Hep B Blog

Tag Archives: HBV Awareness

Hepatitis B Advocacy, Living with Hepatitis B

#Tri4ACure: From Hepatitis B Diagnosis to Advocating for a Cure

 

 

 

 

 

 

 

 

 

Meet Edwin Tan – a 29-year-old mechanical design engineer from Minneapolis, Minnesota! In 2014, Edwin was diagnosed with hepatitis B. Like many others living with hepatitis B, his diagnosis was a shock. Before his diagnosis, all he knew was that he was banned from giving blood to the Red Cross, but no one had explained the reason why. A routine blood test provided no explanations either, so his doctor decided to test for hepatitis B. The test revealed that Edwin was living with chronic hepatitis B.

After his diagnosis, Edwin decided to learn all that he could about the infection. Through his research, he found that one of the best ways to keep his liver healthy was through small lifestyle changes. Edwin began to pursue healthier life choices by increasing the amount of exercise he was getting and paying closer attention to his diet. Although he loved craft beer, he knew that drinking could be extremely dangerous to those with liver infections, so he willingly gave up all alcohol. Edwin’s dedication to a more active lifestyle led him to challenge himself by competing in local races and triathlons.

Edwin’s journey led him to realize that there is a lack of awareness about hepatitis B. He noticed that the stigmas facing those living with hepatitis B could take a physical and mental toll on an individual and impact how they viewed themselves. Edwin’s observations inspired him to reach out to the Hepatitis B Foundation to raise money and awareness for hepatitis B research, patient outreach, and education. Since his passion for racing was discovered due to his commitment to health after his diagnosis, it seemed appropriate for him to use his love of sports to fundraise for hepatitis B awareness and research! He hopes that his athletic achievements help others living with hepatitis B to realize that they are more than their infection.

Now, Edwin is training for a series of six races—triathlons, a marathon and an ironman – and we’ll be with him every step of the way! You can make a gift to support Edwin’s fundraising efforts here.

“I want to be a positive example against the stigma associated with Hep B and the shame that some people may feel for having it. Completing an Ironman, which is regarded as one of the most difficult one-day athletic events, serves as a good example that we each can accomplish anything we want as long as we believe in ourselves.”

To follow updates on Edwin’s journey, you can follow the Hepatitis B Foundation or Hep B United on Facebook. Be sure to use the hashtag #Tri4ACure!

Hepatitis B Advocacy

Creating a #HepBFree Future in Arizona

Layal Rabat, Empowerment and Advocacy Manager at Asian Pacific Community in Action (APCA), provides an inside look into APCA’s hepatitis B efforts in Arizona.

Asian Pacific Community in Action (APCA) was formed in 2002 to meet the health-related needs of Asian Americans and Native Hawaiian and Pacific Islanders (AA & NHPI) residing in Arizona. Our vision is to inspire diverse communities to seek healthier futures. Our mission is to provide services, advocacy and education for diverse communities to help create a healthier and more empowered population seeking good health. In addition to hepatitis B testing, education, and referrals, APCA’s programs include Oral Health Advocacy, Advocacy Training, Policy Work, , Messaging/Storytelling , the Affordable Care Act, Medicaid, SNAP enrollment assistance, Civic Engagement, and Pop-up Health Fairs & Clinics.

Engagement Through Storytelling 

Over the years, we’ve prided ourselves on our creativity and thinking of ways to connect with communities through arts and innovative practices. This has led to the creation of  #HepBGirl and the HepBoo basketball fundraiser to support our hepatitis B efforts.

APCA’s most recent work has been centered around a mini-grant project generously funded by Hep B United – a national coalition to address and eliminate hepatitis B. The goals of the mini-grant were to help establish or contribute to hepatitis B prevention, education, linkage to care, and surveillance on a local level. APCA focused on education and empowerment by implementing the Hepatitis B Foundation’s (HBF)  #justB storytelling campaign into the community.

