Botox Frees Muscles for Stroke Patients in the Know is an excellent example of how informed and motivated patients, physicians, drug companies, payers and the mainstream media can work together. The New York Times article describes how a stroke patient was emancipated from a crippling situation after 9 years:
Her left arm was twisted up near her neck, making it difficult to pull on a blouse, and her fingers curled so rigidly that her nails buried themselves in her palm. When she finally learned to rise from her wheelchair, her contorted left leg had the so-called horse gait of many brain-injury victims — she stepped toe-downward, and then fought to keep her foot from rolling over.
Now, with injections of botulinum toxin every three months, she says, “I’m completely transformed — I drive, I volunteer, I take art classes.” Her fingers are so relaxed that a manicurist can lacquer her nails red.
So what was involved?
- A segment from Dr. Max Gomez on NBC that let the patient (Francine) know that there were alternatives to her original neurologist, whom she called “Dr. Bad News” for his consistently negative pronouncements
- A patient who was willing to break away from her existing regimen and travel to find a doctor who would try something new
- A neurologist willing to try something a bit different and funky –which involves injecting botulim toxin using electromyography to help guide the needle to the proper spot
- Drug companies (in this case Allergan, Solstice Neurosciences, and Merz Pharmaceuticals) which sponsor the experimental treatments
- Medicare and private insurance companies, which generally are willing to provide reimbursement
I admit I don’t have any real expertise in this area beyond what I’ve read in the newspaper. But this strikes me as an aspect of the American medical system worth preserving. When people lament the possible shift to government-dominated health care this is the kind of thing they’re worried about losing.
According to the article only about 5 percent of those who could benefit from such treatment receive it, so there’s certainly room for improvement. And this kind of approach has a lot of drawbacks including its cost and the opportunity to push therapies that don’t work.
I’d like to see incentives for physicians and drug companies preserved so that innovative approaches are pursued. It would also be useful to find ways beyond drug company marketing to spread useful approaches more widely once they are validated. A concerted rollout of evidence based medicine, including point of care reference materials and decision support tools, could help.March 24, 2009