Hi Everyone,
The ACIP meeting to determine whether the panel will change the hepatitis B universal birth-dose policy in the U.S is around the corner. There is an opportunity for patients, providers, researchers, families, among others, to submit a public comment. I want to share this opportunity and encourage those interested to do so. Let your voices be heard, and together we could thwart this egregious policy change attempt for good.
Below are the steps to submit a public comment. Thank you, Bansah1.
As you may know, the Advisory Committee on Immunization Practices (ACIP) is meeting this December to deliberate on childhood vaccine recommendations, including the universal hepatitis B birth dose recommendation.
The oral comment and written comment portalsare now open to provide valuable insight on the need to maintain the universal hepatitis B birth dose. We strongly encourage all partners to use our​​updated template and guid​​​​​e​​​ ​to create and submit comments.
Done! Sometimes I feel helpless, because I feel like there’s nothing I can do. It makes me sad and angry that these new proposals are not at all based on science. Vaccines aren’t fun, and it sucks to see your baby crying after getting their shots, but it’s so WORTH IT for the protection they provide. If only these people knew how often I have to get pricked with needles for blood draws to make sure that my liver is functioning.
@Caraline and @et5656,
Thank you both for adding your voices to this matter. Yes, I agree with you both. Honestly, I am unsure what problem the ACIP panel is trying to fix here. Viruses are no respecters of boundaries, wealth, political affiliation, zip codes, or race/ethnicity. Sadly, here we are, yet another attempt by individuals with personal interests, ignoring the science and common sense to score cheap political points at the expense of others (babies/infants/children). We need to let them hear our voices. Thanks, Bansah1.
I highly encourage people living with Hep B to speak up and take action with the written and/or oral comments.
At the recent Sep-19th ACIP meeting, I delivered my public oral comment, sharing my story to advocate in support of the universal birth dose vaccine. Here is the replay (3-minutes).
Faced with public pressure from all sides, the ACIP committee at that September meeting tabled and delayed a vote to change the Hep B birth dose vaccine schedule. It was a “win” for us. Once again, let’s step up and take action.
Often times when I feel helpless and doubt whether or not to do something, I am inspired by this quote from St. Mother Teresa: ”I alone cannot change the world, but I can cast a stone across the water to create many ripples.”
May each of us cast a stone… Together, our ripples gather to make waves. Each of us can make a difference.
Not sure I agree with you all here. Assuming that pregnant women in the US are tested for hepatitis B during pregnancy (are they?) and most women test negative, why would their child need the hepatitis B vaccine so soon after being born? I have never heard of someone contracting hepatitis B as a child. As someone who contracted hepatitis B as an adult (and in whom it unfortunately became chronic) and was told by my doctor that most adults acquire the virus sexually, I’m confused as to why the hepatitis B vaccine isn’t recommended for adults as well. Why is this not as much of a cause of concern (or more cause for concern) than the current debate surrounding the necessity of the hepatitis B vaccine for children?
I don’t know the statistics but many children are born with the virus during birth.
I think it’s good to have the babies vaccinated as it protects them their whole life.
During childhood it’s hard to protect the children if one or more family members have the virus. Children are always touching their faces ect. They don’t understand the seriousness of the disease.
If they are born with HepB and are not vaccinated, they have more chances of spreading the virus.
I’m sure others will give us statistics
I know in Australia we are vaccinating teenagers as part of their regular vaccinations.
But a child will only get the virus at birth if their mother has the virus too. If she doesn’t - and most women don’t - why vaccinate every child? Like I said before, I have never heard of children contracting the virus during childhood, i.e. after birth.
And I still don’t understand why the vaccine isn’t recommended for adults. If the virus can be sexually transmitted, that puts most adults at risk. Even if a person thinks they are in a stable, monogamous relationship, they can never be sure about their partner.
@Barry The vaccine is actually recommended for all adults age 18-59 in the US, and adults 60+ at high risk. However, I think this is a newer recommendation that may not have existed when you were infected. Even today, I think a lot of primary care doctors are not aware of this recommendation.
As for birth vaccination, I actually wondered how this still happens when mothers should have been tested during pregnancy. I found this video (it’s an older video, but I think still relevant) from Hep B United discussing this topic https://www.youtube.com/watch?v=AGvUNnHfmlQ. TLDR:
Doctors sometimes order the wrong test and/or the lab puts the wrong test into the system when you go there. There are many blood tests related to hepatitis B that look similar, and someone who is not a liver specialist may not understand the difference between them. I’ve actually had this happen to me last year, where my doctor ordered a test for surface antigen, and then the lab performed surface antibody.
Healthcare providers are often in a rush, and you’ll often see several different providers during an episode of care. So the person performing newborn care for the baby in the hospital may not notice if the mother’s chart says HBsAg-positive, so they don’t give the vaccine and/or HBIG.
If the mother was recently infected during pregnancy, this could get missed, depending on the timing of the screening test. Unfortunately, the risk of a pregnant woman with acute HBV passing it onto her baby is very high, unless prophylaxis is given.
Unfortunately, transmission can occur in young children, before they start having sex. There have been cases reported in daycares. Kids fall and hurt themselves, and that involves blood. Kids also do things like sharing toothbrushes (the risk here is that peoples’ gums can bleed while they brush). I was watching this other video about the impact of changing the ACIP recommendations. https://www.youtube.com/watch?v=mxeiUDXMmGM. They had a couple of patient advocates on there. One of them was in fact infected during early childhood (though not at birth). Unfortunately, it is common for people diagnosed with hepatitis B to have no known risk factors (i.e. they have no idea how/where they got it). I’ve heard that this happens in about 30% of cases, which is why I think we need universal vaccination.
Also, I want to acknowledge that the recommendation doesn’t take away parents’ individual decision-making. I actually think it’s probably fine for parents to decide to wait to vaccinate their child against hepatitis B, as long as the mother tests negative AND has immunity through vaccination, as long as there are no household members who also have it, and as long as the child gets the vaccine before starting daycare/school. But in the absence of this information, I think that the default should be to give the vaccine.
The recommendation DOES help ensure that parents who want the vaccine can get the cost covered via their private insurance, or by government programs, like Vaccines for Children or CHIP. Unfortunately, removing these recommendations opens the door for the shots to no longer be covered by such programs.
Also, I should add that I was adopted from China, and came to Canada as a baby. Supposedly I was tested for hepatitis B before coming to Canada, but for some reason, it was not detected. So I think one of three things could have happened (most likely first)
I got hepatitis B from birth, and they ran the wrong test.
When they were giving vaccines to the babies in the orphanage, they may have reused needles, and I could’ve gotten it from one of the other babies. If that was the case, I might have gotten tested too soon after the exposure for it to be detected.
Or I could’ve gotten it from school or daycare after coming to Canada.
I was diagnosed at age 12, long before I was sexually active. I had no other risk factors, apart from being born in a hepatitis B endemic country.
In my case, I kind of doubt that they would have tested all pregnant women in China in the 90’s, but I still think that my hepatitis B status should have been discovered earlier than it was, but that didn’t happen due to similar reasons for why it can get missed during prenatal screening.
The birth dose vaccination is a critical part of HBV control efforts world-wide. Giving the first dose of the vaccine to a child borne by a HBV+ mother within 24 hours of birth blocks HBV transmission in 90% of infants. It is about the easiest and most cost-effective ways to control HBV. The US recommends the birth dose vaccination for all kids. That has 2 benefits–sharply reducing the transmission rate from HBV+ mothers who may have somehow slipped through the prenatal screening processes, and it protects the child from post-birth transmission. As has been remarked above, children can be infected by HBV if they have blood-to-blood contact with an HBV+ person, and that is not rate in the rough-and-tumble world of childhood play. It also protects them from other transmission routes as they get older and become sexually active and may experiment with injectable drugs.
To the best of my knowledge, booster shots for HBV are not yet recommended, but in my opinion, they should be given around age 18-20. There are some interesting studies of nursing students in Taiwan that indicate a substantial fraction of them have anti-HBs titers (also sometimes called anti-HBs antibodies or HBs antibodies) too low for full protection, and some of them were getting infected. I had both my sons boosted with the HBV vaccine just before they left home to go to college.
@et5656: I don’t live in the US so the vaccine recommendations there don’t apply to me. None of what you say, however, explains to me why the hepatitis B vaccine isn’t recommended for all adults. The obsession with vaccinating newborn babies while practically ignoring everyone else seems very strange to me.
