Healthcare reform is about lives, not just politics

Dale Berman doesn’t just have a rooting interest in the Supreme Court upholding the healthcare reform law. You could say his life depends on it.

Berman, 54, of Burbank is a freelance photographer who has hadCrohn’s diseasehis entire life. Crohn’s is a severe intestinal disorder that can cause intense pain and a variety of complications. Berman has had to undergo three operations and has been hospitalized on numerous occasions.

He’s also watched as his insurance costs have steadily increased over the years, forcing him to seek refuge in government programs for “high-risk” patients who are unable to receive affordable coverage from private-sector insurers.

Berman is now in California’s federally funded Pre-Existing Condition Insurance Plan, created by the healthcare reform law as a temporary refuge for people awaiting establishment of so-called insurance exchanges in 2014 and the prospect of insurers not being able to deny coverage to anyone.

That prospect, and the exchanges themselves, are now in jeopardy if the Supreme Court decides to throw out a requirement that most people buy coverage, as many now fear. If that happens, the entire reform law could crumble.

Millions of people like Berman could then find themselves at Square One, left to fend for themselves in a healthcare system that openly discriminates against the sick and leaves many destitute as the bills pile up.

“It’s terrifying,” he told me. “I don’t sleep at night thinking about what could happen.”

We probably won’t know until the end of June how the court will rule on healthcare reform. But judging from the tenor of questions posed by most of the conservative justices, it seems highly possible that the insurance mandate will be declared unconstitutional and that the rest of the law will be sent back to Congress for a rewrite.

Considering it took almost 20 years for Democratic lawmakers to find the wherewithal to tackle healthcare since the last time they got burned by conservatives on this issue, it’s hard to imagine much willingness to attempt a do-over, at least any time soon.

Not to be alarmist, but this could be the last stab at healthcare reform many of us will see in our lifetimes.

Berman’s experiences with the healthcare system are instructional for what’s at stake.

Most people with preexisting conditions have to rely on landing a job with group coverage if they want health insurance. But people with Crohn’s often have difficulty with full-time jobs because of the unpredictability of their disease. They’re sometimes incapacitated for days at a time.

Berman said he was able to enroll in 2003 in a plan offered by a photographers trade association. The plan initially cost $3,500 a year and came with a $2,500 deductible.

By 2008, however, the plan’s annual rate had more than tripled to about $12,300, and Berman was informed that it would jump again in 2009 to roughly $18,000.

“That would have been nearly half my income at the time,” he said. “I couldn’t afford to pay it.”

So Berman turned instead to California’s Major Risk Medical Insurance Program, the state’s insurer of last resort for people with chronic conditions. His annual premium ran more than $13,000 and coverage was capped at $75,000 a year.

Berman was hospitalized at UCLA in 2010 for an intestinal blockage. While he was there, a hospital staffer stopped by his bedside and informed him that his treatment would surpass his $75,000 insurance cap.

“They wanted to know how I was going to pay for everything,” Berman recalled. “I was dehydrated. I was weak. I’d lost a lot of weight. But all I could do was check myself out of the hospital to save money.”

It was a frightening moment. As Berman made his way home that day, the only thought in his mind was, “This is how the system is supposed to work?”

So he switched again, this time to the Pre-Existing Condition Insurance Plan, or PCIP, which costs only about $4,500 a year and has no limit on how much treatment will be covered annually. To be eligible for the program, Berman had to forgo health insurance for six months, but he decided the risk was worth it.

“I was lucky,” he said. “I didn’t need to be hospitalized during that time.”

More than 9,000 Californians are in PCIP, but the plan was always intended to be a temporary stopgap. Once the insurance exchanges are up and running, people in the program would shift to policies offered by private insurers that, under the terms of the healthcare reform law, would be prohibited from turning anyone away.

But what happens if the reform law is cut down by the Supreme Court? Where would PCIP participants go?

Jeanie Esajian, a spokeswoman for the state program, declined to speculate.

“We think this discussion is very premature,” she said. “We have no reason to believe we won’t be transitioning people to the exchange after 2013.”

The plan has already received $347 million in federal funds for the year, Esajian said. Funding for next year and beyond has yet to be allocated.

If the reform law collapses, there doesn’t seem to be any mechanism for PCIP funds to continue flowing from Washington. Nor does it seem likely that the exchanges would work as intended if insurers are no longer required to cover anyone who comes calling.

That would give people like Berman few choices. He could turn once again to his photography association for coverage, but the annual cost had soared to more than $25,000 by last year for the HMO version and $36,000 for the PPO plan.

The state’s high-risk plan, meanwhile, is currently charging about $13,300 for people in Berman’s position and still has that $75,000 annual spending cap.

So Berman, like so many others with preexisting conditions (myself included), is watching the Supreme Court closely. He’s paying particular attention to Justice Anthony Kennedy, whom many regard as the swing vote on the issue.

“My whole financial future is in Kennedy’s hands,” Berman said.

Healthcare reform isn’t an abstract legal issue. It isn’t a political game. It’s a very real concern for millions of Americans, in some cases a life-or-death matter.

The justices should keep that in mind.

David Lazarus’ column runs Tuesdays and Fridays. He also can be seen daily on KTLA-TV Channel 5. Send your tips or feedback to david.lazarus@latimes.com.