MICHEL MARTIN, host:
I'm Michel Martin, and this is TELL ME MORE from NPR News.
In a few minutes, my weekly commentary "Can I Just Tell You?" And I'll tell you just how much federal money is going into your holiday milk and cookies. That is later. But first, we go "Behind Closed Doors," as we often do on Mondays, where we talk about issues that people usually keep private.
Today, we want to lift the curtain on a lethal virus that often goes undetected, and disproportionately affects certain ethnic groups here in the U.S. It's the infectious liver disease hepatitis B. More than a million people have chronic hepatitis B infections, according to the Centers for Disease Control. And half of them are Asian-Americans and Pacific Islanders.
Members of these communities are seven times more likely than whites to die from this disease. To find out more, we've invited into our Washington, D.C., studio Dr. Jennifer Lee, who chairs the board of a - Hepatitis B Initiative of Washington. We also have with us Leslie Hsu Oh. She's the co-founder of the Hepatitis B Initiative in Boston, Washington, D.C., Virginia and Maryland.
She joins us from member station KSKA in Anchorage, Alaska. That's the city she calls home when she's not on the East Coast. And I welcome you both, and thank you so much for joining us.
Dr. JENNIFER LEE (Board Chairwoman, Hepatitis B Initiative of Washington, D.C.): Thanks for having me.
Ms. LESLIE HSU OH (Co-Founder, Hepatitis B Initiative in Boston, Washington, D.C., Virginia and Maryland): Thank you.
MARTIN: So Dr. Lee, if you'd just - the basic question: Why are Asian-Americans disproportionately so much more likely to be suffering from this?
Dr. LEE: Well, the majority of Asian and Pacific Islanders in this country are foreign-born, and the rate of hepatitis B infection is very high in most parts of Asia and Africa. And that's why the incidence rate is so high here.
MARTIN: What's the difference between hepatitis A, hepatitis B and hepatitis C?
Dr. LEE: Theyre three viruses that all cause inflammation in the liver. Hepatitis A is a type of virus that causes an acute infection. It's self-limited so most people don't have long-lasting effects from hepatitis A. And it's passed from oral-fecal contamination. Hepatitis B and C are different viruses that can turn into chronic infections, that can later cause liver cancer and cirrhosis - and actually, are the leading causes of liver cancer.
MARTIN: And so hepatitis A often results from what, eating food that may have been contaminated?
Dr. LEE: Food or water contaminated by someone infected.
MARTIN: Food or water contaminated by somebody who is infected, or something infected. So let's focus on hepatitis B. What happens if you get it? How do most people get it, and how do you - what's the consequence if you do?
Dr. LEE: Well, in the population that we are concerned about, the vast majority of cases are contracted through mother-to-child transmission. And this can be prevented. But unfortunately, it still happens - even in the United States.
MARTIN: How would you prevent it?
Dr. LEE: Well, if the mom is screened - which is mandatory here in the U.S. but not in many other countries, unfortunately, where the rates of infection are quite high - then the infant, after birth, should receive a vaccination and treatment immediately, and then can avoid getting infected with hepatitis B.
MARTIN: And does that work? Does the treatment work?
Dr. LEE: It's very effective and very safe.
MARTIN: So Leslie Hsu Oh, if you'd tell us your story. How did you get involved with this issue?
Ms. OH: About 18 years ago, my brother Jon-Jon(ph) phoned me in the middle of the night. And I was in my dorm room. He was about an hour away, at home, and I remember he was in tremendous pain. And he kept repeating, don't call Mom and Dad, please. It was the first time my parents ever traveled anywhere without us, so we really didn't want to bother them. I called them anyway, and they boarded the first flight. A few days later, we learned that my 17-year-old brother had liver cancer, and that both he and my mom had hepatitis B.
My brother died shortly after his 18th birthday. He was a senior in high school, and I was a sophomore at UCLA. Now, my mother and I had come from a long line of artists, so the days that followed my brother's death, words were the only way we could make meaning out of what happened. A week later, my mom discovered that she, too, had liver cancer. She chose to finish writing a book about Jon-Jon's battle with cancer, and keep her disease a secret.
You see, my mother blamed herself for giving Jon-Jon hepatitis B. She had always been overly protective and diligent about our health check-ups. She wouldn't even let us sit on public toilets or eat - restaurant silverware. So, yes.
MARTIN: Oh, I'm so sorry. I'm so sorry to hear that. That must be devastating.
Was this your first understanding of the impact of the disease? Because I'm sure that a lot of people will - at this point - will have heard about other diseases and their efforts to fight it - like for example, HIV/AIDS, which in this country at this moment, affects some groups, you know, more than others. But I think this conversation will be the first time that many people will have heard this, about hepatitis B.
And so Leslie - and I want to ask you this; and Dr. Lee, I'm going to ask you this as well - did you know about this before you were hit with this in your own family?
Ms. OH: No. It was a huge surprise. My brother basically had severe pain in the middle of the night, and we found out that he had a huge tumor in his liver. And that's when they tested the whole family and found out that he and my mom had hepatitis B.
MARTIN: Dr. Lee, do you think this is widely known in the Asian-American community, that this is something that one wants to be particularly vigilant about?
Dr. LEE: No, I don't think so. And that's why the work of our group is so important, the Hepatitis B Initiative, because people at risk dont understand and don't know about this disease. And even as a health-care professional, as a physician, I didn't know that much about it until I got involved. And it's really unfortunate because we have the means to eradicate hepatitis B with this very safe and effective vaccine. And it's a great opportunity, but theres just not enough awareness about it.
MARTIN: Now, is - the vaccine is given to newborns, correct?
Dr. LEE: Yes.
MARTIN: But what about adults who have the full-blown disease? Does the vaccine work with them as well?
Dr. LEE: No. If you're infected already, if you have chronic hepatitis B, the vaccine, it doesn't hurt but it doesn't help. There's no cure right now but there are treatment options, including antivirals and immune-modulating drugs, that can help control the infection.
MARTIN: Leslie, why did your mother keep it secret?
Ms. OH: This is something that has frustrated me for a very long time because I think - even in her book, she never mentioned hepatitis B at all. She never mentioned that she was sick, either. So her omission really powered me to dedicate our lives to rooting out this silent killer. And that's the main problem with hepatitis B - is, its considered a silent killer because you don't have symptoms the majority of the time. And Asians believe that it's a stigma. They don't want people to know about it because they think it might be an STD, so they just don't want to tell people. And a lot of times, you know, I hear so many stories about people just ignoring it and getting very confused, as well, about what they have. Like recently, a cousin of mine said that he didn't know if he had hep A or B. He said that - later on he said oh, I think I have hep B, but I got it from food - you know.
(Soundbite of laughter)
Ms. OH: And then he also asked me if he could get vaccinated if he was a chronic B carrier, and that's also another - misinformation that's out there.
MARTIN: If youre just joining us, this is TELL ME MORE from NPR News. We're talking about hepatitis B. There are more than a million people in the United States who are living with hepatitis B, right now, with chronic infections. And it turns out that this particular disease has a heavy impact on the Asian-American community. We're talking about why that is, and what can be done about it.
We're talking with Dr. Jennifer Lee and Leslie Hsu Oh. They are both with the Hepatitis B Initiative of Washington, D.C. And Leslie Hsu Oh has lost two family members to liver cancer resulting from the disease.
So Dr. Lee, I have to ask, is there a stigma? Leslie was saying that there is a stigma attached to this. Now, stigmas around diseases are not uncommon. It used to be - I know my parents generation wouldn't talk about cancer. They would use all kinds of euphemisms - like the big C - for reasons that I still don't understand. So that's not unknown but in this day and age, a lot of us think that that's in the past, that people get that disease is morally neutral and -but you agree that there's a stigma, and why?
Dr. LEE: Yes, there is still a stigma. I think part of it comes from myths around hepatitis B transmission. Theres misinformation that hepatitis B can be transmitted through sharing of food, through casual contact like hugging, coughing, sneezing, kissing - and that's not true. So that's one source of it. And another source is also the treatment of people with chronic hepatitis B infection in many Asian countries. There are reports that I've read from China, where people have been openly discriminated against because of their positive hepatitis B infection.
