Randi Clites’ son Colton was born with severe hemophilia – a rare blood clotting disorder that typically costs $400,000 a year or more to treat. Even with health insurance, Clites and her husband needed help to meet their copay.
“We’re dependent on copay assistance from any way we can get it," Clites said. "If it’s nonprofits, if it’s manufacturers of the medications, it’s the only way we can afford our medications – and the only way we have access to the drugs that keep our children alive.”
Clites, whose son is now 20, said her health insurance costs more than $6,000 a month.
But in recent years, health insurers clamped down on outside financial aid, whether it’s from drugmakers, church groups or foundations.
Many consumers are discovering to their surprise an obscure new clause in their health insurance policy stipulating that any outside aid they obtain is no longer counted toward meeting their annual deductible or copay maximum.
Clites, a patients advocate with a foundation helping children who have rare diseases, said that happens even though the insurance company is still getting its money – meaning they are in effect double-dipping.
“I’ll never forget the day,” the Ravenna woman said. “I was sitting at my desk and I got a call from a mom who received a letter that said her co-pay assistance was no longer going to count towards her deductible.”
'Patients ... have passed away while waiting for those medications'
Josh Cox knows that feeling. He’s the director of pharmacy for Dayton Physicians Network, which serves numerous patients with rare diseases over an eight-county area. Many of them, Cox said, are stunned by this insurance company tactic, which goes by the unwieldy name of copay accumulators.
He said he sees patients who think their maximum obligation has been met, but find out differently when the aid runs out and suddenly realize they still must meet their full copay.
“They could be a number of months into their therapy when they see their copay go from $25 to $2,500,” Cox said.
That’s a crucial turning point. If patients can’t afford the full copay, their doctor might be able to switch them to a cheaper treatment, which may or may not work as well. Since the patients most affected by copay accumulators are battling rare diseases requiring expensive treatment, there is usually no generic equivalent to the pricey name brand drug.
But in all too many cases, the patients simply stop taking the medications they need due to cost, the pharmacist said.
“There was a survey conducted by the American Society of Clinical Oncology earlier this year that shows 1 in 5 patients who need financial assistance have either delayed for foregone treatment because of cost, Cox said.
That rate doubles among the poor and minorities, he noted.
“With the advent of copay accumulator programs, adherence has gone down because patients have to deal with the financial toxicity associated with high copays as they come up throughout the year,” Cox said.
It’s not an exaggeration to say that the stakes sometimes are literally life and death.
“Patients have waited to receive treatment and have passed away while waiting for those medications to be approved and delivered to them," Cox said.
According to a recent review of commercial insurers, 83% of policyholders are part of plans with copay accumulators. More than three-fourths of those cost adjustment programs were levied on pharmacy benefit products.
The explosion began when the administration of President Donald Trump approved the accumulators by health insurers in 2019.
In a 2021 study, the AIDS Institute condemned the insurers and PBMs for putting patients in the middle of their ongoing drug-pricing debate with pharmaceutical companies: "Using patients as leverage in this debate does nothing to rein in industry pricing – it simply puts the most vulnerable patients in harm’s way."
Will Ohio's pro-patients bill get sidetracked in legislature's lame-duck session?
Cox, Clites, who is a former state legislator, and many others are trying to change Ohio law to outlaw these copay accumulators. Fifteen states already have enacted bans, including West Virginia and Kentucky, impacting 11% of those with commercial health plans.
Groups representing Ohio pharmacists, doctors and hospitals are among some 60 health-care provider organizations and patient groups backing the bipartisan proposal, House Bill 135.
The only public opponents are pharmacy benefit managers – obscure middlemen in the drug supply chain often simply called PBMs – and health insurance companies. But those insurance companies, which claim copay assistance drives up the cost of prescription drugs, are politically powerful in Ohio.
Kelly O’Reilly, president and CEO of the Ohio Association of Health Plans, called aid from drugmakers "a marketing tool by the pharmaceutical industry."
"If drugmakers can afford to give out coupons for their products, why don’t they just lower the price for everyone instead of giving coupons to some people - those with private insurance - and not anyone else?" she said.
"In the end, copay coupons force small businesses to raise premiums, thereby impacting increasing health costs for their employees. House Bill 135 encourages this practice, instead of addressing the root cause of inflated drug prices by pharmaceutical companies."
While the bill passed the House Health Committee unanimously in the spring of 2021, it mysteriously disappeared down the Statehouse rabbit hole for nearly a year. After a Columbus Dispatch story questioning the delay on such a widely supported bill, it went to the entire House, where it passed without opposition.
It's still far from a done deal, however.
The Senate sat on the bill for several months until an initial Health Committee hearing Nov. 16. Despite the backing of Republicans and Democrats, GOP members of the panel still express skepticism about the measure.
Chairman Stephen Huffman, a doctor from Tipp City, told ABC6 On Your Side he questioned whether House members knew what they were passing in the unanimous vote.
Cosponsors Susan Manchester, a Republican from the northwest Ohio of Waynesfield, and Canton Democrat Thomas West, expressed an openness to minor amendments but strongly urged passage of the copay accumulator ban during the committee hearing.
“Our bill is simple," Manchester said. "It disallows health plans and PBMs from discriminating against patients who use third-party assistance to help pay their increasing out-of-pocket expenses mandated by their coverage plans."
West cited a constituent who has suffered from the impact of copay accumulators.
“We’ve all heard stories from patients rationing drugs, people who have missed a dose here or there to make their prescriptions last a little longer," he said. "No one should be put in this position, caught between a rock and a hard place.”
DeWine uncertain whether he'll sign ban on copay accumulators
Another hearing on the Manchester-West proposal is slated for Wednesday, when other proponents are scheduled to testify.
However, only a month remains in the current two-year legislative session. And numerous other GOP priority bills are being rushed through before the end of the lame-duck session.
Even a minor amendment by the Senate would then require the House to consider the new version.
A spokesman for Gov. Mike DeWine said while the administration is watching the bill, he has taken no position on it.
All that means Ohioans currently in their open enrollment period to sign up for health insurance will be left up in the air for yet another year for coverage decisions that are greatly impacted by copay accumulators.
And Ohio hasn’t even begun to adapt to a new tactic that insurance companies are using, perhaps to get around the growing number of state bans, called copay maximizers.
Author: Darrel Rowland