In response to a FOX 13 News investigation, the Utah Department of Health and Human Services has conducted a search for all patients who may have been denied care they’re now eligible to receive.
Ariel Mierendorf spent months of time and energy fighting her insurance company, Healthy U, for the ability to receive a treatment called PIPAC. According to the federal government, participation in the clinical trial is legally required to be covered thanks to a law known as the Clinical Treatment Act.
Ariel is a single mother and Stage 4 appendix cancer patient.
"I think it’s necessary to have hope if you want to heal,” she said. “When a doctor tells me no, or insurance tells me no... many people just sit back and say, ‘Oh, okay, this is just how it is. This is what I’m told.’”
FOX 13 Investigates: University of Utah 'confused' by a federal law that was supposed to cover life-or-death cancer treatment
Before covering treatment for patients like Ariel, it took Utah eight months to implement state policy consistent with the Clinical Treatment Act. She is now receiving a potentially life-saving procedure but is not sure if the delay in care will affect her life.
Utah Medicaid Director Jennifer Strohecker initially said she did not know how many patients were denied from January 2022 through July 2022 for treatments they are now retroactively eligible to receive.
She agreed to begin a search for those patients after her interview with FOX 13 News.
A spokesperson for the Utah Department of Health said the review found zero patients denied for eligible treatments by the state’s fee-for-service program; “I had originally told you that there were 3 patients whose requests looked like they could have qualified under the act, but it turns out none of the claims we reviewed were part of a qualifying clinical trial.”
FOX 13 News also posed the same question to all four of Utah’s Medicaid providers.
Representatives with Select Health, Healthy U, and Health Choice each said they performed a similar search and found zero patients (other than Ariel) who were denied for eligible treatments.
A spokesperson for Molina Healthcare said the company was “not aware” of any other patients like Ariel but would not specify whether staff conducted a search.
Utah did not implement state policy consistent with the Clinical Treatment Act until April 2022 and did not finish administrative rule-making until July 2022.
After the publication of our previous story, a spokesperson for Centers for Medicare and Medicaid (CMS) confirmed states should have been eligible to implement policy as early as January 1, 2022.
CMS sent a bulletin with guidance to individual states with information on how to develop state policy on December 7, 2021.
“States were able to begin implementing this guidance on January 1, 2022," wrote a CMS spokesperson. "CMS sent an update to that existing guidance in April 13, 2022. The updated (guidance) did not delay or prevent states from implementing this guidance.”
In response, the Utah Department of Health said the CMS statement is “technically” true but not “practical.”
“I believe we acted very timely,” Strohecker said. “I feel that this policy followed a traditional pathway.”
FOX 13 News is now in the process of checking if the other 49 states took just as long as Utah to begin coverage for patients.