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The Terrible Price Paid When Doctors Fail to Test and Treat Patients for Hepatitis B

Image courtesy of Janpen04081986 at FreeDigitalPhotos.net.
Image courtesy of Janpen04081986 at FreeDigitalPhotos.net.

By Christine Kukka

The day we arrived home from China, my husband and I brought our four-month-old adopted daughter to a pediatrician for a check-up. The doctor looked at my daughter’s health records from China, saw she had tested negative for hepatitis B, and said, “Good, I don’t have to test her for that.”

About a year later, I got sick, very sick. I felt nauseous, my stomach hurt and I felt bone tired. I gradually recovered and chalked it up to a bad case of flu.

When my daughter was 2 years old, I read on an adoption email list that some children were testing positive for hepatitis B stateside, though their medical reports in China had given them a clean bill of health. During her next check-up, I asked the pediatrician to test her for hepatitis B. The test result came back positive. A week later, so did mine.

My daughter had chronic hepatitis B, and I, who had donated blood regularly until I became a busy parent, had  an acute case, and cleared the infection. Our story, unfortunately, is not uncommon. Across the U.S., many primary care doctors fail to test at-risk patients for hepatitis B.

I live in a rural, New England state where there are not many people from countries with high rates of hepatitis B. Our pediatrician didn’t know that it can take several weeks after exposure  for an infection to show up in a lab test. She didn’t know that China’s medical records weren’t reliable. She knows it now, but many providers still don’t.

Over the years, I have heard many similar stories with worse outcomes. In one case, a young woman born in South Korea suffered epilepsy and her doctor treated her with a common seizure medication without first screening her for liver infection or damage. She died in her early 20s from liver cancer. The epilepsy drug accelerated her hepatitis B-related liver disease.

A recent article published on the Monthly Prescribing Reference website, describes how a primary care provider was sued for malpractice after he failed to monitor a patient for liver damage despite the fact the Asian-American patient told him he had hepatitis B in his teens. The patient, who was treated by the doctor for more than 15 years, died from liver cancer resulting from untreated hepatitis B.

In addition to these stories, there are numerous studies published in medical journals that show doctors often fail to test patients for hepatitis B or treat them appropriately when hepatitis B is diagnosed. Even liver experts who should know better often don’t follow medical guidelines that recommend antiviral treatment for hepatitis B-related liver damage.

I often wonder why there is this breakdown in hepatitis B care. I wonder if it stems from racism or prejudice. Many people with hepatitis B are people of color, recent immigrants, gay, or low-income. These patients can be challenging for doctors, especially when providers have little experience with hepatitis B, but that’s no excuse.

Over the years, I have accompanied my daughter to her medical appointments and often remind doctors what labs they should order and what the latest monitoring guidelines are. The best of them admit they don’t know how to treat hepatitis B and sit down and read the latest guidelines and discuss a care plan with my daughter. The worse simply do whatever I ask, and I am no doctor.

martin luther king blue I have found one of the best tools available  are software programs that link a patient’s electronic medical record to current medical guidelines. It makes it easy for doctors to know what tests should be ordered, especially if they have never treated hepatitis B before. But they need to have the software and the desire to use it.

I appreciate that doctors are human, over-worked and are driven by an assembly line business model that makes it hard to pause and research a new medical condition. However, the human price paid for lapses in care is terrible, and far more costly considering the expense of treating liver cancer, compared to running the right tests and prescribing the correct antiviral treatment today.

In the U.S., about two-thirds of people living with chronic hepatitis B don’t know they’re infected. They don’t have the money, the insurance coverage, or access to the right doctors who will test and treat them, and make sure their family members are tested and vaccinated. An estimated 20 percent of these people will die prematurely from liver disease. And today, as I listen to the news, I am afraid it’s only going to get worse.

