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300 Million Reasons, About Hepatitis B, HBV, Hepatitis B Awareness, Hepatocellular Carcinoma, Liver, Liver Cancer, Liver Health, Living with Hepatitis B, United States

Podcast Recap: Barriers to Liver Cancer Surveillance

 

 

 

 

 

 

 

 

 

 

 

 

 

In a recent episode on the B Heppy podcast, Dr. Neehar Parikh, a hepatologist at the University of Michigan, discussed the link between hepatitis B and liver cancer, barriers to screening for liver cancer, and screening methods for liver cancer.  

Hepatitis B and Liver Cancer 

Most people are not unaware of the link between hepatitis B and liver cancer. Hepatitis B can cause liver cancer, especially when left untreated or unmonitored. The hepatitis B virus (HBV) can cause serious damage to liver tissue and result in the growth of tumors that may become dangerous over time. This is why doctors recommend patients living with hepatitis B to continue to monitor their liver health and take treatment if necessary to prevent the progression to liver cancer. The best way to check for cancer is by screening. It is recommended to get liver cancer screening (usually through an ultrasound that looks at damaged tissue or abnormal cell growth) once every six months.  

Barriers to Liver Cancer Screening 

There are several barriers to liver cancer screening at the provider and patient levels. For providers, many times liver cancer screening is not prioritized when compared to other types of cancer screening programs. This is partially due to the limited evidence on liver cancer screening benefits (even though data exists to show that liver cancer screening is valuable, it’s not as strong as the evidence used to back up other cancer screening initiatives like colonoscopy or breast cancer screening). This makes liver cancer a less valuable option for providers to recommend to their patients. Providers are also not always following recommendations or guidelines from liver societies on hepatitis B management and liver cancer surveillance. Liver cancer screening is also not included in the United States Preventative Services Taskforce (USPSTF), which is a tool used by most providers in the U.S. to recommend preventative services to their patients.  

From the patient’s perspective, liver cancer screening is not always discussed by providers. For people living with chronic hepatitis B, many are not aware of the link between the virus and liver cancer. They are less likely to ask more questions about monitoring their liver health if the option or recommendation for screening is never brought up in a conversation with their providers. For many people who need liver cancer screening, they have limited access to care (loss to follow-up, lack of health insurance coverage, etc.). Limitations with the electronic health records (EHR) system is a challenge for patients who may find it difficult to schedule appointments (sometimes patients are not sent reminders to get ultrasounds). 

For people living with hepatitis B, liver cancer is a serious health risk. It is crucial to make sure patients are aware of the link between hepatitis B and liver cancer, the role of screening in early diagnosis and prevention of advanced tumors, and the importance of monitoring liver health as recommended by liver societies and guidelines on liver cancer surveillance.  

Listen to Dr. Parikh’s full episode on B Heppy here: https://bheppy.buzzsprout.com/1729790/14248470-barriers-to-liver-cancer-surveillance-with-dr-neehar-parikh. 

Additionally, the Hepatitis B Foundation recently launched a Learn the Link campaign to help spread information on the link between hepatitis B and liver cancer. View all about the campaign and get access to free resources here.: https://www.hepb.org/research-and-programs/liver/hbv-liver-cancer-connection/ 

Hepatitis Awareness Month, Hepatitis B Awareness, Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention, Hepatitis B Treatment, Liver Cancer, Liver Health, Living with Hepatitis B

Hep Matters Vignettes: Waiting for a Cure.

 

 

 

 

 

 

 

 

Hep Matters: Brief vignettes focused on promoting awareness of hepatitis B and liver cancer through fictional narratives inspired by real events and experiences

 

 

The Scenario 

 

 

 

 

Amina was born and raised in Kandahar, Afghanistan. At the age of 17, she moved to the United States with her family. During a routine check-up with her primary care doctor, Amina discovered that she had hepatitis B. She had never heard of the disease and explained that she always takes care of herself. The doctor told her that hepatitis B is a virus that damages the liver, and anyone can get it unless they are vaccinated to protect against it. Amina recalled that she never received any vaccinations for hepatitis B. Her family members were also unaware of how hepatitis B gets transmitted. 

