Creating a Safe Haven for Youth with HIV

Published: July 4, 2005

by: Julie Garfield

Campers at a Lighthouse
Young people infected by the HIV/AIDS virus tend to have a lot on their plates. On top of the typical struggles of childhood and adolescence, they spend a lot of time in and out of doctor’s offices, taking medications, trying to avoid getting sick, and fighting off illness when they do succumb. School absences pile up, and energy flags. Issues of disclosure add even more stress and isolation—those who keep their HIV status private are forced to construct a false façade, while those who are open about their condition often face hostility or fear fueled by ignorance.

So a place where they can let their guard down and enjoy themselves in a natural setting, surrounded by others who face the same issues and by supportive adults who are not afraid of their disease, is a rare gift.

That’s the goal of The Safe Haven Project, founded by David Butler in 1993. Safe Haven operates two one-week camp sessions for kids aged 7 to 17 who are HIV-positive. (As of the end of 2003, the CDC estimated that approximately 16,366 people under the age of 25 were living with HIV/AIDS, and that about 3,232 of them were under the age of 15) The April camp takes place on the island of Martha’s Vineyard in Massachusetts, while the August session is set in the mountains near Frederick, Maryland. At Safe Haven, campers get a chance to step away from feelings of difference, and into an environment where the social stigma of HIV/AIDS is lifted.

While the two locations offer different experiences, "...the bottom line is fun and skill-building," explains Butler. From arts and crafts, to chores, to swimming, and eating all together cafeteria-style, Camp Safe Haven, like most camps, provides campers with a relaxed and fun environment.

In the wake of Ryan White

In some ways, the Safe Haven Project is one of the legacies of Ryan White. Just three years after AIDS was first recognized as a disease in 1981, 13-year-old White was diagnosed with HIV, which he contracted during treatment for his hemophilia. At a time when fear and ignorance of the illness was near-universal, White faced harassment and discrimination in his hometown of Kokomo, Indiana. Considered a health risk to his fellow students, the public school board expelled White from his high school. While he was eventually re-admitted, the obscene graffiti on his locker, the name-calling, and the bullet shot through his window eventually drove White and his family to move away.

Campers and Counselors on Bus
At the time, David Butler was working as a high school teacher. He found inspiration from White’s story—both because of Ryan’s resilience in the face of discrimination, and because of its conclusion: After the White family moved from Kokomo, the family was accepted warmly in neighboring Cicero, Indiana. In the words of White, “I'm just one of the kids, and all because the students at Hamilton Heights High School listened to the facts, educated their parents and themselves, and believed in me.”

Butler saw Cicero as a model for the rest of the country, and created Safe Haven with the goal of improving the lives of children with HIV at both an individual and societal level. Together, Butler and Lombardi created a camp that would give youth with HIV the experience of being in a supportive community.

Before his death in 1990, White devoted his life to speaking out against the ignorance that caused him so much pain. In his footsteps, Safe Haven launched Speak Out, a program where teens with HIV share the stories of their experiences with the virus and open up discussions with school students across the country.

The Un-Therapy

From what was once a mysterious illness associated with homosexuality to what is now recognized as a world-wide pandemic, the face of HIV has changed since the time of Ryan White. But discrimination still exists. While some of the campers have been able to be open about their illness, some still keep it a secret. Still others have disclosed their illness and gotten burned. "HIV is still a secret with very few exceptions," explained Co- Director Tony Lombardi. "They don't want people to know for fear of being judged or rejected."

As recently as 2003, a camper from a southern state who had kept her illness a secret lost her job and many friends after a family member disclosed her illness to the community. Even in urban areas, where HIV/AIDS is more prevalent, intolerance runs rampant, “The social stigma still exists, people are just a lot quieter about it,” says Lombardi.

At camp Safe Haven, campers get to experience a stigma-free environment. At the Martha’s Vineyard camp a strong community is created from the outside in: dozens of local individuals and organizations devote their time, energy, and resources to this week-long camp. Contributors donate anything from turkey dinners to hip-hop dance lessons to art supplies, and most importantly, help create a supportive and loving community.

For the summer session in Maryland, the wooded mountain location offers an experience more like the classic camp of capture the flag, ‘smores and mosquitoes. For kids who seldom get the chance to have mainstream life experience, activities such as sports games, chores, swim time, and the occasional trip to the mini-golf course are a kind of therapy in themselves.

“In order to bring them normalcy, we don’t schedule in times for therapy,” said Butler. Instead, campers can chose from a number of trained counselors, nurses, or even local therapists if they so choose. Like any camp, problems arise on a daily basis, but they are not the run-of-the-mill bouts of homesickness that plague most camps. “Sometimes they need to talk because mom or dad or somebody they know from the clinic is passing away, or some of them want to talk about their medication,” explained Butler. With a camper-counselor ratio of two to one, there is always someone who can take the time out to talk.

Putting the Safety in the Haven

Efforts to create an atmosphere of relaxing normalcy take place against a backdrop of vigilant attention to campers’ health status. The camp has a medical coordinator who works with a local general practitioner, and a team of registered nurses. Members of the camp staff are in close contact with local hospitals.

There are always at least two nurses on duty, around the clock. Camp staff members are trained to be sensitive to the health status and medicine regimen of each camper, and are vigilant about making sure that campers take their medicines on time. "When someone starts to look a little off, they go right to the nurses’ station," said Lombardi, "Because of the nature of the virus, the flu can turn into pneumonia in one day."

And when this happens, explained Lombardi, no one makes a big deal about it. A converted recreational vehicle, Safe Haven's medical facility looks nothing like the average clinic, "The nurses don't look like nurses, and the medical place doesn't look like a clinic. We want to give campers a different perspective on medical professionals. We want campers to see them as people," said Lombardi.

Moving Forward

Over the years, med-mobile traffic patterns have changed dramatically. Whereas campers used to be knocking on the door up to 8 times a day for medication, recalls Butler, now many of them only have to take 3 or 4 daily doses. And many of the new medications have fewer side effects, "It makes things much easier when you don't have a bunch of campers running around with diarrhea," exclaimed Butler.

Most importantly, newer treatments have dramatically lengthened life for youth with HIV. Butler and Lombardi commented on the drastic drop in the number of camper deaths/fatalities. "We used to go to three or four funerals a year," said Butler. As a result, Safe Haven's "waiting lists are a lot longer because not as many kids are dying."

Safe Haven doesn’t charge campers to attend, but the cost is approximately $1,000 per kid, or a total of $30,000 per session. Most of the money comes from private donations. It’s always just enough to "go from camp to camp wondering if there will be another," lamented Lombardi.

"It would be great to go out of business," says Lombardi. However, he’s not too optimistic; the CDC estimates that about half of all new HIV infections occur in people under the age of 25. So while a lag in demand is no where in sight, the fundraising must go on, and the Safe Haven Project will continue to create a community that fights against the virus, not the victims.

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Julie Garfield is recent graduate of the George Washington University and an intern at Connect for Kids.


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