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Komen Race for the Cure® – Can We Really Keep Calling This a Race for the Cure?

Edit Note:  Updated on May 8, 2019. Read my updates at the end of this post.

May has evolved into Breast Cancer Awareness Month part 2. Or maybe it’s part 1 since May comes before October. Regardless, May ushers in the season of races. I first wrote about my discomfort with too much racing, not enough curing five years ago.

Yikes. Five years later and we are still talking about the same things – the vast amounts of dollars being raked in from all these races and the dismal amount of money (considering the huge budgets) being earmarked for research to find that elusive cure.

This post (again) focuses on the BIG race, The Susan G. Komen Race for the Cure, specifically the Twin Cities version. (I lived in the Twin Cities for years and still live nearby, hence my interest).

So, I am asking (again), can we really keep calling this particular race, a race for the cure? 

I don’t think so.

Why not?

Because “to race” means to hurry in competition in order to complete or finish something. Cure means to restore to health or wellness or get rid of an illness or disease.

Neither appears to be happening. Urgency seems lacking. There certainly is no cure.

All this “racing” has been going on since 1983. The Susan G. Komen Twin Cities Race for the Cure® has been going on since 1993 and has grown into one of the largest such races in the country. The number of participants (in the Twin Cities event) has grown from 2,500 to 40,000.

Lots of racing. Not much curing.

Again, can we really keep calling this a race for the cure?

I did a bit of wandering around on The Susan G. Komen Twin Cities Race for the Cure® website and thought I’d share a few of my observations.

First of all, the race is always scheduled for Mother’s Day, because well, you know, there’s far more potential to rake in big bucks when you tap into a female-oriented holiday plum-full of emotions about mom, grandma, family and all that other warm and fuzzy sentimental stuff. The timing makes perfect sense from Komen’s point of view.

This year’s event is once again held at Southdale Center (hey, that’s the mall I mentioned in my memoir, btw) in Edina, Minnesota because of course when you’re finished racing, what better way to spend the rest of your day than to go shopping at the mall, right?

As stated on the Susan G. Komen Minnesota site, the intent of this event is to raise funds (at least this is honest and listed first), bring awareness (about what?), celebrate cancer survivorship (feels patronizing to me) and honor those who have lost their battle (ugh… still embracing the battle talk, and I do not feel my mom is being honored here).

Getting even more specific it goes on to say this:

The Susan G. Komen Race for the Cure® is a unique event, designed and implemented to promote positive awareness, education and early detection of breast cancer.  It has proved to be an enormously effective way to reach many women and men with the message that breast cancer is not necessarily fatal if mammography and breast self-exam become routine. As well as being a road race for runners, the Komen Race for the Cure is an emotionally charged event that attracts many first timers and recreational runners. The Komen Race for the Cure is an opportunity for thousands of women, men and their families, running or walking, to spread the breast cancer message within their communities.

I broke the above down and came up with these thoughts on this segment:

  • To promote positive awareness, not just awareness, positive awareness. What does this even mean?
  • Early detection – still the main message, even though it’s an incomplete, rather stale one. Early detection is NOT a guarantee of a cure and it certainly is NOT prevention. We all know mammography has come under tremendous scrutiny of late. And breast self-exams per se are not even recommended anymore.
  • Not necessarily fatal – what about the stage iv people? Guess they’re left out. Again. And do you hear the subtle blaming message tucked in there? Sounds a little like finger wagging at metsters – if only you’d had that mammo or done that self-exam you might not be dying now. Do you hear the shaming message? I do.
  • The race is an emotionally charged event. This is true enough, however, I would say the race exploits people’s emotions and vulnerabilities. I wrote more about this in my earlier post, so I won’t rehash it here; but I will say, please stop assuming all of us love the crazy (too often demeaning) pink shenanigans going on at such events.
  • The race is an “opportunity” for people to “spread the breast cancer message within their communities”. What message? Very vague, don’t you think?

Who writes this stuff?

Next, I visited the race information page in order to learn about fees.

