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Importance of disclosing your hepatitis B and hepatitis D status

 

 

 

 

 

 

 

 

 

Written By: Soumen B., Silvana L., Partizan M. 

Thirteen years ago, I experienced a profound shock. My wife was in the third trimester of her pregnancy, and I was eagerly anticipating fatherhood, filled with plans for our future with the baby. As part of routine procedures, we both were asked to undergo various diagnostic tests. One day, the gynecologist unexpectedly called us in for an urgent meeting. I was asked to wait outside while my wife entered the doctor’s office. When she emerged after half an hour, I noticed a deeply worried expression in her eyes. As I greeted her, she responded with a blank stare, as if the world were crashing down around her.  

We returned home in silence, and then she broke down in tears. My wife shared with me that my blood test revealed I was infected with hepatitis B. How could this have entered my body? The doctor told my wife that the disease was terminal and that I might not survive for long. Our world began to crumble. I have always been a respectful and loyal family member with minimal alcohol consumption. How could this happen to me?  

The most challenging part was figuring out how to explain this to my wife… 

After I was diagnosed, I began online research and reached out to a nonprofit organization (Liver Foundation West Bengal). I gathered information about the disease and accessed health support. I then had an open and candid discussion with my wife, free of embellishments. I explained that I was one of millions affected worldwide and that the disease could have been transmitted through less common means, such as unsterile equipment used during a haircut, like razors, at the salon.* She was extremely cooperative and listened patiently. She also helped me confront the stigma and face the reality of the situation. My wife and I looked up more information so that we could learn about hepatitis B. We talked to our doctors to learn about how we can reduce the risk of transmission and maintain our health. My wife made sure to receive the hepatitis B vaccine, and we made certain that our baby received the vaccine immediately after childbirth.  

Later, I took her to meet members of the nonprofit, including experts and other patients, to engage in an open conversation about the disease and its implications. Both my wife and baby are now vaccinated and protected against hepatitis B infection. 

 

* Hepatitis B is highly infectious, and if tools and surfaces are not properly disinfected, it can survive for up to seven days. If you are exposed to hep B from a small wound (like the ones that happen during a short hair cut or shaving with tools that are not sterilized), even the smallest drops of blood from someone living with hepatitis B could cause an infection. Sexual transmission is a primary mode of transmission for hepatitis delta. 

 

Key Questions and Answers from this Story:  

If hepatitis B is sexually transmitted, how come my partner isn’t infected? 

Hepatitis B virus (and hepatitis delta virus) can be sexually transmitted. The virus is present in an infected person’s blood and bodily fluids commonly exchanged during sexual activity, such as semen and vaginal fluids. There are many reasons your partner might not be positive for hepatitis B after sexual activity including: 

  1. Vaccination status: If your partner has received the full schedule of the hepatitis B vaccine, they are likely protected. The vaccine prompts your body to start producing antibodies that neutralize (attack) the virus. This stops hepatitis B from infecting your body. 
  1. Viral load: The amount of hepatitis B in your blood and bodily fluids—known as the viral load—affects transmission risk. A lower viral load reduces the likelihood of transmitting the virus to your unprotected/unvaccinated partner during sexual contact. 
  1. Type of sexual activity: Different sexual practices carry varying levels of risk. Anal sex poses a higher risk due to potential tissue damage and blood contact. Oral sex is considered “less risky” since it is less likely that there will be blood contact. The presence of cuts or sores can increase one’s risk of infection. It is always a good idea to use protection (latex condoms) when engaging in any form of sexual contact. 
  1. Use of protection: Consistent and correct use of condoms significantly reduces the risk of hepatitis B transmission to your partner by preventing direct contact with infectious fluids. While condoms are crucial in reducing the risk of transmitting hepatitis B (and D) during sex, they do not eliminate the risk completely. New condoms must be used every time you and your partner have sex, from start to finish. Latex or polyurethane condoms are most effective; avoid natural skin (lambskin) condoms, as they are not as good at blocking the virus. 

  

For peace of mind and health assurance, you and your partner should consider: 

  • Testing: A blood test can determine if your partner has been exposed to hepatitis B or has developed immunity from a previous infection. If they are not protected, they should start the vaccination series. 
    • If you are living with hepatitis B, it is important to ask your doctor to test you for hepatitis D. 
  • Vaccination: If a person is not already vaccinated, receiving the hepatitis B vaccine is the only way that one can achieve full protection against the virus.  
    • There is no vaccine solely for hepatitis D, but since hepatitis D relies on hepatitis B to survive, the vaccine protects against both viruses. 
  • Discuss your status: If you are starting a new romantic or sexual relationship, you should consider telling your partner about your hepatitis B (or D) status before any sexual encounter. By sharing your status, you not only instill trust in your relationship and build confidence; you and your partner can also take the necessary steps towards reducing your risk of transmitting the virus.  

