Hep B Blog

March 1 is Zero Discrimination Day: Ending Hepatitis B Stigma Starts with Us

 

2017-zero-discrimination-day_en.pdfBy Christine Kukka

Around the world, millions of people with chronic hepatitis B face wrenching discrimination that limits their dreams, education, careers, income and personal relationships. Here are examples:

  • A Vietnamese woman working in a hotel in Dubai is found to have hepatitis B and is fired, isolated, deported and given a life-time ban on re-entering the country.
  • A young person from the Philippines, aspiring to increase her income to support her impoverished family, is hired to work in Saipan, but her work visa is suddenly cancelled by the employment agency when it discovers she has hepatitis B.
  • A young man from the state of Washington, who worked hard in high school to get into the Naval Academy, is summarily dismissed within days of his arrival when it’s discovered he has hepatitis B. The U.S. military continues to bar people with hepatitis B from serving.

All of this discrimination is unethical, unnecessary and a violation of human rights. Hepatitis B is simply not transmitted through casual contact. The stigma that persists is based on ignorance and it impacts millions around the world daily. This is why we need to recognize Zero Discrimination Day on Wednesday, March 1.

Image courtesy of cooldesign at FreeDigitalPhotos.net.
Image courtesy of cooldesign at FreeDigitalPhotos.net.

This day, designated by the United Nations, highlights the negative impact of discrimination and promotes tolerance, compassion and peace. Many hepatitis activist organizations, including the Hepatitis B Foundation, is using this celebration to draw attention to global hepatitis B discrimination.

In the U.S., some progress has been made to eradicate the unequal treatment of people affected by chronic hepatitis B infection. In 2012, prompted in part by complaints filed by the foundation, CDC issued new regulations that clarified that hepatitis B should not, “disqualify infected persons from the practice or study of surgery, dentistry, medicine, or allied health fields.” These recommendations and a U.S. Department of Justice letter warned medical, nursing, dental schools that they could not exclude applicants and students with hepatitis B, concluding, “… for most chronically HBV-infected providers and students who conform to current standards for infection control, HBV infection status alone does not require any curtailing of their practices or supervised learning experiences.”

However, today people with hepatitis B can’t even get jobs as hotel maids in many countries in the Middle East and Asia. Fear and ignorance, and reluctance by government officials to outlaw these discriminatory practices, have allowed these rules that diminish basic human rights to continue. The young woman who was exiled from Dubai, wrote of her experience:

“When I was 21, I had my internship in Dubai and needed to undergo a blood test. I was not aware of the rules in that country so when I was tested positive, the hotel that I worked for isolated me. I was going through a very hard time because I was completely alone in a foreign country. My work visa was canceled, they brought me to a place that looked like a jail, they took my iris scan, and I was deported along with a lifetime ban, which means I can never come back to that country again. That was the most horrible memory in my life. I am still scared every time I think about it. Sometimes I cannot sleep at night, I keep blaming, cursing myself for having this kind of virus inside my body.”

Image courtesy of meepoohfoto at FreeDigitalPhotos.net,
Image courtesy of meepoohfoto at FreeDigitalPhotos.net,

No one is to blame for hepatitis B, including the millions who were infected at birth or from unsafe and contaminated syringes and medical devices. There is a safe and effective vaccine that prevents hepatitis B today. When people are protected, there is no reason to fear that healthcare workers or hotel maids will spread this infection.

It is morally reprehensible that given the tools and knowledge we have that this discrimination should continue today.

Every day is zero discrimination day, and ending discrimination starts with us working individually in any way we can in our communities to end this stigma.

Make the NOhep:NOexcuse pledge and take simple actions to help eliminate viral hepatitis. It only takes a minute to pledge your support! 

The United Nations first celebrated Zero Discrimination Day on March 1, 2014, after UNAIDS, a UN program on human immunodeficiency virus (HIV) and Acquired Immune Deficiency Syndrome (AIDS), launched its Zero Discrimination Campaign on World AIDS Day.

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

Photo courtesy of CDC.
Photo courtesy of CDC.

By Christine Kukka

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

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

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

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

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

Historically, labs determined only if HBsAg was present or not, which is why patients either tested positive or negative for HBsAg. Recently, countries outside the U.S. began measuring HBsAg quantities in blood samples and late last year became available in the U.S. as a federally-approved (CLIA) lab test from Quest Diagnostics.

