IBD is rising in racial and ethnic minority groups, and this Tampa Bay woman wants to help

Managing chronic disease isn’t easy. Tampa Bay area resident Stephanie Wynn would know. Doctors diagnosed Wynn with Inflammatory Bowel Disease (IBD) in 2017. From when she started experiencing symptoms to when doctors diagnosed her, she’d gone from a size 14 to a size 0. It’s an experience she hopes to spare others from. And it’s one of the reasons why she established the nonprofit Stephanie A. Wynn Foundation in 2021.

The other reason lies within the organization’s mission statement. Wynn wants to help remove barriers to treatment for underserved African Americans diagnosed with IBD.

This Saturday, March 25, the foundation hosts “Let’s Talk Inflammatory Bowel Disease (IBD) Health & Wellness Symposium” at The Karol Hotel in Clearwater. The symposium, sponsored by Moffitt Cancer Center, aims to connect underserved African Americans with the resources they need to manage IBD.

It’s possible, like Wynn pre-diagnosis, that you’ve never heard of IBD. The term encompasses two diseases—Crohn's disease and ulcerative colitis. Both autoimmune diseases occur when a person’s immune system attacks their gastrointestinal tract. In ulcerative colitis, the immune system attacks the large intestine. In Crohn’s disease, the immune system can attack the entire GI tract, from the mouth to the anus. The resulting inflammation causes symptoms ranging from abdominal pain and cramping to diarrhea, fatigue, and rectal bleeding. Many patients experience frequent urges to have a bowel movement throughout the day. When they do go, it feels like passing shards of glass. The condition has no cure, but it can be managed with dietary changes and pharmaceutical drugs that suppress the immune system. And if all else fails, there’s surgery to remove damaged parts of the large or small intestine.

According to national estimates, IBD diagnoses are rising in racial and ethnic minority groups in the United States. Unfortunately, members of these groups don’t always have access to the same level of care as white Americans.

More and more studies show that African Americans, particularly Black women, are not getting the same healthcare as white Americans.

In 2022, Vanderbilt University Sociology Professor Evelyn J. Patterson showed that Black women are twice as likely to die during childbirth as their white counterparts.

Also in 2022, a review of IBD literature affirmed that Black/African American patients have higher hospitalization rates, longer stays, increased hospitalization costs, higher readmission rates, more surgical complications, and higher IBD-related mortality than white patients. “Disparities in IBD care propagate at every touchpoint,” the authors wrote.

Wynn almost died waiting to have her IBD appropriately diagnosed and treated.

“I had to go through a series of doctors to get to the actual diagnosis,” Wynn told CL in a phone interview. “I remember telling my doc, ‘Hey, something’s happening. I’m dying. What’s wrong? I need your help. You got to help me.’”

I can still hear the pleading tone in her voice.

“At that moment I felt desperate,” says Wynn.

It’s easier to identify healthcare disparities than it is to correct them, but the authors of that 2022 review posited several solutions. Among them, they recommend that IBD practices and hospital systems invest in the local communities where they work by partnering with minority-owned businesses to provide products and services.

This is something we’ll soon see play out in Tampa Bay. Several local healthcare providers have partnered with The Stephanie A. Wynn Foundation to help provide essential services to underserved African Americans diagnosed with IBD. The list includes Bayfront Health, Orlando Health, and USF Health’s new IBD Center, which opened March 1.

“We partnered with all these healthcare organizations so that we can bring not just awareness, but we can take the data and we can create action behind that,” Wynn told CL. “We talk about the numbers all the time, but when it’s time to help the community, there’s nobody there because nobody knows about this…That’s my fight—to remove the health and financial disparities for the IBD community, specifically those who are diagnosed with Crohn’s or ulcerative colitis.”

Wynn’s foundation provides the types of services Wynn wishes she’d had access to when she started experiencing IBD symptoms.The patient navigator program is at the heart of these services. The program provides underserved African Americans living with IBD with a patient navigator. This person, also an IBD patient, helps them navigate the healthcare system and successfully manage their disease. It’s one of the best resources the foundation provides to help local IBD patients.

Wynn is still in awe that so many local healthcare organizations have partnered with her to help underserved African Americans in our community obtain life-saving IBD treatment.

“I still can’t believe it,” Wynn told CL. “Partnerships are so important. When you’re bringing awareness to anything, you’ve got to partner with community leaders who believe in your vision as well as you believe in your vision. And your vision has to align with theirs. The beauty of my relationship with Moffitt is that if this IBD is not controlled, it could lead to colorectal cancer. And we want to show the risks if your IBD is not well managed.”

“Our goal is to bring the resources to attendees at this symposium,” Wynn continues, “because when the resources are in the building, there are no more excuses…We can set you up. We can get you insured. There are so many people out here who are not insured. That’s why they don’t go to the doctors to find out that they have IBD. In their minds, they feel like they can’t afford that. I want to change that narrative in our community. Let’s get you some help.”