PARK CITY, Utah — Imagine being diagnosed with what’s typically considered a terminal disease. There is a medication to keep you alive, but when your prescription is canceled, the insurance company says they will no longer cover the cost.
That was the experience of Park City's Steven Sivak, an avid skier, hiker and "dad" to two-year-old terrier Merle Haggard.
Eight years ago, Sivak says he was feeling a little off and made an appointment to see the doctor. A few hours after routine blood work, the doctor called and told him to quickly get himself to the hospital.
“Me being a macho, mid-30s guy, I said, ‘I’m not going to the emergency room, I’m sure it’s fine,’" Sivak recalled. And he said, ‘No, I called ahead, they’re waiting for you, you have a room ready.’ And that’s how you find out you go from ‘I’m healthy’ to ‘you’ve got raging cancer.’”
It’s a cancer Sivak will have for life, meaning a lifetime of medication and a hefty price tag to stay alive.
“I think the more focused and sophisticated the medication, the more expensive they get,” says Sivak. “It’s a tremendous cost when they come out with these hyper focused chemotherapies and mine is over $200,000 a year.
“You don’t have a choice. It’s the only way you survive.”
At $200,000 a year, it was a manageable cost for years because insurance covered most of it. But that was before Sivak moved to Utah in 2021. For months everything was fine, until he received some news from his health insurer.
“2022, halfway through the year, Regence said, ‘We screwed up and we’re going to redo all your bills. That money, that $15,000, doesn’t count.’ And they redid all my bills and I immediately got letter after letter saying, ‘You’re passed due, you’re passed due, you’re passed due.'”
Bills totaling tens of thousands of dollars, one after another, began trickling in, leading Sivak to call his insurance company hoping to get a resolution.
“There had to be some mistake with the system. They said, ‘Don’t worry about it, it’s being fixed," he said. "It turns out that fixed meant they were keeping all that money, but wiping it out of my record and then redoing all my bills for the entire year.”
And from there, the bills didn’t stop.
Not only had the insurance company recalculated all his bills, but University of Utah Health also billed him for previous visits.
Steven wrote an appeal letter to Regence in October and received no response.
“At the end of the year I couldn’t fill the prescription. The pharmacy said your prescription has been canceled. And of course, I’ve been on the same medication since the first day I was diagnosed eight years ago, so it wasn’t canceled. The doctor’s office said, ‘We don’t know what they’re talking about.’” said Sivak.
Unfortunately, he, along with thousands of Utahans, experience copay accumulator adjustment. That’s when insurance companies and pharmacy benefit managers, or PBMs, keep the co-pay assistance meant for a patient and use it for more profit.
The assistance a patient would receive does not count toward deductibles or out of pocket costs.
During last year’s legislative session, Sen. Evan Vickers authored a bill that aimed to combat the very issue and to keep money in patient’s pockets.
It did not pass.
This year, Sen. Curtis Bramble is taking on a similar measure and hoping for a different outcome.
“We need to do something so that these individuals who are afflicted with these very rare diseases and these very high-cost medications can get the assistance that was intended for them,” said Bramble. “We need to have a statute that will preserve that benefit for them. This is going to be quite a battle because the vested interest in the health insurance companies and the PBMs is substantial.”
Without legislation, Utahans are left with few options.
FOX 13 News stepped in and called University of Utah Health and Sivak's insurance company to try and help stop the mounting bills, which is when the hospital network acted.
Although they stood by the past charges, they agreed to set up a payment plan for Sivak.
A few weeks later, there had been some action from Sivak's insurer and a burden had been lifted after his frustrations were heard.
And best of all, Sivak's medical debt was essentially erased.
“The insurance company went as far as saying we will just go back and back out all these bills that we redid, we’re just going to redo them again and say that you don’t owe us anything,” said Sivak. “It’s amazing because it was the same people that I had spoken to last year and begged for help and they just said, ‘We’re not helping you’ and it’s the same people calling me now saying, ‘How can we help you?’”
It's a new relief not having to battle cancer and spend hours on the phone asking for help. But Sivak knows there are so many others in the same situation still fighting to live, trying to pay for medications and treatments they simply cannot afford.
“Try as hard as you can not to get frustrated and be persistent," urged Sivak. "Stay in the game. Just keep going.”
A Regence spokesperson offered the following statement regarding Sivak's case.
“Helping members access high-quality, affordable care and simplifying their experiences is our top priority. Because of member privacy, we cannot publicly comment on this specific case. However, per our health plan benefit policy, copay assistance funds may not apply toward out-of-pocket expenses. Many health insurers utilize similar policies to combat the escalating prices of brand-name drugs, which ultimately increase member premiums. Copay coupons from drug manufacturers or copay assistance funds used by Regence members go directly to pharmacies to reimburse the cost of acquiring and dispensing medications.”
If you or someone you know has been hit with copay accumulator adjustment, there is support. You can contact Utah All Copays Count Coalition as a network for support.