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Jan 29

i'm too young

The Cancer Lifestyle
By Matthew Zachary

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Food For Thought.

I saw a huge billboard in NYC advertising for this website

http://myhivlife.com/

Instead of ‘how a bill becomes a law’ I kept exploring the whole idea of
‘how a death sentence becomes a chronic condition’, not focusing on ‘why’
(public policy, medicine, prevention) but rather focusing, specifically, on
‘what next?’, i.e. the aftermath of social and cultural change that follows.

When a disease transforms from death sentence to chronic condition, does
this represent a tipping point for social change, fostering the genesis of
an entirely new, underserved demographic whose lifestyle and psychographic
behaviors hold the key to better serving their unique socioeconomic,
political and cultural needs through the balance of their extended
lifespans?

Does the early identification of this emerging population constitute fertile
opportunity for innovative ventures in social entrepreneurship that can
effectively address and identify these unique needs though moral and ethical
exploration both social (market research) and clinical (population science)?

Example: Diabetes and HIV were once a death sentence. Today they are chronic
conditions [in the US] which have been culturally desensitized and socially
destigmatized into the mainstream. The focus is no longer specifically our
favorite word ‘cure’ because death and suffering have, more or less, been
marginalized to the best extent that can be.

Progress ­ not cure ­ has yielded the need for MyHIVLife.com.

After all, “Living with it” is better than the alternative, right?

Is cancer in the United States following a similar trend?

I know it is. It already has.

Many doctors currently shy away from the word ‘cure’ even though it’s an
acknowledged scientific term with a Webster’s definition. It’s about
“survivorship” now, the quality ­ and not necessarily quantity ­ of your
life.

How many “MyHIVLife.com”-type websites are there for cancer these days?

Hundreds.

They’re popping up every day, raising public awareness, discussing the
‘lifestyle’ of what vigilant self-advocacy we as survivors must undertake
simply by living with, through and, hopefully, beyond our diagnosis.

And the word “beyond” is even losing meaning. Being told “you’re cured” is
not the end of story and, as too many already know, cancer can be the gift
that keeps on giving.

So the “survivorship” is the cancer lifestyle. What does it mean to be a
cancer patient? A suvivor? A caregiver? ­ Especially if you’re under 40?

But that’s a whole other rant.

Food for thought.

Matthew Zachary is the Founder and CEO of I’m Too Young for This, the nation’s leading grassroots advocate for the next generation of cancer survivors and their caregivers in their late teens, 20s and 30s. A TIME Magazine Best 50 Website for 2007, they have helped bring the cause of ‘cancer under 40′ to the national spotlight and rallied a brand new generation of activists to ensure prompt detection, advocacy, research and support for this forgotten population.

3 Comments »

  1. Hi Matthew, IA Crew, et al.,

    I don’t think the cancer community is even close to ready for the “what’s next”. We have yet to figure out how to reduce cancer mortality rates by 60% simply by providing access to health care (public policy). We have yet to develop treatments that have significantly bumped our survival rates from where they were decades ago (medicine). We have yet to fully understand how to use detection methods to our advantage nor have we even made a dent in inspecting the environment to understand the causes of cancer (prevention).

    The only reason the HIV community is able to focus on the “what’s next” is because they were so successful at the public policy, medicine, and prevention so as to achieve a 32 to 50 year survival rate from the time of diagnosis. They were also able to achieve their progress because HIV is one disease, where as cancer is thousands of disease types. Because the HIV community was active and smart as hell in knowing how to stand up to and make demands to the government, where as the cancer community largely things of politics as a dirty word.

    I think the reason doctors are not so focused on ‘the cure’ is not out of desire to move beyond it, but simply because we are so far away from achieving it and we need another way of operating, a holding place for life until we can do better at saving lives than we are doing now. In the midst of improving quality of life, we’ve gotta be careful not to lose sight of the ball: the cure. Survival is only a word that pertains to the living.

    To the fault of the government, scientific community, and patient advocacy groups, doctors are forced to operate in the reality of a forty year time span in which not much progress has been made; they are left to say to patients – “Well crap – ummmm, we’re going to do everything we can to try to make your quality of life better cause we still have not much else to go on.”

    Comment by Kairol Rosenthal — Jan 29 @ 11:32 am

  2. I completely agree… ‘Living with it’is more like ‘coz none’s sufferring as the treatment is so advanced… and Doctors in India in a bid to be politically correct will call you ‘Clinically Disease Free’ instead of ‘Cured’. i wish this foundation extends its support to India. We really need it

    Comment by SLal — Jan 29 @ 12:38 pm

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