James Breinig paced the floor of an office at the Mazzoni Center in Washington West. Like a prisoner awaiting execution, Breinig’s uneasiness showed on his pale face. It was November 2, 2010, the same day as the Senate elections. When the tester came out, he seemed winded.
“James, your result turns out to be positive,” said the tester.
Breinig froze like a statute, and a single tear slowly trickled down his cheek. He had known it was coming, but the moment when the tester announced the result still struck him hard and deep. As if in a nightmare, he wanted to speak but could not squeeze any words out.
He left the office like a zombie, numb and spiritless, and on reaching his car, finally collapsed into a total emotional breakdown. His tears flowed in a torrent, and his entire body spasmed like a tree in hurricane. Many ideas went through his head, but more than anything he suddenly felt immense remorse.
“I spent the rest of the day wondering what I was going to do and how I was going to get help,” said Breinig. “I couldn’t even be sure if I would be alive six months from then, and it was really tough.”
HIV, Philadelphia and Gay Men
While HIV has been plaguing the world in its fourth decade, the pace of transmission is not slowing down. While modern medical technology has made it a “controllable chronicle disease,” society is also witnessing a declining awareness toward the danger that HIV can impose on us.
Unfortunately, Philadelphia is among the national leader of new HIV infected cases. According to Philadelphia’s AIDS Activities Coordinating Office, over 19,000 people are living with HIV in Philadelphia and male-to-male sexual contact still accounts for more than 40 percent of all the new cases. Besides, men between 25 to 44 accounts for more than 40 percent of the newly diagnosed cases.
It’s clear that while new medication is prolonging the lives of people living with HIV, people have also seemed to become complacent toward the issue. While we might still try to recollect the terror that people used to experience back in 1980s, the virus has sneaked its way back into society.
Most of the media outlets choose to focus on new medication rather than the dark side of this epidemic. As the virus is ravaging the gay community once more, the lack of attention and awareness becomes a potential cause for its revival among gay men in Philadelphia.
Turning Crisis into Opportunity
Collin Rossi was just like any other young person in their 20s, getting ready to embark a whole new chapter of his life and enjoying working at his first job. He had been making the most out of his life by living abroad in Ireland and Japan during his college years, and he still had a dream of teaching English in Japan when the opportunity arose.
He did not know that all this would change in a day in November, 2008, when he was tested HIV positive at a hospital in Newbrunswick, N.J.
Rossi raced along the highway at over 80 miles an hour and gave no thought to how many tickets he might get. When he got home his mom tried to hug him as usual.
“How was it?” she asked warmly.
Suddenly, he became overwhelmed by a sense of disgust. He did not want her to touch him because he had developed a feeling he was contagious.
“Don’t touch me,” said Rossi desperately, “I need to get ready for work.”
He rushed into the bathroom and closed the door. Alone in the bathroom he once again broke down. This time he felt so weak he sat on the floor. He did not know how his mom would react when he told her that he was HIV positive. It was too much to even imagine. He turned on the shower and let water run down his body, but he felt helpless to cleanse himself of his “dirty” and “contagious” disease. He got out of the shower to go to work. He tried to turn on the ignition of the car, but again lacked the strength to even turn the key.
He decided to take the day off and stay home to get himself together. He called his sister because he knew she was the only person he could share his status with right away. She came round to see him carrying a huge folder full of papers.
“What is this?” asked Rossi puzzled.
“Here’s all the information I can find about HIV. I just want us to go through it to see where to look for help,” said his sister.
He knew she would be the person that was always there for him when he needed. It had always been this way. They flipped through all the pages and found information introducing the Mazzoni Center. They decided to go there to seek some “real” help.
He arrived there the next morning before the door was even open, accompanied by his mother and sister. It was cold and windy so the receptionist welcomed them into the office to wait. Rossi immediately realized that she was a transgender woman, which somehow soothed his nerves as he thought: “Well, if she works here, there’s no way that I am going to be treated poorly.”
After a while, the doctor walked out and invited them into his treatment room. Rather than reeling off a long list of syndromes and names he instead began by focusing on comforting Rossi, as well as his sister and mother. Rossi felt he had finally found somebody he could trust and knew he was going to be fine.
“This doesn’t mean you are going to die,” the doctor said firmly, Rossi recalls. “This doesn’t mean that you are going to have a short life.”