To participate you must pay a fee of $25 (early registration fee) or $35 (later registration fee) or $40 (same day as race fee). I also found it interesting that even children under age 12 pay fees, again, based on time of payment ($12 early) or $17 (later) or $20 (day of race).

So just going with the early registration fee of $25 and multiplying this by 30,000 participants (a conservative number according to the stats), this gives us a grand total of $750,000 raked it from this one race. Now granted, there are expenses, involved. All participants get a t-shirt, a race bib, wrist band and refreshments.

I am no mathematician, but these races bring in a lot of money. You can read Komen’s FY15 report with specifics here (p. 14).

Why aren’t more of these dollars raised being spent on research?

Again, lots of racing, not much curing.

Considering Komen’s substantially sized budget, is 20% on research (check bar graph on p. 14 of report) enough?

I say, no it is not.

In all fairness, Komen has stepped it up. Somewhat. There does appear to be more focus on metastatic disease issues. In the FY15 report it states:

Nearly half of Komen’s new research funding in FY15 was focused on metastatic breast cancer.

It also states:

Landmark report from Metastatic Breast Cancer Alliance (Komen is founding member) found MBC research to be underfunded and identified opportunities to close gaps in understanding MBC and support for people living with MBC.

It took over 30 years to conclude that MBC is underfunded, that there are gaps in understanding it, as well as gaps in support for those living with it? Seriously?

Komen has always been about racing for the cure, so this “oversight” makes no sense at all. It also makes me wonder how much further along we might be in this “race” had more dollars been spent on research over the past 30 years.

I want to be very clear that I commend race participants for wanting to do something. They care. They want to make a difference and they do. But there is potential for them to do so much more if only Komen would shuffle dollars around AND update the messaging.

The burning question for me is still this one:  is 20% spent on research acceptable when as the race name suggests, we are racing for the cure? 

And this one, can we really keep calling this a race for the cure?

I say, no and no.

What about you?

Remind others as often as possible to, think before you pink. Part of this thinking should include reading and sharing:  four questions to ask before you participate in or donate to a breast cancer walk.

May 2019 Edit Update: 

Here is the most recent fiscal report I could locate:  The Susan G. Komen Breast Cancer Foundation, Inc. Annual Report Fiscal 2016-2017.

To Komen’s credit, it has stepped things up and is more focused on metastatic breast cancer than it was.

As stated on page 6:  In FY17, we increased our investment in metastatic breast cancer research to more than 40 percent of our $30.7 million in research funding. 

Is this enough? 

I saw no budget bar graphs in the newer report (as were presented previously in the 2015 Fiscal Report on p 14.) Interesting. No bar graphs showing the breakdowns of spending makes transparency a bit fuzzier. At least it does for me.

The bold goals of research and health equity (p. 10) seem a bit late, though, of course, better late than never. But again, why has it taken 30 years to get to this point? (I’m just asking.)

Also noted, still using same, worn out battle talk on the race page. 

Komen has made progress, yes. But is it enough? 

That’s for each of us to decide. 

Personally, I donate elsewhere.

Think before you pink!

Do you, or have you ever, participated in such races?

Do you feel May has turned into Breast Cancer Awareness Month, Part 2?

Do you think 20% of Komen’s budget earmarked for research is adequate, especially since we are “racing for the cure”?

Sign up for emails/newsletters from Nancy’s Point.

 

Race for the Cure

Twin Cities Race for the Cure – image via Susan G. Komen Minnesota Facebook page

 

 

 

 

 

Six years since my cancer diagnosis and I am still waiting and still asking, where is my epiphany? #breastcancer #advocacy #cancersucks #cancerlanguage
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Linda Boberg

Friday 10th of May 2019

i have participated in these walks, once coming in dead last (no joke) when I was just done with treatment. They are not joyous occasions for me. I find looking at all the pink, the tutus, the shirts which feature people who've died are a bit too much. And now, given how this year is going, I'm going to avoid it altogether.

