“It’s excruciating. I’ve never had birth pain, but you know how they say birth pain is worse than menstrual cramp pain? It trumps all of those,” said Sireca Gregory, 32, who was diagnosed with the crippling red blood cell disorder sickle cell disease (SCD) at age 3. “You can’t move, you don’t want to eat anything, you’re in agonizing pain and uncomfortable. You just want it to go away.”
The agonizing sickle cell flare ups, known as a crisis, led Gregory to extended hospital stays and thwarted what should have been a carefree childhood. She said playing sports was impossible and she could not run too far or too fast without becoming winded. Her troubling childhood experience encouraged her to visit the White House in 2015 alongside other members of a local SCD foundation, who urged lawmakers to dedicate more funding to research.
Sonja Banks, president and COO of the Sickle Cell Disease Association of America, went to the White House, with other foundations’ members and patients, to urge lawmakers to dedicate more funding to research. (Courtesy photo)
Gregory’s harrowing description of her childhood is likely familiar to the more than 100,000 Americans suffering from the disease, which the Centers for Disease Control (CDC) estimates affects one in 365 Black births. Although the disease primarily affects people of African descent, a recent poll conducted by Howard University, Pfizer and the National Newspaper Publishers Association (NNPA) shows Black Americans are largely unaware of the disorder’s prevalence in the community. More than 31,000 phone calls were placed over a month-long span and nearly 800 respondents age 20-70 participated.
“While the majority of respondents were familiar with SCD and understood the disease in general, only one-third were aware that it disproportionately affects people of African descent, demonstrating a critical need for education and awareness,” the poll report, which was released on Sept. 21, said.
Seventy-six percent of respondents had positive or neutral attitudes toward SCD clinical trials and a majority expressed willingness to participate in future SCD studies. However, recruiting participants for clinical trials has been a significant challenge, according to poll researchers. Their review of 174 SCD trials showed nearly half of all studies terminated early due to an inability to enroll patients.
According to the National Heart, Lung and Blood Institute (NHLBI), the organization spent more than $1 billion researching the condition since 1972 when the National Sickle Cell Anemia Control Act was passed. However, funding still has not led researchers to a universal cure and has done little to advance pain therapy options for SCD patients. A new medication developed by California-based research organization Emmaus Medical recently received U.S. Food and Drug Administration (FDA) approval, but will not be available to the public until November.
Sonja Banks, president and COO of the Sickle Cell Disease Association of America, said funding drives treatment advancement and the disorder is often low on the totem pole of research grants compared to other diseases.
“We’re not receiving a lot of dollars in the SCD community, we’re not receiving dollars on the federal level and not a lot at the public level. All of those things you hear about lupus, cancer and AIDS is because there’s dollars being put into that disease and into the community. Thereby, they can keep that awareness going,” Banks told the AFRO. “One of the things we skirt is that primarily affects African Americans and minorities. That in itself is a disparity. It does not affect what people consider the majority population.”
Additionally, SCD sufferers face a myriad of challenges not examined in the poll, including access to drugs that treat severe pain. The U.S. opioid epidemic leaves some healthcare providers wary of patients who request powerful painkillers. “Because there’s no comprehensive model of care for Sickle Cell Disease, most individuals frequent the emergency room,” Banks said. “There’s a huge misconception that they are drug seekers.”
According to the Aaron Ardoin Foundation for Sickle Cell Research and Education, many people incorrectly assume African Americans are exclusively affected by the disorder, but it affects millions globally and is most common in people from Africa, South or Central America, the Caribbean and the Mediterranean. Persistent myths about SCD also limit public awareness and private donations, said Barbara Harrison, Howard University’s Center for Sickle Cell Disease director of community outreach and education.
“One of the most prominent myths I’ve encountered is that the disease has been cured or no longer exists,” said Harrison. “I think there was a lot of awareness of that in the ‘70s and there was legislation that passed at the time that really highlighted the presence of Sickle Cell Disease.”
Meanwhile, many Washington, D.C.-based organizations have done their part in recent weeks to heighten SCD visibility. Howard University hosted a month-long series of events, including a fundraising tea and a church service where healthcare providers offered free SCD trait testing; the Sickle Cell Disease Association of America held its “Walk with the Stars” 5k in Baltimore and the Sickle Cell Association of the National Capital Area planned a happy hour fundraiser at restaurant Ben’s Next Door in the District.
Southeast Washington, D.C. native Carla Hooker, 49, is pleased area organizations are piquing public interest. Hooker and three of four siblings grew up battling the condition and her brother succumbed to complications of the disease in April. She urges those who are unfamiliar with the disorder to learn more about the grim health implications SCD sufferers face and the disease’s life-altering consequences.
“I would prefer somebody ask me about the disease than to believe in these myths and have assumptions about Sickle Cell Disease,” Hooker said. She noted several instances when acquaintances observed she “didn’t look sick.” She wants people to know, “we all don’t look alike – we come in all shapes and sizes, just like people with cancer. There’s nothing wrong with my brain, but my body is hurting.”