Sickle Cell Disease impacts Black community alongside COVID-19
By Patrick Forrest, Chicago Crusader
The COVID-19 pandemic has affected the Black community disproportionately nearly everywhere in the nation, but this is not the first time a medical diagnosis has hit harder in the Black community. Health disparities between racial groups have been seen before and have been highlighted with the current pandemic, but people like Tracey Perkins of East Chicago, Indiana know the reality of the gap in access to specialty healthcare where she lives.
Perkins’ daughter Chyna Thomas, 7, and son, Maurice Thomas, 5, both live with an inherited blood disorder known as Sickle Cell Disease (SCD), which can cause serious health complications, chronic pain and potentially life-threatening organ damage.
Chyna and Maurice are two of an estimated 1,500 people in Indiana living with this disease. Despite living close to health care resources in nearby Chicago, because Perkins and her family receive Medicaid—as do more than half of Indiana’s sickle cell population—they are required to seek care only in Indiana.
“In people with sickle cell disease, if they get dehydrated, if they get a fever, if they get too cold, if they overdose themselves, even sometimes emotional stress can trigger the donuts to change shape. And it looks like a C shape or a sickle shape,” said Pediatric Hematologist and Director of Sickle Cell Research at the Indiana Hemophilia and Thrombosis Center (IHTC), Emily Meier.
“When those blood cells change into that shape, they don’t move smoothly through the blood vessels. And so then they get stuck and the whole purpose of a red blood cell is to carry oxygen around the body. And so if the blood cells get stuck, then those parts of the body don’t get oxygen. And then that triggers the pain crisis.”
Chyna and Maurice had sought care from a general pediatrician near their home, and they were frequent visitors to their local emergency room in NW Indiana. But their mom knew that what they really needed was help managing the disease, which was only possible with the help of a specialist three hours away in Indianapolis.
But with the beginning of a new clinic that launched in Gary, IHTC’s Sickle Care Coordination Out Reach and Education (SCORE) clinic, the gap in access to care for sickle cell patients between the ages of 3-21 years in NW Indiana is now being addressed.
“It was always an issue with trying to get down there, but I’m so happy that they came to Gary,” Perkins said. “It is only maybe like 10 minutes away from where we live now. It has gotten a lot easier.”
Due to advocacy work by IHTC and others, the Indiana statehouse funded a grant in 2019 for IHTC to begin work to correct a similar disparity in care for adults 21 years of age and older living with SCD in Indiana.
And just this year, the CDC awarded Indiana a three-year grant to fund a data collection project led by IHTC to ensure all Hoosiers with SCD receive the same high quality care no matter where they live.
Part of the grant allows access for patients like Chyna and Maurice to studies and new treatments. Additionally the grant allowed for the creation of a new partnership with the Martin Center, a community based organization that provides support to Hoosiers living with SCD.
Indiana’s grant criteria also allow for the provision of gift cards for medication and transportation, as well as providing mental health and career counseling services.
Perkins’ family now has access to local care, and through new IHTC partnerships for Indiana residents, her family is talking with doctors in Chicago about the possibility of a bone marrow transplant for the children, which could cure them of the disease.
“Not everyone has a full matched bone marrow donor,” Meier explained. “And so, only about 20 percent of children with sickle cell disease will have a full sibling, who’s a match for them.”
Pictured are the Children of Tracey Perkins; Chyna Thomas (middle), Maurice Thomas (right) and their younger brother Christian Thomas (left). The children are a unique case because while Chyna and Maurice have been diagnosed with Sickle Cell, Christian only carries the trait and does not have the disease and would be a full bone marrow match for his siblings, potentially giving them a cure. (Photos courtesy Tracey Perkins)