 

 

Amina asked her doctor how she could get rid of this virus. Her doctor explained to her that there is no cure for hepatitis B, but antiviral treatment options do exist. While she may not be able to completely get rid of the virus, she can help protect herself from serious conditions such as hep B related cirrhosis or liver cancer with treatment. Amina’s doctor encouraged her to get treatment to prevent any serious problems from occurring. He also mentioned that treatment for hepatitis B is safe and effective. This did not make any sense to Amina. She thought to herself that if a treatment wouldn’t cure her of the disease, then there is no point in taking it. She felt healthy and did not show any symptoms. After the doctor suggested treatment options, she said that she will wait for the cure.

 

 

After moving to the U.S., Amina had gotten busy with school and work and did not follow up with her primary care doctor for years. Amina experienced stomach pains from time to time but they often went away on their own. On one occasion, her stomach pain worsened. She had to take a few days off from work to get better using home remedies, but they didn’t help. Finally, she went to the doctor’s office to learn more. She discovered that she had liver cancer. Her doctor referred her to a hepatologist (a liver specialist) for further treatment.  

 

 

 

The hepatologist explained to Amina that hepatitis B can lead to liver cancer without monitoring and treatment. Even though a cure is not available, treatment options do exist, and they help in slowing and preventing serious liver disease, liver damage or liver cancer. If Amina had started antiviral treatment on time, she could have saved her liver. The doctor recommended chemotherapy for Amina to treat the cancer. Not only did her medical bills go up but Amina felt physically and mentally exhausted by the procedures. She advocates for everyone living with hepatitis B to get treatment if they need it and not wait for the cure. She also participates in advocacy efforts to make treatment options more affordable for people living with hepatitis B. 

 

 

The Challenge: 

Lack of awareness: 

Amina and her family had little knowledge about hepatitis B before her diagnosis.  They were not vaccinated, which put them at an increased risk of getting hepatitis B. Even after her diagnosis, Amina did not take the time to fully understand her diagnosis, what lifestyle she needs to follow, or available treatment options. Not knowing enough about one’s hepatitis B diagnosis can put people at risk for more serious problems in the future such as liver cancer.  

Barriers to treatment 

After her doctor went over the treatment options, Amina decided to wait for a cure. While it is not clear if financial reasons played a role in her decision to not get treatment, the cost of treatment is certainly an important factor when considering treatment options for many people. Not having insurance coverage, high out-of-pocket costs, and side effects from medication can be barriers to getting treatment for hepatitis B.  

Difference between the cure and the current treatment for hepatitis B 

Instead of getting treatment, Amina decided to wait until a cure is available for hepatitis B. It is very important to understand the difference between treatment for hepatitis B and a potential cure. While scientists are working on finding an effective cure, it is not yet available. The process of getting a new medication approved for use is very long and consists of many procedures and steps, to ensure safety and effectiveness. The available treatment for hepatitis B is very effective in preventing serious liver problems such as cancer as it can control the long-term effects of the virus on the liver. There are many different treatment options available to reduce the symptoms, help people feel better, and prevent progression of hepatitis B to advanced liver disease such as liver cancer.  

 

What Can You Do? 

Don’t wait! 

After receiving your diagnosis, the most important step is to not wait and to get connected with care immediately. Schedule an appointment with your doctor and discuss your results. Take the time to understand your diagnosis and ask important questions. Discuss treatment options. Sometimes, treatment is not needed but other times, it’s important to start treatment right away. Encourage your friends and family to get screened and vaccinated for hepatitis B.  

Find Resources! 

The Hepatitis B Foundation has excellent resources on all things related to hepatitis B knowledge, prevention, and treatment. Check out some of our resources below:  

Information about hepatitis B:  

  • https://www.hepb.org/resources-and-support/fact-sheets/ 

Community support:  

  • https://www.hepbcommunity.org/  

Medication assistance programs 

  • https://www.hepb.org/treatment-and-management/patient-assistance-programs-in-the-u-s/ 

Resources for those newly diagnosed  

  • https://www.hepb.org/prevention-and-diagnosis/newly-diagnosed/ 

Hepatitis B research institute 

  • https://www.blumberginstitute.org/ 

Hepatitis B Prevention, Hepatitis B Treatment

Be Your Own Advocate in the Medical Room

The hepatitis B virus (HBV) can be transmitted two ways: 1) through direct contact with blood and 2) infected body fluids. Some risks for direct blood contact are obvious, such as touching an open wound to another open wound or cleaning up someone’s blood without any protective gear. However, other methods of blood transmission are harder to catch. Common activities like sharing razors, earrings, or toothbrushes are simple, innocent actions, yet they all have the potential for blood exchange.

