Nearly 500,000 Utahns have pre-existing conditions; are at risk of losing health insurance

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As Kandie Bodrero sees it, losing her insurance accelerated her cancer.

Diagnosed with spinal tumors, the Lehi woman was scheduled for her last session of radiation when her husband lost his job in 2009. They couldn't afford the $1,800 tab to temporarily extend their health insurance, never mind the $12,000 needed for treatment. She found coverage to cover doctor visits, but not the radiation.

On Thursday, she learned the therapy she recently received -- after her husband found a new job with insurance -- didn't work. She will likely need chemotherapy and surgery for her stage 2 multiple myeloma.

"When I had to forgo treatments for a year, it made it grow back," said the 45-year-old mother of two, whose type of cancer usually relapses. "I couldn't get a policy anywhere else. They're telling me, 'You're in cancer treatment. We're not going to cover you.'"

According to a new report, 476,000 Utahns have been diagnosed with a pre-existing condition like cancer, which puts them at risk of not getting care due to insurance industry practices.

That will change in a limited way this year and permanently in 2014, due to federal health care reform passed in March. The law will stop insurers from denying people with pre-existing conditions coverage, or charging them higher rates, or providing them policies that don't cover their illness, according to Families USA, the report's author.

The new law "will protect all these individuals from the most harmful insurance company abuses that deny such critical coverage," executive director Ron Pollack said in a media conference call Thursday. The non-partisan group advocates for health insurance for all Americans.

Utah-based insurance company SelectHealth maintains premiums will jump an undisclosed amount when sicker people join the policies. "Asking individuals to meet pre-existing requirements allows insurance carriers to keep costs lower for their subscribers," said SelectHealth spokesman Spencer Sutherland.

In all, Families USA estimates 57.2 million Americans under age 65, or 22 percent of the non-elderly population, have been diagnosed with a pre-existing condition, including diabetes, multiple sclerosis, having had heart surgery or an organ transplant. People over age 65 are eligible for Medicare, where they aren't denied coverage.

In Utah, 20 percent of the non-elderly population has been diagnosed with a health condition, including 51,600 children.

The report says the estimate is conservative: It only includes people diagnosed and treated in 2007 for 69 conditions that commonly lead to denials of coverage, though there are more. It doesn't include people who could be denied for taking drugs for arthritis, cholesterol or other conditions.

Few Americans with those health problems have been denied coverage, Pollack acknowledges. Most Americans get their insurance through large employers, where they can't be turned away or charged higher premiums based on their health.

But Pollack noted they are vulnerable if they have to seek individual polices after losing or changing jobs, or if they want to start a business. In businesses with two to 50 employees, people with health conditions can get coverage but the entire group is charged higher premiums.

"Insurance companies will no longer make money by how well they avoid risk," said Judi Hilman, executive director of the advocacy group Utah Health Policy Project. "Instead, they will compete on the basis of how well they keep us all healthy."

Susan, a Utah woman with multiple sclerosis, applied for a job at a company with a handful of employees. She disclosed her condition and the company was told its premiums would jump 75 percent.

She is still seeking work and didn't want her surname published for fear it would hurt her chances of getting hired. The mother of three is insured now, but will lose coverage once her expected divorce occurs. She is putting that off until she finds benefits, with medication costs reaching $3,000 a month.

"I've called insurance companies to get a separate insurance policy for me," she said. When they learn she has MS, she is told, "There's no reason to apply because you won't be qualified at all."

Diagnosed with rheumatoid arthritis, Annette Jackson is also uninsurable. The West Valley City resident can't find full-time work, limited by the economy, her illness and a past work-related injury.

She hasn't had insurance since 2001, which means she delayed seeking care when injured a rotator cuff. She can't afford joint replacement surgery in her knees, so she lives in constant pain.

The 61-year-old feels like she's been put out on an ice floe. "It's so frustrating there isn't a way I can buy insurance," she said. "To even think it could be better is so wonderful."

As a volunteer with the American Cancer Society, Bodrero knows of other cancer patients who struggle to pay for their care.

"It all comes down to a person might be able to survive if they could get insurance coverage," she said.