Brannen Whirledge was diagnosed with ulcerative colitis, an inflammatory bowel disease, two years ago at age 4.
His family tried for months to find an effective medicine for him that didn’t produce unpleasant side effects, such as nausea and fatigue. Finally, they found what his mother, Melissa, calls “a miracle pill,’’ the drug Colazal.
His symptoms went away, and he thrived, she told House lawmakers Monday.
Then the Atlanta family’s health insurer told them it would no longer cover the drug, she said. The family appealed, and the insurer eventually granted a temporary exception, said Whirledge. But that exception “expires this spring,’’ and now she’s worried about whether they can get another.
Whirledge joined patients and their advocates at the state Capitol on Monday to testify about legislation that aims to ease access to medications for serious illnesses by facilitating exceptions to insurer drug requirements.
Current protocols often require that a patient “try and fail” on one or more meds before insurers provide coverage for a drug that was originally prescribed. House Bill 519 would establish reasons for exemptions from such protocols.
A subcommittee of the House Insurance Committee heard sometimes wrenching testimony on the bill Monday. The Medical Association of Georgia and the Georgia Pharmacy Association said they support the bill. But health insurers – the presumed opponents of the legislation – did not testify.
State Rep. Sharon Cooper (R-Marietta), the sponsor of House Bill 519, cited a CNN report that California’s insurance commissioner is investigating Aetna after learning that a former medical director for the insurer admitted under oath that he never looked at patients’ records when deciding whether to approve or deny care.
Cooper said 16 states have passed similar legislation on medication exceptions.
No vote was taken on the medication bill. Another proposal – to reduce “surprise” medical bills involving hospital ER visits – was also debated by the panel without a vote.
Kristine Werner, 40, of Smyrna told lawmakers that several medications proved unsuccessful after her multiple sclerosis was diagnosed in 2012. She was hospitalized at times, and lost the ability to speak for six months.
Last year, she started a new drug, Ocrevus, which she said has been better for her. But after she went through a divorce and had to get a different health plan, she said, the new insurer wanted her to try two other medications before she could get Ocrevus again.
“MS is not a one-size-fits-all disease,’’ Werner told the panel.
Her twice-a-year infusion of Ocrevus costs $65,000 to $75,000. “I can’t do without it,” she said.
The insurer now has given her a pre-authorization for the infusion of the drug, but she doesn’t know how much of the cost will be covered.
‘The right thing to do’
Jon Ramsey of the Georgia Asthma Coalition said some patients with severe asthmatic conditions “have to jump through a lot of hoops’’ to get access to biologic drugs, which are produced from living organisms or contain components of living organisms and can be very expensive.
Ramsey talked of his own experience with asthma, and that of a Georgia girl who was stabilized on a drug that was approved by an insurer after she had already racked up more than $1 million in medical bills.
And state Rep. Kim Schofield (D-Atlanta), who has lupus, told the panel that the legislation “ is the right thing to do. We’ve been fighting this battle for a long time.”
The bill would require a health plan to grant or deny an exception to its drug protocols within 24 hours in an urgent health care situation, and in 72 hours for a non-urgent case.
The legislation on surprise billing, also sponsored by Cooper, would require a hospital not in an ER patient’s network to contact the insurer once the patient had been medically stabilized. Then the insurer could order a transfer to an in-network facility or authorize further care at the hospital where the patient had been stabilized.
The measure, House Bill 799, is supported by Kaiser Permanente. A Kaiser vice president, Kirk McGhee, told the Insurance subcommittee that the legislation can reduce the surprise charges that ER patients often face. He called it a “moral issue’’ for the problem to be resolved.
The legislation is opposed by the hospital industry. Anna Adams of the Georgia Hospital Association said the bill would create delays in patient care. Rural hospitals don’t have sufficient staffs to comply with the proposal if it’s enacted, she said.