The project timeline was based on the recruitment of storytellers, conducting storytelling events, and conducting the analysis. The biggest lesson learned is that recruitment can take the most time out of all of the goals. We were aware of the stigma around talking about the infection and wanted to conduct our work in an ethical, sensitive way. To do this, we worked with a provider who helped by offering the opportunity for their patients to share their experiences. The patients could then choose whether to contact us or not. We also assured those that chose to speak that we would not publish any of the stories without their explicit approval and consent. To respect participant time and efforts and reduce the labor required of them for the event, APCA took great care to do as many of the preparations as possible, simplify the questions being asked, and conduct the events in a manner that respected their emotional labor and centered their explicit consent.

Hepatitis B In Arizona

Centered upon vulnerable populations such as older Asian American and Pacific Islander (AAPI) adults who were born before certain vaccine policies, APCA’s hepatitis B work includes addressing policy issues, access to care, and direct services. Direct services around hepatitis B included screenings, vaccinations, and referrals to care and treatment. In the past, APCA tested 2,869 people and found that 6.7% had active hepatitis B infections. An additional 31.2% were not vaccinated.                                                                                     

Arizona’s hepatitis B story mirrors that of the United States overall. From 2006 – 2015, an average of 979 chronic hepatitis B and 128 acute hepatitis B cases were reported each year in Arizona, though there has been a decrease in the number of acute hepatitis B cases identified in recent years. 
The rate of new reports of acute hepatitis B was highest among persons aged 40-44 years. Chronic hepatitis B rates were highest among those 30-34 years. 
The average annual rate of hepatitis B infection among Asians/ Pacific Islanders was much higher than other racial/ethnic groups (1,2). 

Looking Towards the Future

The mini-grant opportunity will help to launch #HepBFreeArizona – a campaign aimed at eradicating hepatitis B in the state. We hope to continue working with those that shared their stories to help build our future hepatitis B program and get it to a level where we can provide a space for patients living with hepatitis B to lead the way. The same barriers that prevent community members from accessing care also hinder their efforts to get involved in advocating for the policy changes that will alleviate those barriers. We are always learning how to balance community member autonomy and valuing their labor with respect to the time and effort they contribute and not taking more than we are giving.

Thank you to Layal Rabat for serving as our guest blogger this week! If you would like more information from Layal or the Asian Pacific Community in Action, please visit their website or contact them here.

 

Layal Rabat is a third culture kid who has spent years practicing the fine art of parachuting into projects as the need for her skills arises. She takes an intersectional approach to her work and does not shy away from any cause where injustice is present and her contribution is welcomed and necessary. Her experience lies in project management, traditional and digital communications using all mediums from her own voice to videos to writing to tweeting, assembling audience-specific information for delivery in an infinite amount of ways. An infinitely curious researcher and an obsessive collector and assembler of information, she is often seen playing a supportive role in the background and amplifying the voices of those directly affected by injustice in her community. Fluent in English & Arabic, intermediate in Spanish & knows a tiny bit of Armenian. Current issues are immigrant rights and public health. With a BS in Psychology & an MA in Social Justice & Human Rights, she is currently working as the Empowerment & Advocacy Manager at the Asian Pacific Community in Action, and volunteering her time as IT/Web & Social Media Coordinator at Phoenix Allies for Community Health. She also volunteers with the Restoration Project, Phoenix, and serves as a board member with Sonoran Prevention Works. In her spare time, she enjoys listening to music (& karaoke), reading, writing, photography, and traveling.

 

References

  1. 2016, Viral Hepatitis Epidemiologic Profile for Arizona
  2. 2016, Arizona Department of Health Services

 

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

Navigating Our Emotions When We’re First Diagnosed with Hepatitis B

Image courtesy of Pixabay

When we’re first diagnosed with hepatitis B, our physical health isn’t the only thing we need to focus on. Many of us experience powerful surges of fear, anger, sadness, powerlessness, depression, and anxiety.

No matter what you’re feeling, you have a right to feel whatever emotions are welling up – sometimes unexpectedly – inside you. There are no right or wrong feelings, they just are, and it’s up to you to decide what choices you make and how to respond to them.

When my daughter was first diagnosed, she was a toddler and happened to be coming down with a cold. I knew nothing about hepatitis B and was convinced she would soon die from it given her crankiness, lethargy, and nonstop sleeping.

