Do You Know What Your Trial is Doing?

clinicaltrialClinical Trials – the path to new drugs and device approval by testing them on humans. As I’ve become increasingly involved in the research side of breast cancer advocacy, I’m often called upon to explain trials – what they are, how they work, and why they are necessary. It is, in my opinion, a critical roll played by advocates who advise researchers through the trial process.

Define. Recruit. Support. Disseminate. More

Advertisements

Komen Shuts Down Other Opinions

from politico.com

Yesterday I wrote about my utter astonishment in the “Singing Mammogram” released by Komen. A quick read of Twitter, as well as comments on my blog, suggest I’m not alone. In fact, it would seem that enough people offered negative feedback on the YouTube page that Komen has turned off the comments.

As the president of another breast cancer organization, I readily recognize that not everyone will agree with me, or with our organization’s take on the issues. I know that there are many opinions. I also know that I’m pretty strong in stating mine. I don’t tell people that they were wrong, but rather that I disagree. I don’t eliminate opinions I disagree with. And I most certainly never, EVER, no matter how confrontational or oppositional a comment, fail to invite open discourse on my blog.

As amazed as I am that Komen approved such a demeaning and sexist video, I’m even more amazed that they have sought to avoid dialogue by simply ignoring the voices of anyone who doesn’t support them.

Is this really how a leading breast cancer organization should behave? How will shutting down our voices lead to “the cure?” What say you?

Breast Cancer Advocates: Five Minutes of Your Time, Please…

5minutesI am thrilled and honored to be attending the upcoming AACR Scientist <-> Survivor Program in April! One of the requirements for us as advocates is to present a poster. Mine focusing on giving researchers greater insight into who advocates are and what they do. To do that, I need your help.

The survey linked below is 9 questions long and will take no more than 5 minutes. I am not collecting any personal data and your responses will be combined with those of others; you will not be identified in any way.

Please TAKE THE SURVEY to help me explain who we are, what we do, and why we do it!

Thank you VERY much in advance!!

OUTRAGE!

Image

In 2012 METAvivor launched it’s “Elephant in the Pink Room” campaign to highlight that despite pervasive awareness of breast cancer thanks to both legitimate awareness campaigns and “Pinktober” marketing, what we still try to ignore is the reality of getting, living with and dying from metastatic breast cancer.

This morning I discovered that the campaign was essentially stolen by Kohl’s Department Stores to “fundraise” for Susan G. Komen and I am truly outraged! (Find the Kohl’s Cares campaign here.) First and foremost, it is disgusting that Kohl’s would impinge on a small non-profit organization’s pre-existing campaign in such a blatant and unethical manner, and do so to sell more products (like their “pink elephant” necklace) and direct “charitable” dollars to another, behemoth of an organization.

More

#BCNext

We are constantly confronted by “breast cancer marketing,” the barrage of pink, from funding free mammograms and research, to supporting individuals with cancer, some of whom can’t even afford child care and transportation to treatment. We range from those with strong family histories, whether BRCA positive or not, to those enduring treatment, to long-time survivors with metastatic breast cancer, to those we have loved and lost. We are each the face of breast cancer.

In America, and I presume elsewhere, there is a great divide between those of us on the ground, living with and dying from cancer – and the other side of breast cancer, those who make funding decisions and allocations of both donated and allocated dollars, private, public and NGO.

If you could have their ear for a moment, if you could tell them what YOU think, what YOU see, what YOUR breast cancer priority is? What if your voice, combined with others like you, like me, could help influence our future?

Comment below or tweet to #BCNext to join the dialogue and spread the word! Let your voice ring out!

Our Seat at the Table

seat-at-the-tableThis is going to be one of those posts that’s going to get me in hot water. That’s ok – I’ve been there before!

This week is the annual San Antonio Breast Cancer Symposium, perhaps the largest and most noteworthy of them all from which emanates some of the biggest Breast Cancer headlines. The magnificent Alamo Breast Cancer Foundation provides a truly INCREDIBLE service to advocates (even above and beyond their scholarship program) by bringing together top people to summarize the day’s headlines. Tonight’s “mentor session” was live-streamed thanks to Dr. Jay K. Harness at BreastCancerAnswers.com.

As always the presentations and questions were outstanding. One sparked a little discussion in the twitter feed.

More

Beating a Dead Horse

For most of us the days of being told how to live our cancer journey fell away when our treatments were over. Gone are the frustrating moments when well-meaning friends and strangers at Starbucks offer remedies, alternative therapies, and all manner of unsolicited advice.

But when you have mets, those opportunities keep on giving, until – well, until the treatment ends, and we all know when that is. Never.

So you can imagine my frustration by the wave of Good Samaritans, breast cancer survivors all, who seem to think that because they once had early stage breast cancer they are in a position to advise me about mine.

More

LIVESTRONG

I mentioned in my last post that there are two things I find particularly upsetting about the Lance Armstrong affair. The first is what it means for my son to have deal with a  fallen hero. The other has to do with LIVESTRONG, an ironic name for an organization founded by a man who, in the end, lived weak.

Eight years ago my mother-in-law died of mesothelioma. She was buried with a LIVESTRONG bracelet. LIVESTRONG has been a favored charity of ours as well. Neither she nor I ever benefited directly from their services, but we believed in the work of the organization.

