Harold from Upstate New York

“I don’t like to go out,” Harold says. “People stare. Even the cashier at the grocery store. You can tell they’re trying to figure out what I am.”

Harold developed breasts in his early teens. Like many boys who took Risperdal, Harold had a difficult childhood. He lived with his grandmother for a while, and because of behavioral issues, he was sent to a group children’s home at the age of 12. That’s where he was first prescribed Risperdal -- to keep his outbursts in check.

While taking Risperdal, Harold gained significant weight very quickly. He also developed breasts, which he first attributed to the weight gain, but later felt that something else was happening to him. “There were other kids in my family that were overweight,” Harold says, “but they didn’t have what I have.”

Kids at school noticed as well, and for a while, Harold was the object of relentless bullying. “I learned to stand up for myself,” Harold says. “The bullying mostly stopped, but I never had many friends.”

As a young adult, Harold still only associates with a small group. “When I meet new people, I feel like I have to explain why I have breasts.” Harold recalls meeting a woman who had trouble believing his name. “She didn’t know if it was weirder for there to be a girl named ‘Harold’ or for there to be a boy with girl’s breasts.”

Recently, Harold saw a cosmetic surgeon about having his breasts removed. When he told the doctor that he is also hoping to lose weight, the doctor encouraged Harold to reach his goal before having surgery. If he lost weight after the surgery, the doctor explained, his chest would end up being deformed. Harold has to conquer one side effect of Risperdal before he can correct another. Harold scheduled gastric bypass surgery for the summer of 2017, and he hopes to have the breast reduction surgery later in the year.

Why a Growing Number of Boys Have to Decide Whether or Not to have Breast Removal Surgery

Besides causing boys to develop female breasts, the drug Risperdal can also cause massive weight gain -- up to 100 pounds in a year. When boys stop taking Risperdal, they can lose the weight, but the breasts remain, which often become deformed. The only way to remove the breasts is through a painful and costly surgery. While nearly every young man who suffers from gynecomastia caused by Risperdal dreams of a life without breasts, there are some complicating factors that keep many of the men from going under the knife.

The Cost of Surgery

The surgery can cost thousands and thousands of dollars, depending on a number of factors. Most insurance policies consider the procedure cosmetic and refuse to cover it, forcing families to pay out of their own pocket. Some families can afford the surgery, most cannot. Because Johnson & Johnson targeted clinics that served patients on Medicaid, many boys who took Risperdal come from lower income families.

Eddie from Oklahoma, who contributed to the “Risperdal Boys” photo project, was lucky that Oklahoma's SoonerCare covered his surgery. He had the operation as a teen and was able to recover some of his high school years without the teasing and bullying associated with gynecomastia.

Risperdal Boy Michael from Cleveland had to fight for months to get his insurance to cover the surgery, and the result was a “no-frills” surgery that left Michael with a disappointing result and simply added to his body image issues.

One of the young men we spoke with, who decided not to participate in the “Risperdal Boys” project, said his mother paid for the surgery with multiple credit cards. To save money, they opted to forgo general anesthesia, relying only on local. He was awake for the operation, and could sense all the pulling, cutting, and prodding.

Risperdal Boy Pedro from Tampa cannot rely on insurance and has no credit cards. He’s working and hopes to save enough to get the surgery one day. After paying living expenses and tuition, the surgery seems like a distant dream.

The Painful Recovery

Removing the breasts is not a simple surgery. It often involves significant incisions below the breasts to remove the tissue, and it frequently requires the nipples to be cut out and repositioned. Recovery is often long and painful.

One patient who opted not to participate in the project said he spent about two weeks with tubes in his armpits to accommodate drainage, and it was months before he regained feeling in his chest.

Laraina, mother of Risperdal Boy Isaiah from Flint says she's considered getting the surgery for her son, but she's not sure it would be worth the pain. Like many of the children who were prescribed Risperdal, Isaiah is autistic. Laraina and many other parents agree that the side effect of gynecomastia far outweighs what benefit, if any, they experienced from the drug.

Risperdal Boy Michael from Cleveland said the surgery and recovery was so difficult and painful, he's not sure he would opt to do it again -- especially since he wasn't satisfied with the result. Not all doctors are equally skilled at the cosmetic details of the surgery, leaving patients with scarred and deformed chests.

Because weight gain is a common side effect of taking Risperdal, many of the young men who hope to get surgery find their weight an obstacle to getting the surgery. Doctors frequently refuse to perform the surgery until the patient reaches a weight that they feel they are comfortable with. If the surgery is done first, as a patient loses weight, the chest can drop and become deformed, which is much more difficult to repair.

