Treating what ails us

Second of two parts

In 1998, the FDA approved Enbrel for the treatment of rheumatoid arthritis.

It was the first of a new class of biological drugs – medications created out of living cells. The medicines interfere with the body’s immune response and block inflammation in people with arthritis and other autoimmune diseases.

The use of these drugs has exploded in the past decade. For most people who take them, the drugs relieve the symptoms of arthritis and stop or slow the degenerative aspects of the disease – the irreversible deformity and joint damage.

The medications are also big business. Immunex, a Seattle biotech lab, spent millions and millions to develop Enbrel; a lot of the research on the drug in the 1990s was conducted in Spokane. Biotech giant Amgen bought Immunex for $16 billion in 2001. This year, sales of three biological drugs for arthritis are expected to top worldwide sales of all drugs, according to the journal Nature.

Dr. Jeffrey Butler, my rheumatologist, has seen the treatment of arthritis change dramatically in his 21-year career. When he started, rheumatologists were mostly treating symptoms; with the new biologics, they are attacking the disease itself.

Butler is a partner in Arthritis Northwest, where he sometimes teaches residents. These days, doctors in training are seeing an entirely different sort of arthritis patient than they would have 10 or 20 years ago – when gnarled hands and joint deformity were much more evident.

“They come in and look at someone with rheumatoid arthritis – and they can’t even tell,” he said.

For “the vast majority” of patients, the drugs reduce pain and stiffness, increase range of motion and put a stop to the degeneration and deformity of joints, Butler says. I am one of that majority. Whereas I once had periodic outbreaks of psoriatic arthritis – the combination of psoriasis and chronic arthritis – that made it painful to do the simplest tasks, I am now more or less free of the symptoms. I call my medicine, Remicade, my miracle drug.

But it’s not a miracle. It’s an amazing technology that is fraught with questions and ramifications, risks and rewards. For one thing, there are what researchers call “pharmacoeconomical considerations” – it’s wildly expensive. Thousands of dollars per dose. And the medications have a range of side effects that are, in the rarest, most extreme occasions, deadly.

Because the drugs work on the immune system, they make you marginally more susceptible to infections. At high doses, Remicade may increase the rate of certain cancers, according to a Mayo Clinic analysis of clinical studies. But even that estimated increase remains very, very small – in one study, the incidence of lymphoma in the general population and among those on Remicade were below one-tenth of 1 percent – and these calculations are filled with uncertainty, given that arthritis itself increases the incidence of some cancers.

These rare, worst-case scenarios are not something that arrived with these new drugs; they’re a part of modern health care. Ask someone who’s gone through chemotherapy about the axis of risk and reward. Look at any medication, and the list of side effects – very real, very rare – is long.

Which is to say nothing of the cost.

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Every six weeks, I get an infusion of Remicade. The cost is around $6,900; my insurance company pays about $5,300, and the balance is written off. I pay $55, and I get a reimbursement through my Flex plan, so it feels like I don’t pay even that.

If I paid out of pocket, the annual cost would exceed my salary.

In other words, my boss and my co-workers pay for my miracle drug. And my boss and my co-workers – like all of us – are paying more and more for health care generally, in no small part due to our excellent, groundbreaking care. Over the past five years, health care premiums at Cowles Co., which owns The Spokesman-Review, have increased by about 21 percent, on average.

Nationally, premiums for employer-sponsored health plans have risen by 113 percent since 2001, according to the Kaiser Family Foundation. The steep increase has eased in recent years, the foundation says; still, health care spending is projected to rise faster than national income for the foreseeable future.

Dr. Butler says none of his patients pay out of pocket for Remicade. Most are insured, and the different standards and requirements for coverage creates a paperwork challenge, he said. Then there is the considerable number of people without insurance. Seventeen percent of Americans are uninsured. Among Spokane County residents ages 35 to 64 – the years when arthritis is most likely to set in – more than 12 percent of residents are uninsured, according to state estimates.

“We see a lot of people who are have-nots,” Butler said. “We have a lot of people in Spokane without insurance.”

But Butler says these drugs are actually fairly accessible to the uninsured. Drug companies cover the cost for some low-income patients, and there are foundations that do so, as well. Butler’s office works to find other ways to get patients treated as well, including directing them toward ongoing research trials, which are common at Arthritis Northwest and other clinics.

“It’s rare for me to have a patient I absolutely can’t get these treatments for,” Butler said. “Ten years ago that was not necessarily the case.”

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I’ve wondered for years about the larger effect of drugs like mine, as the country has struggled to deal with rising health care costs.

Dr. Gerard Anderson is the director of the Center for Hospital Finance and management at Johns Hopkins Bloomberg School of Public Health in Baltimore, and a health systems researcher. I called him recently and asked him if my miracle drug and the way I get it is a problem for the system.

“It’s one of our problems,” he said.

For most of us, health care is practically a “free good,” he said, which we consume without feeling much consequence. I don’t experience the cost of my drug, he said, and that makes it easier for me to choose the high-cost, high-quality option. What if instead of paying $55 per dose, I had to pay $500 – still a fraction of the overall cost? If we all had to make those kinds of calculations, Anderson said, some of us would choose less-expensive care.

But Anderson said almost none of us who get any significant amount of health care pay our way. This sharing of costs – this socialization of costs – is crucial. People with insurance subsidize those without. Healthy people in an insurance pool subsidize people who need expensive treatment. Almost no one who needs much of our excellent health care can afford it.

One way or another, these costs get spread around, averaged out.

“It is an absolute necessity,” he said. “None of us can afford to pay for it when we get hit by a bus. None of us can afford chemotherapy if we need it.”

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I remember my grandmother, in the final years of her life, sitting in her recliner and rubbing her hands unhappily – enormous knuckles, twisted fingers – and taking deep, calming breaths. You felt pain radiating, rippling off her like heat.

There are a lot of ramifications, questions and problems surrounding our health care system – the high costs, the science, the accessibility, the fact that some of us have access to amazing, high-tech medical care and some of us don’t have access to a family doctor.

I’m a health care mooch – I get more than I pay for. But for me, the selfish bottom line is this: I am a 46-year-old man with 20-year-old arthritis and a 4-year-old son. And I can keep up with him. Sort of.