Within a day or two, she was her smiling, energetic self again, and I happily slipped into denial. Surely the test was wrong or there was a mix-up in the result. My husband dragged his feet for weeks before he agreed to be screened for hepatitis B so great was his denial and fear.

Denial is a normal first reaction, it can give us some  breathing room to get used to the idea that we’re infected. But denial can also be dangerous, especially if we’re in a sexual relationship with someone and don’t take precautions. Denial can be dangerous when we hide our infection and don’t tell our family members or partners, even though they may have been exposed. Denial is dangerous when we don’t tell our parents, who may not know they’re infected and unknowingly passed the virus to us at birth.

It’s important to talk out our feelings with a doctor, a therapist, or a friend you trust. We need to move through denial so we can begin to receive the care and support we need, and talk to others who may also be at risk.

Anger is another common and natural feeling after a diagnosis. It’s OK to get upset about how we or our family members were infected, or get angry that our parents or lovers didn’t know they had the virus and infected us. Try to talk about your anger with counselors or friends, get some exercise to work off your tension and avoid situations—including drugs or alcohol—that can ignite festering emotions.

It’s normal to feel sad, and sometimes the sadness doesn’t go away quickly. If you feel prolonged sadness, anxiety, or fear, or find you’re gaining or losing weight or sleeping more or less than usual, it’s time to talk to someone who can help.

Fear and anxiety are common because we don’t know what’s going to happen next. If you’ve just been diagnosed, you may have to wait six months for another test to show whether you were recently infected and have acute (short-term) or were infected as a child and have chronic (long-term) hepatitis B. That wait can be insufferable.

Our stress can cause a host of physical symptoms, ranging from headaches to fatigue, that may have nothing to do with hepatitis B. It’s important to talk to your doctor about these symptoms so you know what is hepatitis B-related, and what’s caused by worry and fears.

At this early stage, many of us want to get rid of the virus as soon as possible and we’re willing to try any supplement or treatment available, even if our doctors tell us we’re healthy and don’t need any treatment. At this early diagnosis point, we just need to take care of ourselves, eat healthy foods, avoid alcohol and cigarettes, and get monitored regularly, even though what we really want is a magic pill that will make this infection go away.

In normal grief cycles, there is a point of acceptance. But I’m not sure we totally ever accept this loss of our “perfect” health, and our ability to have sexual relations, give birth, or drink a glass of wine without thinking of the shadow hepatitis B casts over these activities.

As a wise friend has pointed out, we need to accept that hepatitis B is part of us, but it doesn’t have to define us. Perhaps getting to that realization is the journey we begin when we read that first lab report and hear the diagnosis.

For support and information from other people living with hepatitis B, join the Hepatitis B Information and Support Email List at  http://hblist.net

Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention, Living with Hepatitis B

Diagnosed with Hepatitis B? Preventing Transmission to Others Learning the Hep B Basics, Transmission Part II

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Part I discussed how hepatitis B is transmitted and may have helped you determine how you were infected with hep B.   In Part II we will discuss the people closest to you who may be susceptible to your infection.

Anyone exposed to Hep B is susceptible. This is true if you have not already been vaccinated, or are not taking precautions. Hep B does not discriminate. However, those most susceptible to infection are your sexual partners, close household contacts or family members. Why are the these people more susceptible?  Remember that HBV is transmitted through direct contact with blood and sexual fluids, so sexual partners will be at risk. Unfortunately even close contacts without sexual intimacy may also be at risk. These include family members or roommates that might borrow your razor, the nail clippers on the downstairs counter, or your favorite pair of pierced earrings or body jewelry. Such personal items may have trace amounts of blood on them. All you have to do is keep them separate until everyone is tested and vaccinated.

Hepatitis B is NOT spread casually. You will not get HBV by co-existing in the same house, sharing a meal or eating food prepared by someone with hepatitis B. You will not get hep B by sneezing, kissing, hugging or holding someone with hepatitis B.

Hepatitis B can live outside the body for a week. It just makes sense that the odds of an exposure are more likely with someone you live with just due to the increased potential for daily exposure in simple grooming routines or household activities where blood could be exchanged. The good news is that hep B is preventable.