HBV Employee Screening By Suppliers of Your Favorite Apple Gadgets -Tip of the Iceberg, But Commendable

Apple recently revealed a list of its suppliers of the iphone, ipad and other gadgets, and the labor, health and health and environmental violations against some of the offenders. Most of these violations were out of Taiwan and China.  Included in the list of violations was the screening of employees for hepatitis B. What will this disclosure mean to those living with hepatitis B in China and around the world?  Apple has responded to each of the violations that were uncovered and says it will end relationships with repeat offenders. Will this stop discrimination against those living with HBV? Probably not, but it may stir-the-pot, encouraging other corporations to do the same.  Apple has star power, and the ability to make waves due to their success and reputation.  However, it is likely that foreign suppliers will circumvent the system and continue screening its employees or prospective employees for hepatitis B.

The question is how a job making gadgets, or components for gadgets, for Apple or any other company could possibly pose a reasonable risk of HBV exposure to any factory employee?  Hepatitis B is not transmitted casually. It is not transmitted by sneezing, coughing, shaking hands, sharing a meal, or working side-by-side with someone on the factory floor or sharing an office with someone who has hepatitis B.  HBV is transmitted through  blood and infected body fluids through blood to blood contact, unprotected sex, unsterilized needles and from an HBV infected mother to her newborn during delivery.

Every day the Hepatitis B Foundation responds to inquiries from people around the globe. Due to the stigma associated with HBV, chronic carriers may be denied employment due only to their HBsAg positive status.  There are special circumstances where exposure prone procedures may put others at risk due to an HBV infection. This would be limited to health care positions that involve invasive procedures such as gynecologic, cardio-thoracic or surgical procedures that might put a patient at risk. These risk-prone occupations do not include – other health care positions, jobs in the food industry, the retail industry, being in an office, in a factory, on cruise line, or any number of ordinary jobs. A positive HBsAg test should not prohibit employment, or entering and working in another country.

There will always be discrimination in our world. Even with laws that protect employees in the U.S. there are ways to circumvent the system and quietly discriminate. In many countries where HBV is prevalent, discrimination is blatant.  And of course HBV screening is merely the tip of the iceberg with the violations and deplorable working conditions in countries like China. Eyes wide-open can be a little disconcerting for those of us with our favorite gadgets. Apple’s disclosure of these violations is commendable and a start in the right direction.  Hopefully other companies will step-up and follow their lead.

Thoughts on Disclosure for Children with Hepatitis B

If you are a family with a child with HBV, or a family considering the adoption of a child with HBV as a special need, it is important to consider how you will manage your child’s hepatitis B information. As an adult you are making your own personal disclosure decision, but when you are dealing with your child’s personal information, it is a decision that needs to be made with the entire family to be considered. Think long and hard. Once this information is out, you cannot take back.

Something that I did not truly consider when we were making this decision was the fact that this was not really my information, but rather my child’s information. Our child was a baby at the time. We could not know her personality, and what kind of a person she would become with time. We were fully immersed in the baby scene, and were not even thinking about the teenage years. Little did I know that teens have an opinion about everything. My kids lost interest in discussing their adoption story at the store check-out by the time they entered elementary school. Certainly no one wanted to be the adopted kid with hepatitis B. No one wanted to be the adopted sister of the adopted kid with HBV. I cannot speak for other kids, but that was the case with our own children. In general, kids want to blend.

Initially we were concerned about sending the wrong message to our children by not disclosing this information. There should be nothing to hide, so we forged ahead with our information in a couple of small, selective circles. These were carefully chosen groups, nothing permanent like our neighborhood, since we could not afford to move if there were repercussions. Disclosure was abruptly halted after a confrontation with the early intervention team at our home school. Had we not been under the advisement of counsel, I fear the situation would have resulted in a breach of information we might not have been able to contain. I have heard similar stories from other adoptive parents, and it makes me cringe every time.