“That’s all I needed to hear,” said his mom, emotionally breaking down upon hearing the doctor utter these words. “I just need to know that my son is not going to die.”
Rossi said the doctor then gave complete answers to all their questions. To this day, Rossi still believes that his sister played most important part in his process of dealing with HIV. Had it not been for the piles of information she organized, he might never have come to the Mazzoni Center.
He returned to work the following week, but the tense feeling kept returning. While his family were supportive, he had not yet told his colleagues and boss, and was not sure how they would react. He went to work and tried not to engage in too much conversation with anyone. He knew he was not yet ready to share his new situation with any of his colleagues, yet his awkward behavior was making his boss concerned.
“You are behaving really weird right now and I need to know what’s going on,” said his boss one day during lunch break. “We have work to do and I don’t know what’s wrong with you. I don’t even know how to react around you. It really worries me.”
Rossi realized he could not continue to keep his secret and so decided to tell her.
“I was given an HIV test three weeks ago and it came back positive,” said Rossi calmly. He tried his best, but still could not utter the phrase: “I have HIV.”
From then on, he gradually became more accepting that being HIV positive had become part of his life. He came to believe that HIV did not need to define who he was, and was simply something he was living with.
A Safe Harbor for People Living with HIV in Philadelphia
Liza Linder walked into Mazzoni Center’s office on 12th and Chestnut street on a gloomy Saturday evening. It might have seemed unusual for anybody to walk into their office at this time of the week, but for Linder, it’s part of her routine. She turned on the light in her office, and opened up Pandora to let the music fill up the quiet office.
Linder has been working at Mazzoni Center for almost eight years now. According to her, the biggest achievement to her was that she single handedly founded the first support group for people living with HIV in the LGBT community in Philadelphia six years ago.
“I grew up in Manhattan as a teenager in the 80s, and I remember very clearly, I’ll never forget, walking around the streets in Manhattan and saw those beautiful young man,” said Linder with an amused face. “I always have a thought that they are not going to be here very long, and that was a sad thought, obviously, and that’s when the whole world was just learning what HIV was.”
She never thought that one day HIV will become a huge part of her job, and how much she would do for people living with the virus, which was considered a “death sentence” just two decades ago.
Linder’s life made a completely turn when she decided to give Mazzoni Center a shot and interviewed for a job of HIV counselor six years ago. She graduated from her M.S. program at the University of Pennsylvania and worked briefly at a local counseling center that has nothing to do with LGBT or HIV. She heard of Mazzoni Center briefly after she quit her first job.
“When I heard of it, I was like ‘this sounds good, but didn’t know much about it.’,” said Linder smilingly. “I came here for interview, and the moment I went into the lobby of the building, I thought to myself ‘I’m home, I’m home.’”
She felt a sense of familiarity that she never had in schools, clubs or camps. She’s never felt at home until she got to Mazzoni. Luckily, she got the job afterwards and has been loving her job ever since, with tremendous amount of passion and energy.
The thought of founding a support group immediately went into her mind. She saw the need for an LGBT oriented support group for people living with HIV. With her extensive experiences dealing with LGBT issues, she understood that HIV is a highly sensitive issue that requires special attention. She went to her supervisor and threw out the idea of running a support group for people living with HIV. Without too much confrontation, her idea got accepted and that became one major part of her career, one that truly made her love her job even more than before.
“I wanted that because I felt like, we are all people obviously, there are obvious differences,” said Linder. “I feel that folks would be more comfortable, and I’ve also heard from folks who have gone to other support groups that were either straight or mixed groups. They just didn’t feel as comfortable.”
However, the group got off to a rough start because of its mini-size. The small number of participants made the planning process harder than Linder thought. She experimented multiple methods to get everyone involved while keeping it interesting. While the goal of the group was for participants to share their feelings and seek solutions to their problems, Linder also emphasized the emotional support that she saw the group could provide for participants.
“I started to invite guest speakers, usually their doctors, pharmacists or our on staff art therapist to come to the group,” said Linder. “These days, it kind of runs itself. There has been a large friendship network established and I don’t have to do that much. My primary function now is to introduce new folks at the start of the night and open floor to see if anyone has anything they want to try to answer.”