Medical and dental procedures are aspects of our lives that we might not think twice about. While beneficial to our health, they also carry the risk of exposure to another person’s blood. Surgeries, shots, and dental activities all use sharp objects that pierce the skin and draw blood.  If the tools are not properly sterilized, or cleaned, before they are used on a new patient, the blood that was on the equipment can be transferred to the next patient.

Image courtesy of Cook Services

How do I know if medical tools are sterile? Ask! It is your right to know if the equipment that will touch your body has been thoroughly cleaned. In a dentist office, the assistant might unwrap a package of tools in front of you; this typically means that the tools are either new or have been properly cleansed. In a medical setting, needles and surgical equipment might come in packaging as well. If you still are not certain, feel free to ask what the standard cleaning procedures are for the tools being used. The staff will be happy that you are taking your health into your hands!

Why is it important to have sterile tools?   Hepatitis B earned the nickname “silent infection” because there are often no symptoms. Those who have been infected may not take the necessary precautions simply because they do not know that they should. They may not even know they are infected! In many cases, medical and dental professionals are unaware when a patient has hepatitis B. Therefore, it is important to make sure that all equipment that is being reused has been sterilized. Although there are no global sterilization standards, many countries and medical facilities around the world – like hospitals, dental offices, and doctor offices – have disinfection guidelines and practices for their equipment.

Tips to Protect Yourself:

  1. Be your own advocate: Ask the dental hygienist, nurse, doctor, acupuncturist or person in charge of your procedure if the tools have been sterilized.
  2. Know where you go: Try to visit medical or dental facilities that you trust and that provide clean, safe environments for any procedures involving blood or body fluids.
  3. Get vaccinated: Hepatitis B is a vaccine preventable disease. After receiving all three doses, most people are protected for life! Check your immunization records to make sure that you have been vaccinated or ask your doctor or local clinic about the vaccine.
  4. Share with caution: Sharing or eating food prepared by someone with hepatitis B is safe, but any activities that may involve direct contact with blood carry a risk. A good guideline is to keep all personal hygiene items personal.

If you think you have been exposed to hepatitis B, it is important to get tested. Visit your doctor or local health clinic to get screened.

If you have been diagnosed with chronic hepatitis B, our Physicians Directory*  can help you locate a liver specialist near you. The World Hepatitis Alliance can also help you find health care services and hepatitis B education in your country.

*Disclaimer

The Hepatitis B Foundation Liver Specialist Directory is intended for use by the public to assist in locating a liver specialist within a specific state or country. All data is self-reported and is not intended for use by organizations requiring credentialing verification. The HBF does not warrant the accuracy, completeness, timeliness, or appropriateness for a particular purpose of the information contained in the Liver Specialist Directory. The HBF does not endorse the individuals listed in the service, nor does HBF verify medical qualifications, licenses, practice areas or suitability of those listed. In no event shall the HBF be liable to you or anyone else for any decision made or action taken by you based upon the information provided in the service. Note: This is not a physician referral service. The HBF cannot provide referrals to specific physicians nor advice on individual medical problems.

Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention, Hepatitis B Treatment, Living with Hepatitis B

HIV/HBV Co-Infection

World AIDS Day was last Friday, December 1st. It is a day dedicated to raising awareness about HIV and AIDS. However, it is also a great opportunity to discuss the possibility of coinfection with hepatitis B virus, HBV.

 Dr. John Ward, MD, Director, Division of Viral Hepatitis, CDC talks about hepatitis B, hepatitis C, and HIV epidemics in the United States.

Hepatitis B (HBV) and HIV/AIDs have similar modes of transmission. They can be transmitted through direct contact with blood, or sexual transmission (both heterosexual and MSM). Unfortunately, people who are high risk for HIV are also at risk for HBV, though hepatitis B is 50-100 times more infectious than HIV. Fortunately hepatitis B is a vaccine preventable disease and the vaccine is recommended for individuals living with chronic HIV.

