I Love LIVESTRONG... and So Should You

A cyclist rides past a Livestrong banner during the annual Team Livestrong Challenge in Austin, Texas on October 21, 2012 whe
A cyclist rides past a Livestrong banner during the annual Team Livestrong Challenge in Austin, Texas on October 21, 2012 where some 4,000 cyclists will ride 18, 65 or 100 miles in a show of support for cancer survivors. World cycling's governing body said on October 19 that it will give its response to the devastating US Anti-Doping Agency (USADA) dossier onLivestrong founder Lance Armstrong on October 21 while the UCI (International Cycling Union) has come under growing pressure to explain how seven-time Tour de France winner Armstrong, who was described by the USADA as being at the heart of the biggest doping programme in sports history, was able to evade detection for so long. On the far right is Livestrong President and CEO Doug Ulman. AFP PHOTO / Frederic J. BROWN (Photo credit should read FREDERIC J. BROWN/AFP/Getty Images)

Now that some of the frenzy over Lance Armstrong's recent admissions has died down, I thought it might be a good time for me to weigh in. You see, I hold a title as a "Livestrong Global Envoy" (really, it's on their website, and everything). As such, I am asked to use my paltry celebrity, and limited influence, to spread awareness of the Livestrong Foundation's programs. It's become clear to me in recent weeks that I have not done a very good job.

I am tired to the bone of the baseless and uninformed criticisms people continue to hurl toward the Livestrong Foundation, based on crimes Lance committed as a cyclist. I read them online, and hear them recited on television and radio. I am astonished by their vehemence, and heartbroken over their misguidedness, and destructiveness. Whether the Livestrong Foundation does good work, uses its donated resources responsibly and efficiently, and benefits the people its mandate directs it to are separate issues from whether Lance Armstrong ever cheated, or lied, or lied about cheating.

One prime example I recently read states, "I wish someone would examine Livestrong. If Armstrong cheated, lied, defrauded, and bullied others in cycling, wouldn't it be possible that he behaved in some of those ways with his nonprofit?"

Yes, it would be possible. So the question seems reasonable on the surface. The problem with posing it, in a public forum, read by people who might be overly impressionable, is that it's already been answered, over and over again. There are numerous organizations that devote themselves full-time to investigating charities, and in identifying the ones that misuse funds, or merely use them inefficiently. (There are even organizations that evaluate the charity evaluators.) They have already looked into Livestrong, and found it to be one of the best run, most efficient, and most effective charities in existence. But these organizations can't implant their findings in anyone's mind. A person has to want to learn the truth. My advice to everyone is to spend a few minutes investigating a charity yourself before posting accusatory questions that have already been answered on your behalf.

Some do more than question. One New York Times reader recently wrote, "I'm sure (Armstrong) pocketed the lion's share of the money donated to the cancer charity. The guy is a liar, and it follows that he must also be a thief."

This is pretty tortured logic, but it is a reasonable concern. The problem, again, with posting it in a public forum (after an article that wasn't about the Livestrong Foundation in the first place) is that the Livestrong Foundation's own website has independent audits -- as required by law, and conducted by reputable firms -- available to anyone who wants to look. They go back to 2003, cover every year since, and run about thirty pages apiece. They account for every dollar received and spent, and tell exactly where those dollars have gone. These are standard procedures for non-profit organizations. It's nothing new. It's nothing unique. It's certainly nothing secretive.

Some of the rants just make me sad. A man who identifies himself only as Bob writes, "I gave my money to help people stricken with cancer because I was asked to by a world champion athlete who swore to me he was clean. Now that he's admitted he lied, I want my money back."

I would like to tell Bob that he is seeking to punish the wrong people for the deceptions in his salesman's pitch. His anger might be understandable. Bob's solution, however, is the equivalent of punishing Lance Armstrong by going to his own garage and smashing his daughter's bicycle. That's not going to make Lance suffer. It is certain to make Bob's daughter cry.

To me, the distinction is this: The deceptions people are reasonably upset about have only to do with the salesman's past history, and nothing to do with the quality of the services he sold them. The only actionable inquiry, to me, is, does the Livestrong Foundation do vital work, and is it doing that work well? If the answer to each question is "yes," then the foundation needs to continue, and to continue to receive support.

Which leaves two highly pertinent questions. How does one ascertain whether the Livestrong Foundation's expenditures, as listed in their published audits, are reasonable and efficient in comparison to other charities' uses of donated funds? And, secondly, what exactly is the Foundation doing with that supposedly well-spent money, anyway?

The first question is as easy to address as the issue over audits. Choose one of the many organizations and websites devoted to letting you know how various charities fare in comparison to others, and take a look. My favorite is CharityNavigator.org, because they offer a ton of information, which is organized in a way that makes it easy to merely dip in, or to delve quite deep.

