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Category Archives: Hepatitis B Diagnosis & Monitoring

Doctors Get a New Tool to Improve Hepatitis B Treatment and Monitoring

Photo courtesy of CDC.
Photo courtesy of CDC.

By Christine Kukka

A recently-approved test now allows doctors to measure exactly how much hepatitis B surface antigen (HBsAg) people with chronic hepatitis B have in their blood; so why should patients get this test and how will it help the millions of people around the world infected with hepatitis B?

According to experts, including the Hepatitis B Foundation’s Medical Director Robert Gish, knowing a patient’s HBsAg levels gives doctors:

  • A better understanding of what stage of hepatitis B a patient is in;
  • A more accurate assessment of a patient’s liver cancer risk; and
  • Essential information to judge if it’s time to start or stop treatment.

And in the future, this test may be critical to finding a cure.

Don’t labs already test for HBsAg? HBsAg, the protein that makes up the surface of the virus, is what labs look for in a blood sample to determine if a person is currently infected with hepatitis B.

Historically, labs determined only if HBsAg was present or not, which is why patients either tested positive or negative for HBsAg. Recently, countries outside the U.S. began measuring the quantity of HBsAg in blood samples and late last year the Food and Drug Administration approved a quantitative HBsAg test in the U.S.

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

“The strange thing about HBsAg, is that each hepatitis B virus requires only about 100 HBsAg molecules to provide its envelope protein, but the virus produces about 100- to 1 million-times more HBsAg than is needed, leaving millions of HBsAg circulating in the bloodstream,” explained Timothy Block, president of the Hepatitis B Foundation and the Baruch S. Blumberg Institute, the foundation’s research arm.

That over-abundance of HBsAg is why people continue to test positive for HBsAg even if they have an undetectable viral load (HBV DNA).

Why is there so much HBsAg? Researchers, including Block, suspect that in addition to covering the virus’ surface, HBsAg also serves as a decoy to “exhaust” or deflect our immune system’s:

  • T-cells, so they can’t attach to and attack the virus,
  • And B-cells, so they don’t generate the antibodies needed to destroy the viral antigens that make up the virus.

So when HBsAg levels decline–either due to treatment or a strong immune response to the infection–researchers know a patient is on the road to clearing the infection. Bottom line: A low or undetectable HBsAg level means patients are winning the war against hepatitis B and their risk of liver damage is greatly reduced. 

When should doctors measure HBsAg? According to Quest Diagnostics, which created the test, measuring HBsAg levels better identifies which patients are at risk of hepatitis B reactivation.

For example, a patient may be HBeAg-negative and have normal liver enzymes (ALT/SGPT) that indicate a liver is “healthy,” but if HBsAg remain high, doctors know a patient remains at risk of reactivation and hasn’t really entered the safer, “inactive” stage.

Quest maintains that measuring HBsAg and viral load (HBV DNA) together, “…improves the ability to differentiate the phases in HBeAg-negative patients and HBeAg-positive disease and results in a diagnostic accuracy of 70 to 94 percent.

According to Quest, patients with HBV genotype B or C who have low HBV DNA levels (less than 2,000 IU/mL) and HBsAg levels below 1,000 IU/mL have lower risk of liver damage and cancer. In fact, if HBsAg is under 100 IU/mL, patients may be on their way to clearing HBsAg from their blood.

Dr. Robert Gish
Dr. Robert Gish

Knowing for sure when treatment is working: HBsAg levels also reflect the amount of virus protein produced by infected liver cells and if treatment is effectively stopping the virus from producing these proteins. If a patient is treated with pegylated interferon, a decline in HBsAg during the first 12 weeks indicates a successful response to the drug. No change in HBsAg levels indicates interferon will not be effective.

HBsAg changes may also determine if antivirals are working. “In HBeAg-negative patients, low (HBsAg) levels at the end of treatment are associated with sustained virologic response,” Quest officials noted.

If patients have been treated with antivirals for many months or years and achieve undetectable viral load and low HBsAg levels, doctors may consider taking them off the drug.