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

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

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

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

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

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

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

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

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

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

Dr. Robert Gish
Dr. Robert Gish

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

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

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

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

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

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

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

Valentine’s Day Advice for Those Looking for Love While Living with Hepatitis B

Image courtesy of photostock at FreeDigitalPhotos.net.
Image courtesy of photostock at FreeDigitalPhotos.net.

By Christine Kukka

Valentine’s Day celebrates love and romance, but when you have hepatitis B, you may fear dating could lead to rejection and heartbreak.

Alright, so you had a few unhappy dating experiences because of hepatitis B … believe me, you’re better off without those people. If hepatitis B hadn’t ended the relationship, it would have been some other issue.

Here are two pieces of valuable advice for those looking for love while living with hepatitis B.

A leader of the Hepatitis B Information and Support email list recently offered this sage counsel to members who feared they would never date, marry or have children because of their hepatitis B.

“As the list mom and a divorced woman who has been dating for the last eight years, I have personal experience with this topic. I have to remind you, having chronic hepatitis B does NOT have to create a barrier to dating. If anything, it can help you determine who is a good partner and will possibly be there for you in the long-term.

Image courtesy of Graphics Mouse at FreeDigitalPhotos.net.
Image courtesy of Graphics Mouse at FreeDigitalPhotos.net.

“Also, and this is the biggie, there is a VACCINE for hepatitis B. If you meet someone you want to have an intimate relationship with, they can be vaccinated (some already are!)

“There is no reason to feel as if you are inferior or less deserving of love because of your hepatitis B.  We all want and need acceptance. The only barrier is what you have built in your mind.

“Personally, I have been in three long-term relationships since my divorce.  I am currently in a loving relationship with a man who cares about me deeply and has no issues with my hepatitis B.

“A word of wisdom from a friend has stuck with me. If someone loves you, they will care about YOUR heath, and make room for ways to keep you in their life.

“Don’t wall yourself off from the experiences of meeting new people and potential love and partnership with another soul.  Life is too short to be afraid of getting hurt.  You ‘will’ get hurt, and you WILL get back up to live another day and love again. The risk of rejection is worth the reward.

Disclose, before it’s too late.

When you disclose your hepatitis B status before sex – even if it’s safe sex with a condom – we don’t jeopardize our partner’s health or their trust in us. Talking about hepatitis B helps reduce the stigma surrounding this infection and may even prompt the person to get vaccinated.

So how do we tell a potential partner that we have hepatitis B? Calmly and carefully. Here is one way to initiate disclosure: “Before we become intimate, we need to talk about STIs and contraception. The reason I’m bringing this up is that I have hepatitis B. You need to know that, and we need to decide how to protect ourselves… ”

Do some research. Having a thorough understanding about hepatitis B can make it easier for you to explain it to a potential partner. The more you know, the less you fear, and the more comfortable you will be in dispelling their fears and conveying a sense of truth and integrity.

Image courtesy of radnatt at FreeDigitalPhotos.net.
Image courtesy of radnatt at FreeDigitalPhotos.net.

Here are some tips from the American Sexual Health Association for disclosing a sexually-transmitted infection.

  1.  Pick a time when both of you will be in reasonably good moods and relaxed for this conversation. Choose a place with few, if any, distractions.
  2.  Start out on a positive note (“I’m really happy with our relationship…”). This will put them in a positive mindset, and they may respond more agreeably than if you start out saying something like, “I have some really, really bad news… “
  3.  Your delivery can influence their reaction to what you say. If you talk calmly about hepatitis B, they may respond similarly. If you act like it’s the end of the world, they might agree that it is.
  4.  Allow a conversation to take place, rather than doing all of the talking yourself.

Disclosure is the right and ethical thing to do. How they respond is out of your control, but their response might just surprise you.

A Valuable Tool Against Chronic Hepatitis B Goes Unused in Many Developing Countries

Image courtesy of tuelekza at FreeDigitalPhotos.net.
Image courtesy of tuelekza at FreeDigitalPhotos.net.

By Christine Kukka

A critical tool that stops the spread of nearly half of all new chronic hepatitis B infections is still unavailable in many developing countries – the hepatitis B vaccine birth dose.

