Sometimes I see something, read something, watch something
that will simply refuse to vacate my thoughts. It happened again this weekend,
when I watched the documentary
Pink Ribbons, Inc. It hasn't stopped bouncing around my golf-coursed brain.
This thought-provoking movie is currently available on
Netflix. Sometimes people ask what they can do to help me. Would you like to know how you can help? Do me the favor of investing 1.5 hours to watch this film before you send your hard-earned money to a
fundraising organization. Because we are doing it wrong.
Please understand, I am not trying to deny the good intentions of the organizations raising these funds or the people
donating to them. There is nothing wrong with us wanting to do something to help someone else. I
know that helpless feeling when it seems that there is nothing you can do for someone. We want to take action. To help out. To show support. Anything. Because someone we love is
suffering. And there is no known cure. Or no known cause.
Thankfully, I don't have Stage 4 breast cancer that has metastasized to
my liver. I am not trying to prepare myself for my impending death. I am in no
way comparing my silly little brain lesions to having my boobs cut off while I simultaneously poison the remainder of my body in an attempt to halt tumor creep.
I don't have breast cancer. I am lucky enough to only have
MS. Which is a cakewalk compared to any stage 4 cancer. Because there is no
stage 5.
There is one thing that I pulled out of that amazingly
educational documentary, which applies to MS as well as cancer. And it is this: we
are using the wrong words. We are chasing the wrong things. We are funding the
wrong science.
Pink Ribbons, Inc.
illustrates how corporate America has hijacked the most predominant symbol of
the disease of breast cancer. That pink ribbon is everywhere. Ford Motors, Avon, even the
NFL have all participated in the awareness campaign.
Aside—Is it a coincidence that the NFL started telling their
players to wear pink cleats at around the same time as they were having PR
disaster after PR disaster, usually involving
some misogynistic act? Just askin’.
I have, myself, participated in the pink ribbon campaign. I know that, given two similar products, I have always purchased
the pink one in hopes that a little money goes to the Komen Foundation. And, in
fact, the money DOES go to Komen.
But they are spending it wrong.
Since its inception, The Susan G Komen for the Cure
foundation has raised around $1.5 billion for breast cancer education, research,
and health services programs. That would be billion. With a
B.
Can you spot the problem? I couldn’t. Even though it was
staring me in the face. It’s right there in the name of the organization. While
we are all busy running for a cure, hardly anybody is trying to chase down the
cause.
Of all that money, only 10% has been dedicated to
researching the causes of breast cancer. And far less than that has been earmarked for environmental
cause studies. In the 1940s, 1 in 22 women would experience a form of breast
cancer in their lifetime. Today, it is 1 in 8. What has changed? Could it possibly be the environment we all live in? These days, we are all breathing polluted air, ingesting chemically-altered foods, and drinking from plastic water bottles. Grandma didn't do any of that.
Interestingly, MS is on the rise as well. Especially in women. It used to
be that for every man diagnosed with MS, two women were. Now the ratio is 1:4.
And the rise of pediatric MS diagnoses is alarming.
The biggest predictor of both MS and breast cancer is this:
being a woman. I'm not going to go into this in depth—at least not in this
post—but if you want to know more, Google “Hazards of Environmental Estrogens.”
Just don't read it right before bed. It will give you nightmares.
In capitalist countries, there is a growth of organizations with the
main function of raising money in the name of a disease. And the message that
these organizations are shouting is almost universal: Find a Cure.
But these are the wrong words.
We keep using the wrong words. I understand the urge to dress in ribbons and tutus to run
in a group of like-minded crusaders in solidarity of “warriors” and
“survivors.” And there is no denying the enormous amounts of strength and bravery that any person diagnosed with a serious disease must summon.
But here is why the Survivor Warrior is the wrong image to convey. It implicitly relays the idea that—if people try hard enough—they can beat This. What
ever the This is. It tells people that they must be cheerful, optimistic, and strong.
It leaves no room for the very human emotions of anger, sadness, and fear. We say that people who die from their disease have “lost the battle.” As if they just didn't fight hard enough.
Calling people fighting a disease “survivors” suggests that the
disease is somehow their problem to conquer or their consequence to live with. It is little
more than sleight of hand. Quick! Come watch us give out awareness ribbons from
the corporate-sponsored booth. Then you won't find yourself examining all the things
that are outside your control.
We all need to stop asking to find the cure. We need
to find the cause.
So much energy, research, and money is going into keeping us
diseased people around for a longer amount of time. Tamoxifen, Avonex. Tenofovir. These drugs
keep us Walking Diseased alive. They slow down the progression of our
illness. But keeping us alive is not the same thing as helping us live.
Since the Reagan administration, our government has been
shifting the responsibilities of our health and welfare to private entities.
Corporate America is now in charge of making you well. The immediate and
enduring result of this is the monetizing of a cure for diseases, not the research of disease prevention.
These corporations really do want to make you well. Or at least
better. They wouldn’t want you to be completely healed. There's no money in that. And they certainly
wouldn’t make a profit if you had the audacity to never get sick to begin
with. Not when they can squeeze 10 more years of medication costs
from you at $1200 a pop.
Do I sound cynical and jaded? Good. Because I am.
In 1955, Jonas Salk eliminated polio. With one shot of
vaccine, costing about $2 per child. He didn't apply for a patent for this
medication because he wanted it to be easily available to every family in the
world. In choosing not to patent his invention, Jonas Salk forfeited an
estimated $7 billion. With a B.
Can you imagine if Dr. Salk was working today for one of big
players in pharmaceutical research? With the board members of those research
groups representing pharmaceutical manufacturing, chemical production, and
energy industries? We would still have a polio vaccine, I am quite sure. But it
would cost $250 and need to be updated yearly for the rest of your life. Thank
goodness we all have universal health coverage, right? Oh, wait...
Somewhere between 1950 and 1980, our society swerved off
course when it came to taking care of the well being of each other. And now we
need to make a course correction.
Instead of dressing up in silly t-shirts and painting
ribbons on our faces to walk three miles with the purpose of spreading words
and finding cures, we should all—every single one of us—start painting signs and
marching on Washington. We should stop buying pink blenders and start educating
ourselves about GMO foods fertilized by Syngenta. We should stop mailing in
yogurt lids and start mailing furious letters to our Congress, demanding they
make laws forbidding companies like Eli Lilly pharmaceuticals from
simultaneously profiting off cancer drugs and the synthetic hormone given to
dairy cows, which is known to be carcinogenic.
Yes, they really do that. The Breast Cancer Action Group calls it Milking Cancer.
Arg! What can we do? What
do we do? How can we put this crazed horse back in the barn?
When we are donating money to a cause, our hearts are in the right place. I know they are. But we
are doing it wrong. We do need to join together. But not to celebrate or
support. We need to become a single voice, demanding answers. In the 30 minutes
it takes to run a 5k, you could email your two Senators and your
Representative. Tell them that we are nothing as a society if we cannot do a better job of taking care of one another.
Here is how to find your congressman’s contact information:
We all need to make sure that the money we collectively raise
goes to the correct research. Don’t hand your hard-earned money without
demanding to know what your investment will yield. We can all act to make sure
that the research we are funding is doing it right.