Monday, August 11, 2014

Doing it Wrong

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.


  1. haven't stopped by in a while - just wanted to say that this is a GREAT post.

    keep taking names and kicking arses.

    (couldn't resist keeping it UK)

  2. Whenever I hear about a new MS drug first I'm all excited, and then I'm thinking the meds are still targeted at the consequences and mechanisms of the disease, rather than the causes. And it's exasperating. This is a great post, I'm sharing it on Twitter.

  3. Great post, I'm convinced our food is killing us.