A case study in healthcare hell

Jovan Rodriguez, an Orange County supermarket clerk, awoke one day with a stiff neck. He got up to go to the bathroom, felt kind of lousy and went back to bed.

When he woke up again, the neck was throbbing. Rodriguez looked in the mirror and did a double take. Knobbing up on the right side of his neck was a bubble the size of a golf ball.

Spider bite? That’s what he figured.

This all happened three years ago, when he was 22, carefree and worked out regularly. He was invincible.

But the lump was growing by the hour, quickly expanding to nearly the size of a tennis ball. He had to see a doctor, but was uninsured. In fact, he’d never had insurance. He hadn’t been working long enough at Albertson’s to qualify, and his mother, who managed property for a real estate company, couldn’t afford a healthcare plan.

So Rodriguez paid cash when he went to see a doctor, who suspected the lump was caused by an infection, food poisoning or an allergic reaction. But after two rounds of tests, at a cost of about $2,000, most of it on his mother’s credit card, Rodriguez got a diagnosis he couldn’t believe.

“They said it was cancer.”

Hodgkin’s lymphoma, to be precise.

In a state of shock, Rodriguez drove to his mother’s office, but couldn’t find her.

“I felt like a little kid, looking for my mom. That was when I got scared.”

He found her boss instead, who told him not to worry.

“We’re going to beat this,” said the boss.

But Rodriguez soon discovered that he’d be fighting a two-headed beast — the cancer and the healthcare system. Doctors told him he needed surgery to remove tumors on his neck and lung, followed by chemotherapy.

But he was too old for California’s Healthy Families insurance program and too young to qualify for Medicare or Medi-Cal. And even if he could have afforded private health insurance, no company would have signed him up because of his cancer.

His life on the line, Rodriguez spent the better part of two months fighting for insurance.

“I’d go to the Medi-Cal office and they’d say I had to go to Social Security disability. I’d go there and they’d say I had to go to Medi-Cal.”

He was told to stand in lines only to have someone tell him he’d been in the wrong line. He filled out forms the bureaucrats later claimed to have misplaced. He called and was put on hold for up to 30 minutes, only to be told to call a different number.

“It’s like having a job,” said Rodriguez.

None of this was a surprise to his Covina oncologist, Phyllis Klein, who knew it was time to play hardball with the bureaucrats. Klein was aware that Medi-Cal might provide coverage if Rodriguez were diagnosed as terminal and in need of hospice care, so that’s the diagnosis she gave.

It wasn’t much of a stretch. Without treatment, Klein said, “he was going to be hospice material.”

It worked. Rodriguez got Medi-Cal coverage, the surgery was a success, and the chemotherapy was horrible but effective.

With his new life, Rodriguez enrolled at Cypress College, hoping an education would lead to a job with health insurance. He has a girlfriend now and works at a pizza parlor. And everything was going fine until late March, when Medi-Cal dropped his coverage, saying he’d failed to return some renewal forms.

“I never got any forms,” said Rodriguez, who keeps everything connected to his illness in a carefully organized filing cabinet. He began a new round of battles with Medi-Cal but was told there’d be no reconsideration.

Rodriguez seemed relatively composed for a guy who will need expensive screenings every few months for years to come and no way to pay for them.

“I’ve got a calm button in my head. A relax button,” he said, having survived a brush with death that left him feeling lucky rather than unlucky. “I’ve got my arms and legs; I’m not disabled,” added the 25-year-old, who recently volunteered at a camp for young cancer patients. Yet he knows he’s got to figure something out fast.

New federal healthcare reform legislation, which might help down the road, won’t provide any relief in time to pay for the tests he needs next month.

When I asked Dr. Klein about that, she said she stopped following the healthcare reform debate when the public option — the very thing Rodriguez now needs — was dropped from consideration.

“He’s not 100% cured by any means,” said Klein. “His progress has been good, but cancer can recur locally and you can develop second cancers.”

So what should he do? I asked Klein, speaking to her by phone with Rodriguez by my side in his girlfriend’s living room.

He can go through the bureaucratic hell of getting treated at the county hospital, she said, but that will take about six months. Or he can try to interest a local legislator in taking up his cause with Medi-Cal.

Rodriguez said he’ll try the latter.

Is there a state legislator or congressional representative in Orange County who’d like to help him?

steve.lopez@latimes.com