Backers of a sickle cell disease research initiative named in honor of long-time state Rep. Calvin Smyre are among those wondering what their next steps will be after the governor told state agencies not to ask for additional money next year. Stanley Dunlap/Georgia Recorder (file)
A proposal that would boost research for sickle cell anemia in Georgia could offer an early glimpse of some of the funding fights to come next year.
A research chair named in honor of long-time state Rep. Calvin Smyre was announced in Columbus earlier this year with the governor and other state officials on hand after $500,000 was included in this year’s budget. The Smyre chair named for the Columbus Democrat is part of a $16 million five-year research program that is turning to private giving for about half its funding.
Sickle cell anemia is a serious inherited red blood cell disorder that affects about 8,000 Georgians and is most common among African Americans. Access to treatment is uneven across the state, and some treatments are too costly for some patients.
“We want to plow ahead to say, ‘What other treatments and diagnostics can we come up with that are affordable and are accessible all over the state?’” Susan Shows, president of the Georgia Research Alliance, told a small group of lawmakers assembled Thursday to discuss sickle cell disease.
“And that’s why it’s important, even if a wonderful cure is found tomorrow, it’s not going to treat everybody. So, we need to be working on multiple levels there,” she said.
But the governor’s plans to hold state agencies to current spending levels has had a chilling effect on projects like these.
“If that’s the case, there’s not going to be any money for research infrastructure for this program,” Shows said. “We have zero money in our budget if it’s a flat budget for our sickle cell disease initiative.
“And that’s going to make it hard for us to recruit the very best candidate for the Smyre chair, and we won’t be able to move ahead with some of the other elements of the plan,” she said. “So, I’m concerned, our partners are concerned, and we really don’t have a plan B for now. But we are committed to try to make this happen as soon as possible.
It’s still early in the budget cycle for a spending plan that will take effect next July. But Kelly Farr, who is Gov. Brian Kemp’s budget director, instructed agency heads this summer to maintain current spending levels.
The call for flat spending comes as Georgia is experiencing a budget windfall from state revenues and federal coronavirus relief money.
“As our economy and our state grows, so too do demands of state government as we strive to meet the health, safety, and education needs of our citizens,” Farr wrote in July. Farr added that “in some instances, agencies may be permitted to request enrollment or workload driven growth items.”
The governor’s proposed spending plan – which factors in these agency requests as well as his legislative priorities – will be unveiled in January after lawmakers return to Atlanta for the new legislative session.
State Sen. Kay Kirkpatrick, a Marietta Republican who is a physician and a member of a Senate sickle cell study committee that met Thursday, noted that the budget usually undergoes significant changes once the governor hands it off to lawmakers. The governor, though, sets the limit on how much money is spent each year.
“I’m sure you know that the budget is a process that only starts with the governor’s office, and it gets beat up in many ways as it goes through the House and the Senate,” Kirkpatrick said. “The beginning of the budget and the end of the budget are two different things.”
Advocates hope the research program will eventually lead to increased access to treatment, which today can be difficult to come by for those living with sickle cell disease outside of Atlanta or Augusta.
“(Patients) do not like to have to go to Atlanta,” said Lois Williams, president of the Columbus-based Association of Sickle Cell Lower Chattahoochee Region. “They know they have to do that because of the care that’s there, but they want better access to care in their own communities.
“We know we cannot do all of the things that they do in Atlanta – that is the mecca – and we recognize that and we help our patients to get there. But they want better care here.”
Angela Snyder, director of health policy and financing at Georgia State University’s health policy center, said that emergency department visits averaged about three per adult during a five-year period studied.
“There’s a combined total of over – this is a pretty staggering number – 85,000 emergency department visits and almost 30,000 hospital admissions during that five-year period for those individuals,” she said.
“So, it’s a very complex chronic disease, and even though it’s not a lot of people, it accounts for a lot of health care utilization.”
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