Sunday, April 13, 2014

Dear Breast Cancer Age Discrimination, You Still Exist?



Here it is my lovely friends, breasties and survivors; an update and my first (and potentially only) response that I received about my age discrimination inquiry with the organization Bright Pink. I had previously decided not to mention their name on my most recent blog post, but I've since changed my mind. I now find it imperative to state their name as I would not want others to walk down the same path as I have in trying to demystify this breast cancer age discrimination matter. So, read our exchange of e-mails and as always, be sure to comment with your thoughts or list those organizations and people that you have found helpful on this journey. Their correspondence is in Bright Pink! Mine, is well, not so Bright Pink.

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Hi Dee Anne, 

Thank you for your note and I apologize that you had not previously received a response to your inquiries. I am happy to explain why we are focused on preventive breast and ovarian health for young women specifically. Bright Pink was created to fulfill a void in the women's health space. While there are organizations out there that focus on survivorship, there was not a resource for young women who had not been diagnosed. These women have the power to be proactive with their breast and ovarian health. That's where Bright Pink comes in. We focus specifically on prevention and early detection of breast and and ovarian cancer in young women and provide support for women at high-risk for these diseases. In order to be successful in our work, we have chosen to maintain this specific focus. We are not so naive as to think we are good at everything so when someone reaches out that could better benefit from a partner organization, we work hard to direct that woman to the best resources available for her specific needs. This allows us to stay focused in our area of expertise - education and support for young women - and allows other groups to continue to succeed in their specific areas.

Our support programs offer guidance, community and camaraderie for young women who have not been diagnosed but who are at high-risk for breast or ovarian cancer due to a strong family history and genetic predisposition. As a 3-time survivor, your journey has varied greatly from these women, and you should receive specific support tailored to your unique experience. We would never turn anyone away from an educational perspective - all of the information published on BrightPink.org is open to anyone and everyone who can access it - but when it comes to support, you deserve an organization that can best serve you as a survivor. 

Many qualified partners who specialize in survivorship support are listed on our website here -http://www.brightpink.org/ive-been-diagnosed/. 

Thank you for reaching out, and please let me know if we can help in facilitating an introduction to another organization equipped to support you as a survivor. 

Best wishes,
Eden


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Hello Eden,

Thank you for your return response and email regarding my inquiry about your age limits with Bright Pink. It is much appreciated as my last email did not receive a response.

With regard to the main focus and message of Bright Pink, I am in complete agreement that there is a need and a void that has been filled with the Bright Pink organization. And as a 25 year veteran educator, I understand the need for education, prevention, awareness and self-advocacy. Your message is clear in that sense and Ms. Avner's brave decision to have a preventive mastectomy was indeed both an intelligent and courageous choice.

My confusion, however is with the mix of both prevention and survivorship with regard to all ages of individuals. And while I agree that prevention is key for saving lives, the age cutoff, in my opinion, is extremely exclusionary. If the notion is to save lives with this disease, then age is a factor that doesn't belong in the mix. I equate that to having a breast cancer-based organization only for specific ethnic backgrounds - a puzzling notion at best. And as we all know, this disease crosses all gender, ethnic and age boundaries. I shutter to think about a 46 year old woman seeking support for prevention should she identify as high risk. Would you turn her away as you did me? 

Additionally, I am further confused about your message that specifically focuses on prevention and yet you feature breast cancer survivors and Fab-U-Wish Winners who have also been diagnosed on your website. So, in light of this, it does appear that survivors are welcomed to Bright Pink - well, as long as they're between the ages of 18 and 45. 

And with regard to Bright Pink teaming up with the Kentucky Derby SURVIVORS Parade this year, I find it odd and ironic that although your 'specific focus' is with 'YOUNG women' - Bright Pink is accepting funds and donations on behalf of the 140 survivors participating in the parade to which many are clearly over your age bracket of 45. Why would you welcome funding for ALL ages when your specific focus is on YOUNG women. Such a mixed message and disconnect in my opinion, wouldn't you agree? But, in case you're unclear, here is verbatim, what is documented on the Kentucky Derby website:

Kentucky Oaks 140 Survivors Parade

Thank you for nominating and sharing your survivor’s story, voting for your favorite and most inspirational story, and for donating to Bright Pink on behalf of your favorite nominee. Your participation and your donations will help to educate, support and empower young women nationwide in prevention of breast and ovarian cancer. You can still donate to Bright Pink, now!