Tuesday had become the happiest day of the week for Linder ever since, even though she would often have to get home much later than usual. However, all that lateness won’t matter when it comes to sharing her time with her group members.
“Running the group is the biggest joy of my week here, probably my life actually,” said Linder, with tons of excitement. “I look so forward to it every Tuesday. Every Tuesday night I couldn’t sleep because I was so juzzed up by the group that we had.”
A Life-Long Transition through Peer Support
Nothing could really bother Ryan Ruggiero for more than three days, but this time, he was locked in a deep and long depression, not knowing where the exit might be. His HIV result had clouded his world for days, simply because he never expected himself to be HIV positive. Like a lonely sheep in a storm, Ruggiero was looking for a long term shelter.
Several days after knowing his HIV status, Ruggiero became bothered by the thought of how to let his family know. He knew that his mom would be open-minded about it and so decided to call her directly. As expected, she was not emotional. She simply told him, “You are going to be fine,” then carried straight on: “Let me tell you about this wedding I did last night.”
However, the biggest obstacle in the process was his father. His father was a typical traditional Italian father, serious and conservative. Although he had accepted his gay son, the idea that his son was HIV positive might still be a shock to him. Ruggiero knew that if he told his father directly, they might never be father and son again. He did not want to hurt his feelings and also did not want him to immediately respond with morbid thoughts, such as: “Oh my god, my son is going to die.”
After going to the Mazzoni Center for a while, Ruggiero learned about the support group for people living with HIV at the Mazzoni Center every Tuesday night. He decided to start attending these meetings. His first time, he took the elevator up and suffered the uncomfortable feeling of being stared at by a group of guys when he walked into the room. Feeling the uneasiness in the room, Ruggiero decided to break the ice and greeted each person in the room with a warm hug and hello.
Then a red haired woman walked into the room and asked, “who’s our newcomer today?”
Ruggiero raised his hand and the woman told him to give a brief self-introduction. After introducing himself as instructed he answered some questions about things he had not covered in his self-introduction. That was when other people in the room started to open up to him and the interaction began to heat up. The other attendees all exchanged numbers with Ruggiero at the end of the meeting and the support group thus became another useful support organ for him.
However, Ruggiero still could not open up to his father about his status. He felt like he was lying to his father. Usually they would have dinner together on Tuesday nights, but after he started going to the support group, he had to make up stories to refuse his father’s dinner invitations.
“I just felt like I was lying to him because I was actually going to the support group,” said Ruggiero. “I felt guilty for not being able to share with him such a big part of my new life.”
Six months after he was tested, Ruggiero finally told his father one night after dinner. As he predicted, his father was emotional, but the reaction was not as dramatic as it could have been. Ruggiero knew that he had to ensure his personal health before revealing his status to his father.
“Telling my father was my turning point, and after that my parents became completely supportive,” said Ruggiero. “They always asked me how my blood work had come back, and they even wanted to meet my doctor.”
What have We known about HIV?
Linder may have reached a milestone by creating the first LGBT oriented support group for people living with HIV in Philadelphia, but the battle against HIV is far from the finish-line.
She points out that there are signs that HIV is re-plaguing the LGBT community due to the popularity of hook-up mobile app and website like Grindr and Bareback Realtime. These two interactive hook-up tools have presented tremendous challenges to the efforts that have been put into the fight against HIV.
Grindr became the most popular mobile app for gay men since it came out two years ago. It’s interactive feature of connecting anyone with people that are using Grindr to look for hook-up, regular meet-up or just chatting within as close as your neighbors. Whereas Bareback Realtime is an online platform for gay men that are pursuing sex without condom. They can simply set up an online profile and start searching for other gay men in their area who are also interested in having bareback sex.
“I have friends who are on Grindr and hook up all the time, but they never bareback,” said Linder, with a serious expression on her face. “While Bareback Realtime is more like a bathhouse, where people assume that you are already positive if you are on there.”
While witnessing a complacent trend of pursuing bareback sex in the HIV positive community, Linder tries hard to explain the lethal threat such behavior could bring to them and their potential partner. However, it seems the community has gradually become paralyzed by the effectiveness of medication.
Some folks “are often like, ‘oh well, if I become positive, it will kind of be cool because I can have sex with people without condom again,’” said Linder. “That’s really bad health practices because you can get another STD. The combination of HIV with another STD can be really bad because your immune system is already damaged and now you’ve added another virus. Those things can be especially dangerous to folks with compromised immune system.”
