Heart & Soul
Rob Quinn Opens His Heart, Searches His Soul, and Finds His Voice Advocating for Long-Term Survivors
by Chip Alfred

Photographed Exclusively for A&U by Erin Heffernan of Wheelock College

It was World AIDS Day 2010. Rob Quinn, who received assistance from the AIDS Foundation of Western Massachusetts, was asked to speak to local media at an event in Springfield. With TV cameras rolling, the man who had never done anything like this before stood up and introduced himself, “My name is Rob Quinn, and I’ve been HIV-positive for seventeen years.” As soon as those words were uttered, Quinn realized this was the watershed moment that would change his life.

“I was thrust in front of a camera in my home town and I had just disclosed my HIV status publicly for the first time to the whole world,” he reflects. “I knew at that point there was no turning back.” Quinn, fifty-seven, has been speaking out ever since to empower and support other long-term survivors (LTS) like himself. “I had been an unheard voice for so long. Now I could be a voice for the unheard.”

Quinn’s HIV journey began in 1993. At that time, he was a child life specialist in New York, working with pediatric AIDS patients. A seasoned runner in training for the New York City Marathon, Quinn noticed he was becoming easily fatigued. His doctor suggested he come in for an HIV test. When the results came back positive “it was very overwhelming,” Quinn recalls. “I was terrified. I was in my thirties, being told I had a life expectancy of six or seven years. I wondered if I would even see forty.” Quinn says at that moment, what he calls his OCD (Optimism, Confidence and Determination) kicked into overdrive. “I knew this wasn’t going to define who I was. I wasn’t going to be living with HV; HIV was going to be living with me,” he asserts. “I am going to control the outcome of this.” Quinn remembers his doctor telling him, “Robert, this is going to be a long journey with many hurdles to clear. And you will clear each one that comes your way.”

Naturally, the hurdles that Quinn would have to clear weren’t just about battling the virus. In 1999, he was diagnosed with AIDS and had to undergo chemotherapy for Kaposi’s sarcoma (KS). He went on short-term disability from his job, which then turned into long-term disability. “I wasn’t prepared for the impact of what that meant. All of a sudden I lost my professional identity, my sense of purpose.” With too much time on his hands, Quinn started frequenting New York’s underground club drug scene, and his world began to spiral out of control. “I went from being a social user to a weekend warrior to a full-blown addict.” Ketamine (Special K) and cocaine were his drugs of choice, until these habits became too expensive. “I transferred my additcion to alcohol because it was cheaper. I gained seventy pounds from drinking.” After 9/11, Quinn, struggling to cope with the AIDS diagnosis and his addictions, was losing hope. “I thought I was going to die. I wanted to be in a safe place, so I moved back home to Springfield.”

Quinn was seeing a nutritionist there, who stressed to him he needed to take accountability. On Valentine’s Day 2007, he hit rock bottom and took accountability—not just for his weight and his health, but for his life. He has been clean and sober ever since. His road to recovery led him to his signature guiding force, the R4 style, which stands for rock bottom x recovery x resilience x reinvention. The theory behind R4 is that obstacles can be overcome if you take them one step at a time. Once you clear one hurdle, you then move on to the next one, which is exponentially more challenging to clear than the previous one. “It was the positive outcome of that first experience of hitting rock bottom that made this my mantra,” Quinn explains. “I can make it over even the highest hurdle I encounter as I move forward on my journey.”

Once he got sober and found clarity, opportunities starting coming his way. In 2011, the AIDS Foundation of Western Massachusetts asked Quinn to join its Board of Trustees. “I became the face of the foundation,” he recalls. “Until we put a face to HIV, we’re never going to eliminate stigma.” The following year he launched his own website, OpenlyPOZ.com, to connect with his peers who are HIV positive. “I want to let them know they are not alone.” The response to the website has been overwhelmingly favorable. “I have heard from so many people living in isolation who don’t have access to support,” he tells A&U. I felt like I had a story to tell. If I could just inspire one other person, my life mission would be complete.” What’s unique about this online resource is that Quinn interacts with the site’s users one-on-one. “I have been able to have private conversations and meet some people in person to help connect them with peer support services, and engage them or re-engage them in care.”

Over the last few years, this man whose heart has gone out to so many others, has been having problems with his own. In 2014, Quinn was diagnosed with HIV-associated cardiomyopathy [A&U, August 2016]. At that point he relocated to Boston for more intensive medical care and support services, and to find an expert in cardiovascular medicine with HIV/AIDS experience. The move to Beantown also presented opportunities for Quinn to expand his advocacy on the state and national levels. Besides keeping busy with speaking engagements, Quinn serves on the Statewide Consumer Advisory Board at the Massachusetts Department of Public Health, Office of HIV/AIDS, as well as the Boston EMA Ryan White Planning Council. He also co-founded and facilitates two support groups, including one called Living Positive.

His public appearances involve helping people understand the often misunderstood LTS population. First and foremost, he emphasizes that long-term survivors shouldn’t be clumped together as part of the current focus on HIV and aging. “All LTS aren’t over fifty,” he remarks. “Some are in their twenties and thirties.” He also points out that not all older people living with HIV are LTS, with new diagnoses among individuals in their fifties or sixties. When he speaks to groups of LTS, Quinn’s message is clear. “We are a forgotten part of this community. We have to be bold and we need to be more visible.” This means ensuring LTS are included in research studies and planning discussions about the emerging needs of this population. “HIV prevention and care is not just about preventing new infections and achieving viral suppression. It’s about creating health equity for everyone including long-term survivors.”

Rob Quinn says his advocacy is what keeps him going. “It makes me want to get up every day and keep moving forward. It gives me a pulse; it makes me feel alive. And I will fight until my last breath if I have to for this cause.”

For more information about Rob Quinn, visit http://openlypoz.com.

Chip Alfred, Editor at Large, is the Director of Development & Communications at Philadelphia FIGHT.