A few months after Novo Nordisk gained FDA approval for its type-2 diabetes drug, Victoza, in January of 2010, Amy Tenderich sat down to write a review of the product on her blog, Diabetesmine.com. She quickly covered the drug’s vital stats—Victoza is an injectable glucagon-like peptide-1 designed to stimulate insulin secretion when high blood sugar is present—and then moved on to address the questions she knew would concern potential users: What type of patient would it benefit? How did it stack up against its competitor, Byetta? What were its side effects? What were its potential risks? What would happen when users combined Victoza with their usual oral anti-diabetes drugs?
To answer these questions, Tenderich referred to expert sources and also sought input from her physical and online communities—she talked to her own endocrinologist as well as a web contact named Raymond, living with the disease in England. Soon, though, what had been a simple blog post turned into something else altogether: one by one, site visitors shared their own questions and experiences, and by October 21 of this year, they had posted 990 comments—making the page into the default user forum for the drug.
And that’s the beauty of blogging, as Tenderich sees it. “Connecting online,” she says, “allows you to have this very personal, in-the-trenches perspective.”
Tenderich knows the trenches. Once a Silicon Valley technology writer, she was diagnosed in 2003 with type 1 diabetes, a disease about which she knew next to nothing. Looking to the web for guidance, she found a disconcerting lack of reliable information: no social networks; no blogs; no way to connect with patients other than those unwieldy chat forums and listserves we all remember with a sort of fond derision.
“At that time, it was sort of like, ‘Oh my god. Who would write about their illness?’” Tenderich recalls. “But I just jumped right in. I wasn’t worried about it going on my resume or something. I was so beyond all that.”
Tenderich took advantage of what was then novel software and started her own blog. Far from envisioning the business and the revolution that it has turned into, she simply looked forward to venting, and to connecting with other patients who had the same day-to-day problems and fears that she did.
Diabetes Mine is now the country’s leading diabetes blog, and it reflects the goals of its founder: to push for better education and innovation around the disease that’s the leading cause of kidney failure, nontraumatic lower-limb amputations and new cases of blindness among adults in the United States; to unify the type 1 and type 2 communities; to put the patient at the center of research and dialogue; to advocate for better insurance coverage for preventive care; to heighten public perception of the illness; to push the FDA toward quicker processing of new technologies; and to encourage the pharmaceutical industry to work more closely with consumer electronics designers.
To jump-start progress on this agenda, Diabetes Mine hosts an annual innovation challenge. This year’s winners—a futuristic “wearable artificial pancreas,” a portable insulin-delivery device and an app to encourage glucose testing and control strategies—each received awards of $7,000 cash and complimentary consulting with IDEO health and wellness design experts.
“There’s no reason why diabetes devices can’t be more consumer oriented, more sleek, more comfortable, more personalizable, more appealing—all those things,” Tenderich says.
In reviewing new diabetes treatments and technologies, she shuns the sensationalistic tone that she sees dominating mainstream coverage.
“I can’t tell you how many times my communities and I have gagged over some headline that says, ‘No more needles for diabetics!’” Tendrich says. “It’s just so unrealistic; progress comes in baby steps.”
Instead she thinks like a patient: How many insertion points will I have in my stomach? How comfortable is this? What kind of adhesive does this use? Am I going to be allergic to it? Is there a cover? Is there a case? Can I customize the alarms?
“I want to know,” she says, “what is it really like to live with this thing?”
That’s a perspective the Medicine X team is thrilled to have on its 2011/2012 advisory board. Welcome, Amy.