SALT LAKE CITY — Ariel Mierendorf has stage-four cancer.
A federal law known as the Clinical Treatment Act states patients like her are supposed to be able to receive potentially life-saving treatment. It went into effect on January 1, 2022.
In July, after months of denials, representatives from Ariel's insurance provider Healthy U went before a judge and described being "confused" by the "new" law.
Now a FOX 13 News investigation is revealing why insurance companies denied patients like Ariel for approximately eight months.
Click the video above to watch our special report – Medical Insurance: A Life-or-Death Battle.
Appendix cancer
In some ways, Ariel viewed the "battle" with her insurance company as worse than what's going on inside her body.
In fact, she intentionally tries not to describe her appendiceal cancer diagnosis as a "battle" — it's a "journey" or "healing."
"I was diagnosed a little over one year ago (July 2021). It was a week after my 30th birthday," Ariel said. "It's rare. It's like a one-in-a-million cancer, and then the typing I have is one-in-two-million."
Ariel sat down with with FOX 13 News on July 28, 2022.
She was joined by her two-year-old son Bodhi.
"Pretty much every time I leave the house he says, 'Mommy’s going to the doctor!'"
Ariel doesn't know how much time she has left.
"We're all going to die at some point, and I'd prefer not to have a doctor give me an estimate on what they think the span of my life will be," she said. "With my type of cancer, they don’t really use words, unfortunately, like 'remission' or 'cure,' so what we hope for – at least for me – is a longer life."
Ariel is a single mother from Arizona.
In January, after her diagnosis, both of her parents stepped away from work and moved with her to Utah.
Heidi Mierendorf and Brett Mierendorf now view taking care of their daughter and grandson as a full-time job.
"I mean, it's her battle," Brett said. "I wish I could take it from her."
PIPAC
In February, doctors told Ariel perhaps her only path forward is a treatment called "PIPAC," which stands for "Pressurized Intraperitoneal Aerosolized Chemotherapy."
The treatment is not FDA approved but is currently going through clinical trials. Doctors described Ariel as a perfect candidate.
"This PIPAC surgery, what it does is goes in laparoscopically and infuses hot aerosolized chemo at a high pressure into my abdominal cavity," Ariel described. "Probably only a small portion (of traditional chemo) actually gets to the surface of the organs."
Despite letters from her doctor, she learned Healthy U would not cover the treatment.
"All of a sudden you need this life-saving treatment, and you're just like, please! It's like, do I need to beg?" Ariel described. "We were actually given multiple different reasons for why it was denied. Different than the one that they wrote originally on the paper."
Denials
At first, Healthy U said it does not cover treatments out of network.
Then, Ariel said she called and was told she was denied because of "an issue with the paperwork."
She appealed and was denied again .
"They don't cover 'investigational' or 'experimental' treatments," Ariel said. "A third different excuse."
This whole time, both of her parents — who, by the way, work in the medical field — kept researching.
"Show me the hoop. I'll jump through it. Show me the next hoop. I'll jump through it," Brett described. "But then when the hoops start to move, and they start to change their denial reasons, that’s when we pull out all the stops."
Clinical Treatment Act
Information on the Clinical Treatment Act was not included in Ariel's denials.
By the time they found it, Ariel's parents were shocked to learn potentially life-saving information was kept from their daughter.
"If you didn’t ask exactly the right question, they’re not going to volunteer it to you," Brett said. "You get answers when you ask questions, but nobody tells you what questions to ask."
Ariel's next step was to appeal to a state judge. Healthy U stopped putting up a fight after she cited the Clinical Treatment Act.
"I'm not a special case," Ariel said. "I'm not a charity case. This is what the law says."
Representatives for Healthy U said they didn't know about the Clinical Treatment Act until days before the hearing and that they kept denying Ariel's claims because they weren't sure who was supposed to pay the bill.
"I genuinely don't think people knew about the law," Ariel said. "It seems like it would be someone's job to know."
The judge ended the appeals, demanded treatment, and told Healthy U to figure out the payment later.
"I think (insurance companies) deny knowing that if the majority of people fall off, it saves them a lot of money," Ariel said. "I get the feeling that most people just give up."
Healthy U had been communicating with FOX 13 News for months but ultimately declined an on-camera interview.
Instead, they sent an email which read, in part: "Our goal in attending the hearing in this case was to seek clarification about federal law and policy updates recently announced by Utah Medicaid."
The hearing was not optional. Representatives with the Utah Department of Health confirmed Healthy U was required to attend.
Implementing state policy
Julie Ewing, the director of compliance at University of Utah Health Plans, said Healthy U could not approve any patients until July, after the state implemented policy and sent guidance to each of the four Medicaid providers in Utah.
Utah Medicaid Director Jennifer Strohecker confirmed the guidance was sent from the state to Healthy U in July.
"When they say they didn't know how it's supposed to work, should they have known?" asked FOX 13 News investigative reporter Adam Herbets.
"Yes," Strohecker responded. "It’s part of our contractual agreements with our (insurance company) partners that they stay up on Medicaid policy, that they’re familiar with it, and that their plans align with it."
A spokesperson for the Centers for Medicare & Medicaid Services confirmed it sent guidance to the Utah Department of Health and Human Services in December 2021 and April 2022. According to Strohecker, the state implemented policy in April 2022 and sent a bulletin to each of Utah's four Medicaid providers in July 2022 once it approved administrative rules.
The policy indicated patients were "retroactively" eligible to receive treatment for claims submitted after January 1, 2022.
"I believe that we acted very timely," Strohecker said. "Policy development does take some time, and it's important that it goes through these steps so it's done properly... Our processes that we work through at a state level can seem very confusing and convoluted from the patient perspective, and I understand that."
Strohecker said she doesn't know how many patients were denied for treatment that they retroactively ended up being eligible to receive under the Clinical Treatment Act — or if any of those patients received information about the Clinical Treatment Act and their future appeal rights at the time of denial.
"I don’t have the answer to that question... We do not necessarily review claims that have been submitted to see if they are retroactively eligible," Strohecker said. "We can always be sensitive to what we communicate and how we communicate, and make sure it’s clear, it’s timely, and it achieves our intended goal."
Treatment received
Ariel received her first PIPAC treatment in August.
She questions how many people gave up instead of battling their insurance companies for treatment.
"Many people just sit back and say, 'Oh. Okay. This is just how it is. This is what I’m told,'" Ariel said. "I feel extremely lucky that I have family that are in the medical field and they’ve been my biggest advocates and researchers... I wouldn’t be able to do all of the things that I’m doing and have all the knowledge that I have if I didn’t have them doing so much of the work."
Especially because her treatment was delayed, nobody knows whether the PIPAC treatment will be successful.
"My goal is not to live forever, but I want to live to a point where my son can give me permission to pass," Ariel said. "I'm not afraid of dying. I'm not even really afraid of the pain... I'm just really afraid that it will be too soon for (Bodhi)."
Who else?
FOX 13 News asked all four of Utah's Medicaid providers the same two questions:
- How many patients, like Ariel, were denied as the state figured out how to implement the Clinical Treatment Act?
- Were any of these patients given information about the Clinical Treatment Act?
Next week, we will continue our reporting with those answers.
Click here for information on clinical trials in the United States.
This is a developing story. Stay with FOX 13 News for updates.