Nearly one third of people who are infected with HIV are also infected with hepatitis B or hepatitis C (HCV).2 To break down the numbers further, about 10% of people with HIV also have hepatitis B, and about  25% of people with HIV also have hepatitis C.2 Liver complications due to HBV and HCV infections have become the most common non-AIDS-related cause of death for people who are HIV-positive.3

Who is at risk of HIV and HBV co-infection? Because both infections have similar transmission routes, injection drug use and unprotected sex (sex without condoms) are risk factors for both infections.4 However, there are additional risk factors for HIV and  for HBV that put people at risk4

It is important that people who are at risk of both diseases are tested! HIV-positive people who are exposed to HBV are more likely to develop a chronic HBV infection and other liver associated complications, such as liver-related morbidity and mortality if they are infected with HBV.1

If a person is co-infected with both HBV and HIV, management of both diseases can be complicated, so a visit to the appropriate specialists is vital.3 Some anti-retrovirals, which are usually prescribed to treat HIV, can eventually lead to antiviral resistance or liver-associated problems.3 One or both infections will require treatment and must be carefully managed.  Treatment differs from person to person .4

It is also important to hear about the perspectives of those who are living with co-infections. As a part of our #justB: Real People Sharing their Stories of Hepatitis B storytelling campaign, Jason shares his experience of living with both hepatitis B and HIV/AIDs.

To learn more about HIV and viral hepatitis coinfection, go here. For more #justB videos, go here.

References:

  1. Centers for Disease Control and Prevention (CDC). (2017, Sept). HIV/AIDS and Viral Hepatitis. Retrieved from: https://www.cdc.gov/hepatitis/populations/hiv.htm
  2. Centers for Disease Control and Prevention (CDC). (2017, June). HIV and Viral Hepatitis. Retrieved from: https://www.cdc.gov/hiv/pdf/library/factsheets/hiv-viral-hepatitis.pdf
  3. Weibaum, C.M., Williams, I., Mast, E.E., Wang, S.A., Finelli, L., Wasley, A., Neitzel, S.M, & Ward, J.W. (2008). Recommendations forMorbidity and Mortality Weekly Report (MMWR), 57(RR08), 1-20. Retrieved from: Identification and Public Health Management of Persons with Chronic Hepatitis B Infection. https://www.cdc.gov/mmwr/preview/mmwrhtml/rr5708a1.htm

Hepatitis B Advocacy, Living with Hepatitis B

Join Us for a Twitter Interview! Meet Our Storytellers and Learn Their Hepatitis B Stories

#justB-Twittervu-blogThe Hepatitis B Foundation is proud to launch its storytelling campaign, sharing the stories of people living with and affected by hepatitis B. Join the Twitter interview at 2 p.m. (EST), Tuesday, May 16, hosted by the Hepatitis B Foundation and StoryCenter.

We will introduce three of our storytellers and their stories. Join the Twitter interview with the hashtag #justB and hear the poignant stories of real people living with hep B.

We will be introducing Jason, Bunmi and Maureen K. Jason, was in a difficult place in his life with addiction and depression when he learned of his hepatitis B and sought treatment. Bunmi, originally from Nigeria, talks about the loss of her father to hepatitis B- related liver cancer and the unwillingness of her family to talk about his disease. Maureen’s hepatitis B journey began with the adoption of her daughter, and the struggle with disclosure with family and friends. These brave storytellers are ready to put an end to the silence surrounding hepatitis B.

Below are the topics scheduled for discussion during the Twitter interview. How can you contribute to the conversation? Please support Jason, Bunmi and Maureen K. as they disclose their hepatitis B stories on social media. Consider sharing parts of your hep B story or pose a question. Join the conversation with the hashtag #justB.

T1. Tell us about hepatitis B, the storytelling campaign and what the foundation hopes to achieve for those affected by hepatitis B.
T2. What makes hepatitis B different from other diseases, and how do these stories highlight the challenges associated with hepatitis B?
T3. We’d like to open it up to our storytellers. Please tell us about your story, and what makes hepatitis B different from other diseases.
T4. How has hepatitis B affected your life?
T5. What made you decide to share your hepatitis B story? Were you concerned with the stigma associated with hepatitis B?
T6. Describe your experience meeting with others impacted by hepatitis B.
T7. If there is one message you would like to get across to others about coping with #hepatitis B, what would it be?
T8: What would you tell others that are struggling with whether or not they should share their hepatitis B story?

