Brandi Woods leads a busy life. Two careers keep her constantly on the move and often traveling.
But as someone with sickle cell disease, that kind of non-stop lifestyle can take a toll.
Sickle cell disease is a genetic disorder that affects the shape of Brandi’s red blood cells, making them stiff and sticky. This can cause problems like poor blood flow, pain, infections, anemia and organ damage.
Sometimes, the blockage in blood vessels can lead to what’s known as a pain crisis, which can feel like a full-body migraine or worse and can lead to hospitalization.
Brandi was diagnosed with sickle cell disease as a child and has been working to manage the symptoms ever since, first as a patient at Children’s Hospital New Orleans and, now that she lives in Baton Rouge, at Our Lady of the Lake Health.
“I usually try to live a pretty normal lifestyle,” Brandi says. “I don’t try to let the disease define me.”
Sickle cell disease kept her from fully being able to participate in school sports like tennis when she was younger. As an adult, she’s had to limit how much she exerts herself to keep the pain at bay.
Allogeneic hematopoietic stem cell transplantation is the only curative therapy for sickle cell disease. Other therapies include oral chemotherapy to decease the frequency of pain crises and monoclonal antibody medications to decrease both the frequency and severity of pain crises. Crisis management includes treatment with IV fluids, pain medications and blood transfusions.
As Brandi’s care team, including hematology/oncology physician Patrick Stagg, MD, sought better ways to help her manage the disease, her busy schedule often got in the way. She works in corporate sales, traveling the Southeast region of the U.S. for the Kraft brand. She’s also a licensed Realtor, and just a year ago, she was finishing graduate school. So, the prospect of coming in regularly for infusion treatment was out of the question.
Clinical Research nurse Karla Tullier, RN, searched for alternatives. She told Brandi about a clinical trial for a new drug she could take once a day to help increase hemoglobin levels, which would reduce inflammation and prevent the stickiness of red blood cells.
As part of the trial, Brandi would have to keep a journal of how she felt while on the medication, come in occasionally for lab tests to measure any changes in hemoglobin, and alert the team to any increases in pain.
Brandi began the 12-week trial in June 2023, then in August 2023 opted to continue through an additional phase of the trial, which tracks the long-term success of the drug.
She’s already noticed a decrease in pain crisis events, even at times when she knows she may be pushing her limits with her busy schedule.
She credits her care team, including Karla, for keeping her on track and finding options that fit her individual needs.
“Karla really understands my lifestyle and it’s great to have someone who truly sees that,” Brandi says. “She’s trying to keep up with my schedule even though I can barely keep up with it.”
The benefits of being part of a clinical trial aren’t lost on Brandi – she’s had difficulty in the past getting insurance clearance to use new types of drugs for her disorder. When insurance does not cover the cost of medications, patients must weigh the cost with the benefits of treatment. At times, patients must cover the cost of treatment out of pocket. However, as part of a clinical trial through Our Lady of Lake, Brandi has been able to try a new treatment option before it hits the market. The medication she takes in the clinical trial is provided by the sponsor.
For someone like Brandi who must live with a chronic disorder and manage its effects daily, access to alternative treatment options is incredibly important. Clinical trials provide that option as well as expand the care team around the patient to include research doctors who have a vested interest in monitoring the patient’s well-being and ongoing health needs.
“I don’t know if I’d have been able to find this option on my own. It wasn’t anything I thought was available for me,” Brandi says. “I encourage people with a chronic illness to ask their doctors or care providers to see if clinical trials are an option.”