For those who won't go even that far, I'll provide some data. Charity Navigator gives the Livestrong Foundation its highest four-star rating. 82% of incoming funds go directly into Program Expenses, with 6.1% going toward Administrative Expenses. Both percentages are improvements over national averages for similar charities. They have a fundraising efficiency of $0.14 spent for each dollar in charitable donations received, which is slightly less efficient than the most desirable category possible. So, the worst thing Charity Navigator has to say about the Livestrong Foundation is that they are operating with Fundraising Efficiency that is just about as good as it can be.

There's too much information available from Charity Navigator to repost here. Each metric has a clickable link to describe what it is, what it means, how the measurements are calculated, and what the desirable range of scores should be. It's incredibly detailed. I can't imagine why anyone would give to a charity -- any charity -- without taking at least a peek.

Finally, what is Livestrong? What do they do that's so special that I would take on this debate? Here it is, in the Foundatin's own language:

Livestrong provides free services to help anyone affected by cancer.

If that sounds pretty broad and wide ranging, that's because it is.

The Livestrong Cancer Navigation Center, located in East Austin, provides a range of free services for anyone affected by cancer. This includes people diagnosed with cancer, their families, friends, loved ones and the health care professionals who work with them. We help people with any cancer type and at any stage of treatment.

I'm not sure whether the force of that mandate hits people unaffected by cancer as strongly as it hits me. But I can tell you, from my own experiences as a man who was diagnosed with acute myeloid leukemia in 1985, when I was 24 years old; who spent nearly five years fighting the illness, fighting physicians and medical bureaucracies and insurance companies; who struggled mightily (and futilely) to get doctors to share information with me, or simply speak with each other; who watched his family buckle (but not break) under the strain; who has spent the decades since listening to and sympathizing with the struggles of others going through similar things, that it is immense, and it is rare.

Here are some specifics that might explain my enthusiasm. The Livestrong Foundation helps patients and their families gain access to appropriate medical treatments and devices. They help find assistance for the uninsured and underinsured. And they directly intercede with insurers and advocate for those facing insurance denials and appeals.

Two brief examples: An Austin based minor league baseball coach, whose treatment necessitated trips to Los Angeles every four months, ran into difficulties with an insurance carrier that would only pay for the second phase of his treatments after he paid $100,000 for the first phase himself. The Livestrong Foundation interceded, and got the insurer to pay for phase one, as well. In another case, the Foundation's own former COO couldn't get an extension of COBRA coverage after leaving her position. The Foundation interceded, and assisted her in getting her coverage reinstated.

The Foundation also helps handle debt and financial management issues related to cancer diagnoses. They help people apply for federal and state programs such as Medicaid, Social Security, and Disability. Livestrong offers counseling, support groups, classes, and peer-to-peer connections. The Foundation helps people understand risks and options related to cancer treatments and fertility (something doctors are notoriously lax about), help access discounted rates for fertility preservation, and help people find local fertility related resources.

Does this all sound basic and rudimentary (which is a less flattering way of saying necessary and essential)? Show me someone else doing it, on the scale that Livestrong does, while maintaining the additional programs they do.

What are some of those additional programs? Livestrong offers free help in understanding the treatment options facing patients, in seeking second opinions, and in identifying clinical trials that would be most beneficial and appropriate.

Take another look at that last clause. "...identifying clinical trials that would be most beneficial and appropriate." When I was 25 years old, newly in remission from leukemia that was expected to quickly return, the world-renowned cancer hospital treating me in New York never informed me of any clinical trials going on anywhere else. Doctors came to my bedside on a daily basis, like salesmen showing prototypes from a briefcase, encouraging me to have an autologous bone marrow transplant (meaning, using one's own treated bone marrow as the "donor" marrow) there, even though they had no dedicated bone marrow transplant unit, almost no nursing experience with bone marrow transplantation, and had attempted only two such transplants to that point.

Meanwhile, less than two hundred miles away, in Baltimore, Johns Hopkins Hospital had already published a study in the New England Journal of Medicine demonstrating better long-term leukemia survival rates after autologous bone marrow transplant than anyone had ever achieved. The study was made up of more than one hundred patients, each of whom had been treated at the Johns Hopkins Bone Marrow Transplant Unit -- which, since the study's completion, had performed nearly a hundred more.

