Yoshimi Kawabe’s daughter was 2 years old in 2008 when an unusual rash broke out on her hands and feet. Her family doctor at first thought the rash was caused by hand, foot and mouth disease — a contagious viral infection common in young children — but decided to investigate further after her condition took a turn for the worse.

The doctor ordered a blood test, then informed Kawabe that her daughter had been infected with hepatitis B. As if that wasn’t shocking enough, a subsequent examination of her entire family revealed that her two other children and Kawabe herself also carried the virus.

To this day, the 37-year-old nurse does not know how they became infected, but their doctor suspects one of her children picked it up at a day care center.

“I couldn’t believe it. It was such a shock,” says Kawabe, who asked to remain anonymous in order to protect her children’s privacy. “I thought hepatitis B was a disease that adults got. It didn’t even occur to me to get my children vaccinated for it.”

Hepatitis B is one of the so-called vaccine-preventable diseases (VPD). In Japan, so-called routine vaccinations that help prevent tuberculosis, measles and rubella, inter alia, are encouraged by law, and local municipalities generally cover the cost for each shot. Vaccinations that prevent such things as hepatitis B and mumps, however, are voluntary, and fees range from a few thousand yen to around ¥15,000 per dose.

From Oct. 1, a vaccine against chickenpox was officially added to the list of routine vaccinations.

“It has been more than 20 years since the vaccine was created and we have finally achieved our wish to have it included in the routine (vaccination) schedule,” says Keiko Taya, division chief of the Infectious Disease Surveillance Center at the National Institute of Infectious Diseases.

Chickenpox and the mumps are almost synonymous with childhood, and “chickenpox parties” — where children are deliberately exposed to the varicella virus to promote immunity — were fairly common in the U.S. before a vaccine was introduced in 1995. However, medical experts warn that some cases can become very serious, even deadly. Of the 1 million people infected with chickenpox every year, about 4,000 are hospitalized and 20 die from it, according to data compiled by the Ministry of Health, Labor and Welfare.

“People often regard chickenpox as a sickness that is common among children and it’s true that, normally, children recover without too much trouble,” Taya says. “However, that’s not necessary the case for everyone.”

There are about 110 infectious diseases — from Ebola and cholera to measles and influenza — listed in the country’s Law Concerning Prevention of Infectious Diseases and Medical Care for Patients of Infections. Vaccines are available for just 22 of them.

“Like any medicine, there is no vaccination that has zero side effects,” Taya says. “However, there are very few infectious diseases that are preventable, and vaccines exist to prevent people from experiencing grave health issues.”

In July, a group of doctors, patients and family members of those infected with various diseases held a parade in Tokyo, calling on the government to ensure that vaccinations are free and available to everyone in Japan.

Even though chickenpox is now part of the routine vaccination schedule, vaccines for hepatitis B, mumps and the rotavirus are still excluded. Subsidies for these vaccinations vary depending on the municipality, as well as the stance of local medical practitioners on whether or not they recommend such shots.

What’s more, compensation for victims of side effects differ greatly between those who received a vaccination through the routine program or voluntarily.

According to nonprofit organization Know VPD, Protect Our Children, victims’ families receive ¥42.8 million if someone dies from a routine inoculation. By comparison, victims’ families receive just ¥7.14 million for children who die from a voluntary inoculation.

“We are asking that all vaccines become routine so that there is no inconsistency,” says pediatrician Chiharu Hosobe, one of the organizers of the July parade. “Collective immunity is essential if everyone is to be protected from infectious disease. That, however, is limited, so the people need to speak up.”

Hosobe, head of Hosobe Pediatric Clinic in Tokyo’s Bunkyo Ward, says she often hears mothers express concern about possible side effects of vaccines. The pediatrician holds regular study groups to provide information to parents about infectious diseases and inoculation in an effort to ease their fears.

“I provide information on the consequences of contracting a VPD. I also talk about the side effects of vaccination and ask them to weigh the risks,” Hosobe says. “I tell them there are many benefits to vaccination … and, ultimately, have each family decide what to do.”

However, there is also a strong core group of people opposed to this movement.

Hiroko Mori, former head of the infectious disease section at the former Institute of Public Health (now known as the National Institute of Public Health), has been warning people about the dangers of vaccination for decades.

The 80-year-old expert on public health used to be involved in research to improve the Japanese encephalitis vaccine and prevent the maternal transmission of hepatitis B.

Mori says times have changed and children don’t need to be vaccinated as much, noting that deaths of infants less than 1 year old have dropped from 205,000 in 1947 to 2,200 in 2013. Indeed, Japan has one of the lowest mortality rates of newborns and infants on the planet, according to World Health Organization data.

Much of this is due to the country’s first-class sanitation and levels of nutrition, Mori says, agreeing that vaccination is still advisable in developing countries.

“I don’t oppose vaccination across the board,” Mori says. “Medicine is supposed to be about healing, but babies who cannot speak are being given unnecessary shots because parents are scared. Children are losing their ability to heal naturally.”

Mori says that the push to vaccinate children is so strong that mothers who avoid it are being harassed and accused of neglect.

“There are so many people who have suffered side effects (from vaccination),” Mori says. “All we are asking is to establish the right to say ‘no.’ The right to choose should be recognized as a fundamental human right.”

In recent history, Japan has experienced its fair share of incidents related to vaccination.

In the 1970s, about 300 victims and relatives of children who died after receiving vaccinations against smallpox and other diseases in Tokyo, Nagoya, Osaka and Fukuoka fought against the government and won compensation in the 1980s and ’90s.

Japan introduced the MMR (measles, mumps and rubella) vaccine in 1989 but was forced to take it off the shelves four years later after about 2,000 people suffered side effects that included aseptic meningitis.

