Outside Magazine, February 2012
Thursday, January 05, 2012 225

It's Not About the Lab Rats

If Lance Armstrong went to jail and Livestrong went away, that would be a huge setback in our war against cancer, right? Not exactly, because the ­famous nonprofit donates almost ­nothing to scientific research. BILL GIFFORD looks at where the money goes and finds a mix of fine ideas, millions of dollars aimed at “awareness,” and a few very blurry lines.

By:
Lance Armstrong
Lance Armstrong Photo: Ben Watts/Corbis

In the lobby, I meet Livestrong spokeswoman Katherine McLane and Chris Dammert, head of what’s known as navigation services. Our first stop is the building’s walk-in navigation center, adjacent to the main entrance, where bilingual staffers offer cancer patients financial consultation, help with insurance issues, and counseling. Since the center opened in late 2010, Dammert says, some 207 families have come in—lower traffic than he’d like. “We’re hoping to build awareness over time,” he says. 

The walk-in center is a hands-on version of the online and telephone support services that Livestrong has offered since 2005. Dammert leads me upstairs to an area where two “navigators” are settling into their cubicles. This is where patients or loved ones can phone in to a hotline with questions. Depending on their needs, callers are either directed to one of two in-house social workers for emotional support or referred to outside agencies.

Livestrong sends about two-thirds of the callers to organizations like the Virginia-based Patient Advocate Foundation (PAF), which deals with insurance and billing issues. In 2010, Livestrong paid PAF $727,000 for helping its clients; the organization even has a staffer on-site in Austin. In addition, Livestrong helps connect people with clinical trials and offers assistance to patients who (like Lance did) need help learning about sperm banking or egg freezing. Last year, the foundation says, it saved its members more than $2 million on fertility services.

Lastly, Livestrong publishes a set of cancer guidebooks, which include a journal, a record keeper to help organize paperwork, and a manual walking readers through the many steps of treatment. These are available from the Livestrong website for free.

One unlikely “nav” beneficiary is cycling journalist Charles Pelkey, diagnosed last summer with male breast cancer. Pelkey has been a critic of Armstrong—“I don’t particularly like the man,” he says—but after he tweeted about his cancer, a Livestrong navigator contacted him to offer assistance. “There are really wonderful people who work there,” Pelkey says. “I respect everything they do.”

Dammert hands me off to McLane for the rest of the tour, and it’s clear Armstrong didn’t hire a milquetoast for the job. Tall and serious, she came to the foundation in 2007 from the Bush Department of Education. “My job was to defend the No Child Left Behind law,” she says. “Every teacher in America hated it, including my parents.” 

Armstrong is a visitor, not a daily presence; when I was there in June, he had already decamped to Aspen for the summer. But his handprints are all over the place, from the framed yellow jerseys outside the staff gym to the enormous yellow chopper (a gift from the guys on Orange County Choppers) parked near the lobby. Every available surface is occupied by pieces from Armstrong’s art collection—including the Shepard Fairey “Lance face” poster and a wooden carving of a female torso emerging from a globe.

We end up in a conference room with 34-year-old Doug Ulman, Livestrong’s $320,000-a-year CEO. Earnest and intense, he looks like he could be Lance’s younger brother. Ulman was a sophomore soccer player at Brown University when he was diagnosed with a rare tumor and two types of melanoma. After successful treatment, he started his own foundation for young adults with cancer; Armstrong read about him in the Brown alumni magazine and sent an admiring e-mail. They hit it off, and Ulman came aboard in 2001. At the time, Livestrong had four staffers and a budget of about $7 million. Now it has a staff of 88, and it took in $48 million in 2010. 

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