From Loss to Legacy: A Mission to Close Healthcare Gaps for the LGBTQIA+ Community

Steve Drayton, a man living with HIV and a three-time cancer survivor, has dedicated the last 30 years of his life to supporting the health and well-being of the LGBTQIA+ community through education and advocacy.

“There are huge disparities in health care in the queer community. We don’t get the diagnoses or treatments as quickly because there are hurdles in our health care system where we may not get the right doctor, or the doctor may not be as sympathetic or knowledgeable,” said Steve.

It All Started with a Promise

In the 1990s, the HIV epidemic had been ongoing for more than a decade. The disease was devastating to the gay community, and Steve was all too familiar with its impacts. In 1994, at age 34, Steve was unknowingly living with HIV and received a Kaposi sarcoma (KS) diagnosis. KS is a cancer that develops from the cells that line lymph or blood vessels. It usually appears as tumors on the skin or on mucosal surfaces, such as inside the mouth, but KS tumors can also develop in other parts of the body as well. KS is considered an AIDS-defining illness. Steve’s KS diagnosis confirmed that his HIV had progressed to AIDS.

Steve and his best friend were both diagnosed with HIV and AIDS. Unlike Steve, his friend did not survive. Before he passed away, Steve made a promise to him, vowing to do everything in his power to make sure others didn’t have to go through the same suffering that his friend had.

Honoring his promise, Steve took action immediately. He started fundraising for HIV resources, became active in social and support groups, and taught safe sex classes in prisons to educate people on how to reduce the risk of HIV. He attributes his years of dedication and this lifelong journey of advocacy to his best friend.

A Bike Ride that Led to a Life-Saving Diagnosis 

Years later, in 1999, Steve met his husband Stephen (Phen). Supporting each other and the queer community became a foundational part of their relationship. With years spent advocating for those impacted by HIV and AIDS, ‘the Steves,’ as they are known by friends, saw an opportunity to expand their impact. Motivated by the number of friends and family affected by cancer, they found a shared love of bicycling and began riding to raise money for cancer research. 

It was in 2016 when one bike ride changed the course of their life. Participating in the American Cancer Society Bike-A-Thon, Steve and Phen rode all the way from Philadelphia, Pennsylvania to Ocean City, New Jersey. By the end of the ride, Steve was aware of two things—the Pulse nightclub shooting that took place the evening before in Orlando, Florida, and the feeling that told Steve something was wrong with his health.

“It was the morning after the Pulse massacre when I figured out that something was going on,” said Steve. He recognized that riding his bike felt more uncomfortable than usual. Even though he could have attributed the pain to riding his bike all day, he knew something was different. 

Following the race, Steve reported his symptoms to his doctor, who quickly scheduled a colonoscopy. In September of 2016, at age 56, he received a stage III rectal cancer diagnosis. “I wasn’t having any other symptoms, but just a little discomfort. I wouldn't have had the discomfort had I not been riding.” He feels fortunate that he was riding for an American Cancer Society event that day, which led him to eventually receive his rectal cancer diagnosis.

He received two months of chemotherapy and radiation treatments for rectal cancer. Steve put his trust in his care team and followed his treatment protocols. While his oncologists warned about painful side effects from treatment, he didn’t expect the high level of rectal pain he experienced during and after radiation treatments, and how easy it was to become dependent on pain medications. “The pain just didn’t stop,” Steve said. To relieve his discomfort, Steve worked with his care team and chose to have an ostomy procedure. An ostomy creates a new way for stool to leave the body when there are problems in the colon or rectum. The pain subsided, but Steve had to adjust to his new normal, permanently wearing an ostomy pouch.

In July 2018, Steve received his third cancer diagnosis. He was diagnosed with squamous cell skin cancer. Steve was treated with Mohs surgery, has had no recurrence, and visits his dermatologist annually for a skin exam.  

Advocacy & Resilience

Almost seven years after his skin cancer diagnosis and ten years after his rectal cancer diagnosis, Steve is living cancer free. He and Phen are nearing their 26-year anniversary, and they still have date night every Saturday. Although Steve can no longer ride a bike due to the effects of his treatments, he and Phen continue to advocate in their community by sharing their story and encouraging everyone to be aware of their cancer risk and get the recommended screening tests.  

“There’s no one I know personally who doesn’t know my story, that hasn’t heard about the American Cancer Society. I share it far and wide because I feel like that’s what I’m supposed to do,” said Steve.