Hill Day

Thursday, May 12

It’s John’s 50th birthday, and instead of celebrating, I am en route back to LA after two and a half days in DC. We talked a great deal about my missing it, but both believe deeply in the work that needs to be done to change the face of cancer.

So over the course of today I met with key staff in five congressional offices. I carried the voice of nearly 15 million cancer patients – young and old, a rainbow of skin tones, from every corner of our country. In the current political climate, I find that there is much to be discouraged about, but not today.

Today each office we visited listened to my story, heard from oncologists and researchers, and understood the dire need to more cancer research funding.

Some history: from 2004-2015 we’ve lost a lot of ground with “level funding,” and completely failed to keep pace with inflation, even as more Americans are being diagnosed and great discoveries are on the cusp of arriving. As a result, we’ve lost momentum and talent, especially young talent – PhD graduates who could not count on getting the funding necessary to do their work and live their lives, never mind pay their loans.

2016 was better, with an increase of $2 billion to NIH. This year there is wide-spread and cross-aisle support for an additional increase of $2.5 billion, inching us closer to where we would have, should have been.

There was recognition not only of the critical needs of patients (including metastatic patient because YES I went there), but of the jobs research provides, the support for universities, and the risk of “brain drain” when our best and brightest can’t count on the funding they need to start their labs and push forward their innovations.

But here’s the most interesting part. Every office, when asked what we can do, told us to stay in touch – and to raise the voice of patients! They want to hear our stories – they use them to understand what cancer means to real people, to make decisions about funding and to push harder for appropriations and legislation that will help us. Our stories inspire their work. I know it can hard to have faith in government these days, but we can still make a difference.

ACT NOW. We are a week or two away from the NIH appropriations bill and so Congressional staff have begun turning their attention. The moment to act is right now – and the voices of constituents matter!

If you are a cancer patient – any kind of cancer, at any time in your life – if you are a spouse, a parent, a child, or a caregiver of a cancer patient, please help. You can find your members of Congress here. Please write them a 1-2 paragraph summary of your story, along with a request that the NIH be funded at $36.5 billion.

I want to express a personal note of gratitude to the staff of the following Congressional offices for taking time for us today, for reminding me to have faith in our system, and for the incredible work you do on behalf of Americans:

• Senator Barbara Boxer
• Representative Anna Eshoo
• Senator Diane Feinstein
• Majority Leader Kevin McCarthy
• Representative Brad Sherman

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The Tax Man Cometh: California Breast Cancer Research Program

 

Yet another in the alphabet soup of breast cancer organizations, right? Wrong!

There are countless organizations – and even more letters – in the world of breast cancer. A few stand out, and this is one of them! The CBCRP is much like the DOD’s CDMRP (aka “the DOD”), for those familiar with THAT effort. It is a California state research program that seeks to fund breast cancer research that is, in many ways, unique to California. With our unique perspective, diverse environments and ethnic diversity, we can do things other states can’t. CBCRP has two foci – investigator-driven research and program-initiatives objectives. CBCRP funds high-risk, high-reward research throughout the state.

I am honored to serve on the committee that helps administer the program, and I have a front row to the unique research we fund. CBCRP priorities include a focus on addressing primary prevention, understanding breast biology, and improving detection, treatment, survival and outcomes. There is a particular interest in the role of and unequal burden from environmental exposures, as well. Additional, CBCRP places a premium on the involvement of advocates in research, and reserves funds for community-initiated proposals.

It is the largest state-funded initiate of its kind!

My Cup Runneth Over: A Belated AACR Update

Filled with blessings and making a virtual mess on my kitchen counter, my cup runneth over these days, so I am LONG overdue in sharing my incredible experience at the AACR (American Association for Cancer Research) Annual Meeting as a participant in the Scientist <->Survivor Program.  

AACR: AN UPDATE

If you’ve been to AACR you will totally get this. If you’ve been to SABCS, you’ll come close to getting this. If you’ve never attended a medical conference as an advocate, you may not get this, but rest assured most of us conference junkies really don’t either.

The seemingly simple task of creating a conference schedule is a Herculean effort. The full AACR Program guide is – I kid you not – 724 pages. Sure, there’s an app for that, but mastering the categories in which the app sorts sessions is beyond my chemo-addled mind. All this to say, my primary goal was to collect as much information as I could about the latest advances in MBC and I’m sure there were sessions I never even found. In addition, my AACR’s Scientist <-> Survivor Program team was tasked with the responsibility with preparing a presentation on clinical trials. Plus Jody Schoger (of #BCSM fame) and I presented a poster on Breast Cancer Advocacy. The challenge: too few hours in a day! I had greater success on the clinical trials front than I did with MBC breaking news, but below you will find a hodgepodge of updates I hope you find helpful.

The most significant headline for MBC patients: