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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Call to Action – 2 Minutes of Your Time

 

A QUICK introduction:

• Nearly 100% of breast cancer deaths are a result of metastatic breast cancer (MBC).
• MBC research accounts for roughly 7% of research funds – including prevention of mets.
• Death rates have hardly changed in 30 years.
• Most metastatic research of one origin can help those whose cancer started elsewhere.
• No matter what you read in headlines, we are not even close to chronic disease status, let alone a cure.

As the White House begins to establish priorities for the Cancer Moonshot they are listening! PLEASE follow the link below to support establishing metastasis research as a Moonshot priority.

Lives depend on it.

Metastasis Research Petition

A journey to the heart of the EMA – Patient-Voice – From Cancer World

A look into the growing role of patient advocates in the European Medicines Agency (Europe’s version of the FDA).

Flexibility and goodwill have allowed patient involvement in the work of Europe’s drug regulators to develop at an impressive pace. But will they be enough to withstand the strains on the relationship

Source: A journey to the heart of the EMA – Patient-Voice – January-February-2016 Issue 70 – Cancer World – Shaping the future of cancer care

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!

When Favorite Brands Go to the Dark Side

The issue first came up a couple of years ago, actually, but I really didn’t have time to deal with it then. It was just weeks before my son’s bar mitzvah and I was in dire need of a pair of black jeans. I headed to the store, tried on half a dozen pair hoping to find one that would not require tailoring (yeah, right) and choose one. Phew!

As I sat in the dressing room waiting for the tailor to pin the jeans I saw it. It had actually been tucked in a back pocket so I missed it at first. The tag. NYDJ had jumped onto the pink bandwagon and become a Komen supporter. Ouch.

Don’t tell anyone, but I bought the jeans.

Fast forward. I’ve been inundated with work – professional and volunteer – and trying desperately to catch up lately. (It’s one of a few reasons I haven’t been blogging much, so thanks for your understanding). Well, as luck would have it, tonight I finished a major project and I wanted to kicked back!

Hello, RealSimple. Just me, the couch and the glossy pages ripe and ready to get me ready for fall. Yahoo!

Flipping through the fall fashion pages, page 81 to be exact, BAM! Wacol has a full page, pink ad. That’s fine, no worries. Until I read the small print: Wacoal is a proud sponsor of Susan G. Komen. My condolences, Wacoal, but Susan is dead, and I will venture to guess YOU are sponsoring Susan G. Komen for the Cure, and THEY are not one of my favorite charities.

For the Cure?

Walk for the Cure.

Shop for the Cure

Run for the Cure

Drink for the Cure

Bowl for the Cure

Bake for the Cure

Sell for the Cure

Cook for the Cure

Crop for the Cure

In the interest of full disclosure, I have walked and I have donated, even as I have questioned. I still do. I do so because there is a community formed as we walk. I do so because I want to support friends in their effort to find a path to making a difference.  I do so because some truly good work is done in the process. And yet I hesitate to jump on the “for a Cure” bandwagon, and I believe a healthy dose of skepticism is in order.