‘I AM NOT AN EXPERIMENT’

He was always crazy. Crazy as in lovable. But now he’s sick. He may be dying. He has this weird disease that has reduced him to a husk of his old large self, affected his walking, breathing, digestion, even robbing him of the simple action of rising from a chair without falling over. Finally, after two years of depressing decay, he has found a drug that helps, that might even save him, but his insurance company doesn’t want to pay for it and his employer agrees with the decision. They call it “experimental.”

“I am not an experiment,” he says.

No. He is a man. A good and goofy and gentle man, 48 years old, and what he is going through in the world of health insurance you might yourself go through one day – and heaven help you if you do.

Steve Nickerson, who stands 6-feet-4, with unkempt, straggly hair, worked as a photographer for this newspaper for 10 years, shooting everything from the Pistons’ first NBA title to a midwife in rural Kentucky. And when I call him crazy, I mean that in the best way. Crazy the way photojournalists are often crazy, always dropping to a knee -click-click-click – or jumping on a chair -click-click-click- or doing throaty voices of aliens and madmen and -click-click-click- see, he made you smile -click-click-click.

He moved to Denver, got married and went on to win two Pulitzer Prizes as part of a team with the Rocky Mountain News.

He knows how to make a good picture. But his own picture keeps coming out badly.

A dreadful disease

It started four years ago, when he felt numbness in his extremities. He wrote it off to the cold Denver weather. In late 2003, he was on assignment, photographing blind people choosing their Christmas trees, and his fingers went so numb he had to focus the camera with his palms. He ran back to his car and shoved his hands over the heater. What was happening?

Soon he began to feel sluggish. He went to a doctor who noticed a woody texture to the skin on his forearms. The skin on his legs was hard and stiff, too. He went through countless tests and countless pills. His jaw wouldn’t work right. Swallowing became difficult. His digestive system went crazy. He lost weight, then he lost more weight. Normally a beefy guy, he lost 65 pounds. He couldn’t keep food in him.

He told only his wife and kids. He continued to work full time, doing all his newspaper photography assignments, fighting diarrhea embarrassingly often. “I got to know every Conoco station toilet really well,” he says. “One night I had to use the bathroom 22 times. I felt like I was passing myself coming and going.”

Finally, doctors determined the problem. Nickerson has a rare disease called scleroderma (systemic sclerosis), in which the immune system turns traitor; instead of protecting the body, it actually attacks its tissues, producing too much collagen, hardening the skin in patches, affecting the hands, arms, legs, face, even the internal organs – heart, lungs, kidneys.

In serious cases, it can be fatal.

Nickerson is a serious case.

“I remember crying in the parking lot when I was first diagnosed,” he says. “When you go to the Web, and you see this disease can kill people, you automatically think it’s you. The whole frailty of life just hit me in the face.

“I got angry. I could lose it in a single moment. Every little thing set me off.”

Bottling it up made it only worse. He grew depressed. His wife, Karen McClean, did all she could to keep him level. Together they painted wild colors on the walls of their suburban home – green walls, orange walls, blue walls – taking out in slopping paint what they couldn’t take out anywhere else.

Then, in May of last year, Nickerson was on assignment at a policeman’s funeral. He squatted low as the officers proceeded down the street – and he couldn’t get up. Instead, he fell flat onto the pavement.

“Suddenly,” he says, “there was this sea of blue and white gloves trying to help me up. I was hugely embarrassed. I made up some story about having just had foot surgery. And I humbled my way to the back of the crowd.”

After that, he told his employer about his affliction. And as his body broke down, he intensified his search for treatment.

“I was,” he says, “on borrowed time.” A wild ride on the job

Now, you should know about the other Steve Nickerson. Not this thin, embattled man undergoing treatment, but the hulking, wild-eyed Ichabod Crane he used to be in his days in Detroit, when going on assignment with him was like being squeezed in a front seat between Robin Williams and Hunter Thompson. I have never known a man who could talk that fast, rat-a-tat-tat fast, stringing phrases together like some gonzo science fiction junkie.

But beneath that wild, frenetic exterior beat the heart of big softie, who would cry easily, who would give you a mighty bear hug, who charmed senior citizens and immigrants and children, who spent months chronicling a dying kid in a wheelchair whose last passion was Michigan’s Fab Five basketball team. Those are the kind of stories Nickerson liked to tell with his photos.

He was creative. Even controversial. He once did an “artsy” photo for the Free Press that featured a stuffed deer’s head behind the wheel of a truck, with a male model lying roped across the hood. Some readers screamed. I’m betting the deer liked it.

Nickerson met McClean, the love of his life, at a photography workshop in Aspen, Colo. They were married on a beach in Australia, under a full moon, with her two children, Alex and Kristin, alongside. Nickerson has been as involved and as proud of those children as any biological father could be.

It is for them, and for his wife, and for his art, and for his unquenchable spirit, that he wants to stay here, on earth, among the living. Is that asking too much?

Science provides a hope

He found an answer – at least a temporary one, after countless other failed drugs and treatments – at Johns Hopkins University in Baltimore, where a doctor named Fredrick Wigley runs the Scleroderma Center. Wigley, who opened the center in 1990, examined Nickerson for a long time. He put him on a treatment program of IVIG – intravenous immune globulin – which is prepared from healthy human plasma and put into the patient through an intravenous drip. The process is slow, taking several days each time. Wigley recommended monthly treatments.

Nickerson did one.

Then he did the second. And amazingly, for the first time, he felt progress. He got some movement back in his extremities. He was able to get up from a sitting position without toppling over.

