Hep B Blog

Tag Archives: HBV discrimination

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

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"

It’s Hepatitis Awareness Month: Five Reasons We Don’t Get Tested, and How to Overcome Them

Members of Drexel University's Asian Pacific American Medical Student Association participate in a hepatitis B screening program at a Chinese Christian church in Philadelphia.
Members of Drexel University’s Asian Pacific American Medical Student Association participate in a hepatitis B screening program at a Chinese Christian church in Philadelphia.

May is Hepatitis Awareness month. Why do we need an annual reminder about hepatitis B? Because 65 percent of the estimated 2.2 million people in the U.S. living with hepatitis B don’t know they’re infected.

Studies show when people know their hepatitis B status, they’re more likely to get monitored regularly, get treatment, and take steps to avoid passing on the disease to partners and their children.

So why are so many Americans unaware of their hepatitis B infection? Here are five roadblocks that stop us from getting tested for hepatitis B, and what how we can do to overcome them.

We feel fine, so we assume we’re not infected. Hepatitis B rarely causes symptoms. There are very few sensory nerves around the liver, so when a viral hepatitis infection strikes, we rarely feel its effects. As a result, most of us – especially if we were infected as children or newborns – never experience any symptoms for decades. So remember, “feeling OK” is no excuse to avoid testing. Continue reading "It’s Hepatitis Awareness Month: Five Reasons We Don’t Get Tested, and How to Overcome Them"

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

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

By Christine Kukka

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"

The Ugly Intersection of Prejudice, Immigration, and Hepatitis B

By Christine Kukka

 Image courtesy of xedos4 at FreeDigitalPhotos.net.
Image courtesy of xedos4 at FreeDigitalPhotos.net.

A few weeks ago, an ill-informed New England governor proclaimed illegal immigrants were bringing in infectious diseases, including hepatitis, HIV, and tuberculosis. Recently, similar anti-immigration, fear-mongering from presidential candidates has filled the airways.

For hundreds of years, disease has been used as reasons to stop immigration to the United States. During the early 1800s, officials claimed the Irish brought cholera into the country. The Italians were believed to carry polio and tuberculosis was called the Jewish disease. In 1900, the Asian-American community in San Francisco was believed to be infected with bubonic plague that posed a threat to public health. Residents were subjected to mandatory injections with an experimental drug until a court order halted the local public health campaign.

Throughout the 19th and 20th century, “politics was saturated with attacks on immigrants as diseased intruders to the body politic,” wrote American University history professor Alan M. Kraut in Foreign Bodies: The Perennial Negotiation over Health and Culture in a Nation of Immigrants. This dialogue led to revision of the 1882 Immigration Act to exclude, “persons suffering from a loathsome or a dangerous contagious disease” from entry into the United States. Continue reading "The Ugly Intersection of Prejudice, Immigration, and Hepatitis B"

First World Hepatitis Summit Focuses on Global Plan for Elimination by 2030

The joint North and South Americas group build relationships across borders to eradicate hepatitis B.
The North and South Americas group builds relationships to eradicate viral hepatitis.

The mood was euphoric. It was a love fest, actually. Last week, more than 600 policy makers, public health experts, and representatives from non-governmental organizations and patient advocacy groups from 80 countries were invited to participate in the first World Hepatitis Summit in Scotland hosted by the World Hepatitis Alliance in partnership with the World Health Organization (WHO). The Hepatitis B Foundation was pleased to be invited and to speak during the pre-summit meeting as well.

The message was serious. Hepatitis B and C kill more people each year than HIV/AIDS and tuberculosis, and combined are the seventh-leading cause of death worldwide, yet viral hepatitis as a global health concern remains mostly invisible and under-funded. Continue reading "First World Hepatitis Summit Focuses on Global Plan for Elimination by 2030"

“How Did You Get Hepatitis B?” Why We Should Answer

Image courtesy of Serge Bertasius Photography at FreeDigitalPhotos.net
Image courtesy of Serge Bertasius Photography at FreeDigitalPhotos.net

By Christine Kukka

Telling someone you have hepatitis B is almost always followed by the question, “how did you get it?”

