Practicing Patients
Todd Small was stuck in quicksand again. It happened, as always, on the floor of the Seattle machine shop where he worked. His shift complete, Small was making the 150-yard walk from his workstation to his car, when he realized that his left leg was sinking deep in the stuff. Though this had happened before — it happened nearly every day now — he stopped and glanced down at his feet. His Nikes looked normal, still firmly planted on the shop’s concrete floor. But he was stuck, just the same. His brain was sending an electrical pulse saying “walk,” but as the signal streaked from his cerebellum and down his spinal cord, it snagged on scar tissue where the myelin layer insulating his nerve fibers had broken down. The message wasn’t getting to his hip flexors or his hamstrings or his left foot. That connection had been severed by his multiple sclerosis. And once again, Small was left with the feeling that, as he described it, “I’m up to my waist in quicksand.”
For the 400,000 Americans with multiple sclerosis, Todd Small’s description will most likely ring true. Muscle stiffness is a hallmark of the disease, and “foot drop” — the term for Small’s quicksand feeling — is a frequent complaint. The condition is usually treated, as it was in Small’s case, with baclofen, a muscle relaxant that works directly on the spinal cord. Every day for 14 years, he took a single 10-milligram pill. “My neurologist always told me if you take too much it will weaken your muscles. So I never wanted to go over 10 milligrams.” It didn’t seem to have much effect, but he carried on as best he could.
Small would have continued just as he was had he not logged on last June to a Web site called PatientsLikeMe. He expected the sort of online community he’d tried and abandoned several times before — one abundant in sympathy and stories but thin on practical information. But he found something altogether different: data.
After choosing a user name and filling out a profile, Small was asked to list his symptoms and treatments. He entered the 200 milligrams of Provigil he takes daily to fight fatigue along with the Tysabri injection he takes to slow the progress of his disease. And then he clicked on baclofen, and the Web site informed him that nearly 200 patients registered at PatientsLikeMe were taking the drug. He clicked again, and up popped a bold bar graph, sectoring those 200 across a spectrum of dosages. And there it was. Contrary to what his neurologist told him years ago, 10 milligrams wasn’t the maximum dose. In fact, it was at the low end of the scale. “They’re taking 30, 60, sometimes 80 milligrams — and they’re just fine,” Small recalls. “So it hits me: I’m not taking nearly enough of this drug.”
A few days later, Small asked his neurologist to up his dosage. Now Small takes 40 milligrams of baclofen a day. His foot drop isn’t cured — there are no miracles in M.S. — but he has found that after 14 years, he can walk to his car without sinking into quicksand. “Oh, man, I really dreaded that walk,” Small recalled when I spoke with him recently. “All shift, it’d be in the back of my mind. Am I going to have trouble? Is it going to get me? Now I almost got it figured it out. I don’t struggle like I used to.”
There are a little more than 7,000 Todd Smalls at PatientsLikeMe, congregating around diseases like Parkinson’s
, multiple sclerosis (M.S.) and AIDS, all of them contributing their experiences and tweaking their treatments. At first glance, the Web site looks like just any other online community, a kind of MySpace for the afflicted. Members have user names, post pictures of themselves and post updates and encouragements. As such, it’s related to the chat rooms and online communities that have inhabited the Internet for more than a decade.
But PatientsLikeMe seeks to go a mile deeper than health-information sites like WebMD or online support groups like Daily Strength. The members of PatientsLikeMe don’t just share their experiences anecdotally; they quantify them, breaking down their symptoms and treatments into hard data. They note what hurts, where and for how long. They list their drugs and dosages and score how well they alleviate their symptoms. All this gets compiled over time, aggregated and crunched into tidy bar graphs and progress curves by the software behind the site. And it’s all open for comparison and analysis. By telling so much, the members of PatientsLikeMe are creating a rich database of disease treatment and patient experience.
And that’s no small thing. As modern medicine has reduced infectious disease in the U.S., the country’s population — like those in other developed nations — has shifted to longer-term, chronic ailments like heart disease and diabetes, diseases that patients must cope with for years and even decades. What’s more, conditions like high cholesterol and obesity demand years of vigilance to minimize their chances of leading to more serious health problems.
Disease management has become a national reality, a common experience that demands uncommon attention. And PatientsLikeMe is a tool that allows patients to manage their disease with a sophistication and precision that would have been unimaginable just a decade ago. The 7,000 members of PatientsLikeMe, in other words, are beta testers — they may be the vanguard of how we all will care and treat our résumé of chronic diseases. They’re not typical patients, in the sense of waiting for advice from a doctor. They are, rather, co-practitioners treating their conditions and guiding their care, with possibly profound implications. “People who use it will live longer; people who don’t won’t,” boasts Jamie Heywood, the provocative co-founder of PatientsLikeMe. “That’s evolution.”
“Any disease that is treated as a mystery and acutely enough feared will be felt to be morally, if not literally, contagious,” Susan Sontag wrote in 1978, in “Illness as Metaphor.” “Contact with someone afflicted with a disease regarded as a mysterious malevolency inevitably feels like a trespass; worse, like the violation of a taboo.” The antidote to such stigma, she suggested, is “to rectify the conception of disease, to demythicize it.”
****
Mood: hungry
