So the new hotness in cancer care is young adults affected by cancer, aged 15-39. Why? Because survival rates have not improved in 30 years (source: NCI, Closing The Gap) and, for the large part, *all* of the strides, progress and advancements we’ve made since Elvis died do not benefit this oft-forgotten orphan generation of patients, their families and caregivers. Granted it’s only 6% of all incidence and 10% of all survivorship (source: NCI SEER 2006) but we’re people too. And we vote. (For Sanjaya perhaps but we vote, dammit!)

To point out a possibly lesser understood factoid, it should be noted for the record that this population of “young adults” encompasses not just people diagnosed in their late teens, 20s or 30s, but long-term childhood cancer survivors as well, who comprise almost 1/3 (roughly 350,000) of the current young adult survivorship population (~1,100,000) currently living with, through and beyond cancer in the United States. In fact, if you add to this, current boomers and seniors who *were* diagnosed under 40, we’re looking at about 3M people.

Why include long-term pediatrics? Because they’re people too!

Seriously, though… while progress in pediatric cancer has been made in the past 20 years, it has also failed miserably and is only now – in contribution, support and execution of recent staggeringly shocking public health reports – getting it’s head in the game and seeing cancer no longer as a death sentence but for what it really is for children; a life sentence with no real “cure” in the traditional “magic bullet fairy dust” sense.

People like to say “cure with consequence” or “cure’s collateral damage” but, for many long-term pediatric survivors, when the doctor says, “You’re cured. Go home.” – that’s not the end of the story – a euphemism I use repeatedly.

This life sentence is, of course, better than the death sentence it used to be but with progress comes consequence. Article after article in national press continues to expose the notion that “cure” is not the end of the story. Yet somehow, that message isn’t seeping down to the general public who continue to let us survivors know as a matter of course that “It’s Over! You’re Finished! Get on with your life and stop complaining!” Ain’t that the truth?

Survivors in their late teens, 20s and 30s, whether you’re a long-term survivor or newly diagnosed, are not like Aunt Sally and Grandpa Sam, who successfully completed their 30-year studied, age-appropriate, clinically-trialed-to-death adjuvant cancer treatment, slapped on their pink ribbons, free t-shirts and wristbands, raced/walked/strode for a cure, sat around a pale hospital support room in a circle of chairs with other boomers and seniors of their same cancer type and Kum Ba Yah’d themselves in perpetuity to closure.

No, we’re different. Much, much different.

So here we are. Young adults are finally the buzz in onco-town. Woo hoo! Now what? No one knows. It’s one thing to put out all these great – but scary as hell – public health reports about these gross inequities facing young adults across all verticals within the cancer continuum but it’s an entirely different thing to act on them.

The aforementioned “cure” which now appears for many to be more about quality of life and not quantity of life is changing the way we think about cancer and demanding semantic accountability on behalf of the organizations who keep promising us Disney World in a syringe. This Cinderella “cure” is – now more than ever (think how Pinkishly nauseating October is getting) – shoved down our throats, promoted and preached by “establishment” cancer groups who either (1) don’t get it, (2) don’t want to level with their donors, (3) don’t know how to talk truth to the public or (4) live in a multicolored, perfume-scented and robust fantasy land with unicorns and rainbows like it is the year 1977.

Racing for the Cure. Relaying for the Cure. Golfing for the Cure.

Cure! Cure! Cure!

The problem is that no one defines what “cure” means.

I’ve said this over and over and over and no one has stepped up to the plate. Get in the “hot seat” and tell us! It’s almost an embarrassing comment on a broken system that continues to dupe the ever more financially compromised pockets of the American donor.

Yes we want a “cure.” Who doesn’t want to see epidemic diseases marginalized, eradicated and tossed the way of polio and small pox. (What do you mean polio and small pox are still around?) Crap. We’re screwed.

Well, at least if they’re still here, are they killer diseases or, like allergies, asthma, diabetes, glaucoma and HIV, are they chronic conditions that enable us to not die right away but perhaps enjoy a somewhat compromised-yet-tenable quality of life? They’re not? Good.

So how is this any different than cancer? It’s not. Cancer is a chronic condition. This is not just my personal opinion – it’s public health data.

Cancer is now actually considered a chronic condition by the National Cancer Institute and the Centers For Disease Control and Prevention.

Whoop dee doo. Does this matter? Somewhat. Should you care? Maybe.

The definition of chronic condition means “no cure.” Live with it, make the most out of it and focus on quality and not quantity.

I’ve said it before and I’ll say it again: Getting cancer and not dying is not a “cure.” Surviving cancer only to hope you don’t get it again (whether a recurrence or secondary) is not a “cure.” Being disease free is not a “cure.” Which brings up the elephant in the room and a topic surely destined for an entirely different tirade – is that we continue to treat the symptoms of cancer but never actually address why we get it in the first place. Environment, pesticides, hormones, pollutants, toxins, blah blah blah. If you ask me, cancer is here to stay. It’s not something we can stop, only something we can manage.

And on that positive note, I shall conclude this tirade with an excerpted quote of a partially-great article published in 2005 by author Mike Adams entitled, “The Cure Con: how you’re being deceived by charities that claim to be racing for the cure for cancer and other chronic diseases.”

“Everywhere you go, someone asks you for money to help find the cure for some disease. It’s the race for the cure! It’s the telethon for the cure! It’s the walk or run for a cure! At grocery stores, cashiers ask if you want to donate a dollar to help find the cure. Other retailers want to sell you fashion-minded colored bracelets that raise money to find the cure. There’s always someone who wants your money in exchange for the hope that your dollar will somehow help them “find a cure” for some awful disease.

“I have a very big question to ask about all of this. This has literally been going on for decades. Researchers have been searching for a cure for cancer since the late 1960s, and for other diseases since at least the 1970s. At that time, they said cures were right around the corner; it was just a matter of a few more dollars; then they would have the cures available. Well, here we are, 30 or 40 years later, with still no cures. We’ve been running this race for decades, funding it with literally billions of dollars. If all this money has gone to the race to find cures for these diseases, then where are the cures?”

Stupid Cancer. Survivors rule. Remission is not a cure.

Matthew Zachary

Matthew Zachary was a 21-year old college senior and concert pianist en route to film school when he lost use of his left hand. He was diagnosed with pediatric brain cancer, told he’d likely never perform again and given a 50/50 chance of surviving. Sixteen years later, Matthew’s survivorship and dedication to “get busy living” has inspired countless thousands. Today, he is an award-winning recording artist and accredited thought-leader in digital health, social media, youth culture and nonprofit enterprise.

A founding member of the original Google Health Advisory Council, he launched Stupid Cancer in 2007. The organization formed to be a social bullhorn to raise awareness of his own generation of young adults, a largely unknown group in the war on cancer, accounting for 72,000 new diagnosis each year. This age group also represents a population that has not seen any improvements in survival rates and quality of life when compared to other age groups.

As CEO of Stupid Cancer, Matthew has built an extraordinary team of staff members and volunteers who have helped launch a social movement, uniting several industries to address the underserved needs of young adults affected by cancer. He has also flipped the nonprofit business model on its ear by focusing on innovation, enterprise strategies, community wealth and brand partnerships. These efforts empower and retain the organization’s massive following through award-winning click-and-mortar programs and services.

Matthew has a BA in Music, Computer Science and Sociology from Binghamton University and currently lives with his wife and twins in Brooklyn, NY.