I do not personally believe that Armstrong’s actions reflect on the organization he founded, most especially since he has put distance between the two, presumably in hopes that his good works can overcome his exceedingly poor judgement. I believe we can only condem LIVESTRONG based on its own actions, even as I believe it would be wise for LIVESTRONG to continue to grow the distance between itself and Armstrong.

Here’s my issue: I, along with many others in the breast cancer blogosphere, have called a number of cancer non-profits to task. Komen, NBCC and others have been reviewed critically. As they should be.

But it occurs to me that I’ve not heard much in that regard when it comes to LIVESTRONG, which begs the question: has LIVESTRONG been exempt from scrutiny because of their affiliation with an American hero?

I honestly don’t know, but I speculate that all the “feel good” around both the man and the organization may have clouded our vision. That’s not to say LIVESTRONG‘s reputation is unworthy, or that it is anything short of the wonderful organization it purports to be. Only that a close look is in order. If they are clear in their mission, true in their leadership and  appropriate in their spending, I imagine a careful look would serve them well.

Can You Hear Me Now? An Open Letter to NBCC

An email today from Sharon Ford Watkins of the National Breast Cancer Coalition is requesting input on defining the 2013 Legislative and Public Policy priorities. The fact that they are asking the “masses” what we think is a good thing. The fact that the “masses” have not yet been heard on the topic of metastatic breast cancer – not so good. Below you will find my response to their request.

Dear Sharon,

You don’t know me, but I have been an eager and vocal supporter of NBCC for the last four years or so. As soon as I had learned about NBCC I knew I had found an organization that “got it” and a place where my voice would reach much further and deeper than it ever could on my own.

When Deadline 2020 was launched I, along with so many others, stood with NBCC in supporting and even justifying the strategy. As a LEAD graduate, both my advocacy and my own healthcare have benefited from what you have taught me. With the skills and encouragement found at the annual Advocacy Summit I have launched a blog, served on peer review with the Department of Defense, attended the 33rd San Antonio Breast Cancer symposium, and found a place for myself in a variety of specific breast cancer communities/organizations. I know my annual membership and limited monthly contribution cannot begin to cover your investment in me. For all of this, I thank you.

But…

I was devastated by the email you sent today requesting feedback on Legislative and Public Policy priorities for the coming year. In it you state:

As you know, in 2010, NBCC set a deadline and developed a strategic plan to end breast cancer by 2020. The plan focuses on primary prevention, stopping women from getting breast cancer, and understanding and preventing metastasis (the spread of cancer), which is responsible for 90% of breast cancer deaths. Recommendations for 2013 should take into account how the proposed priority moves our plan towards meeting the overall goal of Breast Cancer Deadline 2020—ending breast cancer by January 1, 2020.  (Emphasis mine)

I have spoken out on this matter before (Life on the Margins) and I thought in the past year we had seen improvement, but this was a major slide backwards; one that has me on the edge of withdrawing my support in shame.

As you state in your own email, metastatic breast cancer is responsible for 90% of breast cancer deaths. (One might argue that number is even higher…) You also share that your “plan” focuses on the prevention of mets. A lofty and worthy goal, to be sure. And a goal that leaves the estimated 162,000 of us living with mets in the dirt, trampled by the stampede of sexier topics like the Artemis vaccine. Your  recurring choice to focus on the prevention of metastatic breast cancer quite simply writes off our lives.

Part of what drew me to NBCC was my sense that priorities were set based on science, on objective need not impulsive topics that “sell.” Part of what will send me away is to see you sell you like so many other breast cancer organizations have. Please, Sharon, don’t allow NBCC to douse itself in the same pink rhetoric we see everywhere. Women die from mets; let’s focus our attention on the real issue at hand. Let’s tackle what kills us…

Sincerely,

Lori Marx-Rubiner

TAMOXIFEN UPDATE: Everyone Take A Breath, Not More Pills

Since I don’t think I could have said it any better, I have stolen (with permission) the post below from the always-amazing AnneMarie.

Yesterday, I had front row seats to see what happens when a story hits the media during a slow news cycle. People are tired of hearing about the fiscal cliff which I prefer to call by its “formal name.” Does anyone recall the word? Correct!

S-E-Q-U-E-S-T-R-A-T-I-O-N

No matter. It seems we are ready to hang glide but I’ve been too busy running around a two square block area in San Antonio to pay much attention to any news.

San Antonio is lovely. The Riverwalk is charming. San Antonio is bustling. There are researchers and clinicians and all sorts of folks in the breast cancer arena, from all over the globe, in that same two square blocks.

I am here as a patient advocate sponsored by the Alamo Breast Cancer Foundation. We are a group of 31 advocates and we are a busy bunch. Yesterday, the day began at 6:15AM. Breakfast seminar. Then, presentations. Then, more presentations through lunch followed by an interview. (There will be a video posted on the ABCF website and IF I don’t look like a fool, I’ll be sure to share!) Then, a wrap up session on the official presentations and finally, a dinner seminar hosted by Novartis. The day ended at 10PM. Today will be the same. Ditto tomorrow.

This medical symposium is THE event for presentation of the latest in breast cancer research. Each paper gets presented in a 15 minute time slot. Perfect for a chemobrain! Not a chance of getting distracted. If I glance away from the screen for a second, they’ve already moved to the next slide. Yesterday, there was “Big News” expected. It was “The News” for this 35th Annual Symposium. More

Previous Older Entries

%d bloggers like this: