March 20, 2016

Roll Call: The Cancer Caucus – The personal stories shaping the new fight for the cure

ROLL CALL

The Cancer Caucus
The personal stories shaping the new fight for the cure
By Lindsey McPherson

Vice President Joseph R. Biden Jr.’s loss of his son Beau drives him as he leads the national “moonshot” effort to cure cancer, but he’s far from the only policymaker whose experience with the disease motivates him.

Here are the stories of Democrats and Republicans, men and women, whose personal battles have led to bipartisan support for increasing National Institutes of Health funding and accelerating research to find cures for cancer and other fatal diseases.

UNITED STATES – FEB. 10 – Democratic National Committee Chairman Debbie Wasserman Schultz, D-Fla., speaks during an interview in her office on Capitol Hill in Washington, on Wednesday, Feb. 10, 2016. Schultz is a Breast Cancer survivor since 2008. (Photo By Al Drago/CQ Roll Call)

Recognizing Genetic Risks
Rep. Debbie Wasserman Schultz

Her breast cancer diagnosis alerted her to testing that too few women know about.
The only people Rep. Debbie Wasserman Schultz told about her cancer diagnosis at first were close family members, her roommates and the need-to-know staff who helped manage her schedule as she was going through treatment.

“When you have cancer, everything else falls into the background and your sole goal is just to beat the cancer,” the Florida Democrat said. “It’s a very isolating thing to go through, so you want to make sure you have some control in your life because you really feel like you’ve lost control over everything that’s happening to you.”

But she knew she wouldn’t stay quiet forever. She wanted more women to know what she found out with her diagnosis at age 41: She carried a genetic mutation that gave her an 85 percent chance of developing breast cancer.

“It was eye opening and sobering enough to be hit with the anvil of a cancer diagnosis, but on top of that to learn that I have been ticking time bomb my entire life because I carry this mutation — that was really a double whammy.”

Wasserman Schultz learned she had breast cancer in late 2007 after finding a lump in her breast during a self exam. Following her diagnosis, she said she “just didn’t absorb that a young woman at my stage of life could get breast cancer.” But then she learned she carried a mutation of the breast cancer 2 gene, BRCA2, that is common in Ashkenazi Jews. Since the gene also put her at risk for ovarian cancer, she opted for surgery to remove her ovaries, as well as a double mastectomy.

Wasserman Schultz had seven surgeries throughout 2008 — all while continuing to serve as a congresswoman (she never missed a vote) and work on the presidential campaign.

“I went through a year of hell, to say the least.”

In 2009, she was ready to share her story. She announced the Education and Awareness Requires Learning Young (EARLY) Act to provide funding to raise awareness about breast cancer among young women, especially those in populations that face a higher risk.

“If I didn’t know, as knowledgeable as I was about cancer — and I am certainly not a cancer expert, but legislatively I had been very involved in fighting cancer — then you know I realized how many women in my same situation don’t know.”

Congress passed the EARLY Act in 2010 as amendment to the Affordable Care Act and reauthorized the funding in 2014 for an additional five years.

And when gynecologists and advocacy groups gave conflicting advice on when women should begin breast cancer screenings, Wasserman Schultz and Rep. Renee Ellmers, R-N.C., added language to year-end spending legislation in 2015 tasking NIH and cancer experts to come up with a consensus recommendation within the next two years.

Wasserman Schultz is especially interested in seeing increased investment in genomic research that could make a difference for her children, particularly her two daughters, who are at risk of carrying the same genetic mutation.

“It breaks my heart that they live in fear of learning that they carry that mutation, too. Whenever they learn that — hopefully they don’t have it — but whenever they learn that, then they spend years struggling with, ‘Do I have a prophylactic mastectomy? Do I take steps to reduce the chance that I’m going to get cancer one day? When do I do that? Do I wait until I meet someone and roll the dice and hopefully take the chance that I won’t have breast cancer before I have children or before I’ve gotten married, before I can nurse my children?’

“I was fortunate. My husband and I had all the children that we planned to have when I was diagnosed and didn’t know about my own genetic risk prior to that. But my children will be in a different situation. With a ‘moonshot’ effort, we can really make sure that we can make so much more intense progress.”