It is important to know that unvaccinated babies and young children are more susceptible to Hep B. In fact 90% of babies and up to 50% of young children infected with hep B will have life-long infection. This is a complicated topic, but basically their immune systems are immature. That is why young babies and young children may have high viral loads, but usually less damage. The immune system gets tricked and the virus replicates unchecked in liver cells.  That is why hepatitis B vaccine series, starting with a birth dose, is so important for babies and young children.

So what should you do? You need to do the right thing. You need to talk to sexual partners and close contacts and family members now that you know you are infected. You don’t need to tell everyone; just those that you believe are at risk. Tell them to ask their doctor to run a hepatitis B panel.

The hepatitis B panel is one blood test with 3 parts: HBsAg – surface antigen;  HBcAb – core antibody; and HBsAb – surface antibody.  When read in combination, this one test can tell your close contacts if they are currently infected, have recovered from a previous infection, and whether or not they have immunity to the hepatitis B virus. Typically the blood test results are straight forward, but sometimes they can be tricky. Ask those tested to discuss their results with their doctor, and to keep a copy of the blood tests results for later review.

One important factor for those that may have been exposed is the timing. There is up to a 9 week window period between an exposure to hep B and when the hepatitis B virus shows up in the blood resulting in a positive test result.  If you tell your partner and they insist on immediate testing, they need to understand that they will need to be re-tested 9 weeks later to ensure whether or not they have been infected. AND, it is essential to practice safe sex and follow general precautions until everyone is sure of their status –both the known and potentially infected.

Remember you may still be in a waiting period trying to determine if you are acutely or chronically infected. Very possibly you have not had symptoms with your hep B. Nearly 70% of those with newly infected with HBV have no notable symptoms. It’s also very likely you are unsure when you were infected.  And of course it’s possible you are chronically infected and have had hep B for quite some time. It’s stressful and little confusing not knowing the details of your infection, but you need to move forward doing the right thing and talking to those at risk and taking care of yourself.

Take a look at Part I and Part III for further discussion of hep B transmission.

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

One in Three People Worldwide Has Had Hepatitis B, So Why Do We Feel So Alone?

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Volunteers from the Rann India Foundation teach villagers about hepatitis B testing and prevention in India.
Volunteers from the Rann India Foundation teach villagers about hepatitis B testing and prevention in India.

By Christine Kukka

Hepatitis B is the global pandemic no one talks about, yet one in three people worldwide has been infected. In 2013, hepatitis B and C together was the seventh-leading cause of death worldwide, with hepatitis B causing 780,000 deaths annually.

Today, 257 million people have chronic hepatitis B. Despite the availability of an effective vaccine, the number of people living with hepatitis B virus is projected to remain at the current, unacceptably high level for decades and cause 20 million deaths through 2030.

How can this happen? Viral hepatitis infection and death rates far outstrip that of ebola and zika. In fact, you have to combine the death toll from HIV and tuberculosis to find human suffering on par with what viral hepatitis causes around the world each year. Continue reading "One in Three People Worldwide Has Had Hepatitis B, So Why Do We Feel So Alone?" →

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

Celebrate Asian-Pacific American Heritage Month, And Get Tested for Hepatitis B

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Image courtesy of hin255 at FreeDigitalPhotos.net
Image courtesy of hin255 at FreeDigitalPhotos.net

May is Asian-Pacific American Heritage Month – a celebration of Asians and Pacific Islanders in the United States. The month of May was selected in 1978 to mark the first major Japanese immigration to the United States (May 7, 1843), and the completion of the transcontinental railroad (May 10, 1869), built primarily by Chinese immigrants.

Like all immigrants, Asians and Pacific Islanders brought with them unique cultures, languages, and lingering health problems from their homeland, including hepatitis B.

This blood-borne infection, unknowingly passed from mother-to-child, is an infection without a cure that would impact Asian immigrants and their children for decades until a vaccine was developed.

Today, administration of the first dose of the hepatitis B vaccine along with a dose of HBIG within 12 hours of birth severs this viral legacy and protects newborns from inheriting this infection. But that is not the end of the story. There are still many Asian-Americans who remain infected, and many Asian immigrants arriving today live with hepatitis B.