Co-hosts and special guest handles include:

Be sure to watch Jason, Bunmi and MaureenK‘s stories.

Are you just getting started with Twitter and want to know how to join the conversation?  Type #justB in the search box of the Twitter application and click on the “latest option” to follow the twitter view.

#justB in search box

 

 

 

 

 

 

 

You can prepare any questions or tweets you might have for the above participants in advance, or you can also tweet on the fly, re-tweet, or Like a tweet from the chat.

The topics are labeled T1, T2, etc. so please respond/answer specific topic by using A1, A2, etc. in front of your tweets. Remember to include the #justB hashtag, which is not case sensitive, in all of your tweets.

Looking forward to sharing the stories of our guests on the Twitter view. Please welcome them by joining the conversation!

Uncategorized

Twitter Chat: Partner Highlights From Hepatitis Awareness Month

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Join Hep B United, the National Viral Hepatitis Roundtable, CDC’s Division of Viral Hepatitis, and the Hepatitis B Foundation for a Twitter #HepChat Wednesday, June 15 at 2 p.m. EDT. The chat will highlight Hepatitis Awareness Month outreach events and allow hepatitis B and C partner organizations to share their successes, challenges, and lessons learned from their efforts.

Continue reading "Twitter Chat: Partner Highlights From Hepatitis Awareness Month" →

Hepatitis B Prevention, Liver Cancer

Do You Know Your Hepatitis Facts from Fiction?

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Hepatitis-Awareness-Month(2)
May is Hepatitis Awareness Month!

In recognition of May as Hepatitis Awareness Month, Liver Cancer Connect reviews some important facts and dangerous fiction about chronic hepatitis B and C- the world’s leading causes of liver cancer.  Continue reading "Do You Know Your Hepatitis Facts from Fiction?" →

Hepatitis B Prevention

Celebrate Mother’s Day by Breaking the Cycle of Hepatitis B Transmission From Mother to Baby

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Great blog written by Corinna Dan, RN, MPH, Viral Hepatitis Policy Advisor, Office of HIV/AIDS and Infectious Disease Policy, HHS , discussing the strategy to eliminate perinatal transmission of hepatitis B in the U.S. In many parts of the world, transmission from an HBV infected mother to her baby is the most common mode of transmission.  If you are a pregnant woman, please ask your doctor to screen you for hepatitis B. If you learn you have hepatitis B, talk to your doctor to be sure your baby receives appropriate prophylaxis within 12 hours of birth so you can break the cycle of transmission from mother to baby. Happy Mothers Day! 

Eliminating Perinatal Transmission of Hepatitis B: More Than Just a Test 

Hepatitis B in the U.S.

Nationally, new hepatitis B infections have been reduced by 82% since 1991 because of the availability of safe and effective vaccines, as well as improved prevention in healthcare settings. The Centers for Disease Control and Prevention (CDC) estimates that 1.4 million Americans are living with chronic hepatitis B infection. Unfortunately, many of these people became infected before the widespread availability of the hepatitis B vaccine in the early 1980s. Most are unaware of their infection, which places them at greater risk for severe complications of the disease, and for transmitting the virus to others. For women of childbearing age, this lack of awareness also increases the likelihood of transmitting hepatitis B to their infants.

Perinatal hepatitis B – spread from an infected mother to her infant at the time of birth – is estimated to account for 800-1,000 new infections each year in the United States. Unfortunately, this number of annual new, preventable infections has remained unchanged in recent years, which is why the elimination of mother-to-infant transmission of hepatitis B is one of the main goals of the Action Plan for the Prevention, Care & Treatment of Viral Hepatitis. As the Plan observes, the persistent annual number of perinatal hepatitis B cases is particularly concerning because approximately 90% of HBV-infected newborns develop chronic infection; up to 25% of these children will die of cirrhosis, liver failure, or liver cancer later in life.

