I’ve about had enough of the National Breast Cancer Coalition. They ignored the requests of MET UP and Metavivor to include treatment for the already-metastasized patient in their Deadline 2020 plan–they say mets research is too hard, so their plan to end breast cancer is to just prevent future breast cancers and metastases, and I guess just let those of us with mets already to die off. Think I’m kidding? Read about how they treated the one metastatic patient in the room at their Artemis meeting. It was cruel, and bullying, and silencing of a patient who is actually dying of this disease.
So, this weekend, they’re having a summit and lobby day to promote their plan that excludes treatment for metastatic patients. It’s Senate bill 746, known as the Accelerating the End of Breast Cancer Act. Sounds exciting, right? What will this bill do to, you know, accelerate the end of breast cancer? It’ll create a commission. That’s it. That’s the whole bill. A commission. Because lord knows a presidential commission is all we need to end breast cancer, amiright? We just need a few handpicked people, like, say, the director of NBCC, and suddenly everything will be fine and breast cancer will disappear. Hooray!
Did I mention that the bill says that the primary duty of the commission is to “identify, recommend, and promote initiatives, partnerships, and research within the public and private sectors, basic and applied sciences, and epidemiology that can be turned into strategies to prevent breast cancer and breast cancer metastasis.” Notice the part where they, once again, left out people who already have mets? It’s one thing for a lobbying group to reject our please for help; it’s another thing entirely to entrench that cruelty in federal law.
This is why I oppose the Accelerating the End of Breast Cancer Act. Because it’s stupid and pointless and will literally do nothing to save my life. I hope you’ll all write, email, tweet, and otherwise contact your legislators to ask them to oppose Senate bill 746.
Sounds like more much ado about nothing.
Thanks for continuing to keep us informed of the real truth!
Those people are absolutely appalling. I’ve tried to add my little voice, and will continue to do so. I am not metastatic (waiting on new imaging at the moment), but how can anyone not have the fear of what could very well happen? I tweeted at the director of NBCC that I hoped she never had to feel regret for what she could have done, but didn’t, if her mother/sister/niece/daughter/self became metastatic. You would think that would make her contemplate it, even for a second. She probably doesn’t even read her feed. Too difficult. Like curing metastatic breast cancer.
You know, a bunch of us went to their conference in 2011 because we thought, well, they’ve got to be better than Komen. We left feeling disenchanted and disappointed. They didn’t even seem to be aware that there was a breast cancer blogosphere or even social media community out there. Weird. What century were they in?? Several of the speakers, however, were researchers and they were awesome. And we bloggers found each other and bonded, which was great. But many of us felt then that NBCC just doesn’t get it. And evidently they still don’t. Appalling. Thanks, Beth. xo, Kathi
As always thank you Beth for keeping me, among I’m sure many others, educated.
Rebecca Timlin-scalera recently posted…The Wrong Brochure