A family member turned advocate

As most of you know, L3 focuses on five key areas: Health, Family, Foundation, Purposeful Travel, and Wisdom. Sometimes, these areas overlap in unexpected ways.

In March, L3 member Barb Densen was diagnosed with lung cancer. Through her struggle, her family has found a new cause.

“I am an advocacy marketer, and in my happier and more constructive moments, I’d like to think there is some slight reason our family has been touched by this dreadful disease– like maybe lung cancer needs an advocate,” said husband Rob.

He recently wrote an article published in the Huffington Post (republished below) about his wife’s struggle and the need for increased awareness of lung cancer.

Rob said he’s seen few causes more in need of public education and advocacy. He points to two primary reasons. First, he suspects that lung cancer is “not a particularly compelling or ‘media-genic’ disease,” and therefore doesn’t attract media attention the way some causes do. Second, Rob said there is a tendency to “blame the victim” when it comes to lung cancer, due to to the relationship between the disease and smoking. In case you’re wondering, Barb is a life-long non-smoker.

“The larger, over-arching problem is that the issue has lacked a “tipping point” – a moment or event so compelling that it creates a critical mass of attention, elevating lung cancer to an issue of urgent national concern,” Rob said. “For the last few months I’ve been working on an idea that I think will establish lung cancer forever more as the scourge it is. More to come, I hope.”

He requests help from L3 members: Please visit this link to sign a petition to encourage the President and the Congress to make the fight against lung cancer a higher priority. Signing it and passing it along to 10 friends/colleagues/family members – or perhaps 12 in honor of the 12 Days of Christmas – and asking them to do so as well would be even better. Thanks to all Friends of Barb who can help with bringing attention to this cause.

From the Huffington Post:

Lung Cancer Kills, So Does Indifference

By the time you finish this post, two more Americans will receive the life-rending diagnosis of lung cancer. Sadly, given the current state of lung cancer research, diagnosis and treatment, they — like most of the 225,000 other Americans that will receive a lung cancer diagnosis in 2010 — are likely to be dead within five years.

There will be an estimated 160,000 lung cancer deaths in 2010. It is a staggering number and more than the total for breast, colon, ovarian, melanoma, brain and leukemia combined.

Here’s another sad reality: 71,000 women will die of lung cancer this year — almost twice as many as will die from breast cancer. And in this era of gender equality, lung cancer is an unfortunate area of catch-up: women are now being diagnosed with lung cancer at almost the same rate as men.

Those are just some of the facts of this dreadful disease. Here is another: my wife has lung cancer.

A Club We Would Rather Not Be a Part of

My wife Barb is a member of a rapidly growing club — the Women-Who’ve-Never-Smoked-With-Loving-Families-Who-Get-Lung-Cancer-Anyway Club. Indeed, cancer incidence among women who’ve never smoked is one of the fastest growing of all cancers. No one really knows why. And from where we sit, it feels like the accompanying question is, does anyone really care?

Lung cancer sucks, but the thing that sucks the most is that by the time you’re symptomatic, the disease has usually spread beyond medical science’s ability to cure it. As Barb says of her illness, “We all have limited time; I’m just a little more aware of that fact.”

As a family, we don’t question why lung cancer happens and why it happened to ours. What we don’t understand is why we are not much further along in the fight against this awful disease. And therein lies the tale.

Race for a Cure? More Like a Slow Crawl

A child who developed cancer in the 1960s had about a 20 percent five-year survival rate; a child with cancer in 2010 has about an 80 percent rate (closer to 90 percent at the nation’s top pediatric cancer centers).

Similar breath-taking progress has been made in the fight against breast cancer, where the five-year survival rate for Stage I is now 96 percent, up from 80 percent in the 1950s.

But the numbers on lung cancer are hardly encouraging. For example, only half of all people diagnosed with Stage I lung cancer will be alive five years later. If you’re diagnosed with Stage IV lung cancer, the survival rate is four percent. Those numbers have not changed much over the years.