The question can feel like an invasion of privacy or an indictment. Behind the question lurks a desire for reassurance that hepatitis B won’t happen to them, but of course it can. And that’s why we should answer and tell our story.

On a global scale, the story of hepatitis B is the story of humanity. How we and our forebears became infected results from centuries of human migrations, the transatlantic slave trade, political upheaval, poverty, re-used medical devices and ineffective public health policies. Continue reading "“How Did You Get Hepatitis B?” Why We Should Answer"

The Hepatitis B Patient Community Loses Its “Mom”

Hep B List "parents" Sheree Martin and Steve Bingham at a 2005 patient conference.
Hep B List “parents” Sheree Martin and Steve Bingham at a 2005 patient conference.

The hepatitis B community recently lost its much-loved advocate, resource and “mom,” Sheree Martin. She was co-owner of the Hepatits B Information and Support List from 1998 to 2011 and comforter and consultant to thousands of people around the world who live with hepatitis B.

The reach of her kindness and wisdom cannot be under-estimated. In the early days of hepatitis B, when medical treatment was misguided and stigma ran rife, Sheree nurtured a safe, online community that provided reassurance and accurate medical information. For many, it was the first time they were able to share the confusion, loneliness and frustration of living with chronic hepatitis B with people just like them. Continue reading "The Hepatitis B Patient Community Loses Its “Mom”"

Preparing for College, Dating and Disclosing Hepatitis B

Image courtesy of jesadaphorn at FreeDigitalPhotos.net
Image courtesy of jesadaphorn at FreeDigitalPhotos.net

When my daughter, who has chronic hepatitis B, packed for her freshman year of college, I peppered her with warnings about the need for standard precautions and condoms. I suggested wording for a future conversation where she would disclose her infection and negotiate safe sex with a potential partner.

I hoped these verbal dress rehearsals would empower and protect her, especially if that potential boyfriend turned her down. I wanted her to know that any rejection would not be about her or her hepatitis B, it would be about his fears. Continue reading "Preparing for College, Dating and Disclosing Hepatitis B"

Do You Have to Tell Your Employer About Your Hepatitis B?

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

“Do I have to tell my new employer about my hepatitis B?”

After years of cautiously completing medical forms for schools, camps and college, my daughter’s question took me by surprise. It shouldn’t have. Many jobs—even when they don’t involve direct medical care—require a physical exam and confirmation of hepatitis B immunization.

There may be a safe and effective vaccine and new treatments for hepatitis B, but ignorance and stigma remain stubbornly entrenched in many HR departments. So here is what every job applicant, employee and employer should know about hepatitis B and employment.

During the application process or job interview, can an employer ask about my health? Continue reading "Do You Have to Tell Your Employer About Your Hepatitis B?"

July 4th: Celebrating Freedom from Discrimination Against Hepatitis B

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

The day my daughter started kindergarten, her teacher asked that she be transferred to another classroom. She thought my daughter posed a health threat to a classmate who was recovering from leukemia.

Our doctor had disclosed my daughter’s chronic hepatitis B infection on her school health form. I thought the school nurse would know my daughter posed no risk to students, who were nearly all immunized against hepatitis B and supervised by teachers trained in universal precautions.

I was wrong on many counts. The school nurse went along with the teacher’s recommendation. After heated discussions with the school principal that included providing copies of medical reports and civil rights laws, my daughter remained in the classroom and the school’s staff received training on universal precautions.

That happened 16 years ago. The Americans with Disabilities Act (ADA) had been enacted 10 years earlier and policy makers, health officials and the courts were still working out exactly how the landmark law would protect people with blood-borne infections such as HIV and hepatitis B and C.

Continue reading "July 4th: Celebrating Freedom from Discrimination Against Hepatitis B"