When the hepatitis B vaccine is immediately administered to a baby born to a hepatitis B-infected mother, it stops the terrible spread of hepatitis B to a new generation.

But this vaccine remains unavailable and financially out-of-reach for many parents in rural areas of Africa, Asia and other regions.

“In Ghana, even if parents know where to find the vaccine, the cost sometimes deters them from accessing it,” said Theobald Owusu-Ansah of the Hepatitis B Foundation of Ghana.   “And when midwives help mothers deliver their babies in their homes, they do not have the vaccine with them because it must be refrigerated.”

While a global childhood immunization program, sponsored by the global vaccine alliance GAVI, has saved millions of lives, the hepatitis B birth dose remains a critical, missing piece of its otherwise successful global immunization strategy.

Image courtesy of africa at FreeDigitalPhotos.net.
Image courtesy of africa at FreeDigitalPhotos.net.

To effectively prevent mother-to-child (perinatal) transmission of hepatitis B, the single-dose hepatitis B vaccine must be administered within 12 to 24* hours of birth. In about 90 percent of cases, this vaccine effectively prevents infection, unless the mother’s viral load is extremely high.**

Today, GAVI funds and promotes the pentavalent vaccine, which prevents five diseases including hepatitis B, for nearly all children in developing countries. But here’s the catch, the earliest the first dose of the pentavalent vaccine can be administered is six weeks of age because it contains the diphtheria vaccine. This is far too late to prevent perinatal hepatitis B infection.

GAVI’s pentavalent vaccine makes economic and medical sense. One vaccine that prevents several diseases lowers manufacturing and shipping costs and requires fewer injections. Indeed, widespread immunization with GAVI’s pentavalent vaccine in 73 developing countries has prevented 7 million deaths, but it doesn’t prevent chronic hepatitis B acquired at birth.

The World Health Organization (WHO) has made eradication of hepatitis B by 2030 a major goal, but it is unattainable unless perinatal infection is prevented.

Without GAVI’s financing or promotion of the hepatitis B birth dose, many developing countries have done little to promote the birth dose, despite their high rates of hepatitis B. According to the WHO, in 2015, 8.4 million babies were born in African countries that did not provide the birth dose of the hepatitis B vaccine.

In addition to a lack of political will on the part of GAVI and these countries, there are other barriers to distributing the hepatitis B birth vaccine. As Owusu-Ansah explained, about one-third of births in his native Ghana  and about 45 percent of all births in Africa take place without a healthcare worker or midwife present.

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.

Suren Surender, founder and president of the Rann Bhoomi Foundation, which educates rural villagers in India about hepatitis B prevention, added that even when healthcare workers are present at childbirths, “there is a lack of knowledge about birth dose administration and there is also a lack of community awareness about the benefits of getting the birth dose.”

Having a global leader like GAVI lend financial and strategic support for the hepatitis B birth vaccine would go far to chip away at these high perinatal infection rates in rural regions. In 2013, GAVI and the global vaccine alliance explored funding the hepatitis B birth dose as part of its Vaccine Investment Strategy (VIS),  but officials decided not to fund it.

According to a GAVI spokeswoman, the key deterrent was implementation — getting the refrigerated vaccine birth dose to rural areas within hours of a child’s birth – rather than cost.

“Many births in GAVI-supported countries do occur outside health facilities,” she noted. “Indeed, coverage of hepatitis B birth dose in many countries delivering this intervention is low. Ultimately, the Vaccine Investment Strategy analysis and consultations recommended that (GAVI) should focus its limited resources on other high-impact vaccines at the time.”

However, research suggests the hepatitis B vaccine may be effective for several days or weeks in warm climates without refrigeration, which could increase their use in rural regions if there was more financial and political support.

In 2018, GAVI will reconsider potential support for the hepatitis B birth dose when it develops a new Vaccine Investment Strategy, with a decision expected in late 2018.

GAVI’s support for the birth vaccine is needed immediately. Only GAVI has the resources and political clout to help countries realign their immunization policies to allow the next generation of children born to hepatitis B-infected parents to live without liver disease.

*North American medical guidelines recommend the first hepatitis B vaccine dose be administered within 12 hours of birth, while WHO recommends the vaccine be given within 24 hours of birth.

**The addition of a dose of HBIG (hepatitis B antibodies) along with the vaccine raises the prevention rate a few percentage points. However, the vaccine alone is highly effective.