@Barry that’s unfortunate that it’s not recommended for adults where you live. I agree that adults should get it if they weren’t already vaccinated during childhood. I’ve recently started sharing my diagnosis more, and I’ve been trying to get my friends to check their vaccination records and/or get tested.
If you are comfortable, it might be a good opportunity for you to get involved with advocacy work to drive policy change so that the vaccine can be recommended for adults where you live too.
Glad to hear it. I do think it’s a good idea for adults to get tested before getting the vaccine, because the longer you wait to vaccinate, the more opportunities there are for you to have caught it before receiving the vaccine. And we know that the vaccine won’t do anything for someone who already has hepatitis B, and in fact provides a false sense of security.
I think the most efficient thing to do is to perform a blood draw during the same visit when the patient gets the first dose. If the blood test comes back negative, then you would just finish the vaccine series as usual. If it comes back positive, there’s no need to finish the vaccine series, but then you’d need to get connected with a specialist.
Hi Barry, I think the reason that the focus is on children is that they are the most vulnerable. Supposed you have to develop a policy for children and adults. The health issues let’s say disabled 9 in 10 children, while among adults it impacts 1 in 10. Where will you focus your policy? That is what policy markers consider, who should be prioritized.
I also think because the majority of adults who get infected as adults recover, so there hasn’t been policies targeting the adult population. Until recently the US did not have universal testing and vaccination. It’s policy was only risk -based , and you can see how that could create gaps.
I agree with you both. I think we should have universal testing and vaccination policies that covers everyone and increase education and awareness.
I do also want to point out that the number of new infections in adults is much higher than the number of infections in children. So even if 10% of adults become chronically infected, that is still a significant number of people. The statistics I have seen are that 300M people worldwide have chronic hepatitis B, but over 2 billion have evidence of current or past infection.
I think the risk-based policy has a lot of problems with it:
It increases stigma for populations who are at increased risk, so then people avoid getting tested at all, because they are afraid of being judged by healthcare professionals (e.g. accusations of being a drug addict)
It is hard for doctors to remember all of the populations that are considered high risk. For example, there is a laundry list of countries that have a high prevalence of HBV. Probably no family doctor would remember all of these countries.
Like I said earlier, about 30% of people diagnosed with hepatitis B have no known risk factors at all. This could be because of insufficient data, because people don’t want to disclose high-risk behaviours, or because the person legitimately doesn’t have any recollection of where they might have picked up the infection.
So that is why I think we do need universal vaccination.
@et5656: Regarding testing, I actually don’t think that people without symptoms of liver disease should get tested. Why? Because a positive diagnosis can ruin a person’s life. That’s certainly what it did to me. Yes, if you are carrying the virus, there is a risk of developing liver cirrhosis and liver cancer but you have to weigh that up against the psychological burden and anxiety of knowing you have the virus, having to go for regular tests, etc. If someone wants to get tested for hepatitis B (or, for that matter, any virus or disease), they need to be prepared for a positive test. Getting tested “for peace of mind” is risky, because if the result is positive, there goes your peace of mind!
@Barry I’m sorry that you feel being diagnosed with hepatitis B ruined your life. For me, I actually don’t feel that way. Of course, there was the initial shock, and anger that I hadn’t been offered the vaccine when I needed it, but it’s gotten easier to deal with over the years. I would rather know my status so that I can take steps to prevent spreading it to anyone else, as opposed to walking around, thinking that I’m protected and making other people sick. I feel like starting treatment improved my quality of life. Considering how sick I was when I started treatment, if I did nothing, I was on a path to having cirrhosis by the time I turned 30. Thanks to modern medicine, that is not the case now.
I actually think it causes more confusion if somebody is diagnosed with hepatitis B later in life when they know that they had the vaccine for it in the past. It undermines confidence in the effectiveness of vaccines, even if that person already contracted HBV prior to getting the vaccine
We have to remember that these numbers are just estimates. We have no accurate numbers. So definitely the numbers could be higher for both sides. For example, the estimates doesn’t factor in those born at home or at rural clinics. Due to stigma and discrimination I doubt we will get to know the true numbers.
I do agree that the risk-based policy is not the most efficient way. The US did this prior to the introduction of the universal policy. Unfortunately, that’s what ACIP is trying to go back to.
I also agree with @Barry. Counseling should be offered before and after testing. I think there’s a program like that for HIV/AIDS.
