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KAYSVILLE — Having a child diagnosed with cancer is an unimaginable ordeal for any family, and adding any challenges on top of it can seem overwhelming.
Paul and Jami Porter of Kaysville learned last week their insurance plan was terminated under the Affordable Care Act, more than 3 1/2 months into their daughter's fight with undifferentiated sarcoma began.
Six-year-old Ellie Porter, who has had one kidney removed, just wrapped up her radiation treatments and is expected to be done with chemotherapy around the first of the year.
"You're getting used to what's going on; and then all of a sudden having something like this thrown in is definitely challenging and frustrating at the same time," Paul Porter said.
He and his wife are now in the middle of shopping for a new plan that complies with the Affordable Care Act. He said the old plan didn't meet some of the requirements, according to a letter from the insurer.
The options the family is weighing have premiums that are more than double the premiums under their previous plan, Paul Porter said.
Additionally, the Porters said they had limited time to sign up for a new plan and didn't have all the information they felt they needed to make an informed decision. Like many others across the nation, they were also struggling to simply enroll through the federal website, healthcare.gov.
"Not knowing where she's going to be in treatment, it's just the uncertainty of it," Paul Porter said.
Health administrators maintain navigators, though stretched thinly in the region, are available to help people enroll. Paul Porter did say the family was now working with somebody to help them navigate through their questions.
Utah Health Policy Project communications director Jason Stevenson said most families dealing with conditions like cancer will be able to find better options than they had prior to the Affordable Care Act.
"Generally folks with cancer, with pre-existing conditions, are finding both their rates much more affordable and finding their options more widespread," Stevenson said.
The Porters, however, point to their case as evidence not all is well with the system, and offered a message to other families.
"Enjoy having a healthy family while they can and pray. (We hope) that they never have to go through something like we've had to go through," Paul Porter said.