Dr. Gish considers this new test an essential tool that providers should employ and patients should ask for to get an accurate picture of their infection state and liver cancer risk.

“I use it today to determine when to start treatment, assess a patient’s prognosis while on treatment, enhance patient compliance and determine when treatment can be stopped or should be continued,” he explained. “And this will also be an extremely helpful tool for drug developers in the future to identify promising treatments.”

Because lowering or eradicating HBsAg appears essential to stopping chronic infection and empowering the immune system to fight this complex infection, researchers around the world are working to develop treatments that inhibit HBsAg.

“I am a big believer in finding drugs that suppress HBsAg,” Dr. Block noted. Two of these surface antigen eradicator products are currently in Phase II trials.

Ten Things You Should Know About Hepatitis B and Do in 2017

Image courtesy of krishna arts at FreeDigitalPhotos.net
Image courtesy of krishna arts at FreeDigitalPhotos.net

By Christine Kukka

It’s 2017, and experts around the world continue to study the complex life cycle of the hepatitis B virus in order to find a chink in its armor that will lead to a cure. In 2016, there were successes and disappointments in the research and healthcare arena. Here is what you need to know about hepatitis B in 2017.

If you’re taking tenofovir, ask your doctor about TAF if you’re experiencing kidney problems or bone loss, especially if you’re an older woman. If you’re taking the antiviral tenofovir (Viread) long-term, ask your doctor about replacing it with TAF (Vemlidy). TAF is a reformulated version of tenofovir that delivers the antiviral more effectively to liver cells at a lower dose.  Currently, doctors prescribe either tenofovir or entecavir for liver damage. Entecavir does not cause bone loss, but it doesn’t work in people who have developed drug resistance to lamivudine or adefovir. For them, tenofovir is the only option, but it can cause bone loss and kidney problems when used long-term. With the U.S. Food and Drug’s recent approval of TAF, consumers can now get tenofovir’s robust antiviral activity at a lower dose. Because it’s brand new, your provider may not know about it, so ask about it to see if it would be better for you.

Was medical or recreational marijuana just approved in your state? Exercise caution. Many in the hepatitis C community have used medically-prescribed marijuana to ease side effects from interferon for years, so many assume it’s also safe for people with hepatitis B. Unfortunately, there are no studies that conclusively prove its safety. One study  that monitored liver fibrosis in 700 people coinfected with HIV and hepatitis C found, “…no evidence for an association between cannabis (marijuana) smoking and significant liver fibrosis progression in HIV/HCV coinfection.”

But another study  concluded: “Cell culture and animal model studies support that (marijuana) could have a therapeutic effect on liver injury and fibrosis progression. However, three cross-sectional studies in patients with chronic hepatitis C suggest that daily cannabis use is associated with fibrosis and steatosis.”

There is also no information indicating if marijuana is safer when it’s consumed in edibles vs. smoked, though many assume smoking introduces more toxins and chemical to the body. Bottom line: Just because your state approved it doesn’t mean marijuana is safe for you. Talk to your doctor and watch for more studies.

Image courtesy of Nanhatai8 at FreeDigitalPhotos.net.
Image courtesy of Nanhatai8 at FreeDigitalPhotos.net.

Fight for affordable healthcare for all. Newly-elected federal officials are threatening to fundamentally change a variety of healthcare insurance programs serving moderate- and low-income Americans and roll back protections, including mandated coverage of pre-existing conditions like hepatitis B. Many of these programs and coverage mandates have helped people living with hepatitis B get the care and medications they need. If you want these programs and safeguards to remain, you’re going to have to fight for them. Please check the Hep B United’s website regularly to learn about what is happening with hepatitis B on the federal level, and what you can do as an advocate.

Don’t give up hope. We know it’s been a tough year and that some promising drugs that were in clinical trials were shelved, but don’t give in to despair. There are more drugs in the works. Keep checking the Drug Watch page and clinical trials page to learn the latest.

Get monitored regularly. No one likes a blood draw, but it’s important to be tested annually or more often if you have a high viral load and/or signs of liver damage. There may not be a cure yet, but there are effective treatment options. Be brave, protect your health, and go to the lab for your blood test.

Demand to be screened for liver cancer. Some experts say current medical guidelines don’t go far enough to screen us for liver cancer. So take charge of your health and ask for a liver cancer screen, which includes a semi-annual blood test and an ultrasound.  Hepatitis B-infected Asian men (or of Asian descent) over age 40 years and Asian women over age 50 years, patients with a family history of liver cancer, patients with cirrhosis, and Africans over the age of 20 should all be screened. Think you’re not at risk for cancer because you take antivirals? Think again. Antivirals help reduce liver damage, but if you’ve had cirrhosis or are older, the risk of liver cancer remains.

If someone promises a new cure or treatment that sounds too good to be true….it probably is. In our search to be rid of hepatitis B, we may be tempted to yield to clever marketing and try a supplement that promises to cure us. But first, do your homework and practice precaution. To check out an herbal supplement, visit the National Center for Complementary and Integrative Health’s website to see what scientific evidence exists for a supplement and talk to your doctor. There is no magic bullet that will cure hepatitis B. Experts hope to find one soon, but for now be patient and stay skeptical. If you want to safeguard your health, eat healthy foods and avoid alcohol and cigarettes.

Pregnant with hepatitis B? Get your viral load tested and ask your doctor about antivirals. The American Association for the Study of Liver Disease (AASLD) recommends that pregnant women with viral loads (HBV DNA) higher than 200,000 IU/mL (or 1 million copies/mL) receive an antiviral (either tenofovir or telbivudine). The antivirals won’t hurt you or your baby and will reduce the risk that your baby will be infected with hepatitis B to nearly zero, as long as your baby gets the first dose of the hepatitis B vaccine and a dose of HBIG (hepatitis B antibodies) within 12 hours of birth.

Fight discrimination against hepatitis B and know your rights. Hepatitis B should never be a barrier to the education or job you want. Sadly, ignorance and stigma persist. It depends on us, our friends, and our family, to stand up and fight for our civil rights. We can’t back down. If we don’t fight, who will?

Be brave, disclose, and get your friends, family, and lovers screened for hepatitis B and vaccinated. Yes, it will be one of the hardest conversations you will ever have, but if you are infected with hepatitis B, you need to disclose your infection to people who may be at risk. If you just discovered you have chronic hepatitis B, which you may have contracted at birth, you need to tell your siblings and your mother and get them screened and immunized if needed. Dating someone, and about to take the next step? You need to disclose ahead of time and give them information and choices. It builds trust and it’s the right thing to do. You would want the same for yourself. For more on disclosure click here.

Happy 2017!  Our hope for a cure continues.

As of January 2017, TAF has been approved for hepatitis B treatment in the U.S., Europe and Japan.

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

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 Foundation Launches Education Initiative for People Coinfected with Hepatitis B and D

hepc-graphicBy Sierra Pellechio

The Hepatitis B Foundation is excited to launch the Hepatitis Delta Connect program to provide education and resources for patients and families affected by hepatitis D, the most aggressive form of viral hepatitis. Hepatitis D infection requires the presence of the hepatitis B surface antigen (HBsAg), so only people already infected with hepatitis B can become infected with hepatitis D.

There is a large gap in knowledge and awareness about this virus, and the foundation is working to provide easily-accessible information and support to those in need.

Because the hepatitis D virus (HDV) is acquired only if a hepatitis B infection is present, it can be effectively prevented through hepatitis B vaccination. While hepatitis D is not common in the United States, worldwide it affects 15-20 million people.

Areas with the highest rates of hepatitis D infection rate include China, Russia, the Middle East, Mongolia, Romania, Georgia, Turkey, Pakistan, Africa and the Amazonian river basin. It is transmitted through direct contact with infected blood and bodily fluids, and most commonly affects high-risk groups such as intravenous drug users, men who have sex with men or have multiple sexual partners, and people emigrating from countries where hepatitis D is common.

Hepatitis D can be acquired either through coinfection (becoming infected with hepatitis D and B at the same time) or a super-infection (becoming infected with hepatitis D after a person has hepatitis B). A coinfection generally resolves spontaneously after about six months, but it can sometimes result in life-threatening or fatal liver failure. Like hepatitis B, hepatitis D may not present with any symptoms, so getting a simple blood test is the only way to know if you are infected.

