Sickle cell disease is a rare blood disorder that affects about 1,700 Hoosiers, state data shows. The majority of patients are Black residents from Marion and Lake counties who are on Medicaid.
That may be one reason why research and resources for the disease are underfunded compared to other chronic illnesses.
The issue brought more than 150 people to the Indiana Statehouse on Monday, Feb. 12 as patients and advocates called on lawmakers to address health disparities.
Meek Smith, a sickle cell “warrior”, shares her story with the audience. Advocates for the treatment and care of sickle cell disease gathered, Monday, Feb. 12, 2024, at the Indiana Statehouse in Indianapolis. The crowd gathered to emphasize the challenges facing Indiana families and the need for state legislators to have an increased awareness to the issues. Credit: Doug McSchooler/for Mirror Indy 
Jade Parker-Dinkins listens to speakers Monday, Feb. 12, 2024, during a sickle cell disease advocacy event at the Indiana Statehouse in Indianapolis. 
Advocates for the treatment and care of sickle cell disease gathered, Monday, Feb. 12, 2024, at the Indiana Statehouse in Indianapolis. Credit: Jennifer Wilson / for Mirror Indy 
Lena Harvey introduces herself to the audience as the event’s emcee. Advocates for the treatment and care of sickle cell disease gathered, Monday, Feb. 12, 2024, at the Indiana Statehouse in Indianapolis. The crowd gathered to emphasize the challenges facing Indiana families and the need for state legislators to have an increased awareness to the issues. Credit: Doug McSchooler/for Mirror Indy 
With her 2-year-old daughter at her side, Meek Smith, a sickle cell “warrior”, shares her story with the audience. Advocates for the treatment and care of sickle cell disease gathered, Monday, Feb. 12, 2024, at the Indiana Statehouse in Indianapolis. Credit: Doug McSchooler/for Mirror Indy 
A button for sickle cell advocacy day Monday, Feb. 12, 2024, at the Indiana Statehouse. Credit: Doug McSchooler/for Mirror Indy 
Advocates for the treatment and care of sickle cell disease gathered, Monday, Feb. 12, 2024, at the Indiana Statehouse in Indianapolis. The crowd gathered to emphasize the challenges facing Indiana families and the need for state legislators to have an increased awareness to the issues. Credit: Jennifer Wilson/for Mirror Indy 
Jacqui Haram, of the SCACURE Networks, addresses the audience. Advocates for the treatment and care of sickle cell disease gathered, Monday, Feb. 12, 2024, at the Indiana Statehouse in Indianapolis. The crowd gathered to emphasize the challenges facing Indiana families and the need for state legislators to have an increased awareness to the issues. Credit: Doug McSchooler/for Mirror Indy 
Advocates for the treatment and care of sickle cell disease gathered, Monday, Feb. 12, 2024, at the Indiana Statehouse in Indianapolis. The crowd gathered to emphasize the challenges facing Indiana families and the need for state legislators to have an increased awareness to the issues. Credit: Doug McSchooler/for Mirror Indy 
Representative for Indiana House District 94, Cherrish Pryor, addresses the audience. Indiana House Democratic Floor Leader. Advocates for the treatment and care of sickle cell disease gathered, Monday, Feb. 12, 2024, at the Indiana Statehouse in Indianapolis. Credit: Doug McSchooler/for Mirror Indy 
Advocates for the treatment and care of sickle cell disease gathered, Monday, Feb. 12, 2024, at the Indiana Statehouse in Indianapolis. The crowd gathered to emphasize the challenges facing Indiana families and the need for state legislators to have an increased awareness to the issues. Credit: Doug McSchooler/for Mirror Indy 
Advocates for the treatment and care of sickle cell disease gathered, Monday, Feb. 12, 2024, at the Indiana Statehouse in Indianapolis. The crowd gathered to emphasize the challenges facing Indiana families and the need for state legislators to have an increased awareness to the issues. Credit: Doug McSchooler/for Mirror Indy 
Pressnel Lafrance, an Indianapolis patient, speaks at the event. Credit: Doug McSchooler/for Mirror Indy 
Gary Gibson, CEO of Martin Center Sickle Cell Initiative, addresses the audience. Advocates for the treatment and care of sickle cell disease gathered, Monday, Feb. 12, 2024, at the Indiana Statehouse in Indianapolis. The crowd gathered to emphasize the challenges facing Indiana families and the need for state legislators to have an increased awareness to the issues. Credit: Jennifer Wilson/for Mirror Indy 
Yah Meeks speaks Monday, Feb. 12, 2024, during a sickle cell disease advocacy event at the Indiana Statehouse in Indianapolis. Credit: Doug McSchooler/for Mirror Indy
“We need to keep striving for a future where no one is denied the care they need due to a random obstacle,” said Pressnel Lafrance, an Indianapolis patient. His remarks were met with cheers from the crowd. Many had buttons that read “Mission: Health Equity” pinned to their shirts.
A person with sickle cell disease has rigid red blood cells that block blood flow to the rest of the body, causing excruciating pain. A crisis can lead to stroke, kidney and lung disease, blood clots and organ failure — cutting the average patient’s life expectancy by 20 years, according to a 2019 study.
Research on the disease and potential cures has been stunted by a history of discrimination, said Gary Gibson, who serves as president of a local nonprofit, the Martin Center Sickle Cell Initiative.
“Society used to think it doesn’t matter, they’re just Black people,” Gibson said. “Let them suffer and let them die.”
Stigmas continue today in emergency departments, where sickle cell patients seeking narcotics to manage their pain are often met with suspicion by doctors. A 2021 study found at least half of patients waited two hours or longer for treatment.
“They feel like they’ve been treated like a drug addict, or they’re not taken seriously because of the color of their skin,” said Lisa Hoffman, an advocate at Indiana Hemophilia & Thrombosis Center, a nonprofit that specializes in treating blood disorders.
In her work managing sickle cell grants, she’s noticed a lack of awareness about the disease.
“It’s taken years to get funding,” Hoffman said. “You can’t get many physicians to work in it.”
Dr. Andrew O’Brien, a hematologist at IU Health, is trying to educate emergency room doctors about the disease and tackle implicit bias in care.
“We don’t have enough tools, or the tools we have are not good enough to manage the problems,” he said.
O’Brien is piloting a telehealth program that would allow the city’s few sickle cell experts to connect virtually with patients at hospitals. He also wants to add care plans to patient health records so doctors can access specific information about conditions like sickle cell disease.
“Every single one of our patients has stories about being mistreated in health care,” O’Brien said.
That’s why so many sickle cell warriors showed up on advocacy day at the Statehouse: to remind lawmakers and the wider medical community that they exist.
State Rep. Gregory Porter, D-Indianapolis, who attended the event, promised to fight for the needs of patients.
“Millions and billions of dollars should be going toward this initiative,” he said.
Mirror Indy reporter Mary Claire Molloy covers health. Reach her at maryclaire.molloy@mirrorindy.org. Follow her on X @mcmolloy7.
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