So while huge gains have been made in treating most cancers, progress is grudging in the fight against lung cancer. There has been some progress — indeed, my wife is the beneficiary of a diagnostic protocol and a drug that didn’t exist 10 years ago — but not nearly enough. A large part of the problem is that the disease has not received public attention or research dollars proportionate to its prevalence or virulence. It is as if there is a serial killer loose in our community and everyone is looking the other way.

$$$$ Are the Secret Sauce

Basically, here’s the way the fight against cancer works. No dollars for research, no progress. Some dollars for research, some progress. A lot of dollars, a lot of progress.

To use the killer-on-the-loose analogy, in the fight against lung cancer, the more money, the more cops on the street and the better equipped they are.

Unfortunately, private fundraising for lung cancer research badly lags the efforts in support of other cancers — and the story repeats itself in terms of federal dollars. As reported by the Orlando Sentinel last month, “federal funding for other common cancers still dwarfs that for lung cancer — which receives just $1,200 for every death compared to $27,000 per death for breast cancer, $14,000 for prostate cancer and $6,500 for colon cancer.”

There are, I think, two reasons the fight against lung cancer has more often than not resembled a thumb wrestle. One, it’s not a particularly “media-genic” disease. It’s hard to depict lung cancer in a way that tugs at the heart strings and opens checkbooks. Nothing very compelling about a 70-year-old tethered to an oxygen tank.

But there is a more insidious and dangerous reason dollars for lung cancer research lag. We blame the victim. Jane Brody’s article in the New York Times earlier this year, “Blame’s Net Catches Lung Cancer Patients,” brilliantly articulated this point.

When it comes to lung cancer, there is this nasty syllogism at work: smoking causes lung cancer, people who smoke have a choice in the matter (apparently, the heroin-like vice grip of nicotine notwithstanding), so why fund cancer research? Why? Because lung cancer is the most prevalent and lethal of all cancers. Why? Because 30,000 Americans will die this year who never puffed a cigarette, many of them in their 30s, 40s and 50s. Why? Because many of those who die of lung cancer will have stopped smoking 20 years ago or more. Why? Because right now, millions of Americans are struggling mightily to stop smoking. Why? Because cigarette companies — the 800-pound gorillas sitting on our loved ones’ chests — are cunning, deep-pocketed, and lethally effective marketers making sure there are another 200,000 Americans in place next year to receive the dread diagnosis.

To Oppose Something Is to Maintain It

Clearly, the issue of lung cancer research and treatment could use the right, high-profile attention. It would be swell if the White House were bathed for a night in a colored light that flickered on and off to simulate respiration or if the NFL floated a giant inflatable lung balloon over every stadium or allowed lung cancer survivors to inflate the game balls. But, frankly, given lung cancer’s prevalence — who among us does not have a friend, co-worker, family member or neighbor who has succumbed to this despicable disease — the biggest ssue isn’t awareness; it’s forgiveness.

It is time to forgive lung cancer patients and their families. We love and need our moms and dads, husbands and wives, sisters and brothers, grandpas and grandmas. I must admit, for years I ignored this disease and was secretly disdainful of smokers. But since my wife’s diagnosis, I’ve listened, learned and reflected. The men, women and families we’ve met in hospital waiting rooms have come from all walks of life. Some have never smoked, some stopped decades ago, some still smoke today, struggling desperately with their nicotine addiction just as some of us struggle with a desire for sugar, alcohol or one more hand at the poker table. I have come to understand this simple, elemental truth: “Forgiveness,” as author-educator Christina Baldwin once wrote, “is the act of admitting we are like other people.”

But there is one group I am not prepared to forgive: Congress. Our elected officials have dawdled — dangerously and inexplicably — to pass the bi-partisan Lung Cancer Mortality Reduction Act, which requires the federal government to make fighting lung cancer a higher priority. Its goal: to cut in half the number of lung cancer deaths in the next five years.

You can help. In the amount of time it takes to breathe in and out a couple of dozen times, you can click here to sign a petition to encourage the President and the Congress to act or here to contact your Congressional representatives and voice your support of this legislation. You may just help to save tens of thousands of lives.

Finally, if you are looking for more information on lung cancer, the following sites are terrific resources: www.lungcanceralliance.orgwww.nationallungcancerpartnership.org,www.lungevity.orgwww.lungcancerfoundation.org and www.unitingagainstlungcancer.org.

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