First of two parts
Every six weeks, I drive to the Sacred Heart Doctors Building, take the elevator to the sixth floor, go to my doctor’s office, sit down, and wait for them to stick a needle in my vein and deliver 700 milligrams of what I have come to consider my miracle drug.
That little pouch of medicine – infliximab, trade name Remicade – delivers me almost completely from the aches, pains and accumulative degenerative effects of a form of rheumatoid arthritis. It works vastly better than anything I have ever taken in the roughly 20 years since I was diagnosed with the disease. And if it weren’t for the way we pay for health care – the way we spread it around – there is no way on Earth that I could afford it.
This is the story of me and my miracle drug, its costs and rewards, and an unseen corner of this subject that I hadn’t counted on: the central role Spokane has played in the development of arthritis treatments.
Rheumatoid arthritis is a chronic autoimmune disorder that causes inflammation in the joints and surrounding tissues. About 1 percent of the population has it, and it afflicts three times more women than men. It causes pain, stiffness and limited mobility, and over time it can cause severely debilitating deformities in joints, a wide range of other negative symptoms and even early death. It is different from osteoarthritis, or “wear-and-tear” arthritis; there is no known cause or cure.
I was diagnosed with psoriatic arthritis when I was in my late 20s – a relatively early onset, but not unheard of. My rheumatologist, Jeffrey Butler, treats people of all ages, including some toddlers.
For me, the disease was often uncomfortable – causing stiffness and soreness in this joint or that – and sometimes almost debilitating, seizing up my body in a hot ache and making the simplest activities painful. I recall times where I had to strategically turn my body sideways to turn doorknobs, to avoid a sharply painful grinding in my wrist. I remember nights where turning over in bed brought me sharply awake in pain. The psoriasis that accompanied the arthritis bloomed into bright red, scaly patches that clung stubbornly to the skin, my scalp, sometimes my face.
Many people with arthritis have it worse than I do. But on occasion, it was an all-consuming condition. Worse, there was only the prospect of things going downhill; inflammatory arthritis does irreversible damage to joints. At the time of my diagnosis, in the early 1990s, all that doctors could do was use various treatments to ease the symptoms.
“At that time, rheumatology was a really depressing specialty to go into, because it was felt we couldn’t really do that much,” Butler said.
When I started taking medicine for arthritis, there was no single drug that had been developed specifically for the disease. The treatments were all medicines that had been appropriated from other uses – malaria and cancer drugs that turned out to have some effectiveness on arthritis.
I tried many different ones, sometimes in combination with others. One of the drugs – the most common and effective drug at the time, and still a mainstay of arthritis treatment – was called methotrexate.
Methotrexate was developed as a chemotherapy drug in the 1950s. It inhibits the growth of certain cells; like other cancer drugs, it has serious, potentially life-threatening side effects for a small number of patients.
In 1967, a rheumatologist named Rex Hoffmeister, working out of Rockwood Clinic in Spokane, was treating a patient with a severe case of psoriatic arthritis. The patient’s psoriasis was in full bloom all over his body, and his arthritis had flared up, as well. He was miserable.
At that time, dermatologists were using methotrexate to treat psoriasis, and this patient was given some. It worked to knock down the psoriasis, as hoped – but it also alleviated the man’s arthritis pain. Hoffmeister took note.
“We were grabbing hold of anything we thought might be effective,” he said.
Hoffmeister tried a lower, less-frequent dose of the drug – which had “toxicity problems” at higher doses – with some of his other patients.
“I got some good results – not dramatic,” he said. “But there was no question it was helping patients.”
He kept at it. By the early 1970s, his findings had been published and were being discussed among his peers. Within a decade, research into methotrexate as an arthritis treatment had expanded and been widely accepted. The drug exhibited an anti-inflammatory effect and was classified as a “disease-modifying” drug, because it helped limit the joint damage.
“It’s still the anchor drug for the treatment of rheumatoid arthritis,” said Hoffmeister, who’s now 83 and retired, and living in Zillah, Wash. “It was kind of dumb luck, I guess.”
Methotrexate is an effective drug for many. But the effects vary from patient to patient. In my case, it made me sick – nauseated and woozy – and it didn’t help with my symptoms as much as it did for others.
I took other drugs, in various combinations. When the symptoms faded, I wasn’t always good about taking them. My overall health, or lack of it, played some role, I’m sure. I’ve been overweight all my life, to varying degrees, and have strayed often from the path of wise and healthy living. One of the hard things about arthritis is that exercise and activity helps you feel better, but when you feel bad it can be damn hard to make yourself do it.
Shortly after moving to Spokane in 2000, I became a patient of Dr. Butler’s. In 2002, he suggested that I try a relatively new drug, Remicade. It was part of a new class of biotech drugs that had been on the market for a few years, and it was showing great promise. These were drugs from the brave new world of pharmacology: recombinant DNA. In essence, scientists use existing cells to create molecular clones that can be used to interfere with biological processes.
Many of Butler’s patients using the drug had more serious cases than mine – cases where joint deformities and dramatically limited movements were further along than my case. But one advantage of this drug at my age, if it worked, would be that it might prevent those problems down the road.
The drug was new enough that Butler had to write my insurer to get them to cover the medication.
The big breakthrough in the development of biologic drugs emerged from a Seattle lab, Immunex. In the 1980s and ’90s, scientists there focused on a key mechanism of the inflammatory response associated with arthritis: a cell-signaling molecule, or cytokine, called tumor necrosis factor-alpha. TNF-Alpha is like a messenger in the inflammation process, communicating between cells. The Immunex scientists developed a molecule that blocked TNF-Alpha.
This was potentially revolutionary, and not just for arthritis. Inflammation underlies a lot of health problems and diseases. The potential in treating arthritis with the TNF blockers was that instead of just treating the symptoms, doctors might be able to halt, or slow, the joint damage.
Immunex developed etanercept, or Enbrel. The first clinical trial for the drug included patients in Spokane, overseen by Dr. Scott Baumgartner at the Physicians Clinic. More trials followed, here and elsewhere during the 1990s, as Enbrel moved toward FDA approval.
Butler was working at Rockwood Clinic at the time, and would refer patients for the studies.
“We could see for ourselves, right here, that (people) were getting better,” he said.
SATURDAY: The risks and costs.
Shawn Vestal can be reached at (509) 459-5431 or firstname.lastname@example.org. Follow him on Twitter at @vestal13.