'Stigma, fear and misperceptions': How racial disparities affect epilepsy treatment and care for Black Americans
Epilepsy, a brain disorder that causes seizures, is one of the most common conditions that affects the brain. According to the Centers for Disease Control and Prevention (CDC), about 3.4 million people — 3 million adults and 470,000 children — in the United States have it.
However, Black Americans with epilepsy face several challenges in terms of diagnosis, stigma and differences in care based on race. Although an estimated 578,000 Black Americans have epilepsy or a seizure disorder, according to the Epilepsy Foundation, they are more likely to be diagnosed with epilepsy than white Americans. They are also more likely to experience a seizure that continues for five minutes or more without stopping (status epilepticus) and are at increased risk for sudden unexpected death in epilepsy (SUDEP).
Dr. Pooja Patel, neurologist and the director of the epilepsy monitoring unit at Marcus Neuroscience Institute, tells Yahoo Life that “besides certain genetic factors, other causes of higher cases of epilepsy in BIPOC than Caucasians include higher incidence of stroke and traumatic brain injury.”
Although few studies have found differences in rates of epilepsy by race or ethnicity, research also shows strong links between epilepsy and socioeconomic indicators. Dr. Elia Pestana Knight, pediatric neurologist with a specialty in CDKL5 deficiency disorder (CDD) — a rare disorder characterized by seizures that begin in infancy — tells Yahoo Life that “incidence of epilepsy is higher in low-income communities.”
How race influences treatment and care of epilepsy
“Stigma and access to appropriate care are the major factors that impact diagnosis and treatment,” says Patel. “Because of the stigma, fear and misperceptions, there is a lot of delay in care. Even if care is obtained because of emergency purposes, there might be treatment compliance issues, which leads to poor control of seizures and complications from it.”
Research shows that, compared with white people, Black people with epilepsy are less likely to have regular outpatient care and are more likely to use the emergency room for seizure care. They are also more likely to rely on public health insurance programs such as Medicaid and Medicare.
Doctors are also less likely to admit Black people living with epilepsy to the hospital, despite insurance status, and when they are admitted, research shows that doctors order brain and nerve imaging tests for Black people with epilepsy less often than for white people. In addition, Black people with epilepsy may be less likely to receive anti-epileptic medications.
When asked about the underlying reasons for the disparities of care, Knight acknowledges that it’s a “complex question.” She says, “Some studies have documented more ER visits, more hospitalizations, more primary care visits, less visits to the neurologist and less adherence to treatment by nonwhites compared to whites with epilepsy.”
Knight also points to one study that looked at socio-demographic disparities of care for people with epilepsy and found that where they seek care, rather than patient characteristics, matters. The study found that Black people, as well as Hispanics, had higher rates of generalist visits and hospitalizations and lower rates of visits with epilepsy specialists — that’s important since, according to the CDC, the use of epilepsy medication to help control the condition is higher among adults who have seen an epilepsy specialist than among those who haven’t. Knight emphasizes that “health care providers need to ensure that up-to-date diagnosis and treatments are offered equally to all.”
Another small study found multiple barriers to epilepsy care in the Black community — namely, financial resources, epilepsy education, lack of communication with doctors and lack of social support.
Mom of three Whitney Mitchell, whose child Havilah was diagnosed with CDKL5 deficiency disorder, a rare form of genetic epilepsy, shared with Yahoo Life that her husband’s background and experiences as a Black man “definitely were a factor in access to Havilah's treatment.” She says, “As an African American man, he was much more hesitant to question medical authority, which was a big thing in the beginning when there were doctors pushing certain medications and treatments on us. I think he had been raised that being too hesitant of medical advice can have adverse effects on your health. So that really affected our access to care and treatment, especially having a child with a rare disease.”
Mitchell says that even though dealing with their child’s epilepsy diagnosis was new to both of them, “I think it was much more foreign to him, and I think a lot of that was heavily influenced by the culture he was raised in and the perception of medical professionals.”
For others, transportation is yet another challenge when trying to access epilepsy care. Stephanie Gowdy knows that firsthand. Gowdy had febrile seizures as a baby, which eventually stopped, only to return when she was an adult and pregnant with her second child. “I began having tonic-clonic seizures and they told my body I was in labor, so at 22 weeks I was three centimeters dilated and placed on strict bed rest for three and a half months,” she tells Yahoo Life. “During those three months, I was diagnosed and I have been having seizures ever since. Since this time, I have undergone many studies to capture my seizures and had brain surgery in an attempt to control them.”
Gowdy says that while she has been fortunate to have access to treatment, her main obstacle is transportation to her doctor appointments. “I am legally blind and with seizures,” she says. “I am unable to drive, and most of my doctors are a substantial distance” from where she lives.
Resources for Black people living with epilepsy
Along with access to epilepsy specialists and telemedicine to improve access to care, Patel emphasizes that “education is the key to encouraging the BIPOC community and changing attitudes for people with epilepsy to seek timely and proper care. Increasing awareness about epilepsy as a medical condition and removing the stigma can further help achieve better care.”
Experts say there are several resources for people with epilepsy:
The Epilepsy Foundation, through a multicultural outreach program, has tried to reach many people in the BIPOC community to spread awareness and serves as a resource for people in need of treatment. The foundation also has a 24/7 helpline to provide support to those with epilepsy.
The digital health platform Epsy is focused on empowering patients with seizures and epilepsy, along with caregivers and health care providers.
The Epilepsy Agency of the Big Bend (EABB) in Florida works to reduce barriers to care for those whose lives are affected by epilepsy, particularly individuals and families experiencing poverty.
Social support is also key. “Taking from other medical fields, minorities have better treatment and diagnosis, acceptance and adherence to medications when they share their experience with somebody that has experienced the process,” says Knight.
She also points to patient navigator systems that are used for patients with kidney failure and expecting kidney transplants, for example. Research shows that patient navigators help reduce disparities and improve outcomes, such as after surgery. “There may be other ways, but this is a system that works when patients are wary or scared of epilepsy surgery,” she says.
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