Alexander Howe didn’t think much of the strange bump on his leg at first. Then it grew bigger. He knew he had to see a doctor, but he was nervous.
Howe, 53, is a gay man living in St. Petersburg. Talking to a doctor about his personal life can be kind of awkward.
“I didn’t want to feel like a victim,” he said. “It can be scary to talk to a doctor, especially if you’re transgender or identify as gay. But for me, I didn’t want to die. There are doctors out there that are willing to listen and learn."
And some who still have a way to go.
Up to 12 percent of the U.S. population identifies as lesbian, gay, bisexual or transgender. But the LGBTQ community has long been underserved when it comes to health care, a new study by researchers at Tampa-based Moffitt Cancer Center concludes.
The Moffitt team surveyed 450 oncologists from 45 cancer centers that collaborate and share resources with the National Cancer Institute. The results showed that while most oncologists were comfortable treating lesbian, gay and bisexual patients, only about half were confident they knew those patients’ health needs. The number dropped to about a third for transgender patients.
Education gaps like that can put LGBTQ patients at risk for poorer outcomes when it comes to cancer treatment, said Matthew Schabath, the lead author on the study. Patients in that group also are less likely to have preventative screenings or health insurance, he said.
Results of the survey, said to be first of its kind in the nation, were published earlier this year in the Journal of Clinical Oncology. And they led researchers and doctors at Moffitt to create a new program to educate oncologists, and perhaps other front-line medical professionals, on how to better serve LGBTQ patients.
“When you think of personalized medicine, it means doctors aren’t just treating the disease, they’re treating the patient,” Schabath said. “It’s not just about the tumor, but that person’s whole body and soul. With a little more education, we’re hoping we can improve the health care experience for this community and provide a safe place.”
Moffitt is working with the Sylvester Comprehensive Cancer Center at the University of Miami and the UF Health Cancer Center at the University of Florida to create “cultural competency” training programs designed to improve general know-how about LGBTQ patients and the care they require. The training will be available in four 30-minute sessions and offered online.
In a pilot study of 20 Florida oncologists who completed the online course, only a third could answer more than 90 percent of the LGBTQ questions correctly. After the training, that one-third figure jumped to 85 percent, Moffitt researchers said.
“We focused on oncology providers, but there’s no data collected with any doctor on these patient groups at the federal level,” Schabath said. “It can be really hard to get to the patients to study them specifically. But we thought if we could get to the providers, and intervene there, that’s half the battle.”
So the larger issue is expanding to reach more people in the medical world, said Dr. Julian Sanchez from Moffitt.
“When I first got to Tampa, there was no real coordinated screening program for this community,” said Sanchez, who sees a relatively high number of gay patients in his gastrointestinal oncology practice at the center. Sanchez worked with the Hillsborough County Department of Health to create a program to screen patients for the human papillomavirus, or HPV, which can cause many of these types of cancer.
“One of the high-risk groups are gay men with HIV,” he said. “Because of that, screening programs should be more aggressive with this particular group, but there are no formal screening guides for gay men or lesbian women.”
Sanchez said other hospitals are doing a lot of work on this topic, but the biggest barrier is collecting data from patients that could be used to draft routine screening guides, which are key to catching and preventing cancer. It's the crucial information that’s collected during those first visits with a new a doctor, yet it’s not always easy to get.
“A lot of LGBTQ folks, especially the transgender community, have a difficult time accessing health care and talking about their bodies,” said Lucas Wehle, director of trans services at Metro Inclusive Health, a nonprofit health care organization that serves the LBGTQ community in Tampa Bay. “It can be even more difficult to feel safe when they don’t know their doctors’ background and how open they are.”
Added Sanchez: “There’s no easy way to find out who is gay and who is not gay. I could find out how many people in one zip code had stomach cancer, but I can’t find out how many of those with stomach cancer are gay or not.”
One way to improve the doctor-patient relationship would be to include cultural training in medical school, said Dr. Luke Johnsen, medical director at Metro Inclusive Health.
"We must educate doctors to ask these questions and address these issues, no matter their personal beliefs," he said. "No doctor wants to miss a diagnosis. And if you're not asking all the right questions, you could."
For Howe, the bump on his leg ended up being a cancerous liposarcoma. He went to St. Petersburg General Hospital for tests before being referred to Moffitt.
After chemotherapy and surgery, the lump was gone and Howe has been in remission for four years.
“It was a really dark and depressing time,” he said. “But the doctors and staff made me feel comfortable. I wasn’t ashamed to tell them I was gay.”
Contact Justine Griffin at [email protected] or (727) 893-8467. Follow @SunBizGriffin.