Within months of graduating from high school, landing an auto collision repair job and moving into his own apartment, Joshua Kahn was diagnosed with cancer.
Hodgkin's lymphoma is highly treatable and the chemotherapy started last fall was going well for the St. George teen.
But on Dec. 1, Kahn turned 19 and was cut from Medicaid, putting a halt to his treatment. In Utah, adults who don't have children no matter how poor don't qualify for the low-income health program unless they are disabled.
Kahn's mother, Julia Buckner, said her son's situation highlights the injustice of Utah's dithering over an optional expansion of Medicaid through the Affordable Care Act.
Kahn is among 123,000 uninsured Utahns who would be covered if Utah determined eligibility solely on income, as envisioned by the health law. Instead, Kahn's access to care hinges on his age, ability to work and whether he has a wife and kids.
"I thought that cancer was our biggest battle until I tried getting health care coverage for our son," she said.
The hospital has arranged a payment plan to allow Kahn to finish his first round of chemo. But without insurance he's unable to get a PET scan to determine whether he needs further treatment or radiation.
"I have this [chemo] port sitting under my skin that I can't get removed," he said. "The biggest thing that scares me is the cancer could go backwards and get worse."
Appeals to the state, including written notes from Kahn's doctor who says he's unfit to work while undergoing chemo, weren't enough to convince officials to reinstate his coverage, Julia Buckner said.
Under federal rules, cancer patients generally aren't deemed disabled unless their disease is severe enough to prevent gainful activity for a prolonged period of time.
"Evidence in your file indicates that you are unable to work at this time. However, your condition is expected to improve and should not prevent you from returning to work for a full 12-month period," said a Nov. 13 denial of Kahn's disability claim with the state Department of Workforce Services.
Kahn's rosy prognosis, however, hinges on treatment, Buckner said of the Catch-22 her son faces.
"The caseworker actually suggested having him reapply based on him not being in treatment because without treatment his cancer is terminal," she said.
Kahn can't get on his mother's insurance because she is disabled due to a spinal cord injury and on Medicaid.
He could buy private coverage on the new federal health exchange, healthcare.gov but he falls into another health care gap.
Because his income is below the federal poverty level, he doesn't qualify for federal tax credits. He is too poor, in other words, to get subsidized health coverage a gap that exists only in non-expansion states.
"This isn't just a gap, it's a gorge," Buckner said. "This is bigger than Josh and my family. I'm sure there are other families in this situation."
If Kahn lived in neighboring Arizona, a red state and one of 26 states to have already accepted federal dollars to expand their Medicaid programs, he would be covered.
Utah lawmakers worry about future state costs but are edging closer to a compromise, a conservative alternative to a full expansion. Republican Gov. Gary Herbert has stayed on the sidelines but has said he'll weigh in during the Legislative session starting Jan. 27.
And the White House is ready to make a deal.
"We'll be flexible with any state that wants to lean forward and cover more of its people," said David Simas, a special assistant to the president.
And as proof, he pointed to the state of Iowa, where Gov. Terry Branstad, a Republican, struck a deal with federal health officials in December. The state would expand Medicaid, but those who sign up have to use federal dollars to pay for a private managed care policy through healthcare.gov. And those who sign up through this hybrid Medicaid plan must participate in preventative health checks or pay a fine.
Simas said the administration is ready to be flexible, but it pushed back strongly against states where governors have rejected the expansion entirely.
"People want it. Your residents want options and choices. They want to be covered," Simas said. "It is just the right thing to do."
For Buckner and her son, Utah's decision can't come soon enough.
"We are running out of options," said she said. "It's unfathomable to me that the state would deny a person with cancer access to health care ... He just wants to be healthy and productive."
Tribune reporter Matt Canham contributed to this story.
Utah-style Medicaid expansion
A legislative task force has endorse three alternatives to a full Medicaid expansion:
• Do nothing and keep Medicaid eligibility rules as they are now.
• Use public dollars to buy private insurance for residents with incomes under the federal poverty level. Those earning at least the poverty level or up to 138 percent of that amount would shop with federal subsidies on the federal health exchange, http://www.HealthCare.gov.
• Use public dollars to buy private insurance for the full expansion population, those earning up to 138 percent of poverty.