So my hope, is that in the future, Ms. Avner will consider opening up prevention, awareness, camaraderie and advocacy for ALL ages of individuals that is inclusive of both genders. I would like to think that the main goal should purely focus on saving lives.

In terms of my own journey as a 3-time survivor, it has been a unique experience and there are no organizations to date that focus on that, which I am fine with. I am a medical anomaly to not only the breast cancer community but to several teams of doctors. I already don't fit into a group so I continue to reach out to groups that reciprocate support in spite of my uncommon path. And as you so politely stated, I do deserve an organization that can best serve my needs and clearly I am not welcomed at Bright Pink. And thanks for your willingness to help facilitate introducing me to another organization "equipped to support me as a survivor" - but I believe I can handle this independently as this ain't my first breast cancer rodeo!

It is also transparent that Bright Pink is simply not an organization for this 'hereditary, 3-time, breast cancer survivor.' I had hoped that I could reach out to Bright Pink personally as well as, stand behind this organization on behalf of others in need, but it is clear that it is simply not a fit for me or many others. So, best wishes to you all with your specific focus, but this gal is moving on.

Lastly, if you'd like to find out more about my 'unique journey,' other organizations, films and individuals, I would welcome you to visit my blog at http://cancercancerbo-bancer.blogspot.com/. Here, you will also find my own campaign and education for my 'breasties' of ALL ages on my blog for their reference so they can make the best decision for which types of organizations best fits their needs. Oh, and you'll also find our correspondence on there as well, because as we all know and as Bright Pink states, 'Knowledge is Power!'
 
Dee Anne Barker, M.A.
Nothing But Blue Skies


Wednesday, April 2, 2014

Is There Breast Cancer Age Discrimination?


Recently, I came across an organization that is doing some great work with regard to supporting patients and warriors, disseminating valuable information and even has a celeb tied to the organization as their spokesperson. 'On a mission to reach millions of women between the ages of 18-45...'  Well darn-it-all, I'm 50-freaking-3! But wait, I WAS 31 and then 36 for my first two breast cancer diagnosis, does that count?

Immediately, I must confess that I felt discriminated against and slightly disturbed by their age cut-off. I mean, even most job applications don't discriminate against gender, age, sexual orientation, ethnicity and the like. Why this? Why now? Why with breast cancer?

So, I did what any advocating, 3-time, breast cancer warrior should do....I wrote them, inquiring about this head-scratching cancer paradox. Furthermore, I saw that they were teaming up with the Kentucky Derby's Survivor's Parade this year to which one of my fave breasties, Jill Brzezinski-Conley is a nominee to walk in (please vote for her - she deserves it!), so I thought I would investigate the age issue a tad further. Now Jill falls well within their specified age range, but I did happen to notice that a few of the other nominees clearly fall out of the top of their age bracket of 45 which got me to thinking... will this organization not speak to or support these women as they partake in the parade? Will they be shunned because they happened to have been diagnosed past the ripe age of 45? Will they not receive the recognition that they so deserve? Will they not be given their parade gear because - ugh, cancer picked on them way too late in life? And even more importantly, what about my breasties that are beyond the 45 year age range that are terminal and in the fight of their life - will they not receive the respect that they've earned and should have?

Hmmmm.... maybe it's just me, but does any of this make sense to you?

So, now I'll see if this popular organization that I actually wrote 6 months ago inquiring about their wish-granting program, will AGAIN, ignore my inquiry and kick this 53-year old cancer warrior to the curb? Will I not receive, at the very least, a respectable response? I'll keep you posted.

In the meantime, let me switch gears and flip this annoyance around and refer you to some awesome, non-age-discrimination organizations and peeps who I know you will find supportive:

Stupid Dumb Breast Cancer
Talk About Health
Facing Cancer
Breast Cancer Social Media 
Healthline

Lastly, feel free to add an organization, group or any peeps that support ALL breast cancer survivors in the comments section. It's important for us to help each other during the experience of breast cancer and to band together, no matter what.