Nancy

Monday 13th of May 2019

Linda, Yes, sometimes all that racing and all "that other stuff" is just too much. Don't blame you for wanting to avoid it altogether now.

Char

Thursday 10th of May 2018

Susan G. Komen left a bad taste in my mouth. I was undergoing treatment for breast cancer and tried talking to a representative. I explained my situation, I was unable to work because I was undergoing treatment. Her response was, we don't help cancer patients, we only do research, how much do you want to donate? I was surprised at her response. I called the local office, not only once but 3 times and got the same answer. How much do you want to donate? They offered no compassion of any kind. Just how much do you want to donate.

Nancy

Friday 11th of May 2018

Char, You aren't alone in experiencing that bad taste. Komen allocates less than 20% to research, so her response wasn't even accurate. I'm sorry your needs weren't better addressed when you called on them for assistance, though I don't know what your request was for. I have heard they do some great things on a local level. Guess that wasn't the case for you. I'm sorry. Thank you for sharing.

Megan

Thursday 29th of September 2016

Hi Nancy. My mom posted this a few months back and I'm rereading it. She sadly just passed away from mets in her brain. I miss her so much and I want to honor her this October (and always). She was strongly against pink washing and hated breast cancer awareness month because 1 she was diagnosed that month and it was always thrown in her face with all the pink and 2 she was super skeptical and disappointed in all the funding not going to research only. Anyway, what organization is the best organization to donate to? What do you think I could do to honor her? No wearing of pink... just want to get the message out there about this issue.

Nancy

Friday 30th of September 2016

Megan, I am so sorry about your mom. My condolences. As for your question about what to do or who to donate to, that's a personal choice. Personally, I appreciate the work of Metastatic Breast Cancer Network, METAvivor, and BCAction. There are many to choose from. And there are always local charities that focus on doing things within your community. You could always donate to the medical facility your mother was treated at or to a research institution. Or think about what her interests were - not necessarily cancer related, and donate to them in her name. Again, I'm very sorry your mom died. I hope October isn't too rough for you.

Faustine Settle

Wednesday 31st of August 2016

My daughter and I walked 4 Komen Breast Cancer 3 Days and earned over $25,000 "For The Cure" before they took a political stance against Planned Parenthood ...one of the places available for women of all income levels to access early detection. It was then I also found out how much/little money was going into research. I made the decision to not walk for them again. The event itself was inspiring and one in which many close bonds were made...for that I will be forever grateful.

Nancy

Friday 9th of September 2016

Faustine, Wow, that's a lot of money you raised. That Planned Parenthood stance Komen took was horrible. I wrote a post on that. I'm glad you learned the facts about the research dollars and then made the decision to not do those walks anymore. Good for you. Thank you for sharing.

Susan

Saturday 14th of May 2016

Excellent article Nancy. I am sorry for your loss. No matter how many years go by, when it's Mom, it's going to be raw.

I think so much of this is marketing under the guise of awareness building. Not that this is necessarily bad. One of my family's mom's died of it well before pink, and well before the words breast cancer were a house hold name. As I understand it, that in itself made things significantly harder. For all the funds spent on detection, why is it the people (note pleural) I know who have been diagnosed with it in the past five years, more than half had metastatic disease and one died in spite of everything. I think the "marketing" plan needs changing. I hope cancer doesn't turn out to be this generation's version of bad things happen to good people.

Finally, for what it's worth I did not even know Komen did much research funding. I always associated the Foundation with providing exams and mammos for women without such access. Now with Obama care, that need should change. Like government, good projects can become top heavy. I applaud you for pointing out that donors need to be discerning about where their money will best service the end user, and organizations need to reinvent and for the same. I agree, no one seems to be racing anywhere except maybe to the accountant?

Nancy

Monday 16th of May 2016

Susan, Thank you for reading and for your kind words. Funds spent on awareness, education, helping with costs and so on are ALL important. I applaud Komen for helping in those areas. But when you're one of the biggest players, allocating 20% for research just isn't good enough.

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