I got Hepatitis B from my mom at birth because the vaccine wasn’t available when I was born. I’ve been doing routine blood tests for years and have lived in several states (OH, GA, NY, MA, NJ, and now PA). I’m also 100% supportive of vaccines.
Last Friday, I had my regular Hep B bloodwork done here in Pennsylvania, where I’ve lived for the past three years.
Today, I got an unexpected call from the Pennsylvania Department of Health. Apparently, the lab reported my results to the state, and the caller wanted to know whether I planned to get pregnant so they could track vaccination and follow-up for a future baby.
I understand the public health goal and the importance of preventing mother-to-child transmission of Hep B. I also know the current administration has a different take on Hep B vaccine. But honestly, having a stranger from the state call me about my test results felt very invasive and uncomfortable. I would much rather have these conversations through my doctor.
I know the Hepatitis B Foundation is based in PA, so I’m sharing this in case anyone involved in policy sees it. Has anyone else had a similar experience?
Hi @mew,
I hear you. It is a requirement that individuals who test positive for a group of diseases, including hepatitis B, must be reported to the state. My diagnosis was shared with the state of Maryland as well when I tested positive. I never got a call as a male. Receiving a call out of the blue could feel uncomfortable, but I’m guessing that because you are a woman of childbearing age, they want you to be supported and share resources. I don’t know whether they call all women who test positive. While it feels weird, I doubt there is anything nefarious behind the call. The state has an interest in your children (this is common in every state), so I’m guessing they are trying to play their role here.
This is my personal opinion on this matter. I hope others with similar experiences can share. Best, Bansah1
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Hi @mew
I understand how this can be difficult and a bit embarrassing. However, public health measures to reduce transmission of infectious diseases require that certain preventable diseases be tracked. For example, hepatitis A virus and Mycobacterium tuberculosis (causes tuberculosis) infections need to be reported to the public health office so that they can prevent spread by the best available means. For exmple: HepA is transmitted by consuming contaminated food or water. The public health office uses the case report for contact tracing, knowing who to offer vaccination, and identifying the source of an outbreak to clean up the contamination (like by closing a restaurant for a while for a thorough cleaning and disposal of potentially contaminated food). That is almost certainly why you were contacted and reminded to vaccinate any infants you may have.
Note that this is mandated by state laws, so there was no option for your health care team, and that the laws are slightly different from state to state. Your health information is covered by the HIPPA law, so it is confidential and used only for infection control. It will never be shared for any other use.
I wish you the best,
John
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You bring up a great point, @mew. There are times that officials (e.g. public health workers or clinical staff) might have to call people about their condition. I sometimes advise for projects where people look to do this (e.g. going through patient files to find people who have already been diagnosed with hep B and contacting them to re-engage them in monitoring/care), and this point of contact has always been a concern for me: What is the best way to contact someone about their hep B?
If you (or anybody else) have good ideas that you want to put forth and be considered, please reach out or post here.
Cheers,
Thomas
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Thanks for everyone’s input and appreciate your understanding @ThomasTu.
What is the best way to contact someone about their hep B?
Given that the notice was triggered by a blood test ordered by my doctor as part of a routine hep b checkup, I believe the responsibility to contact me should fall to the doctor who ordered the test. In fact, I had already discussed pregnancy-related concerns with my doctor. The state doesn’t know that because they are not my doctor.
The state could instead work with hep b specialists and maternal-fetal medicine physicians to ensure that patients have an adequate understanding of the relevant risks and considerations. Women with hep b are generally considered high-risk during pregnancy and are referred to maternal-fetal medicine clinics here in the US. As a result, we are already made aware of the potential risks to both ourselves and our babies.
The likelihood of a woman independently ordering her own blood test and managing her own pregnancy and delivery without doctor involvement is extremely low. The state should focus on supporting and coordinating with medical professionals rather than inserting itself into conversations that are already taking place between patients and their healthcare providers.
Sorry to jump in late here - I am in Pennsylvania, right outside of Philadelphia! I work at the Hepatitis B Foundation and we do a lot of work in the Philly area. If you want to chat offline about your experience or about finding good local resources, let me know!
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Thank you @mew, great insight into a potentially stressful interaction. @chari.cohen, are there ways to convey some of these concerns to the public health unit in Philly?
Cheers,
TT
Yes, I can absolutely talk with the Department of Health folks here. It is important for them to balance the goals of their work with the needs of the people they are working with. Let me talk with them, and also see if they have resources for support, as well.
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Thanks for the follow-up, @chari! Much appreciated and hope it can help make people feel a bit better when getting these call.
Cheers,
Thomas
@mew, I spoke with the viral hepatitis program directors in Philadelphia and in Pennsylvania. Both of them are very interested in hearing your perspective and learning from you. If you are interested in following up, I can connect you with them via email - just let me know. If you would rather not follow up with them directly, and there is anything else you want them to know about this experience, you can share it here and I will pass it along. Some of this is policy/regulation - the health department is obligated to follow up - but I know this experience can be improved if the contact is made the right way - and they definitely want to improve, and also to improve awareness and knowledge about the process. Thanks!
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Hello @chari.cohen, thank you so much for reaching out to the program directors and sharing this update. I will message you privately to follow up and happy to provide additional feedback so that this may help improve the process and make it easier for newly diagnosed patients.
I know this experience can be improved if the contact is made the right way
Agreed. My suggestion is for the health department to follow up by mail rather than by phone. Sending a letter creates a paper trail and provides a reliable resource that patients can refer back to. The letter could also include helpful information, resources, and phone numbers for follow-up.
In general, my understanding is that government agencies do not contact people by phone to request money or personal information. Calls like these are often scams. Because of that, I’m already cautious whenever someone calls claiming to be from the government.
Putting myself in a new patient’s shoes, I think many people would appreciate having written resources they can review at their own pace. In my case, the employee simply told me that I needed to vaccinate my baby, even though I am not pregnant, do not have a baby, and has been diagnosed for many years. That made the call confusing and unhelpful.
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You make excellent points! I actually thought that they did send out letters first - but I think the process changes from state to state, so it is not likely the same everywhere. And I agree, I generally don’t pick up my phone if I don’t know the number, and I would not be keen to receive such an unexpected phone call.
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What a great result! Thanks @chari.cohen for facilitating the conversation between the lived experience and the health system. I’m hoping that this will be only one instance of ongoing conversations and empowerment of the affected community to make change!
TT
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