Complicated Self-Identity Issues

The Risperdal Boys were forced to deal with developing female breasts during their adolescent​ years. Being a teenager is hard enough on its own -- throw gynecomastia into the mix, and it can become a nightmare. Every Risperdal Boy dealt with the experience in his own way. Some retreated to their rooms. Some found an escape in video games. Virtually all experienced bullying.

Whatever defense mechanism a boy developed to deal with the ridicule, it had a big impact in shaping his personality. Some learned to stand up to bullies. Some have worked hard to try and accept their bodies. For others, gynecomastia has brought up gender identity issues. For good or for bad -- and mostly for bad -- gynecomastia has become central to the Risperdal Boy’s self identity.

Their breasts have become a part of who they are, and it can be scary giving up something that has become such a big part of your identity -- even if it's a part that you hate.

True Pain of Risperdal Side Effects Captured in New Photo Series

It's one thing to hear about a drug causes adolescent boys to develop female breasts. It's something else altogether to see it.

The drug in question is Risperdal. The condition is called gynecomastia, a side effect that Johnson & Johnson misrepresented while promoting the drug. In 2012, Johnson & Johnson paid the government a $2.2 billion fine for illegally marketing the antipsychotic to children. Now, more than 18,000 boys, many now young men, have filed claims against Johnson & Johnson. While there's been some press about the massive lawsuit, one thing is noticeably missing from the reports: photos of the victims.

 

This is understandable in light of how sensitive and embarrassing the condition is for the boys who have suffered. Nonetheless, this is a story that needs to be seen to be adequately understood.

It would take a special photographer to work with the young men and make them feel comfortable enough to have a stranger photograph their condition. That photographer turned out to be Richard Johnson.

Johnson received recognition for his “Weapon of Choice” project which provided a visual representation of the invisible pain caused by verbal abuse and bullying.

“In the ‘Weapon of Choice’ project, we asked people to confront the thing in their life that had caused them the most pain,” Johnson said. “As a result we were able to capture genuine anguish, and I think that's why people connected with the photos. We tried to do the same thing with the ‘Risperdal Boys’ project.”

For the “Weapon of Choice” project, participants signed up on Facebook​ and came to Johnson’s studio. For the Risperdal project, Johnson had to cooperate with lawyers to find young men who were even willing to consider participating​. The handful of young men who volunteered all lived hundreds of miles apart from one another.

“With some help from Google maps, we calculated routes and drive times,” Johnson said. The result was a travel plan that sent him on a six-day road trip that hit ten cities and covered four thousand miles in six days. “When we weren't shooting or sleeping,” he said, “we were driving.”

The trip took him to inner-city Detroit and to Indiana soy fields -- from a forgotten Oklahoma town to a college dorm in Cleveland. When marketing Risperdal, Johnson & Johnson disproportionately targeted clinics that treated patients on Medicaid, so the drug’s victims are disproportionately lower-income.

Johnson wanted the the photographs to work as a cohesive series, but that was a challenge because he couldn't control the circumstances of each shoot. To tackle this challenge, Johnson took three sets of photos for each subject: candids, posed shots in the natural environment, and shots in front of a backdrop with a single strobe.

“We only had a couple of hours with each subject, and we had to work where they were comfortable. Sometimes that meant shooting outside at sunset, and sometimes it meant shooting inside at midnight,” Johnson said. In post production he was able to make color corrections, and to the untrained eye, the final series looks like it may have all been shot in the same studio. The candids ended up providing a startling complement to the project.

At the end of the trip, Johnson wasn't sure if he'd be able to use any of the photos. “To get them to agree to the shoot, we promised that they'd have final say over whether any of the photos would ever be used. We didn't even talk about model release forms until we showed them the photos.” Only six of the ten candidates made it to the final project.

Of the young men who agreed to allow their pictures to be used, to a man, it was because they wanted the world to know what happened to them. Most of the young men in the project suffered alone; they've never met someone else with their condition. All agreed their struggle would be easier if they knew others were facing the same bullying and social isolation that they faced as a boy with breasts.

That's why Richard Johnson, the photographer, decided to make the photos free to anyone who wants to tell the story of the Risperdal Boys. “There are potentially tens of thousands more guys out there that don't know why they’ve developed breasts, and they don't realize how many others​ have similar stories.”

Despite the 2012 criminal fine and the thousands of pending lawsuits, Johnson & Johnson sold $800 million worth of Risperdal in 2016.

Risperdal and Weight Gain

Besides causing boys to develop female breasts, the drug Risperdal can also cause massive weight gain -- up to 100 pounds in a year. When boys stop taking Risperdal, they can lose the weight, but the breasts remain, which often become deformed. The only way to remove the breasts is through a painful and costly surgery.