Parents are fiercely protective of their children – especially when they are young. I have heard heart-wrenching stories of broken friendships, neighbors that no longer speak, and the distancing of family members, all over the disclosure of information that perhaps should not have been imparted. But who knows who will be accepting and tolerant, and who will refuse to let your child play next door? Sadly, people lack basic information about HBV, and even in the U.S., there is a stigma associated with infectious diseases. They do not know anything about HBV, or how it is transmitted. They may not even be aware that their child is vaccinated against hepatitis B. They may choose to err on the side of caution, and choose not to have your child play with their child.

Although we made a family decision to not disclose, there were people that we chose to tell. Disclosing to family did not go the way I had expected, and I’m glad there are a few states between us. Fortunately with time and distance, people forgot about it, because they never fully understood it from the beginning. Disclosure to selective friends worked for us, but there were few that were told. We disclose to all treating physicians.

On the pro-disclosure side, I am aware of families that have disclosed their child’s HBV information and it works well for them. They are pleased with the support they receive from friends, school, church and family. They have made the decision to educate and raise awareness as a family. I commend that. Perhaps I am even a little envious, because that is how it should work! Unfortunately it did not work well for our family, where we live. Now that my daughter is in high school, she is okay with her HBV status. Fortunately she’s not truly “out there” with her information, but she has contributed in her own way to raising HBV awareness in selective circles.

To disclose or not to disclose, it’s a family decision. Think about it, and do what is best for your entire family.

Hepatitis B Carriers Need Not Apply: Discrimination in China

Please take look at this video on HBV discrimination in China.  This isn’t a new story for China, rather an ongoing problem. Despite the high numbers of HBV infected persons living in China, discrimination is rampant.  One in ten Chinese carry the hepatitis B virus. The range of HBV discrimination in China is vast.  Life changing opportunities are lost due to rejection: rejection from school, lost employment opportunities, and even lost love, all due to HBV carrier status.  Even simple, every-day routines like meals with friends and family are impacted. Many of those infected are expected to eat separately, or carry their own bowl and chopsticks.  This is due to widespread ignorance on how HBV is transmitted.

An HBF friend told me Lei Chuang, the student in the video who was rejected from a top post-graduate University program due to his HBV status, is a very popular.  Evidently he is a very visible and admired anti-HBV discrimination activist in China.  Lei Chuang suspended his post-graduate studies in order to campaign against HBV discrimination. One of his on-going projects is an invitation to dine with the Chinese Premier. Every day he sends one letter to the Premier – 151 letters and counting. That takes a lot of courage.

Lu Jun is the director of the Beijing Yirenping Center.  He has been actively fighting discrimination in China, along with providing education, outreach and patient counseling.  His organization works tirelessly to defend the rights of those living with HBV by providing legal support for anti-discrimination lawsuits. He was also pivotal in creating the Chinese HBV internet forum, www.hbvhbv.com, creating a critical link between nearly half a million Chinese subscribers. (Keep in my that social media outlets such as facebook, twitter and Youtube are blocked in China.) Lu Jun is also a friend of the Hepatitis B Foundation, and joined us for our patient conference in June of 2008.

Having witnessed HBV discrimination in China, first-hand, I can tell you that I admire these men, and all others willing to take a stand and actively fight discrimination in their country. Not everyone is able to find their voice in this fight, so the sacrifice of these individuals is to be commended. However, whether outwardly speaking out or quietly behind the scenes, it is imparative that we all do our part to help raise HBV awareness.

A Personal Reflection on China for World Hepatitis Day – Part II

(If you missed it, see part I) The second trip entailed the training of rural doctors.  During the training course, we used a number of simple visuals to better get some basic ideas across.  We wanted to drive home how common HBV was in China, and the number of Chinese people infected. We asked 10 people to stand up.  They smiled with pride, having been selected, until they realized they were being identified as one of those possibly infected with HBV.  The numbers dwindled as we went through the process of asking some to sit down representing those that had been infected, but resolved the virus, until finally, the last one standing represented someone with chronic HBV. This person was clearly horrified. This visual certainly drove the point home, but perhaps we were the ones educated by this process.

