Jody Schoger: Livestrong, Armstrong, and why "finding the cure" isn't all that matters for people with cancer

The recent news about Lance Armstrong and the USADA sparked much discussion online about Livestrong, the cancer organization founded by the cancer survivor and cycling champion. As regular Boing Boing readers know, I have cancer. A confession: I wasn't particularly interested in Armstrong or Livestrong before my diagnosis, but have since connected (primarily through Twitter) with a number of people with cancer who are part of the organization, or who have benefitted from its support services.

So, when I read opinion pieces last week criticizing both the man and the organization, I was annoyed to see pundits who do not have cancer slamming Livestrong for not spending money on "finding a cure," and alleging that the organization falsely claimed it was doing just that. Research for "the cure" matters, but it's not all that matters to those of us who may or may not live to see "the cure." I didn't get this before. Now I do. And I'm not just talking about "awareness," a term I loathe. It's this: Navigating the nightmare of treatment, medical bills, and the wreckage cancer makes of relationships and our professional lives—this is the stuff that actually matters more to us, in day-to-day terms. Fighting the disease on behalf of future victims is important. But so is helping the people who have the disease, right now.

Jody Schoger (blog) is a writer, cancer survivor, and advocate for people with cancer. I met her through Twitter, and she has become an important part of my personal cancer support circle.

Jody and I were trading emails about a recent Bob Lefsetz rant. That piece referenced an Outside Magazine article by Bill Gifford. Jody is a longtime supporter of Livestrong (her Twitter avatar reflects this!), so I invited her to share her views on the matter here on Boing Boing.

Jody writes:

It's easy to take pot shots at cancer organizations when you've never worn the shoes of a cancer patient or walked alongside one.

It's easy to criticize when you've never had chemo pumping into a vein in your chest or rushed a parent on oxygen into an emergency room for breakthrough pain.

Cancer survivors can read between the lines and read well they do. They know what counts and what to discount. There's something about anthracylate-based chemotherapy that somehow amps up your internal bullshit detector.

Mine went off like clockwork yesterday when a friend shared an email attacking Lance Armstrong and the organization he founded, Livestrong. In cancer advocacy you can rarely, if ever, change anyone's mind when an opinion is well entrenched. You can only grow the support of others who share your vision. This person believes what he does about Lance. That is that. But when the snarly-snark verbage extends to Livestrong, and cynicism starts to mar the foundation's work, I start writing.

I want to be clear about Livestrong. The organization was never about cancer research, even though it did fund some testicular cancer projects when it was first established. Research into specific cancer treatments (potential cures) has never been its thrust. That has always, always been clear to me as a cancer survivor. No one at Livestrong, or anything in their material, ever suggested otherwise. Livestrong works to support those diagnosed with cancer and those who love them. This is a huge distinction.

Livestrong's work is about survivorship, the science of survivorship (yes, there is one) and everything related to the topic. If reporters and prestigious news organizations, from Scott Pelley of "60 Minutes" to the NYTimes, have chosen to use the phrase "cancer research" to describe Livestrong's work then their paraphrasing is truly incorrect.

This happens in journalism. Sentences are cut. You must be brief. Sometimes accuracy suffers.

What is essential to understand about Livestrong is some understanding of cancer and the role of nonprofits. Livestrong was the first organization to transform the word "survivorship" into an essential component of cancer care. Even though the word itself was was defined by the National Coalition on Cancer Survivorship in l986 it was Livestrong that brought the concept to life. Through the celebrity of Lance Armstrong, Livestrong itself, and the uncanny ability of its staff to understand the global reach of social media, an entirely new group of people "affected by cancer" have not only been helped by the organization but even have been transformed by the process. Livestrong understood community long before community was cool.

All anyone needs to do for a handle on the organization, and who it helps, is log on Twitter and search @livestrong #livestrong or @livestrongCEO.

I was not directly "helped" by Livestrong services, but there are something like 2.5 million who have been directly served, either through their call-in information line, survivorship planning tools, alliance of young adult cancer organizations, and now, and an on-site patient navigation service (walk-in, for underserved and those without insurance), information classes and webinars. Like many reputable cancer nonprofits, Livestrong frequently partners with other groups to bring essential news from the cancer arena directly to its stakeholders, from oncologists to survivors. You'll see the organization at all important conferences ranging from reaching the medically underserved to NCI's biannual survivorship research conference. If it's about survivorship Livestrong will be there.

I encourage anyone traveling through Austin to stop at Livestrong headquarters to see what congruence actually looks like in real life. Nonprofit work is not well compensated and it's frequently thankless, though it's tough to find a place where the employees are as committed to mission as they are at Livestrong. There, hope, not cynicism, rules the day. The desire to empower another along the cancer continuum has always been at the heart of their mission, and that most human wish, making it better for someone else, guides them to this day. In a material world of bottom lines and dollar signs that matters. Big time.

Jody Schoger is a freelance writer and co-founder of #BCSM, the breast cancer social media chat which takes place Mondays at 6pm Pacific time on Twitter. People with breast cancer, and their caregivers and loved ones, can participate by following the #bcsm hashtag. Jody blogs at and is a 14-year breast cancer survivor.