An All-Around Support
On his way home, the thought of the need to share his status preyed on Breinig’s mind like a serpent. He felt an impulse to pick up the phone and call his mom. However, he knew he was not ready simply because the thought of how she might react was still terrifying. He never thought that his status would be disclosed by the person that he thought would be the most supportive.
“The person that I was with at the time disclosed my status to a few of my family members before I could tell them,” said Breinig. “That certainly made it a little bit harder, but also a little bit easier since it meant a few less people that I needed to sit down with.”
It turned out that his mom was the one that found it most difficult to accept her son’s HIV positive status. He received a phone call from her three days after his diagnosis, but that he had to wait until she calmed down before they actually met face to face.
However, the situation did not get any better from there. He remained trapped in depression and was close to giving up on himself completely – for example he stopped paying bills and locked himself in his room for days. Then came the hardest moment in his life.
A few days after he was diagnosed, Breinig received a notification telling him that his car would soon be repossessed. A group of guys came at 3:00 a.m. and took his car away.
He could do nothing but saw everything in his life gradually slipping away from him. At that moment, he felt his entire world was crumbling like a sandcastle exposed to the incoming tide . He felt like there was nothing to look forward to in life because he had now lost everything. But he then looked back at the pictures on the wall and realized that life couldn’t get any worse than it was at that moment.
Three weeks after he was diagnosed, he finally decided to gather himself, walk to the phone, and dial the number the tester had given him weeks ago. Self pity had been replaced by a desire for help. “Hello, Mazzoni Center, How may I help you,” said a lady from the phone. Again, he broke down as the conversation got into details, but the counselor quickly calmed him down and arranged an appointment for the very next day.
After the first appointment with his counselor, Breinig decided to attend the HIV support group at the Mazzoni Center. The first time he walked into the room felt like returning to his first day at school, surrounded by numerous pairs of eyes. A sense of unease he had not felt in a long time suddenly returned. But he kept telling himself that this could probably turn his shattered life around.
“The people at the support group have absolutely saved my life,” said Breinig. “They picked me back up and helped me realize that I can manage this path by turning it into something positive.”
After making the support group a weekly routine, Breinig gradually realized how much he had missed previously. His knowledge of HIV slowly grew, like the savings in a bank account. The paranoia he felt when first diagnosed slowly subsided. He realized that with advances in medical science HIV was not as lethal as it used to be.
“Now, I take one pill a day and that makes me become what they called ‘undetectable,’” said Breinig. “Medical breakthroughs have also made the possibility of transmitting to someone else almost zero.”
Medication, Vaccine and a Potential Cure for HIV?
Ron Collman has been dealing with HIV throughout his career for more than three decades now. He started his clinical training as a physician at the time when HIV epidemic was just exploding.
“I looked around and thought about ‘what can I do to contribute to this explosive epidemic?’” said Collman, trying to recall that initial passion that brought him into the field of HIV/AIDS research.
While there have been a lot of talks about the possibility of creating a cure and effective vaccine to end the epidemic, Collman holds a more conservative opinion about that “glorious” future. He said that currently, only less than 20 percent of people living with HIV are fully suppressed in treatment and are aware of the importance of receiving treatment consistently. To him, it isn’t that much of a treatment barrier, but more of a social barrier that’s preventing the progress in our combat against HIV.
“The big thing is that there isn’t the fear there used to be,” said Collman. “There’s an underlying reality that caused the change of mentality. The virus doesn’t carry the same fear that it once did and that has made people become complacent toward the threat that it can still impose on their health.”
According to Collman, several groups around the country are now dedicated to developing a cure and effective vaccine for HIV. While these methods are usually too expensive to roll up to the broad scale, these groups are working out ways to make these potential treatments more feasible to the general public.
“I think more work needs to be done on figuring out why in fact most people with HIV aren’t fully suppressed,” said Collman. “I do think it’s possible that we will have a highly effective vaccine and cure for HIV in the future, but I’m not sure when will that actually happen.”
Make Friends with Your “Enemy”
Becoming HIV positive didn’t prevent Rossi from continuing his life, on the contrary, he was desperately searching a lifestyle that could push him back on track. He decided to join a teaching program and become a teacher.
