Hill Day

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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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6 Comments (+add yours?)

  1. Lynne Markus
    May 16, 2016 @ 16:49:58

    I want to see more accountability to health insurance and big pharmaceutical companies to cooperate much better with people who have been diagnosed with cancer.
    The stres put upon people dealing with life threatening illness is abhorent.and a disgrace..
    I hope that this message can be conveyed
    These lArge insurance and drug companies are only interested in the bottom line instead of compassion for our citizens in need of help

    Reply

  2. jbaird
    May 17, 2016 @ 12:32:37

    Excellent post! Keep up the good work. I am with you in spirit, but can’t do more due to brain mets issues.

    Reply

  3. Susan
    May 23, 2016 @ 14:30:30

    You are singing to the choir Lori. I am working on writing to my reps.Thank you for all the great work you are doing. xoxo

    Reply

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