The following is a joint effort with LiveStrong leader Erik Pearson of Denver, Colorado. You can find him on Twitter @garageww). Illustration right: photo by Chris Brewer.
In “A Champion Against Cancer, Now Under Siege,” (New York Times, August 21), Bruce Weber and Julie Macur paint perhaps the most realistic picture to-date of the storm currently surrounding Lance Armstrong.
What is minimized in this article – and completely lost in others – is the incredible impact Livestrong has had on the lives of those touched by cancer; the global visibility Livestrong has helped bring to cancer; and the potential damage the current cycling doping investigation may inflict on the foundation.
Mr. Armstrong’s story as a cyclist and testicular cancer survivor is well-known. Most people are aware of the Lance Armstrong Foundation, the cancer fighting organization he founded in l997 following his diagnosis in October, 1996, through the simple yellow wristbands that were unleashed on the eve of the 2004 Tour de France. Since then, more than 70 million of the $1 yellow bands have been distributed.
As recently as August 4, Mr. Armstrong himself said that he and Livestrong are synonymous. The step to associate the ubiquitous yellow band to doping, though, is a dangerous one. Dangerous, because linking Livestrong to the allegations could irreparably harm thirteen years of the most progressive cancer advocacy yet seen in this country. No one organization has done more to mobilize, engage and motivate individuals affected by cancer than Livestrong.
Early on, Livestrong was one of the first organizations to equate the term “survivor” with empowerment, and many Livestrong staffers are themselves cancer survivors. Livestrong made it OK to talk openly about cancer. It gave survivors a place to talk about every kind of cancer and all of its emotional, sexual and spiritual side effects. What can’t be emphasized enough is its establishment of a survivor culture, a legacy of grassroots cancer-fighting organizations and contributions to the body of knowledge about cancer in two significant areas: cancer in young adults and cancer from the global perspective.
Perhaps Livestrong’s greatest contribution has been to move the topic of young adult cancer into the public eye. Young adults from ages 15 through 40 are caught between the worlds of pediatric and adult oncology, and face many long-terms effects from cancer treatment, often at the beginnings of their professional or married lives. This is the age group most likely to ignore symptoms of, and preventative measures for, cancer.
Livestrong CEO Doug Ulman, already a three-time cancer survivor at 33, was in college when he was diagnosed with cancer for the first time. He spearheaded the formation of the Livestrong Young Adult Alliance, a coalition of some 170 different organizations around the world that promotes research and advocacy geared towards young adults. In contrast to all other age groups, survival rates for young adults have not increased since 1975, a key area of concern.
In 2009, Livestrong hosted the Global Cancer Summit in Dublin, Ireland. On the heels of that summit Livestrong issued “Cancer Stigma and Silence Around the World,” a report calling much-need attention to the stigma cancer carries in developing nations such as Mexico, India and South Africa, and the barriers that stigma presents to treatment in those countries. Most recently Livestrong co-authored “The Global Economic Cost of Cancer.” This report was released jointly with the American Cancer Society at the World Cancer Congress in Shenzhen, China, where Mr. Ulman was appointed to a two-year term on the board of directors of the Union for International Cancer Control (UICC).
Among other things, they put on four yearly iterations of the Livestrong Challenge, the Foundation’s signature fundraising event that attracts tens of thousands of participants. The event’s corporate sponsors donated all the operating funds needed to host the event, which means 100% of the money raised will come back to support Livestrong’s mission.
Volumes can be written on how Livestrong helps people every day through its SurvivorCare line, which served more than 9,000 people in 2009. On Twitter, Sarah Hobbs wrote: “Nine days after losing health coverage I’m told I need a work up to rule out breast cancer. Thanking God for the Lance Armstrong Foundation that is helping me get the mammogram and ultrasound done.”
Former Nine Inch Nails frontman Trent Reznor tweeted, “Recently lost a hugely important person in my life to cancer. Livestrong was an invaluable resource throughout the fight.”
These and so many others are the stories that don’t make headlines. The Livestrong team is quite tech savvy in its outreach, utilizing Twitter, Facebook, and two iPhone apps to reach an increasingly connected cancer community. The Livestrong.org website has brought together a world of people where support and proper information can be found, and through it, Livestrong has created momentum toward fighting cancer where such energy had not previously existed.
Triggered by allegations from Mr. Armstrong’s former teammate and disgraced 2006 Tour de France winner Floyd Landis, and headed by FDA investigator Jeff Novitzky, the inquiry could cause irreparable damage to Livestrong’s mission and outreach. Who is the winner if this happens?
Ordinary citizens should question the necessity to spend millions of dollars on a sports-related probe during the country’s worse economic downturn since the Great Depression. Even now, with the nation’s egg supply undergoing massive recalls due to a widespread salmonella outbreak, it seems the FDA is more concerned with tasking its chief investigator to probe cycling chains than to protect the food chain.
Yellow is a color of courage and optimism, for one day finding our way through, past and beyond cancer. There are 28 million people around the world living with cancer, who could care less about a decade old doping mystery Mr. Novitzky is fixated on solving. Because of Lance Armstrong, and the team of incredible people who run Livestrong, anyone diagnosed with cancer today can find support, assistance and information immediately, for all types of cancers. Ask any cancer survivor who Lance Armstrong is and be prepared to sit down and listen, because you will hear his or her story. That’s what counts.
Besides, quipped one young adult survivor on Twitter, “the yellow wristband is the only thing you can wear in a CT scan.”
About the Authors:
Erik Pearson is a cancer co-survivor and a Denver-based global volunteer leader with Livestrong. His father died from lung cancer in 2009 after a three-year fight.
Jody Schoger is a 12-year breast cancer survivor and a Livestrong global volunteer leader, blogger and cyclist. She and her husband, a two-time melanoma survivor, live in The Woodlands, TX. She writes at http:/womenwcancer.blogspot.com