Tackling Perinatal Hepatitis B

To achieve the goal of eliminating perinatal HBV, the Action Plan calls for the provision of postexposure prophylaxis (i.e., hepatitis B immune globulin and hepatitis B vaccine) to all infants born to HBV-infected women, a strategy consistent with the recommendations of the Advisory Committee on Immunization Practices (ACIP) in its “Comprehensive Immunization Strategy to Eliminate Transmission of Hepatitis B Virus Infection in the United States.” This recommended treatment is to be provided within 12 hours of birth followed by timely completion of the rest of the three-dose hepatitis B vaccine series, to prevent the infant from contracting hepatitis B. The Action Plan and ACIP also observe that care coordination is needed to ensure that infants born to HBV-infected women receive the services needed to protect them against hepatitis B.

A vital partner in these efforts to eliminate mother-to-infant transmission of hepatitis B is CDC’s Perinatal Hepatitis B Prevention Program (PHBPP) which supports activities in all 50 states, six cities, and five territories. The PHBPP was established in collaboration with state/local health departments and healthcare providers to promote use of the available tools – prenatal testing and vaccines – to reduce perinatal HBV transmission. The program works to identify pregnant women who are infected and provides case management services to ensure that infants receive the appropriate vaccines after birth to help prevent perinatal transmission. This program has been successful, ensuring that 95% of the identified infants born to infected mothers and case managed by the program received hepatitis B immune globulin and the first dose of hepatitis B vaccine within one day of birth and 83% of these infants complete the hepatitis B series by 12 months of age. In addition, whenever possible, the mother is counseled about hepatitis B and encouraged to talk with her healthcare provider for a full HBV evaluation. The program also seeks to identify household and sexual contacts of women who test HBV-positive – CDC reports that in 2011 the programs identified 9,681 such contacts – providing prevention information and recommending screening.

Despite these successful outcomes, challenges remain; the PHBPP estimates it identifies and case manages only about half of the expected births to hepatitis B infected women annually. Although hepatitis B screening is recommended for all pregnant women as part of routine prenatal care, not all women are screened. Some women do not seek or remain in prenatal care. In other cases, even when HBV screening occurs, health departments are not informed of screening results that reveal a pregnant woman is infected with hepatitis B – in some cases this is because such reporting is not required in that jurisdiction, in other cases it is an error or oversight. Under these circumstances, the health department cannot connect the expectant mother and her family to the services available through the PHBPP.

Another key support to efforts to eliminate perinatal HBV transmission is the implementation of provisions of the Affordable Care Act that will help improve prenatal hepatitis B screening. Under the Affordable Care Act, the hepatitis B test for pregnant women is among the Preventive Services that new health insurance plans issued after September 23, 2010 are required to cover without the consumer having to pay a copayment or co-insurance or meet her deductible. By making hepatitis screening more widely accessible and eliminating cost barriers, the healthcare law will also help bring us closer to the Action Plan’s goal of eliminating perinatal transmission of HBV.

In order to further reduce the number of infants who are perinatally infected with hepatitis B, healthcare providers, practices, and hospitals that care for pregnant women need to increase awareness and efforts to accurately report hepatitis B-infected pregnant women and refer the families to the PHBPP.

What Can Healthcare Providers Do?

Healthcare providers play a key role in eliminating perinatal hepatitis B. Steps that healthcare providers can take include:

  • Ensure that your practice is collaborating with the public health department to report women who are chronically infected so that their infants can benefit from case management. The CDC viral hepatitis reporting form [PDF 46KB] is available online.
  • Educate your patients about hepatitis B and listen to their concerns; the CDC has great educational materials available for patients.
  • Work with your local hospitals and birthing centers to ensure that they are following recommended policies and procedures.
  • Reach out to your state/local Perinatal Hepatitis B Coordinator if you have any questions or need additional assistance to implement the CDC recommendations.

What Can Pregnant Women Do?

  • Ask your healthcare provider if you were tested for hepatitis B and what the result of the test was.
  • Learn more about hepatitis B to make sure your new infant receives the preventive services needed to prevent hepatitis B infection at birth and throughout your child’s life.
  • If you learn that you are living with hepatitis B, check out the CDC’s frequently asked questions and talk with your healthcare provider to find out what you should do to stay healthy and ensure that you will be there to nurture and watch your child grow.

On this Mother’s Day during Hepatitis Awareness Month, please take the opportunity to learn more about hepatitis B and what steps you can take to realize the goal of eliminating mother-to-infant transmission of this preventable disease.

Please link to the original article if you would like to listen to this blog in it’s entirety.

 

Baruch S. Blumberg Institute