MARTIN: But does, in fact, sexual transmission - body fluids - play a role?
Dr. LEE: Absolutely. You're at risk, your partners and actually, your household contacts can also be at risk because the hepatitis B virus is actually very infectious. Its 50 to 100 times more infectious than the HIV virus. So if you share a razor or a toothbrush with someone who is positive for hepatitis B, there is a possible risk there. So anybody that is positive, all their family members and household contacts should be tested. But over half of the people who have chronic hepatitis infection are Asian Pacific Islanders. And in that population, mother-to-child transmission is the most common route.
MARTIN: Now Leslie, I wanted to ask that given that youve become so active here - and clearly, this is a matter of saving lives. And you want people to be aware, and you want people to take steps to take care of themselves - but do you worry about stigma being associated with this, this issue - worry that people will judge you, judge your family, judge the people who - judge Asian-Americans, for example, as a consequence of more awareness about this?
Ms. OH: Yes. I've been struggling with this idea of stigma for hep B for a while. For me, it's a little bit easier because I don't have hepatitis B. In fact, 95 percent of people who are exposed to hepatitis B, they automatically generate their own antibodies, and they fight it off. So my dad and I are fine. But I do have a lot of relatives who have hepatitis B; a lot of them are not willing even tell me. I've been doing this for, you know, 17, 18 years, and I'm still finding out new, you know, relatives that have come forward and told me about it. And I think the main problem is, all the elders in my life raised me to believe that you have to save face, act as if it never happened, and then are not to talk about it. And those are very powerful cultural beliefs that I think also work against, you know, people feeling comfortable to talk about hepatitis B or do anything about it.
MARTIN: And one other thing, Leslie, is you mentioned that your mother was very aggressive about her children's health, that you all had regular checkups. Hepatitis B was never raised. Why do you think that is? Is it just pediatricians or doctors at that time, just didn't think about it or...
Ms. OH: Yes. And my family, we were very, very diligent about health checkups. We went to every single vaccination scheduled. Never was hepatitis B mentioned. I've also heard of stories of chronic hep B carriers, even recently in the United States, going to doctors who told them there's nothing they can do about their condition, and that all they have to do is to exercise and stay healthy.
MARTIN: So Dr. Lee, give us a final thought. You've given us a lot to think about. I'd like to ask, what should you do to be aware, particularly if you come from an Asian background?
Dr. LEE: Well, there are no symptoms so your body will not necessarily tell you that you're infected. So I'd say if you're an Asian Pacific Islander or an immigrant from an African, sub-Saharan African country, you should assume that you may be at risk. So you should learn more about hepatitis B. Second, you should get screened. Ask your doctor. Your doctor will not automatically order a test, this test for you. It's not a routine screening test, so ask. And if you are positive, then be proactive, and make sure your provider knows that you should be getting regular blood tests and annual ultrasounds to make sure that your infection is not developing into a serious liver condition.
MARTIN: And you're saying that liver cancer does not result in every case. Liver cancer results from...
Dr. LEE: Up to 25 Mm-hmm up to 25 percent...
MARTIN: Up to 25 percent will progress.
Dr. LEE: ...will turn into liver cancer or cirrhosis.
MARTIN: Is there anything you can do?
Dr. LEE: Yes. There are medications to help control and treat the infection. Right now, there are seven drugs that are approved by the FDA to treat chronic hepatitis B infection. And so there are means available. It can definitely be treated, and it should definitely be monitored.
MARTIN: Dr. Jennifer Lee is on the board of the Hepatitis B Initiative in Washington, D.C. She also practices at George Washington Universitys Department of Emergency Medicine. She was kind enough to join us in our Washington, D.C., studio. Leslie Hsu Oh is the co-founder of the Hepatitis B Initiative. As you heard, she's lost two family members to hepatitis B. And we're so sorry for those losses, but we thank you both so much for your work in this area, and for bringing this important issue to our attention. And Leslie Hsu Oh joined us from Anchorage, Alaska.
Thank you both so much for speaking to us.
Dr. LEE: Thank you so much.
MARTIN: If you want more information about hepatitis B and the initiative, we will have links on our website. Go to npr.org, click on Programs, then on TELL ME MORE.