed millions of African lives yet has received little attention from the global community—hepatitis B.

A recent article in The Lancet medical journal estimates that between 5 and 20 percent of the 1 billion Africans in this region have been infected with hepatitis B and 5 percent are chronically infected.

The region lacks the healthcare workers and resources to educate, screen and immunize people for hepatitis B, and there are few medical centers or drugs available to treat those infected. In a cruel twist of fate, many people find out about their hepatitis B when they attempt to donate blood.

A road in northern Ghana. Photo by Ebenezer Akakpo.
A road in northern Ghana. Photo by Ebenezer Akakpo.

“It was on one fateful day in 2007, during my second year in college, when I decided to donate blood to help save the lives of pregnant mothers who undergo complications during deliveries,” wrote one young man who now works with the Hepatitis Foundation of Ghana. “Everything was OK, until the lab technician called out my name and told me they cannot let me complete the processes because my blood was ‘incompatible.’ He later handed me a fact sheet on hepatitis and requested that I read it thoroughly,” he recalled. “I felt so confused and didn’t know what to do. I thought I would be referred to see a physician for counseling but no, nothing. Not knowing what to do, I decided to educate myself.”

He went online and read several articles about hepatitis B. He learned the importance of avoiding alcohol and smokin and eating healthy foods. “In 2009, I took another test that revealed I was in the chronic stage of the infection,” he recalled. “Even the health professionals at that facility couldn’t explain what that really meant. I was confused and didn’t know if I was going to die or not.”

A year later, he had another test that showed the infection was not currently causing any liver damage. “I live in a community and country where the level of awareness about hepatitis is very low,” he explained. “The majority of the people are ignorant about the situation. I have lost some family members as a result of the disease.”

His research led him to the foundation in Ghana. “I no longer feel left alone. I now feel I have someone whom I could call upon for any information or seek clarification concerning my situation. Not only me, but for my community too,” he wrote.

The foundation, established by Theobald Owusu-Ansah, is attempting to educate people about hepatitis B to stop an infection that is killing thousands in Ghana. In Africa, hepatitis B is commonly spread during childbirth, through re-used syringes due to scarce medical resources and sexually. A lack of knowledge about hepatitis B and how it is spread, especially among healthcare workers and midwives, has also helped spread the disease.

Owusu-Ansah established the foundation in 2007 after four of his family members died from hepatitis B. He realized he had to take action to educate people about this deadly infection and get better treatment for people living with hepatitis B. Here is his story about a young woman diagnosed while attending nursing school.

Theobald Owusu-Ansah, president of the Hepatitis Foundation of Ghana
Theobald Owusu-Ansah, president of the Hepatitis Foundation of Ghana

“Initially, someone had put her on some herbal preparations and told her they would cure her ailment after she was first diagnosed with hepatitis B,” he recalled. Owusu-Ansah spent hours educating her about hepatitis B and she went for tests, which revealed she had liver damage. She was referred to a physician who prescribed the antiviral tenofovir (Viread) and recommended regular monitoring. After several months of treatment, her liver was healthy and her viral load was undetectable.

Years passed, she married and became pregnant. Osusu-Ansah reminded her that her babies would be protected against hepatitis B if they immediately received the first dose of the hepatitis B vaccine and HBIG within 12 hours of birth.

But things went wrong. She had stopped taking tenofovir. Her midwife gave her an herbal remedy for hepatitis B and told her the vaccine would be enough to protect the baby. It wasn’t, the baby became infected. The mother was devastated.

“Her story is not so different from many others’ experiences in some parts of Ghana,” he explained. “The unavailability of HBIG and the vaccine is challenging, and even when they are available, very few can afford them.”

In Ghana, and many other regions of Africa, the only vaccines available for free are combination (pentavalent) vaccines that contain vaccines for hepatitis B, diphtheria and other diseases. While economical, these combination vaccines cannot be administered until a baby is at least six weeks old, which is too late to prevent mother-to-child infection.

To break the infection cycle, a single dose (monovalent) hepatitis B vaccine must be administered within 12 hours of birth.

“I believe something can be done about this,” said Owusu-Ansah. “With government support, we need to expand our education campaigns to cover rural areas and take the message of hope to their doorsteps.”

For more information about the Hepatitis Foundation of Ghana, visit its website or email theobald2003@yahoo.com.

Baruch S. Blumberg Institute