Hepatitis B Foundation Health Outreach Coordinator Sierra Pellechio
Hepatitis B Foundation Health Outreach Coordinator Sierra Pellechio

Treatment options are limited, but pegylated interferon has shown some effectiveness in a small percentage of patients (less than 30 percent). The good news is that there are five promising drugs currently in clinical trials. Visit our HDV Drug Watch and Clinical Trials page for more information about these drugs. We at the Hepatitis B Foundation appreciate the support of Eiger Biopharmaceuticals to help launch this valuable patient-focused program.

Hepatitis D is a complicated virus, and for this reason, it is very important for patients to find a knowledgeable liver specialist (or hepatologist) who can provide the best care and management.

The most important message for those living with hepatitis B is to get a simple blood test to find out if they have hepatitis D if they believe they are at risk. There are promising new treatments that could help prevent the serious complications related to a hepatitis B and D coinfection.

As the coordinator of Hepatitis Delta Connect, I am thrilled about this opportunity to help create a resource for patients who are living with hepatitis D. My experience in health literacy and community outreach blend with my commitment to support those in need, allowing me to promote the project in ways that will help raise the visibility of hepatitis D and let the 15-20 million infected people know that they are not alone.

In addition to our website, please email questions to connect@hepdconnect.org follow us on Facebook, Twitter and Instagram (@hepbdconnect) to join the global conversation. We look forward to hearing from you.

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"

You’ve Lost the Hepatitis B Surface Antigen, Go Celebrate, But Keep Monitoring

By Christine Kukka

Image courtesy of stockimages at FreeDigitalPhotos.net
Image courtesy of stockimages at FreeDigitalPhotos.net

After years of living with “inactive’ chronic hepatitis B—with low viral load and no signs of liver damage–some patients may finally lose the hepatitis B surface antigen (HBsAg) and even develop surface antibodies.

This event merits a celebration and a huge sigh of relief, but if you think you will never have to get another blood draw or worry about your liver, think again. We hate to be the bearer of bad news, but hepatitis B really never goes away.

Image courtesy of stockimages at FreeDigitalPhotos.net
Image courtesy of stockimages at FreeDigitalPhotos.net

Think herpes, mono, or chicken pox and shingles. Children infected with chickenpox get rid of the infection and the ugly blisters, but very small amounts of the chickenpox (varicella) virus remains in the spinal nerves. As we grow older and our immune systems weaken with age,  our bodies aren’t able to suppress the varicella virus any more and it reactivates, causing painful shingles.

The hepatitis B virus (HBV) behaves in the same way. When we lose HBsAg and even develop surface antibodies (anti-HBs), there are still HBV lurking in our livers. When we’re healthy, our immune systems suppress the virus and prevent any reactivation, but old age or another disease or medical condition can weaken our bodies and allow the viral infection to reactivate.

So, even after we clear HBsAg, we need to stay vigilant and continue to get our liver health monitored regularly. Here is what you need to know:

First, what are my chances of ever getting rid of HBsAg and developing the surface antibody? It can happen, especially in older adults after a long period of “inactive” hepatitis B infection.

About 1 to 3 percent of people with chronic hepatitis B lose HBsAg each year, and about half of all people with chronic infections who live up to age 75 will lose HBsAg, depending on the amount of HBV DNA in their blood.

Your chances of losing HBsAg and developing the surface antibody increase if you have a healthy lifestyle and avoid alcohol, cigarettes and obesity (fatty liver). Another report found that people with the hepatitis B strain or genotype C have higher rates of clearing HBsAg over time than those with genotype B.

Image courtesy of taoty at FreeDigitalPhotos.net
Image courtesy of taoty at FreeDigitalPhotos.net

Once you clear HBsAg, the chance of developing surface antibodies over the next two, five and 10 years are 24 percent, 58 percent and 78 percent respectively, according to a recent report in the September 2016 journal of Epidemiology and Infection.