The Chinese people love children. I had a photo album of my children, which many enjoyed during the break.  There was one photo with a picture of both my two children and my colleague’s two children. My colleague and I were traveling with two of the children and had not identified if either were infected.  (As a result, we sat at every meal where most assuredly there was a large serving spoon in every dish…)  There was only one child that could be “safely” identified. When I pointed the child out to them, I could hear them, speaking in English, saying “Yes, I knew it.  Look at her.  She’s sick… doesn’t look well.”  I can’t even imagine what was said in Chinese.  HBV is nearly always asymptomatic in children.  All four children in the photo appeared equally healthy.  At that moment, I was grateful these children were spared the taunts.

During the course of the visit, we made an impromptu stop at a hospital on the outskirts of one of the cities.  We were shocked when we were permitted to enter the compound without pre-approval.  It was not a sanitized visit like all of the other stops we made.  We were traveling with a U.S. doctor, and I think the Chinese doctor we met was interested in speaking with her.  The facility was well below the standards we had encountered elsewhere. The largest building on the compound was the “women’s facility”.  We were not allowed in the building, nor were any pictures permitted of that particular building.

In another city we met with a conventionally trained doctor who had grown up in a very rural province, and was sometimes requested due to her rural background and familiarity.  She told us of a recent rural visit, where hundreds of women had been infected with an STD.  As a result of migration of workers into the cities, these women villagers are more often victims of diseases previously not seen in these areas.  Sadly, many of the women were being infected due to the lack of precautions taken during the annual examination of women.  The major culprit was the reuse of speculums that were not disinfected.

Finally, we met so many interesting, young Chinese, and heard so many wonderful stories like the one about a young university graduate who started the first online community of hbvers (that’s what they like to call themselves.)  It would turn out to be the biggest in the world, and would provide much needed support for many isolated Chinese, living with HBV.  There were also other stories, too, of how Chinese hbvers fought against discrimination by using a stand-in – either a paid “professional”, or other, loyal friends for their compulsory medical blood tests.  Imagine living with the fear of losing everything just because of the results of a simple blood test.

I went to China, naively thinking I would make a difference.  I was overwhelmed with the dire situation of those living with HBV.  The experiences and stories were sobering and haunted me for months after returning.  It was so personal. I certainly cannot  fix this global problem on my own, but I will do everything possible, so that others may understand, just a little, the impact of living with hepatitis B in China.

A Personal Reflection on China for World Hepatitis Day – Part I

Sadly, like many Americans, until I came face-to-face with hepatitis B, I had no idea of the global implications.  Over the years, raising HBV awareness has been a quiet mission.  In 2002 and 2003 I was fortunate to travel to China, and help present train-the-trainer programs that were to be used in Chinese orphanages, presented to Chinese foster families, and used as training sessions for rural doctors.  The training programs were successful, and well received, but of course they were only a small contribution in a country where HBV infection is endemic.  In fact one in ten Chinese are chronically infected with hepatitis B.  Nearly one half-million die per year from HBV related liver cancer, or one Chinese person every 60 seconds.  As an American, I was aware of the discrimination faced by those living with HBV in the U. S., but I had no idea how widespread discrimination was throughout China.  For some naïve reason, I thought HBV infection would be better accepted in a country where so many are living with HBV.  I was very wrong.

Training participants listened with earnest as we reviewed infection control techniques and modes of transmission.  All were interested in the details.  Perhaps what was more sobering were the interactions in between and following these training sessions.   I found myself quietly met by a number of tentative women with downcast eyes.  They waited in the bathrooms, and stepped out of tiny alley-ways as we walked back to our hotel. They quickly surveyed the area, their eyes darting back and forth, before they asked their questions about HBV treatment, and outcomes.  The despair was was palpable.