An estimated one in 12 Asian-Americans currently has hepatitis B, and two in three don’t know they are infected. Their infection rate is more than 20 times higher than that of the total U.S. population. Hepatitis B is the greatest health disparity between Asian-Americans and the general U.S. population. Approximately 1 million Asian-Americans are living with chronic hepatitis B infection – that’s about half of all cases in the United States. Continue reading "Celebrate Asian-Pacific American Heritage Month, And Get Tested for Hepatitis B" →

Hepatitis B Advocacy, Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention, Liver Cancer, Living with Hepatitis B

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

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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" →

Hepatitis B Advocacy, Liver Cancer

Beating the Odds: A Liver Cancer Survivor’s Story

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Liver cancer, caused by hepatitis B and C, is on the rise in the U.S. and it is also the second deadliest. Fewer than 15 percent of patients with liver cancer will survive five years after their diagnosis. It is the third-leading cause of cancer deaths among Asian-Americans and the eighth-leading cause of cancer deaths among Caucasian-Americans.

Despite this bleak outlook, there are people with liver cancer who are beating the odds and surviving. The medical community is also working hard to develop new drugs and effective strategies to treat liver cancer. Here is one survivor’s story.

By Frank Gardea

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

In late 2008, during routine testing before surgery, I found out I had hepatitis C and liver cirrhosis. It was a double whammy because having both viral hepatitis and cirrhosis put me at high risk for liver cancer.

Then the abdominal pain started. I suffered for almost three years and was in and out of the emergency department. They could not pinpoint the cause of the pain. When they finally diagnosed my liver cancer, the tumor was over 8 cm in size. Continue reading "Beating the Odds: A Liver Cancer Survivor’s Story" →

Hepatitis B Diagnosis & Monitoring, Hepatitis B Treatment, Liver Cancer, Living with Hepatitis B

Know Your Rights: If You Suffer Severe Liver Damage from Hepatitis B, You May Qualify for SSDI or SSI

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

The majority of people infected with hepatitis B lead healthy and normal lives. However, a small number of people may develop liver disease that will dramatically affect their quality of life and their ability to work on a short-term or long-term basis.

They may not be able to work for several weeks because of side effects from pegylated interferon treatment, or progressive liver damage could make it impossible to work and support themselves and their families even after treatment.

Below is information that can help you, your family members, or someone you advocate for apply for disability benefits to help them during when they can’t work due to hepatitis B-related health problems. The first step is to find out if you can meet the Social Security Administration’s (SSA’s) medical eligibility requirements to receive disability support. Continue reading "Know Your Rights: If You Suffer Severe Liver Damage from Hepatitis B, You May Qualify for SSDI or SSI" →

Hepatitis B Advocacy, Hepatitis B Treatment, Living with Hepatitis B

Help Stop Insurers from Over-Charging Patients for Hepatitis B Drugs on the Healthcare Marketplace

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Image courtesy of Taoty at FreeDigitalPhotos.net
Image courtesy of Taoty at FreeDigitalPhotos.net

By Christine Kukka

Blog reviewed and deemed accurate Jan. 2023.

For years, people with pre-existing conditions like chronic hepatitis B struggled to get health insurance. News stories and Michael Moore’s documentary Sicko highlighted insurance companies’ refusal to cover pre-existing conditions and their practice of inflating premium prices if consumers had chronic health problems.

Outraged by industry efforts to cover only low-cost, “healthy” consumers, lawmakers banned discrimination  against pre-existing conditions in the Affordable Care Act (ACA – Obamacare). The ACA’s Healthcare Marketplace website promises, “Your insurance company can’t turn you down or charge you more because of your pre-existing health or medical condition like asthma, back pain, diabetes, or cancer.”

While health plans sold on the marketplace can’t openly refuse to insure people with pre-existing conditions, some have devised an insidious way to discourage people with hepatitis B from buying their policies. They have dramatically increased the copays consumers pay out-of-pocket for the two leading hepatitis B antiviral drugs (Viread and generic entecavir) to deliberately make their health plans unaffordable for people with chronic hepatitis B. Continue reading "Help Stop Insurers from Over-Charging Patients for Hepatitis B Drugs on the Healthcare Marketplace" →

Baruch S. Blumberg Institute