These incidents led to a major revision of the Preventive Vaccination Law in 1994, with lawmakers deciding to recategorize vaccination from being mandatory to one that is routine and optional.

People, however, continue to suffer from side effects caused by inoculation.

Statistics compiled by the health ministry show that 38 infants have died after being inoculated with the Haemophilus influenzae type B or streptococcus pneumoniae vaccines since 2011. And the health ministry has received more than 2,000 complaints of side effects from the human papillomavirus vaccine that is designed to prevent cervical cancer.

Parents, sadly, are caught between a rock and a hard place.

“The people I’ve met thought they were doing the right thing by getting their children vaccinated and now regret that decision forever,” says Masako Koga, who used to represent the Consumers Union of Japan. “There is no knowing who will suffer side effects as a result of vaccination. … (Proponents of vaccination) say the chance of suffering a side effect is 1 in a million. For parents, however, that one is everything.”

Koga, who has a son in his late 20s, says vaccinations used to start when children were around 2 years old. These days, however, infants get their first shot at around 2 months old and will usually receive at least 10 before their first birthday.

“Vaccination is different from medicine in that it intervenes unnaturally and puts viruses into a person’s body so that they build antibodies against certain diseases on their own,” Koga says. “Infants, however, have an immune system that is not fully developing, and so we should ensure it’s safe to put so many pathogenic germs into their bodies before doing so.”

Mori and Koga are concerned about the rapidly growing vaccination market. According to the Japanese Association of Vaccine Industries, the estimated value of domestic production totaled ¥41.8 billion in 1995 but shot up to ¥273.9 billion in 2012.

“Vaccines should only be given to those who need them but that is not happening. The global industry is being driven by a strategy that promotes VPD. We must put a stop to it,” says Koga, who currently works for Consumer Net Japan, an independent information network. “Vaccines have close ties to money. From development to circulation to research on side effects, there are a lot of vested interests involved.”

Proponents of vaccination have long argued that there is a wide “vaccine gap” between Japan and other Western countries and that Japan needs to catch up to the rest of the world.

According to a 2011 document compiled by the late Hitoshi Kamiya, honorary director of National Mie Hospital and an expert in vaccination, there is a 20-year period from the late 1980s when virtually no vaccine was approved in Japan. In that same period, the U.S. approved numerous vaccines, including inoculations to prevent chickenpox, streptococcus pneumoniae and human papillomavirus.

Now, however, Japan is slowly making up for lost time.

Tetsuo Nakayama, dean of Kitasato University’s Graduate School of Infection Control Sciences, says Japan has caught up in the sense that it has basically approved all of the necessary vaccines that are currently on the market.

Then again, he says there is not enough information provided on how vaccines have helped people over the years. Vaccination experts all agreed that the media coverage tends to focus on the dangerous side effects of inoculation rather than the positive aspects.

“There is an education gap and children are generally healthy because they have been protected by a vaccination,” Nakayama says. “However, many mothers nowadays hear about the dangers surrounding vaccination. They hear about how poisonous they are and are then unsure about whether to get their children inoculated or not. We need to fill the gap in education … because people also need to be educated about the danger of not vaccinating a child.”

Nakayama says 1 in 1,000 people who catch measles develop encephalitis, and around 30 percent of these people die or suffer severe complications afterward.

Meanwhile, 1 in a million people are estimated to develop encephalitis from a severe allergic reaction that may be related to the vaccine, he says.

“There is no guarantee that your child will not be that one out of 1,000. You have to compare the risks between the side effects and what will happen if you are infected with the disease naturally,” Nakayama says. “Under the existing law, the decision to vaccinate your child or not is basically left up to the parents, but there is not enough information out there for them to make an informed decision.”

Kawabe and her two daughters will be carriers of the hepatitis B virus for life, while her son has been diagnosed with chronic hepatitis B. She says she will have to warn her son about getting into fights that might lead to bleeding. She will also advise her children to ensure their partners are vaccinated and tell her daughters to seek proper medical care if they wish to have children so that they will be protected from maternal transmission.

“If I had known hepatitis B was something that children could contract, I would have had them vaccinated,” Kawabe says. “There is nothing we can do now.”

‘Scheduling vaccinations is notoriously difficult’

For new parents, the first year is always the hardest. From changing your baby’s first diaper to round-the-clock feeding, everything is a new and challenging experience.

On top of all the everyday stuff, parents soon discover there is a long list of vaccinations recommended by doctors that start at an extremely early age. It is recommended that infants receive vaccines for streptococcus pneumoniae, Haemophilus influenzae type B, rotavirus and hepatitis B at 2 months old. These are followed by vaccines for diphtheria, whooping cough, tetanus, polio, tuberculosis, measles, rubella, mumps, chickenpox and Japanese encephalitis.

“I didn’t realize that so many vaccines were necessary,” says Noriko Miyamoto, a 43-year-old mother of a 4-month-old girl. “I had to look for information to study why all of these vaccines were necessary. I also talked to my daughter’s pediatrician and came to the conclusion that I would get her vaccinated to protect her.”

Compounding the problem, most vaccines need to be given a number of times, with a certain period of time required between shots. And then there are booster shots that are recommended as the child grows older. To help parents manage their scheduling, developers have created a number of smartphone applications. Know VPD, Protect Our Children, a nonprofit organization established in 2008, created an app called Vaccine Scheduler in December 2011.

About 10,000 people download Vaccine Scheduler onto their smartphones every month, and in total 400,000 people have downloaded the app so far, according to the organization. “We knew that scheduling vaccinations is notoriously difficult and inconvenient, but we didn’t think it would get such a big response,” says Know VPD, Protect Our Children’s Asako Nakai. “It shows that many mothers are trying to manage the schedule properly.”

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