Back in September, the fuel pump on Cynthia Barnes’ car gave out, leaving the single mother of two with no way to get her daughter to her next doctor’s appointment.
For two months, this was the case, but they eventually got back on track, easing back into a monthly routine: a three-hour drive from their home in Tifton to Augusta University Medical Center.
It’s a long ride but a necessary one. Barnes’ 11-year-old daughter has sickle cell disease, and Augusta is the closest facility offering comprehensive care for those with the blood disorder.
Other sickle cell patients should be so lucky.
According to the latest Sickle Cell Data Collection program brief, many children with sickle cell disease and their families not only face long drives to health care providers, they have limited access to doctors who can provide the specialized treatment they need.
It’s a problem that can mean more than a few missed checkups. It can mean forgoing crucial treatments like badly needed blood transfusions.
Currently, there are four cities in Georgia with pediatric sickle cell disease centers that offer daily care: Atlanta, Augusta, Macon and Savannah. Six additional sites offer periodic specialty clinics, typically one day a month.
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Sickle cell disease is the most common inherited life-threatening disease in children in the country.
Of babies born with sickle cell disease in Georgia from 2004 to 2016, 10% live more than an hour from any specialty care option, and another 14% live within an hour of a periodic specialty clinic only.
Angela Snyder, an associate professor at Georgia State University’s Georgia Health Policy Center and one of the authors of the brief, told me that more than 13,000 people have been diagnosed with sickle cell in Georgia since 2004.
“While this population is concentrated around metro Atlanta, it is also dispersed across almost every county in the state,” Snyder said.
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What surprised her, Snyder said, is even though Georgia has three comprehensive sickle cell treatment centers and additional outreach clinics delivering state-of-the-art care, 20% of newborns who screen positive for the disease are not seen for follow-up at a comprehensive pediatric center and 40% of the adults with sickle cell disease have never accessed care at one of these centers.
“While many Georgia providers and policymakers are aware of this issue and therefore aggressively pursuing opportunities to address some of these access barriers and increase knowledge about the disease in the health care workforce more generally, many others may still not be aware these access gaps exist,” Snyder said.
Dr. Peter Lane is certainly aware. He is director of the Sickle Cell Disease Program at the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta and Emory University.
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Lane said that it is critical for children with sickle cell disease to get plugged into comprehensive care, that is, services coordinated by a hematologist and primary care doctor who can minimize the amount of time they are ill and unable to be in school, and should they become ill, access appropriate treatment as quickly as possible.
And while sickle cell patients are doing better overall than ever before, he said, barriers to care put many at a disadvantage.
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“The bottom line is a third of patients live further than an hour’s drive from a comprehensive program,” Lane said. “The challenge is how to ensure kids in rural areas have access to the same comprehensive care, and when they get sick in the middle of the night to see providers who know what needs to be done.”
That becomes even more important, he said, when kids get acutely ill, because the situation can rapidly turn catastrophic. Patients, for instance, can go from having a high fever to dead in just three to four hours. It happens.
According to Lane, preventable deaths still happen in Georgia because of delays in getting appropriate treatment.
“Similarly, with complications like severe pneumonia, or stroke, if you’re a primary care doctor in a rural community and you have one or two patients with sickle cell, there is no way we can expect them to be as knowledgeable as 15 hematologists whose focus is sickle cell,” he said.
In case you’re wondering, here’s why the Sickle Cell Data Collection program is so important. It provides good data about where patients live and the kinds of services they have access to; and it gives other information, like how often they require hospitalization, and details of the circumstances around when patients die.
“It really gives us a picture of the impact of sickle cell disease across the state and helps focus activities to improve access to care,” Lane said.
The Sickle Cell Data Collection program was developed through a partnership with the Centers for Disease Control and Prevention, the CDC Foundation and the Georgia Health Policy Center to draw much needed attention to this issue.
But why should the rest of us care?
There are more kids born with sickle cell disease than with any of the other diseases for which the state does screening. There are more than 100,000 people with sickle cell disease in the United States, compared to approximately 35,000 with cystic fibrosis and 20,000 with hemophilia.
The goal, Lane said, is for kids to grow up and figure out what they want to do and go do it. That means minimizing the impact of this disease on their development so that they become independent adults.
That won’t happen until we’re able to address the vast health disparities here and across the country, so let’s be clear. Contrary to popular belief, not everyone with sickle cell disease is black. It’s true that sickle cell is much more common among people who have ancestors from Africa and east Asia, but it also happens in Latinos and other ethnic groups.
“Frankly the fact is sickle cell disease disproportionately affects people who don’t have access to health care services in general; there isn’t much public awareness or support for funding as there might have been had it affected a different demographic,” Lane said. “Race has a lot to do with health care disparities in this country.”
If the sheer volume of people with this disease doesn’t matter to you, remember Cynthia Barnes’ 11-year-old daughter and imagine having to drive three hours to get to a place where she feels confident her daughter will receive the quality care she deserves.
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