After I clear HBsAg, how often do I need to get my liver health monitored? According to Dr. Robert Gish, medical director of the Hepatitis B Foundation and professor consultant of gastroenterology and hepatology at Stanford University, once you have cleared HBsAg, 12 months later you need to:

  • Check all of your liver enzymes and liver function
  • Get your platelet count and hepatitis B blood tests done, and
  • Have an ultrasound of your liver and spleen.

These tests become your new “baseline” that your doctor can refer too in the years ahead while monitoring your liver health.

Your baseline ultrasound should examine your liver and measure its portal vein (it should be under 12 mm) and spleen (it should be under 12 cm) to make sure it’s normal with no signs of cirrhosis or portal hypertension.

If you had cirrhosis before you cleared HBsAg: You need to be surveyed for liver cancer (with an ultrasound, alpha fetoprotein (AFP) blood test and a Des-gamma-carboxy prothrombin (DCP) test) every six months for at least five years, because cirrhosis puts you at high risk of liver cancer. Once an ultrasound finds no evidence of cirrhosis and all other tests are normal, including the cancer tests, then the testing can become less frequent and your doctor can prescribe a new monitoring schedule.

If you’ve had elevated liver enzymes (called ALT or SGPT) in the past, (higher than 19 in women and 30 in men), you need to continue to get tested every six months until you’ve had two consecutive healthy ALT readings. If your ALT remains elevated, make sure you are not drinking alcohol and do not have fatty liver disease. Talk to your doctor about a new monitoring schedule.

Tell all of your current and future doctors you’ve had hepatitis B, and beware of immune-suppressing drugs used to treat various cancers and rheumatoid arthritis. Our immune systems, which are working to keep the residual HBV in our bodies in check, can also take a hit from medications that deliberately suppress our immune systems in order to fight cancer, psoriasis or rheumatoid arthritis.

According to medical guidelines, all oncologists and other specialists who use these powerful drugs are supposed to test all  their patients for hepatitis B and carefully monitor anyone who had hepatitis B in the past, which is indicated by a positive test for the hepatitis B core antibody (anti-HBc).

Even if you’ve cleared HBsAg, doctors may pre-emptively treat you with antivirals during and after your treatment for cancer, immune disorders such as arthritis or psoriasis, and hepatitis C and monitor your HBsAg and viral load regularly to make sure your hepatitis B does not reactivate.

These screening guidelines exist, but no one is perfect and your oncologist may not know you’ve been infected, may forget to screen you for hepatitis B, or may not understand the testing. So, tell everyone if you have an active or resolved hepatitis B infection. The last thing you want is to be battling both cancer and a reactivated hepatitis B infection simultaneously.

While hepatitis B never really goes away, once you clear HBsAg your risk of liver damage and liver cancer diminish tremendously. It’s worth a celebration, but you need to continue to be monitored as you age.

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

Newly Diagnosed with Hepatitis B? Acute or Chronic? Learning the HBV Basics…

Image courtesy of dream designs at FreeDigitalPhotos.net
Image courtesy of dream designs at FreeDigitalPhotos.net

If you’ve just been diagnosed with hepatitis B after a routine blood test or following a blood donation, you may be feeling overwhelmed with information about this complicated infection and references to acute or chronic hepatitis B.

Here is an explanation of these two terms and what happens when you’re first infected with the hepatitis B virus (HBV). Hepatitis B is transmitted through blood and body fluids. It can be spread during unprotected sex, unsafe medical procedures, exposure to blood that enters your body through a cut,  or by sharing personal items such as body jewelry or toothbrushes. Most commonly it is spread during childbirth when the mother is infected.

What is a chronic infection? When we’re infected as newborns or young children, our immature immune systems don’t notice or fight the virus and it travels to our liver and begins reproducing. With no opposition from our immune systems, a hepatitis B infection can continue for years. When a hepatitis B infection lasts longer than six months, it is considered a chronic or long-term infection. Most people with chronic hepatitis B were infected at birth or during early childhood. Immunization with the hepatitis B vaccine and hepatitis B immune globulin (HBIG), if available, within 12 to 24 hours of birth can break this mother-to-child infection cycle, but the birth vaccine dose and often HBIG is not always available around the world.

