FLORIDA — Mark Armstrong's bruises come and go — a byproduct of the blood cancer he has battled for years.
"This is nothing. This is like four days ago, so this looks good," Armstrong told us recently.
WATCH: Florida man with rare blood cancer fights insurer over insurance policy keeping him from medication
Armstrong was diagnosed with essential thrombocythemia two decades ago. His condition has since progressed to polycythemia vera, “It’s a very rare form of blood cancer," his wife, Michele, explained.
To manage it, Armstrong takes a daily oral chemotherapy drug — but the medication has taken a toll.
"It's just gotten to the point where it's gotten very toxic, and the side effects have gotten very bad," Armstrong said.
"Headaches, major headaches, fatigue, skin ulcers," Armstrong said. "It's enlarged my spleen. I've had what they call splenic attacks."
His doctor recently prescribed Jakafi, a newer but expensive treatment. The results were dramatic.
"By the end of the month I was feeling great. I didn't have the swelling in my legs. I still had some minor headaches, but it was bearable, and my skin started looking better," Armstrong said.
"Even my hematologist was amazed!”
But Armstrong cannot keep using it — because of a little-known insurance policy called a co-pay accumulator.
What is a co-pay accumulator?
Drug companies often help patients pay for expensive medications. Under a co-pay accumulator policy, insurers don’t count that manufacturer assistance toward a patient's deductible. So when the financial assistance runs out, patients could owe thousands of dollars out-of-pocket for prescription costs before their insurance kicks in.
In Armstrong's case, the drug maker paid nearly $9,000 for his first prescription. When he tried to refill it, his insurer, Oscar Health, said he still owed his $7,700 deductible.
"You accepted $8,600 from a manufacturer, and then you tell me I still owe you $7,700. I don't understand," Armstrong said.
The Armstrongs said the source of the payment — not the payment itself — is the problem.
"If I got the money from my mother or some other family member, we'd have been fine," Armstrong said. "But because it came from the manufacturer of the drug, they won't accept it."
"It's just crazy," Mark’s wife said.
The practice is banned in many states, but not Florida.
Co-pay accumulators are so controversial that half of states in the U.S. have already banned them, according to a recent investigation by KFF Health News. Florida is not one of them, despite several legislative attempts.
Pharmacy benefit managers and insurance companies argue a ban could drive up patient costs.
Dr. Jay Wolfson, a health policy expert at USF Health, said the insurance practice raises serious fairness concerns.
"They [insurers] are getting the money. They're being paid by the drug manufacturers, and they're saying, well, we're getting the copay, which would normally be applied to deductible, but we don't want to do that, so we won't. We don't have to, because the law doesn't say we have to," Wolfson said.
Critics call it a double dip by insurance companies.
"It's kind of a double dip. It's also a fundamental fairness issue," Wolfson said.
Adding to the frustration: a federal rule is supposed to protect patients when there is no generic equivalent for a drug. But a lack of federal guidance and enforcement means insurers are largely ignoring it.
In Mark’s case, the new medication, Jakafi, does not have a generic equivalent leaving his confused why he wasn’t exempt from the co-pay accumulator to begin with.
"It almost feels like fraud, it really does," he said.
A resolution — but questions remain
After Investigative Reporter Katie LaGrone contacted Oscar Health, Mark Armstrong received his new medication. But how, why, and who is paying for it remains unclear. A spokesperson for Oscar Health provided the following statement:
A member with an adverse outcome, whose case was already brought to our attention and being addressed through internal channels, has now been taken care of. The use of the copay accumulator in this case is consistent with Florida and federal requirements.
Rising medical and prescription costs are driving up premiums across the healthcare industry, and we know this puts real financial pressure on individuals and families. Our Florida ACA plans were designed to keep monthly costs as low as possible for our members. While other carriers are withdrawing from the state, Oscar remains deeply committed to Florida — offering more than 60 different health plans across a variety of price points. Our member care team is always available to help individuals navigate these options and choose the plan that best fits their needs.
For Michele Armstrong, watching her husband fight for medication that was clearly working has been painful.
"It's just horrible to watch him go through this. It's not fair," she said.
"I don't know how these people, the CEOs and CFOs and COOs of this insurance company sleep at night.”
What you can do
Patients can find out whether a co-pay accumulator policy applies to their plan by reading the fine print of their insurance policy. Those who believe the practice should be regulated in Florida are encouraged to contact their state lawmakers.
Share Your Story with Katie
Katie LaGrone focuses on making sure Florida’s laws actually work and her investigations have gotten results. If you know of a policy or law that’s not working how it’s intended, send Katie a message below.
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