ATLANTA - At age 6, Brannen Whirledge has grown up with a painful condition known as ulcerative colitis, with his parents helplessly watching.
"It's a lot harder than you expect," Melissa Whirledge says, her voice catching. "It's extraordinarily difficult to not be able to just fix it."
Brannen showed his first symptoms at 3 and was diagnosed at 4.
For nearly a year, Brannen's mother says, they tried several different colitis medications and dietary changes. But, she says, but nothing helped.
"He had excruciating pain," Whirledge says. "He had an inability to eat, lost his appetite."
But Melissa says Brannen has already tried and failed, several of the drugs on the company's list.
"And, he had very significant side effects, like vomiting up to 8 hours a day, extreme pain, a rash," she says.
The Whirledges appealed Aetna's decision, and their appeal was denied.
Finally, in November of 2016, Brannen's doctor prescribed a colitis drug his parents now call their "miracle pill."
"Because it was the first time in a year that he got to be a normal kid," Whirledge says. "He got his appetite back. He started growing again. He gained weight."
Yet, after about 6 months on the new medication, the family got a letter from Aetna, their insurance provider.
It notified them changes to their prescription drug coverage.
Under a cost-saving measure known as "step therapy" or "fail first," Brannen would have to try 1 or more "preferred" medications from a list of drugs before he could "step up" to the one he was taking.
Step therapy is designed to lower costs by directing consumers to lower cost drugs first before they move on to higher-priced drugs.
Stories like theirs led Georgia State Representative Sharon Cooper to propose a bill in the state legislature setting guidelines for when a company's step therapy protocol can be overridden.
"If the drug has been contraindicated for the patient," Cooper says, "If the patient has already failed on the drug, even if it was with another insurance company. If they've had to fail before, and they've had to switch insurance companies, they shouldn't be made to fail again."
After their appeal was denied, the Whirledges were able to get a 1-year step-therapy exemption from Aetna. Cooper's bill would narrow the window insurance companies have to make a decision on requests for exemptions. Under the plan, companies would have up to 24 hours to make a decision on urgent cases or 2 business days for non-urgent ones. Brannon has 6 months left on his exemption.
His parents will either have to reapply for a new exemption or find a way to pay thousands of their own money for the drug he's on.
"Because we're watching our child thrive," Melissa Whirledge says. "And, he's thriving on this medication. The idea that that could be taken away from him is extremely unsettling."
FOX 5 reached out to Georgia Association of Health Plans, a trade association which represents Blue Cross Blue Shield, Aetna, Coventry, Kaiser Permante and United Healthcare.
A spokesman says the association is taking a "neutral" position on House Bill 519, which recently cleared the Georgia House of Representatives, and will now move on the Georgia Senate.