Diagnosis Leads to More Fulfilling Life

Jan 01, 1970

Seventeen years after being diagnosed with HIV, AIDS Clinical Trials Group Community Scientific Subcommittee (ACTG CSS) Co-Chair Eric Lawrence reflects on his life and realizes that having the virus actually put his life on a more fulfilling path.

“My wife and I were living in Los Angeles (California, USA) and I owned my own business and she was director of property management at LAX (Los Angeles International Airport),” Lawrence says. “We were living a very superficial life and then that all changed in the mid-1990s.”

The 1994 earthquake destroyed Lawrence’s home, and later that year, his business closed. He began to feel rundown and tired. He thought the stress of looking for a job and dealing with the loss of his property were the cause. In 1996, he went to the doctor and was diagnosed with Pneumocystis pneumonia (PCP), the most common opportunistic infection of people living with HIV/AIDS. Lawrence was stunned.

“We moved to Red Bud, Illinois, to be closer to my brother, and it was quite a change from LA,” Lawrence, who is originally from New York City, remembers. “The town’s population was 3,000 and I was living in a mobile home park called Fuzzyland. My wife went from working at LAX to stocking shelves at Walmart. Her support was so important because she never let me believe I would die and that gave me the will to live. I slowly began to rebuild my life.”

Red Bud is 30 miles southeast of St. Louis, Missouri. The director of the healthcare center where Lawrence was receiving medical care encouraged him to get involved with HIV/AIDS advocacy groups in the area. And then Lawrence met a woman who introduced him to the ACTG.

“My doctor knew I could put my big New York mouth and my background in public relations to good use,” says Lawrence. “I then met Sharon Maxwell at a retreat and she told me to ‘get off my butt and do something important.’ She’s been one of my best friends ever since.”

Lawrence joined the ACTG’s Washington University St. Louis site’s Community Advisory Board (CAB) in 1997. Maxwell was already a member.

“Many people who are diagnosed with HIV/AIDS think their lives are over,” says Maxwell, Co-Chair of the ACTG’s Global Community Advisory Board (GCAB). “Then you have people like Eric who redefine themselves and go on to have very rewarding lives helping others. He is a true advocate and a dear friend.”

The CABs meet monthly at each ACTG site around the world and members can then apply for one of 28 spots on the CSS. CSS representatives participate in the development of all of the ACTG’s studies as well as serve on the Network’s working groups and resource committees. In addition to formally applying, CSS applicants are interviewed and then voted on by the current representatives. Lawrence says interest in the CSS is strong and he encourages people to reapply as there is a waitlist to become a rep. He applied and served two four-year terms until December 2008. During his tenure, he served on the Patient Care Committee, on the CSS as Co-Chair and on the New Members Subcommittee as Co-Chair.

“CSS representatives work hand in hand with the ACTG’s site staff and clinicians,” Lawrence recalls. “My good-bye party was incredibly emotional. I felt a tremendous sense of loss at the thought of not being on the next conference call and not doing this work with this amazing group of people who had become my family and confidants.”

Lawrence and his wife then moved to Chicago and he became involved with the ACTG’s sites at Northwestern University and Rush University Medical Center. He was re-elected for a third four-year term to the CSS in October 2011 and currently serves as Co-Chair along with Stanford Chimutimunzeve from the ACTG’s site in Harare, Zimbabwe.

“I come from a communications background and I was not a heavy science person,” Lawrence says. “I make sure people communicate with community and scientists. That’s our job as co-chairs.”

Lawrence also feels an obligation to serve with the ACTG and with other organizations like the AIDS Foundation of Chicago and the Alliance of Sound AIDS Policy (ASAP) as a way of carrying the torch for those people who have lost their fight with AIDS, but who paved the way for advocates like him to move seamlessly from diagnosis to antiretroviral therapy (ART).

“Four months before I tested positive in 1996, the protease inhibitor Crixivan was released,” Lawrence says as tears begin to well in his eyes. “I am here today because of those people who died and worked for us. Our lives have been saved and we are all here today because of this cooperative effort.”

“I used to have to take 52 pills a day and now I am down to six with little to no side effects,” Lawrence continues. “That is the beauty of advocacy and of science. It boils down to that. That is why I am here. The ACTG’s community members and scientists work together like a streamlined train.”

During this CSS term, Lawrence would like to see a cure, a functional cure and further investigation into other health conditions people living with HIV face, like inflammation. He is proud to be a partner in this ongoing research and he will never forget how his journey with HIV has brought him to a place and into the lives of people he and his wife would never have known otherwise.

“We are much happier now than we were before I was diagnosed,” Lawrence says. “This forced us to prioritize our lives and really focus on what is important in life. We are now much more compassionate and loving people.”