Take a deep breath, and read

I was on my way to the Encino home of a 10-year-old boy named Preston, but I could have gone in any direction for the same kind of story.

Ever since I wrote a few years ago about a San Gabriel Valley woman who had breast cancer and couldn’t get health insurance (her family resorted to a yard sale to pay her medical bills), I’ve gotten a steady trickle of similar tales. Last week, I had one involving an oncologist whose cancer treatment is not being covered because his health insurance company says his illness is a pre-existing condition.

Preston doesn’t have cancer, but he was born with cystic fibrosis. And the cost of the medicine that keeps him breathing just shot up like a rocket, thanks to an insurance company decision I’m still trying to decipher.

I’ll get to the details in a moment, but first, some political context.

The last place to expect a workable healthcare reform proposal is in a presidential campaign, and this one will be no exception in the end. There’s way too much money riding on keeping things as they are.

Here in California, Gov. Arnold Schwarzenegger and Assembly Speaker Fabian Nunez would have you believe they stepped into the leadership void with last month’s health insurance-for-all proposal.

But all they’ve done is come up with a shaky idea to require nearly everyone to buy medical insurance from the same companies we’ve all become so fed up with. Employers and hospitals would have to pick up part of the tab, and there might be a new tax on cigarettes to provide some support. But even if the vague and dubious funding proposals come to pass, there would be little or nothing in the way of additional controls on insurance companies in terms of what they cover or what they charge.

State Sen. Sheila Kuehl, one of the legislature’s strongest advocates of healthcare reform, eviscerated the Schwarzenegger-Nunez package in a Dec. 17 analysis you can read on her website ( www.dist23.casen. govoffice.com). She said if it came to pass, and insurance companies were forced to take on everyone who is now uninsured, premiums for the rest of us would balloon.

“And it seems to me that they will probably have to resort to more and more denials of care,” said Kuehl. Her single-payer proposal would take insurance companies and their profit machines out of the equation, but it has languished for all the predictable reasons, including the huge influence of the insurance lobby.

I began telling Kuehl about Preston and his family’s issues with their insurer, but halfway through I stopped myself, figuring she’s heard hundreds of similar stories.

“No,” she said. “It’s in the thousands.”

Preston, a cute, curly-haired lad with bright blue eyes, leads a relatively normal life, albeit with strict dietary restrictions and 20 pills a day. He showed me how he straps on a percussive vest twice daily. The vest is attached to a pump, and forced air makes it vibrate roughly, loosening the congestion in his lungs. That and an inhaled medication called Pulmozyme keep him breathing.

But last month, the cost of that Pulmozyme blasted through the ozone.

It had been running them $30 a month.

Suddenly it was $784.

“They never called,” Marla, who takes care of Preston and 5-year-old Tyler, said of Blue Cross.

“They never talked to our doctor,” said Jeff, a self-employed financial investor.

With no warning, the insurance company decided to pick up less of the cost, leaving Preston’s family to come up with an extra $9,000 a year for his medicine.

If a cheaper generic were available, they’d gladly switch. But they said there is no substitute for Pulmozyme, an enzyme-based medication that controls mucus secretions and was developed specifically for cystic fibrosis patients. Their doctor confirmed this.

“It was a big surprise,” Eithne Maclaughlin, of Childrens Hospital Los Angeles, said of the sudden price inflation. “And it’s very upsetting.”

Maclaughlin said several of her patients had been hit with the same spike in their co-pay cost.

“They’ve got you by the neck,” she said of any insurance company that jacks up the cost of breathing freely. “It’s all about money, let’s face it.”

At the Cystic Fibrosis Foundation, Laurie Fink said the trend was not limited to Pulmozyme, or to Blue Cross. A poll by the foundation found that 21% of people with cystic fibrosis have skipped doses of medicine to keep costs down and 13% have delayed seeking treatment for the same reason.

In Preston’s case, Maclaughlin cut his dosage back to see if he did OK on that regimen, which would save a big chunk of money for his parents.

Preston’s dad was not flatly contemptuous of Blue Cross, which he said has been a life saver for the family. (Not that their premiums are cheap, at $1,200 a month, even with big deductibles.) He also granted that Pulmozyme is extremely expensive -- the real cost of the medication is about $1,500 monthly in his son’s case, and Blue Cross had been picking up the bulk of the bill.

Hoping for an explanation, and reconsideration, Preston’s parents filed a grievance. Blue Cross quickly rejected it.

“Pulmozyme is no longer a Formulary medication,” said the virtually incomprehensible letter, which gallingly suggested the increase was part of Blue Cross’ commitment to providing its customers “the best possible care and access to medications.”

Preston’s parents are appealing the rejection to the state Department of Managed Health Care, which said it would have a ruling this month.

As I understand it, formulary drugs are essentially drugs a health plan recommends as effective yet less expensive alternatives to non-formulary drugs. Think generic versus non-generic. But in the case of Pulmozyme, a cheaper imitation does not exist.

When I asked Blue Cross for an explanation, I got this by e-mail:

“As with other health plans, the decision to add or remove a drug from the formulary is done through a review committee made up of medical experts. At Blue Cross, this group is the Pharmacy and Therapeutic committee. Pulmozyme is currently considered a specialty medication and is covered for our members, but at a higher member share of the cost than other medications. The goal of these ongoing reviews is to assure access to all necessary drugs while also keeping costs as affordable as possible for all of our members.”

Takes your breath away, doesn’t it?

--

steve.lopez@latimes.com