They contracted hepatitis before the vaccine was given at birth – now the shot may be delayed again

John Ellis was 16 when frequent stomach pains led to an unexpected diagnosis.

His mother suggested they go to the doctor, and after a series of tests, the results took even Mr Ellis’s mother, a nurse of 30 years, by surprise: Mr Ellis had hepatitis B.

Born in 1990, just a year before the US began universally vaccinating against the virus right after birth, Mr Ellis had contracted the virus sometime before he got the shot at age 12.

“My mom and my initial reaction was, ‘Is that even something that people get anymore?'” he said. “That was kind of a dark time for me, being a teenager and having to navigate conversations with friends and family about this chronic illness that a lot of people just aren’t familiar with.”

The US has now returned to a time where vaccinations against hepatitis B are no longer recommended for all newborns.

The Advisory Committee on Immunization Practices (Acip), an expert panel that makes vaccine recommendations to the Centers for Disease Control and Prevention (CDC), voted 8-3 on Friday to recommend “individual-based decision-making” for babies born to mothers who have tested negative for the virus. The panel suggested babies be given their initial dose “no earlier than two months of age”.

Some public health experts and those living with hepatitis B say the move is a regression that could risk exposing all children to a virus that has become much less common because of vaccines.

“Evidence shows that even a two-month delay in administering the hepatitis B vaccine can result in hundreds of additional deaths from liver disease and liver cancer as those children age,” said Claudia Hawkins, director for the Center for Global Communicable and Emerging Infectious Diseases at Northwestern University’s Feinberg School of Medicine.

Since the US began giving children their first of several hepatitis B vaccine doses at birth in 1991, data suggests the shots have reduced the number of childhood infections by 95% and prevented an estimated 90,000 deaths.

Hepatitis B is a liver infection that spreads through direct contact with bodily fluids, and can lead to dangerous liver conditions including cancer, liver failure and cirrhosis. Pregnant people who have hepatitis B also can transmit the virus to newborns during delivery, which can lead to chronic infections that can damage the liver.

Most people infected with the virus do not have symptoms and are therefore unaware of their infection.

For years, that was the case for Phil Shin, who was diagnosed with hepatitis B during a doctor’s visit before middle school. Soon, he discovered that his two siblings had the virus, as well as his mother and his mother’s mother, all born years before the vaccine.

A runner, Mr Shin lived for years without symptoms, until age 48, when doctors found a “racketball-sized tumor” in his liver.

He had emergency surgery, but the cancer returned. Eventually, a friend helped him with a liver transplant that saved his life, but waiting for the transplant was agonising.

“That was a period of about eight months where we were just completely in the dark,” said Mr Shin, a board member of the American Liver Foundation. “So that was where most of the emotional toll did its damage.”

Others have lost loved ones over the illness.

Helen Ouyang’s father had only “vague symptoms” like fatigue before he was diagnosed with end-stage liver cancer as a result of hepatitis B. Within three days, he was dead. She was just three years old.

“It was very hard, especially since his death was so early and unexpected,” said Dr Ouyang, an emergency physician with Columbia University Irving Medical Center who wrote about the death in a New York Times essay.

Medications helped Mr Ellis manage his illness, lowering his viral count and allowing him to live without symptoms and complications.

But there is no cure for hepatitis B, and Mr Ellis said there have been other challenges, like explaining to romantic partners that he could potentially spread it to them.

People living with the virus often report high levels of stigma, social isolation and anxiety about their future health, said Dr Hawkins.

Mr Shin said people sometimes assume hepatitis B is only contracted through unsafe sex or drug usage. “But for us, it was completely out of our control,” he said. “It was simply just passed down from our mother.”

Those affected by hepatitis B say it is frustrating to watch Acip, the panel of independent vaccine advisors, raise concerns about an immunisation that has been proven safe and effective.

In June, Health Secretary Robert F Kennedy Jr, a vaccine sceptic, fired all members of Acip and replaced them with his own appointees – several have been critical of vaccines.

During a September meeting where the hepatitis B vaccine at birth was discussed, committee member Robert Malone raised worries about parents who were “uncomfortable with this medical procedure being performed at birth in a rather unilateral fashion without significant informed consent”.

“Are we asking our babies to solve an adult problem?” fellow committee member Evelyn Griffin asked during the meeting.

Kennedy, for his part, has questioned the safety of the hepatitis B vaccine and has downplayed the risk of contracting the virus, claiming it is not “casually contagious” – though research has shown it can be spread through indirect contact such as shared toothbrushes and razors.

“The virus doesn’t discriminate,” Mr Ellis said. “This is a problem for everyone.”

Other critics have argued that babies should only be vaccinated at birth if their mother tests positive for the virus. But such a method is unsafe, doctors said, pointing out that some don’t have reliable access to care and some could receive a false negative test for hepatitis B.

Health experts also worry the end of universal vaccination will lead to more parents opting out of the hepatitis B shots – and could jeopardise insurance coverage if companies do not feel mandated to provide the shots.

For Mr Ellis, it is not hard to imagine what the Acip vote could mean for some children if they do not have access to vaccines.

“I’m kind of a living, breathing testament to what could happen,” he said. “I didn’t get the vaccine at birth. I got the vaccine later in life, and I still contracted hepatitis B.”