Living with Hepatitis B

How to Navigate Disclosure, Denial and Drinking with Hepatitis B During the Holidays

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

By Christine Kukka

With the holidays come  family reunions and parties that can set the stage for some big emotional challenges for people living with hepatitis B.

  • Do we disclose our hepatitis B to our families or keep quiet?
  • Do we remind relatives to get tested and/or treated, or quietly endure their denial?
  • And, can we resist the host who insists everyone should be drinking alcohol with him?

Is this the holiday when we finally tell our parents or siblings about our hepatitis B?

First, take your family’s cultural temperature towards hepatitis B. Historically, in many cultures people with hepatitis B were shunned and could not marry, attend college or advance professionally. If your family still holds some of these baseless beliefs, be prepared to do some educating as you try to dispel their fears and prejudices. Come armed with printed information, website addresses and other material to bolster your family-focused public health campaign.

If you were infected at birth, you may have family members who are also infected. The most valuable gift you may give them is your disclosure and your education, especially if it leads them to get tested, vaccinated and treated.

If you suspect you are the only one in your family who is infected because of a past medical procedures that transmitted the infection, or sexual encounters or injecting drug use, think carefully about disclosing. Are your family members open and accepting? Will they suspend judgement and be supportive? Perhaps you should tell only one or two relatives whom you can trust, or stick to your community of friends. If you have doubts, erring on the side of caution for the time being may be best.

Should you encourage family members to get tested, vaccinated or treated?

If you know hepatitis B runs in your family, then your parents, uncles, aunts and siblings could also be infected. Should you bring up hepatitis B during dinner and encourage them to be treated?

Many people find denial a far more comfortable option than facing the possibility of having hepatitis B, which is why nearly two-thirds of people with chronic hepatitis B remain undiagnosed and untreated. So how do we bring up hepatitis B without sending everyone running from the dinner table?

  • Bring up an interesting fact, “Hey, did you hear that one in 12 Asian-Americans have hepatitis B and two in three don’t know it?”
  • Or ask about a relative’s health history. “I was wondering about grandpa in Vietnam, you said he died from liver problems, do you think it was hepatitis B?”
  • Or try breaking through the stereotypes surrounding hepatitis B. “Everyone thinks you get hepatitis B because you’re promiscuous or do drugs, but actually most Asian-Americans got it at birth.”

Choose a time when there won’t be many distractions. Try talking to a few relatives ahead of time so they are prepared to be supportive when you broach the topic with your family.

Ultimately, we can’t change other people. Our relatives may simply continue to refuse testing and treatment despite our best intentions. We don’t have to let them off the hook completely, but we must accept they are doing the best they can. If we keep our relationships with them open and cordial, they may be willing to talk to us in the future when they are ready to get tested. To view a video of a daughter telling her parents why they should be tested, click here.

How do you politely refuse the host who insists that you drink?

Practice saying no: Often there are people at a party or event who take it as a personal insult if you do not join them and drink alcohol. You need to prepare for their rudeness and be ready to firmly say no. This can take practice, so do some role-playing if needed ahead of time. It gets easier with time.

Prepare a reason for not drinking: Sometimes, those annoying hosts, friends or relatives just won’t give up, so you may have to lie. “Sorry I’m taking medication and I can’t drink.” Or, “My stomach is upset and I want to be able to enjoy all this food.” You never have to disclose your hepatitis B infection in this casual social setting, but you can come up with another reason not to drink.

Leave the event early if you feel uncomfortable. Over the course of a party, people may get more intoxicated and it might get harder to turn down drinks. Consider leaving the party before people reach this stage, besides it’s no fun to be at a party with drunk people when you’re sober anyway.

Find others who are not drinking. Search out people who are not drinking at the event. Those are the people you may want to talk to and enjoy.

Choose a non-alcohol drink: If you’re at a bar or party, no one will know that your seltzer water with a slice of lime is not a gin and tonic. Many bars now serve non-alcoholic beverages so no one will know your drink does not contain alcohol.

The most important thing to do is to not pick up a drink no matter what. One drink all too easily leads to another. Your liver will thank you.

Baruch S. Blumberg Institute