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Living with Hepatitis B

Changing Jobs? How to Find the Best Employer Health Plan When You Have Hepatitis B

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Image courtesy of stockimages at FreeDigitalPhotos.net

By Christine Kukka

You’ve just landed a new job with a better paycheck, but how do you make sure your new health plan covers the tests, doctor visits and medications needed for your or a family member’s hepatitis B?

Many people with chronic medical conditions find switching health plans can affect the quality of their medical care and requires a careful calculation of what their out-of-pocket healthcare costs may be in the year ahead.  There’s a lot to consider and doing your homework is essential to finding the best employer insurance plan for your health and your wallet. Two key questions to ask are:

Can I keep the same family doctor and/or liver specialist?  You don’t want to lose the expertise and personal rapport you may have developed with a provider. And, hepatitis B specialists are few and far between in many regions. Find out what doctors and specialists the new plan covers. Some plans offer several options, so find out which one covers your doctor. If the new plan doesn’t include your liver specialist, are you willing to pay extra to stay with him or her? For more information about health insurance terms and shopping for a plan, click here.

How do you make sure the new plan covers your drugs and lab tests? And how do you find this out without disclosing your hepatitis B? First, you cannot be denied coverage — or a job — because of your hepatitis B. The Affordable Care Act prohibits employers from denying anyone coverage because of a pre-existing health condition. However, you need to do your homework and look carefully at the deductibles, copays and coinsurance a plan offers.

When you are offered the job, or when you go for your benefits interview with the HR rep after accepting the job, ask for a copy of their health insurance plan and read it over carefully. It may be available online.  Ideally, you want coverage that covers the most and costs the least after you add up your monthly premiums (the amount you pay each month toward insurance coverage) and the copays (the portion you pay for drugs, lab tests, and doctor visits.)

If you or your family’s medical costs are high, you may find that selecting a plan with a high monthly premium may be the most affordable because your copays for tests and medications will be low.

To find out what costs you can expect (knowing you can’t predict every future medical event), try this exercise. Find out how much you paid during the past year for both premiums and out-of-pocket copays for drugs, lab tests, and doctor visits.

Now look at your new plan’s options. Assuming you have the same prescriptions, lab tests and doctor visits, how much would you pay under the new plan? If you have a choice of plans, apply the same test to each. Which plan is the least expensive when both copays and premiums are added up?

Look at a plan’s prescription pricing carefully. While health plans can’t openly refuse to insure people with costly, pre-existing conditions, some inflate the amount you pay for the two leading hepatitis B antiviral drugs (Viread and generic entecavir) to deliberately discourage people with chronic hepatitis B from choosing their health plans.

Every insurance plan has a drug formula overview in its description, which you have access to. It assigns a price “tier” to each drug. A low-cost generic antibiotic may be a Tier 1 and cost you only a $5 copay while a new, brand-name drug is assigned a pricier Tier 4 or 5 ranking and could be extremely expensive.

Look up any medications you are currently taking, or may take in the near future. For example, if your doctor has warned you that an antiviral may be in your future if your liver enzyme tests continue to rise, you will want to review your plan’s pricing for entecavir or tenofovir. If the health plan charges a high monthly copay for a generic antiviral such as entecavir, you may be able to file a complaint. Email the Hepatitis B Foundation at info@hepb.org for more information.

Reviewing health insurance coverage details isn’t easy, but it’s important to make sure your new health plan will be the best for you and your family.

What do you do if there is a one- or two-month lag before your new coverage begins? When you leave a job, you may be able to keep your old job’s health insurance coverage for several months. This is called COBRA continuation coverage. Under COBRA, you usually have to pay the entire monthly premium yourself, plus a small administrative fee. This may be costly, but if it provides good coverage and if you’re due for your annual physical, lab tests and ultrasound, or if you need to continue antivirals, it may be a good option.

Another option is the Health Insurance Marketplace . Also known as “Obamacare,” this helps uninsured people find and apply for quality, affordable health coverage, and low and middle-income people may qualify for lower costs based on their household size and income. Losing your health insurance because you’re changing jobs may qualify as a “life changing event” that allows you to apply. For more information on marketplace health plans and hepatitis B, please click here.

Another option is short-term or temporary health insurance coverage. For more information click here.

Hepatitis B Advocacy, Living with Hepatitis B

Celebrate Democracy and Inclusion on July 4, Because Building Walls Never Stops Disease

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Image courtesy of porbital, at FreeDigitalPhotos.net.

By Christine Kukka

As the United States celebrates its inclusive, democratic heritage this July 4, the world appears to be pulling apart, disregarding the health and welfare of tens of thousands of refugees.

Civil unrest, extremism and poverty are causing thousands to flee the Middle East, Africa and other regions daily. Faced with this humanitarian crisis, some countries and politicians are advocating building walls instead of bridges.

Britain has just voted to leave the European Union. Proponents of “Brexit” used fear-mongering and blaming outsiders and newcomers for slow economic growth to lure voters to sever their close ties with Europe.

Building walls and ignoring the plight of refugees has terrible human and political consequences. For example, civil unrest helps speed the spread of diseases like hepatitis B around the world. According to estimates,  every year up to 16 million hepatitis B infections (along with 160,000 HIV and 4.7 million hepatitis C infections) result from unsafe injections, many of which are administered in refugee settlements and war zones. In addition to unsafe injections, children don’t get vaccinated against hepatitis B, contributing to the spread of liver disease.

“Developing world conflict and mal-distribution of resources remain major contributors to the prevalence of blood-borne viral infection and affect the poor, the young, and the victims of rape in war,” Australian researchers wrote in an article on the impact of war and civil unrest on public health in the journal of Emerging Infectious Diseases.