“I finally had hope,” he says.

Although the treatments were very expensive – around $35,000 each when all is added up – Nickerson’s insurance company had no objections to the first two, according to Tamara Anderson, a patient financial advisor at the Rocky Mountain Cancer Center where Nickerson received the treatments. She says she contacted Aetna herself, she has a document logging the call and the response, and “they said it was covered” and “there was no authorization necessary.”

Then, after the second treatment, a letter arrived asking for details.

Then another letter.

Aetna was denying Nickerson’s claim for any more treatments – because, in its view, they were “experimental.”

And it wasn’t going to pay for the first two treatments, either.

Stating his case

Can you imagine suddenly discovering you are on the line for hundreds of thousands of dollars? That a medicine that seems to work – that is covered by insurance for dozens of other maladies, some of them closely related to this one – a medicine that is administered not in some cave in Mexico but in a prestigious hospital, prescribed by a top-flight doctor, is still considered experimental?

And if you don’t come up with the money, you might die?

Nickerson, who was scheduled for 13 treatments, appealed the decision. His doctors wrote letters, imploring Aetna to reconsider. Wigley was especially passionate:

“If he responds to the IVIG, we may not only be improving his quality of life, we may prolong his life. … Please consider this patient as if he were a member of your family and needed this important therapy. …”

The second answer – which came in a letter from the Scripps Choice Plan, the health-care program for the Rocky Mountain News, which is owned by the EW Scripps company – was no better than the first. It agreed with Aetna’s decision. The therapy was “experimental.” It also supported claims that Aetna never approved the first two treatments, so nothing would be paid.

In what the letter termed “the final determination of your right to benefits,” the answer was summed up by two words.

Denied. Again.

The official explanation

So I called Aetna myself. I tried to reach the executive chairman, John Rowe. Since he is a physician as well as a businessman, I figured he would have answers. Also, since Rowe reportedly earned $22.2 million in total compensation last year – the sixth-highest paid CEO in his field, according to Forbes – and Aetna last year declared profits of $1.63 billion -$1.63 billion? – perhaps he could tell me why, with doctors imploring Aetna to reconsider Nickerson’s case, the answer was still no.

Rowe never called back.

Instead I got a call from a very pleasant woman named Wendy from media relations who took the information, looked into it, and, after two days of phone calls, came back with a written statement, which said, in part:

“Aetna does not cover the use of IVIG therapy for scleroderma as this use is considered experimental and investigational.”

Again I wondered, how can this be? I spoke with a specialist in Israel, Dr. Yehuda Shoenfeld of the Sheba Medical Center in Tel Aviv, who has published findings in numerous highly respected journals, showing success with IVIG for scleroderma. He has seen positive results in more than a dozen patients himself.

“It should not be considered experimental,” he said emphatically. “The problem is, the companies making the drug have not done double blind studies”- where one group gets the drug and one gets a placebo.

“Why not? Because these studies are expensive and the companies producing IVIG are selling whatever they produce. So they have no incentive to finance big studies. This is to the insurance companies’ advantage. This way, they don’t have to pay. They can keep calling the drug experimental.”

Wigley echoed that: “I think it has to do with money. IVIG is expensive. … Many drugs we use every day are approved for one thing and doctors use it for another – a drug company isn’t going to get FDA approval for every indication – and in many cases insurance companies routinely pay for such uses. But that’s because they’re cheap. When they get expensive, then they can say, ‘Wait, that’s experimental.’ “

Fighting the good fight

So what is the lesson here?

You had better check your insurance policies. Just having one is fool’s gold. In the end, it might be more about your employer than the insurance company anyhow.

EW Scripps “is a company that is known for integrity,” said John Temple, publisher and president of the Rocky Mountain News. “… My experience tells me that the company does what’s right. …

“On the other hand, Scripps follows the determinations of Aetna regarding what is considered an experimental treatment and what is considered clinical treatment.”

Temple, who seemed clearly torn when we spoke, suggested the old worry, that if a company approved something experimental for one person, it would have to do it for another and another. But he did not sugarcoat the parent company’s decision.

“In the end, Scripps was the one who denied the treatment,” he said. “That’s true. Nobody feels good about that. Everybody feels for Steve.”

But nobody feels what Steve feels. Nobody has to fight to make his legs work, or to suffer chest cramps, or to see his skin as hard as a sleeve.

On Thursday, at the Oxford Hotel in Denver, some friends and colleagues have organized an auction of photographic prints to raise money for Nickerson’s medical expenses. Photographers have donated works from around the world. Some have never even met Nickerson.

He is humbled by the outpouring of support. And he is embarrassed by it. He wants to be his crazy old self, a ball of gonzo energy, but his body won’t let him.

“Somebody told me it was really brave to ask for help when you need it,” he says. “I now realize that was true.”

So he plows ahead, continuing the treatments, running up every credit card, accepting help from wherever it comes. He keeps working, even when he’s exhausted. He keeps making good pictures, even when his own is so blurry. The thought of an empty bank account and financial liability scares him, but not as much as the alternative.

He is a man, not an experiment.

But this is what the American medical system can come to.

A colleague recently asked Nickerson: “What happens to me in this case?”

It’s a question worth asking yourself.

The answer may be scary.

Contact MITCH ALBOM at 313-223-4581 or malbom@freepress.com. Catch “The Mitch Albom Show” 5-7 p.m. weekdays on WJR-AM (760).

HOW TO HELP

Those wishing to help defray medical costs can do so via:

The Steven R. Nickerson Medical Donation Fund, P.O. Box 3060, Denver, CO 80201.