Two institutions, only a car ride apart. One offering experience and documentation of unprecedented success, the other pressuring me to become part of their experiment. But I had no idea the better option existed (my treatments predated the Internet, but such information would still be a challenge for a layperson to find today). In fact, I only found out about the success Johns Hopkins was having by traveling to Seattle, where an unusually generous physician at the Fred Hutchinson Cancer Center told me, "We're not working on anything that's going to help you here, but you should talk to the people in Baltimore who just published this study." And so I traveled from New York to Seattle, then to Baltimore for a consultation, and then back to New York -- all while unwell, and under extraordinary time pressure to make a choice before the leukemia recurred. I spent thousands of dollars, on both travel, and consultation fees. I eventually traveled back to Baltimore, where I had the bone marrow transplant that saved my life. I don't know what would have happened to me if I, or my parents, or my girlfriend, couldn't have afforded all this. If the Livestrong Foundation had existed then, the whole campaign could have been conducted by calling them on the phone. And it would have been free of charge.

I've mentioned only a smattering of the programs and services the Foundation offers, and I still haven't touched on what they're most renowned for. Quite simply, the Livestrong Foundation has spearheaded a massive cultural shift toward pride in survivorship, and away from the stigmatization previously associated with cancer diagnoses. Their quarterly Livestrong Challenge bike rides and runs draw thousands of cancer patients, survivors, their friends and families, and the friends and families of those who did not survive their illnesses. These events place emphasis on the continuation of life, of setting goals and accepting challenges, and of maintaining and improving physical fitness throughout a cancer diagnosis, throughout treatment, and throughout the life that follows. I have attended these events, and I have been inexpressibly moved. The sheer volume of humanity, either physically present, or represented by names scrawled on vests and placards, is a devastating indictment of our culture's refusal to eliminate, or merely reduce, many of the known causes of these illnesses. And the determination of those present is a testament to human beings' abilities to turn tragedies, which can never be erased, into triumphs that will also always be remembered.

Furthering their cultural and political activism, the Foundation lobbies lawmakers to address issues of cancer prevention, cancer research, and the exponentially growing population of cancer survivors.

I am also aware of the criticism that The Livestrong Foundation doesn't fund cancer research, and so is unworthy of continuing support. What most people don't understand about large-scale cancer advocacy is that, 1) medical research grants require tremendous expenditures of money, time, and expertise simply to determine which research to fund (not to mention the money, time, and expertise spent assembling, maintaining, and overseeing the team that makes those decisions); and, 2) organizations (and corporations) that fund research are plentiful, while organizations that give assistance directly to humans in need are quite rare. (Corporations that do so essentially do not exist.) The Livestrong Foundation made a decision to steer more of its resources to the needs they saw being least served. The Foundation invests in on-going dialogue with cancer patients and survivors to gather information about the challenges they face as the result of a cancer diagnosis such as bankruptcy, chronic pain, emotional trauma, lost fertility and insurability. Based on the information received, the Foundation creates programs to not only meet the needs of survivors, but also improve their quality of life. As a person who's benefited from both sorts of philanthropic support, it's a decision I agree with, and endorse.

I wonder what the people making the unfounded accusations hope to achieve. Would they gain a sense of satisfaction if the foundation faltered, even if they knew -- and acknowledged -- the good that it does? I wonder whether they know that there are estimated to be between twelve and fifteen million people living with, and beyond, cancer in the United States alone. I wonder whether they'd agree that those people need, and deserve, some assistance. I wonder whether they know that Doug Ulman, Livestrong's President and CEO, is a three time cancer survivor, originally diagnosed during his sophomore year of college. I wonder whether they know that twelve percent of Livestrong's staff of approximately one hundred people are also cancer survivors. These are people who are working for others, because one of those others is precisely who they used to be.

I fear that some people will never allow themselves to be convinced. Their anger requires indulgence, and they will demand some form of satisfaction, no matter how displaced. I fear the postings of rumors and misinformation will continue, if only because some people just can't resist. Some won't be able to resist right here. I ask that people not use the comments section below this article to discuss or debate whether, or how often, Lance Armstrong used performance enhancing drugs, lied about his use of them, intimidated others, or how bad or bland any of those crimes might be. Please don't berate him, or bemoan how he betrayed and misled you. Don't say he belongs in jail, sent the wrong message, or did wrong by Sheryl Crow. Do those things somewhere, if you must. But, please, don't do it here. Today, log online and learn about the Livestrong Foundation -- or any other charity. Hell, learn about two or three. If you like what they do, and you learn they do it well, go to their site and make a donation. Then you'll have done something good, instead of just written about something we can all agree is bad.

I sent another donation to Livestong this morning. It's the least I could do. They have been there for me every time I've called, and for everyone I've ever sent their way. It's their job. And they do it very well.

A condensed version of this piece is currently viewable at the very worthy TakePart.com.

Evan Handler's two books, "Time On Fire: My Comedy of Terrors," and "It's Only Temporary: The Good News and the Bad News of Being Alive," have just been re-released as ebooks (in all formats) and paperback. Learn more at EvanHandler.com.