However, anxiety returned to him when he realized he might lose his health insurance. The first month after getting his medication, he looked closely to the receipt and found out that, with insurance, he needed to pay only $30 each month, but without insurance the same medicine might cost him up to $2000 a month.
This huge gap made him realize the importance of maintaining his health coverage.
“There’s just no way that I can afford $2000 dollars for one month’s supply of medication,” said Rossi emotionally. “When deciding to go into the program, I knew that there would be a time when I was without health coverage. The whole idea of preexisting condition is like a neon light constantly flashing in the back of my head and reminding me, ‘I have to maintain coverage, I have to maintain coverage.’”
While dealing with the ever reducing pressure of living with HIV, Rossi decided to take it one step further to conquer his personal fear toward the condition.
He started his M.P.H. program at Arcadia University and specifically focused his research on populations living with HIV. To him, this research not only is personally meaningful, but will also allow him to fulfill his dream of giving back to the community to which he belongs.
“It’s scary to learn that recent studies show that people still think you can transmit HIV through shaking someone’s hands or sharing a glass,” said Rossi while rolling his eyes in disbelief. “I would give anything to work with an organization like Mazzoni, and I want to help others the way they have helped me.”
HIV Prevention Golden Rule: Condom and Safe Sex
So what should the LGBT community do? The most significant thing to Linder is to always use condoms. While people might think it doesn’t apply to every community, Linder thinks that there’s always the potential danger of transmitting it to others, regardless of your sexuality.
Although she doesn’t believe that people can always remain sane and remember to use condoms, it’s still the most effective way to prevent HIV from spreading.
“We all make, I don’t want to say mistakes, but we all do things that put us at risk everyday,” said Linder laughingly. “I try to tell people that HIV isn’t something you want to get, and it isn’t a punishment for you even if you get it. It is something that can happen to anyone at anytime. While there are steps that you can take to prevent it from happening such as using condoms, but it’s also not a hundred percent.”
“Just Another Place for Networking”
As he started joining the support group on a regular basis, Ruggiero finally felt that his life was gradually back on track again. To Ruggiero, joining the support group was not completely about being emotionally attached to the group, but also about getting valuable information. While members relied heavily on the group to maintain their lives, Ruggiero also saw it as a social outlet.
“I have met a lot of good friends through it, and it’s fascinating to learn what these people have gone through,” said Ruggiero. “I’m a people person, but I don’t want to be needy.”
Thinking back on what he had done in the past, Ruggiero could not get over how risky his old lifestyle was. The biggest thing that hurt him though, was not becoming positive, but having contracted the disease from someone he knew.
“I found out a month after he learned his status,” said Ruggiero. “We slept together back in September, and we carried on hanging out after he learned of his status. He chose to hide it from me.”
Ruggiero’s life after becoming HIV positive remained just as fruitful as before, but he learned to take better care of his health. Supporting HIV related events also became part of his new life. However, he still refuses to let HIV define who he is.
“It’s a part of me but it does not define me,” said Ruggiero. “It’s sad if you let it become what defines you as a person.”
Learning Risk Management through HIV
Linder thinks that we all should know the significance of making the best decision we can. In addition, it’s necessary for people to understand that the only safe sex is having no sex, which is unhealthy as well. The most significant task is to find the balance between safe, happy sex life and understanding that there’s always going to be small risks.
“The risk is depending on what you are paying and doing,” said Linder. “It’s not about how smart you are, and you didn’t do it to yourself. It kind of just happened.”
Ultimately, Linder thinks that the world still need to learn the lesson that HIV is never a matter of race or sexuality. While it is called “Human Immune Deficiency Virus,” the most important word should be human. Linder emphasizes that it means anybody can be at risk. People should develop the knowledge that it affects the whole world since it’s a global pandemic.
“If you think you don’t know anyone living with HIV, you probably do,” said Linder. “Even if you don’t you are still affected. We all need to educate ourselves about it and know that people living with HIV are just regular folks. To end this stigma, we need to have more people stand up and speak like,‘I’m not a monster or someone that wants to hurt you.’”
William Yang is a Masters of Journalism student at Temple University.
Editor’s Note: Several references in this article have been updated since its original publication to reflect admissions of inaccuracies by the author, William Yang. We regret those errors.