Johns Hopkins All Children's Foundation


Fulfilling a Destiny

Posted on Aug 29, 2018

Dr. Clay with patient
Dr. Clay with patient

As a young girl growing up in Haiti, E. Leila Jerome Clay knew what she wanted.

"I’ve always said I was going to be a doctor since I was about 6 years old," Clay says.

When she was 15, amid political tumult in Haiti between a pro-democracy movement and military leaders, Clay's mother sent her to live in New York with her father. "Mom said, 'I guess you should go live with your dad so you can actually go to medical school like you said.'"

Clay was reluctant to go but eventually seized the opportunity, earning an undergraduate degree from New York University and later a medical degree from the Morehouse School of Medicine in Atlanta. She completed a residency at the Rutgers New Jersey Medical School and a pediatric hematology-oncology fellowship at the University of North Carolina, Chapel Hill.

In high school and at NYU, Clay had a few good friends affected by a group of inherited red blood cell disorders, sickle cell disease.

Her curiosity was piqued.

Building the Program

Fast forward to today when Clay continues to feed that curiosity as director of the sickle cell program in the Johns Hopkins All Children's Cancer & Blood Disorders Institute. She joined the hospital staff early this year and speaks quickly and enthusiastically about the many pediatric sickle cell patients on Florida's west coast and the specialty clinic that provides care for patients on the main St. Petersburg campus as well as Tampa and Lakeland. She collaborates with Jessica Wishnew, M.D., a hematologist-oncologist who sees patients in the clinic in both Tampa and Lakeland. The sickle cell team also includes newborn screening nurse Dawn Gate, R.N., social worker Lori Wilson and plans to add an advanced practitioner. The program also has a strong relationship with the Sickle Cell Disease Association of America (SCDAA), St. Petersburg Chapter, working closely together to optimize patient care.

"We have a lot that I’m working on," she says. "I’m excited. I’m really, really optimistic about the possibilities. A lot of people don’t realize what a great institution this is and that we have this program."

Sickle cell disease is the most common inherited blood disorder and affects about 100,000 people in the United States, most commonly African Americans, according to the Centers for Disease Control and Prevention.
Clay, who speaks French and Haitian Creole fluently and comprehends Spanish, is working to expand the overall sickle cell program and the Sickle Cell Clinic. She is working to develop a transition program and partner on an adult program that will allow her to continue monitoring patients beyond age 21.

"That's big for patients with a chronic illness," she says. "We want to have a program so when the kids turn 18 or 21, we can keep track of them and make sure they’re transitioning and we continue that relationship."

She also hopes to develop mentoring relationships between adult patients and teens.

"Sometimes a teen wants to be an adult, but it’s hard for them to see what that looks like," she says. "We’ll show them this is a 25-year-old sickle cell patient with a job and make them feel more comfortable. We will strive to provide excellent care to all sickle cell patients through the west coast of Florida."

Research and a Mentor

Clay's focus on that transition period extends beyond her clinical work and into research. When she came to Johns Hopkins All Children's from the Augusta University Sickle Cell Center, she was able to continue with two grant-funded research projects with which she is involved.

A Health Resources and Services Administration-funded project is a cooperative among several institutions in the southeastern United States designed to improve the quality of and access to sickle cell care. Clay is on the team as an expert in the transition from adolescent to adult care.

The other project, funded by the Patient-Centered Outcomes Research Institute, focuses specifically on the transitions from pediatric to adult care. Clay is the principal investigator for the Johns Hopkins All Children's portion of the study.

She also is working with Neil Goldenberg, M.D., Ph.D., the director of research at the hospital, to expand opportunities for patients to join clinical studies.

George Dover, M.D., former pediatrician-in-chief at the Johns Hopkins Children's Center in Baltimore, Maryland, was among the pioneers of sickle cell research. Even though Dover has left an on-site advisory role at Johns Hopkins All Children's and returned full time to Baltimore, he serves as a mentor to Clay, routinely connecting with her through Skype.

"Dr. Clay is an extraordinary physician who straddles the world of pediatrics and adult medicine," Dover says. "Her research on the most effective way to transition patients with sickle cell disease after they ‘age out’ of pediatric care focuses on how to prepare adolescents with sickle cell disease to manage on their own their chronic disease."

With such support and her natural energy, Clay has ambitious plans for the sickle cell program at the hospital.

"I want to make it known that the comprehensive sickle cell program at Johns Hopkins All Children’s is where you want to be," she says. "That's one of my goals."

Comprehensive Sickle Cell Clinic

Primary specialties involved: Hematology-oncology, bone marrow transplant, psychology (main campus), social work, pain management (main campus)

Clinic availability and locations: Wednesday and Thursday at Outpatient Care Center, 601 Fifth Street S., St. Petersburg; every Friday and the forth Monday of the month at Outpatient Care, Tampa, 12220 Bruce B. Downs Blvd., Tampa; second Tuesday of the month at Outpatient Care, Lakeland, 3310 Lakeland Hills Blvd., Lakeland.

Primary treatments available: Routine surveillance care, collection of lab specimens, treatment of acute pain episodes (main campus and Tampa), treatment of fever (main campus and Tampa), echocardiogram (all locations with advance scheduling), transcranial doppler ultrasound (main campus with advance scheduling), MRI (main campus and Tampa with advance scheduling)

Referral required? Only as required by the patient’s insurance provider

For more information: Call our main campus clinic at 727-767-4176 or our Tampa clinic at 813-631-5001