According to the United Nations High Commission on Refugees, an unprecedented 65.3 million people around the world have been forced from their homes, with 34,000 displaced daily. Among them are nearly 21.3 million refugees — half of whom are children. About 54 percent of today’s refugees come from Syria, Somalia and Afghanistan. All risk infection as they are trafficked or smuggled or transition through refugee camps. We at the foundation have received several emails from desperate refugees diagnosed with hepatitis B in refugee camps with no access to medical care.

When my grandparents came to the U.S. in the early 1900s, it was during a period when there were no walls or fear. Like today’s refugees, they left poverty behind and traveled to a land that promised equal opportunity for all. America was a shining beacon of acceptance and inclusiveness.

As a country, we lose our integrity and our right to say we are among the best in the world if we build walls and forget that we are a country of immigrants. Do you want to promote democracy around the world? Listen to the suffering of others, recognize it, and do your best to bolster the health and welfare of all people of the world. Blind nationalism only make us more isolated. No one wins and many more will die from infections that we can easily prevent.

Hepatitis B Prevention, Living with Hepatitis B

Celebrate Fathers Day By Protecting Your Health and Your Families’ — Get Tested for Hepatitis B

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Courtesy of the US CDC

By Christine Kukka

After our daughter was diagnosed with chronic hepatitis B 20 years ago, my doctor immediately had me tested for hepatitis B before I could leave her office. She explained that every household member, including my husband, had to be tested for the liver infection that’s transmitted by direct contact with blood and body fluids. ASAP.

The good news was my daughter, who was adopted, appeared healthy and showed no signs of liver damage. The bad news was my husband and I were shaken to the core by her diagnosis. Weighed down by worry and ignorance, I feared we might all be infected and were facing a death sentence.

I drove out to my husband’s work and we went for a walk. I explained what the doctor had said and explained he had to get tested. It was one of those moments when fear and denial play out over the course of a conversation. Like everyone, he was afraid to get tested. He felt fine, at first he didn’t want to know whether he was infected. For a few moments, he thought ignorance might be less painful than finding out he had hepatitis B.And, as in most families, this disclosure wasn’t easy. He had children from his first marriage who were with us every weekend and they had to be tested too. He would have to share this information with his former wife. This disclosure was going to upend two households. After a few minutes of waffling and processing, he did what courageous fathers do. He got tested and made sure his children were tested too.

The news was all good. His children had been immunized and were fine, he was not infected and was immediately immunized. Today, we are all doing fine, including our daughter.

Every father’s day, I think about that moment, when my husband refused to  retreat into denial, when he put his family’s health ahead of his initial impulse to hide from a frightening and messy situation. It is what being a good father is all about, and it takes courage.

A growing number of studies show fathers are critical to the emotional well-being of their children. When they are affectionate, supportive, and involved, they bolster a child’s emotional development, as well as academic achievement.

A child’s relationship with his/her father affects all of their future relationships and helps define what the child considers to be acceptable and loving. When involved with their children, fathers make a difference. No matter if he is married, single, divorced, widowed, gay, straight, adoptive, step-father, a stay-at-home dad, or the primary family provider,  one of the most profound things he can do is protect the health of his family—and himself–by getting tested for hepatitis B.

There are many men who are at risk of hepatitis B because of where they or their parents or grandparents emigrated from, or if they served in the military, dabbled in drugs, or had multiple sex partners. That was in the past, and this is today, a time to protect your health and your family by getting tested for hepatitis B.

The CDC offers short video clips that feature a conversation between a daughter and her parents, with the daughter explaining why Asian-Americans should be tested for hepatitis B in English, Cantonese, Mandarin, Vietnamese and Korean. A high percentage of Asian and African immigrants have hepatitis B, but most don’t know they are infected. To view these clips, visit: http://www.cdc.gov/knowhepatitisb/materials.htm

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 Diagnosis & Monitoring, Living with Hepatitis B

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

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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 sexual 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 razors, 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 sometimes the birth dose of the hep B vaccine,  and more often HBIG, is not always available around the world. The birth dose must be followed with the remaining doses of the vaccine, often given as part of a combination vaccine according to schedule. Here are the U.S. and International hep B vaccine schedules. 

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 get rid of 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 there are usually 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. (Tests like ALT/AST, platelets and bilirubin.)

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 need to take precautions during this time to make sure you do not spread the infection to others. Practice safe sex (use a condom), and don’t share personal hygiene items that may have trace amounts of blood on them.

We also  suggest that family members, close household contacts and sexual partners get tested for hepatitis B and vaccinated if needed. Have them get the triple hepatitis B panel: HBsAg, HBcAb total and HBsAb. This will tell them if they have a current infection, if they recovered from a past infection, or if they are vulnerable and need to be vaccinated. This helpful chart will help with understanding blood tests.  There can be up to a nine-week period right after infection when they may not test positive for HBsAg even if they have been infected.  Repeat testing if unsure.

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

How Was I Infected with Hepatitis B? Making the Journey from Anger to Acceptance

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

By Christine Kukka

“How did I get infected? Who could have infected me?” These questions are common when we are first diagnosed with hepatitis B.

Dumbfounded by the news, we struggle to understand when this infection could have occurred and who could have infected us with a virus that now threatens our health and well-being.

This diagnosis not only affects our health, it can weaken the trust we’ve placed in family members, friends and lovers. It threatens to dismantle basic beliefs we’ve held about fairness and honesty, and the assumption that if we treated people well that we would be treated fairly in return. Infections know no moral codes and ignore all the unspoken deals we have made with the universe. Continue reading "How Was I Infected with Hepatitis B? Making the Journey from Anger to Acceptance" →

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