We were invited to visit a local city orphanage.  The rooms were somewhat sterile, but cheerful and the care takers were very good with the children.  However, when we met with the staff, we learned of their concern of HBV infection among the children under their care.  They were concerned about transmission. However, they continued to treat infant illnesses with injections and IV drugs, rather than an alternate, oral medication. An orphanage is often a world unto it’s own, yet children with HBV are often segregated from the other children.   Children diagnosed with HBV outside of the orphanage environment may also be refused entry into school, although this practice may vary with the province, the city, or even the official in charge.  That doesn’t leave a child identified with HBV much of a future.

Perhaps one of the most sobering experiences was meeting with HBV-listserve members at a local tea house.  We were seated upstairs, away from other guests, which is not uncommon when foreigners are present, but it was clear this was more for their privacy.  They scanned the room and were careful not to speak when the server entered the room.  This was the first time they had met in person, and it was clear their hearts were heavy with the burden of living with HBV.  Throughout the evening, no names were used, and all members referred to one another by their screen names.  Most felt very isolated with their illness and were desperate for information.  Many were shunned by family and friends, were humiliated and forced to eat separately, or carry their own bowl and chopsticks. They lived alone with the knowledge of their infection, as widespread discrimination loses jobs and ruins families. There were a number of treatment questions.  Many were interested to know how long they needed to take the antiviral drugs, and whether or not they could stop for a while – if they were feeling better.  We told them that stopping and  re-starting treatment was not good, and they should speak with their doctor.  We didn’t realize that few were under the care of a doctor for their HBV.

Later, while traveling in Shanghai, we visited a lavish pharmacy.  All oral, prescription medications were available in China without being prescribed by a doctor.  Only injectable drugs required a physician’s prescription.  As a result, it was likely my listserve friends were self-medicating without the advice of a liver specialist.  The drugs were likely cost prohibitive, so the need to start and stop antiviral treatment was more a function of expense.  It was apparent that most were not being treated and monitored by a specialist.  The prospect was sad, all the way around.

Please join us as Thursday’s blog concludes “A Personal Reflection on China for World Hepatitis Day….

A Brave Hepatitis B Activist in China

I have been active in the HBV community for over twelve years, and during this time and I have been fortunate to make the acquaintance of some wonderful people, many who I consider good friends.  The story below was relayed to me by a friend, though it’s possible you may have seen it in the Chinese news.

This is a story about a very brave, Chinese girl with hepatitis B.  She studied in Japan, got her Masters, and married a PhD from China. Last year, she took all her savings, about 10,000 Yuan, with the blessing of her husband who was finishing his thesis in Japan, and went back to China. For the next twelve months, she traveled to major cities in China, all by herself.

At each stop, she held up a placard with a sign inviting passersby to have dinner with her, a person with hepatitis B, and that she would pay for the dinners – You eat, I pay. Of course, she repeated her story to the media to emphasize that it is safe to eat with a person that has HBV. A few nights ago, she appeared on CCTV, with another young hero, and they demonstrated how shaking hands with a person with HBV will not pass on the virus.  There was instant testing of the cloths wiping the hands of the infected women. Of course, they tested their saliva too, since Chinese people use chopsticks, and pick food from common plates. All this was presented in front of a live audience, and millions of viewers at home. It brought tears to my eyes.

The original graduate from Japan has stopped touring and is now making a documentary. Her husband left Japan on a boat to return to China, the day before the earthquake struck.  He is now home with his wife.

However the baton is taken up by another young Chinese lady, with the support of the other activist, and the tour is on again.

The actions taken by these young, Chinese activists are inspiring, and are true acts of bravery – especially in a country like China, where HBV discrimination is rampant.  Perhaps we are not all comfortable going public with our information, but we can all work behind the scenes, and help raise global, HBV awareness.  Tell us your story, or share it on the World Hepatitis Alliance Wall of Stories.