What is an acute infection? When we’re infected with HBV as healthy adults, about 90 percent of us are able to get rid of the infection within six months. It can take up to six months for our immune systems to generate antibodies and eradicate the infection in our liver. This short-term infection is called acute hepatitis B.

To determine if you have an acute or chronic infection, you must be tested for hepatitis B over a six-month period. The specific test that indicates if you are infected is the hepatitis B surface antigen (HBsAg) test. This antigen covers the surface of the virus and usually there are lots of HBsAg in your blood when you’re infected. If you test positive for HBsAg for longer than six months, it means you have a chronic hepatitis B infection.

But, if you no longer test positive (or “reactive”) for HBsAg after six months and you develop hepatitis B surface antibodies (HBsAb), then you have cleared hepatitis B after an “acute” infection. There are some additional blood tests that your doctor may order to get a better understanding of your infection, but not everyone has access to these tests. Some tests are rather expensive and they may still need to be repeated over time in order to confirm the diagnosis. Please be patient. The good news is that hepatitis B is not typically an emergency.

Here is more good news. If you are a healthy adult and are newly or acutely infected, know that your chances are good that the hepatitis B infection will go away on its own. It is rare that you require medication to get rid of the virus, your immune system does that for you.  A person with a new hepatitis B infection may not have any symptoms, or they may not be very notable. For example, you might feel more tired. About 70 percent of people newly-infected with hepatitis B never experience symptoms.

But, some people experience severe symptoms like jaundice (yellowing skin or eyes), severe nausea or vomiting, or a bloated stomach (unrelated to your weight), and they need to see a doctor immediately. If you have a new or acute infection, even these drastic symptoms may not necessarily mean that you need any form of treatment, but you will need to be monitored with additional tests to make sure your liver is safe.

If you can’t confirm you were infected as a child, you will need to wait the six months to find out if you cleared your infection. Please be patient and do not panic, but remember you do need to take precautions during this time to make sure you don’t spread the infection to others. Practice safe sex (use a condom), and don’t share personal items that may have trace amounts of blood on them.

Also, you can suggest that your family members get screened for hepatitis B and vaccinated if needed. If you were infected at birth, there is a chance that your siblings may also be infected. Sexual partners and close household members should also be tested. There may be a nine-week period right after infection when they may not test positive for HBsAg even if they have been infected.

Celebrate Mothers’ Day with High-Quality Healthcare First, Sentimentality Second

Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net.
Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net.

By Christine Kukka

In 1914, the United States designated the second Sunday in May as “Mothers’ Day.” Its founder, Anna Jarvis, hoped the holiday would focus on her own mother’s work promoting peace and public health. Years later, Jarvis protested loudly when the holiday became better known for sentimentality and greeting card sales.

Our nation often loses sight of a holiday’s original intent, but this Mother’s Day we can bring back the goal of preserving public health, especially where it concerns mothers and infectious diseases.

Decades ago, researchers developed one of the most extraordinary life-saving vaccines–hepatitis B immunization. It saves lives in two ways: It protects children and adults from infection and it breaks the vicious cycle of mother-to-child infection. A baby born to a hepatitis B-infected almost always becomes infected. The vaccine, administered within hours of birth, breaks that cycle.

When the vaccine debuted in the late 1970s and early 1980s, most people with chronic hepatitis B had been infected at birth. When newborns and children are infected, their immune systems don’t recognize or attack the virus and the infection can continue indefinitely.

To stop this infection cycle, today all pregnant women are screened for hepatitis B. Babies born to infected women are immediately vaccinated and treated with HBIG (hepatitis B antibodies). This public health initiative has been extremely successful in dramatically reducing hepatitis B. However, the campaign’s focus has been primarily on newborns and the hepatitis B-infected mothers were often forgotten. Though hepatitis B infections had been identified, the infected mothers were often lost to follow-up, and this neglect continues today. Continue reading "Celebrate Mothers’ Day with High-Quality Healthcare First, Sentimentality Second"