A story about smart, courageous women; a heroic Senator; and a revolutionary way to fund research
PART ONE
The Wisconsin Breast Cancer Coalition (WBCC) has for many years asked our members to call their representatives in Washington DC and ask them to sign on to the DoD-BCRP Appropriations letter. Some of you know about this “unicorn”. But many others don’t. And why is it sort of like a unicorn? Well, I’ll tell you. It came about almost 40 years ago because a bunch of women got fed up with people they loved dying from breast cancer and they pushed and pushed (and they huffed and they puffed) until they got what they felt they needed. They bent the system. They made powerful men listen to them. They even insisted (and got) the right to sit at the table deciding how the money would be spent.
But I’m getting ahead of myself. With a little help from the storytelling of one of the women who was there–the one and only Dr. Susan Love–here’s how it came about and why it is so important. I reference her book, my (signed!) 1995 2nd edition of Dr. Susan Love’s Breast Book.
Back in the dark ages not a lot of money was being spent on breast cancer research. While it sounds like a lot of money, in 1992 only $92 million was allocated for it. This just wasn’t enough given how many women were dying from breast cancer. So a group of women from different breast cancer groups gathered to discuss how they could get more. They’d have to get “political” because–well, the money for research at the National Institutes of Health (NIH) is allocated by Congress. And bake sales, while yummy, will not cure breast cancer. Not all of them were on board with this, but those that did stay on board quickly learned that when they went to Congress, they were repeatedly asked “How much do you need?” (Proud side note: those that stayed were the founders of the National Breast Cancer Coalition).
Being smart women, they knew they’d better come up with a good answer. One that was supported by scientists, not a number plucked out of thin air. So that’s who they asked. They held hearings with scientists and asked them what they needed. They arrived at $433 million. A very specific amount!
These same, smart women then went back to Congress with the answer to the question they’d been asked. And (SURPRISE!) they were repeatedly told there wasn’t any more money. To which our smart women responded “Well, you found money for the Savings and Loan bailout. You found money for the Gulf War. We think you can find this money too if you really decide it’s important that women are dying.” They kept at it–testifying and lobbying.
This was 1992. Senator Tom Harkin was chair of the Senate Appropriations Committee, which was responsible for doling out money to the National Institutes of Health (NIH). Senator Harkin had lost two sisters to breast cancer so he was sympathetic. He increased the NIH funding for breast cancer by about $220 million and then tried to transfer money from the Defense Department to the domestic budget to get to that $433 million target. Senator Alphonse D’Amato also introduced an amendment to just take 3% of the Defense Department’s budget. The advocates continued to find friends and helpers in Congress but things were moving slowly.
However, as with most things political, timing is everything. Dr. Love recalls in her book that 1992 was the year of the Anita Hill hearings and a lot of congressmen were feeling like they needed to spruce up their images in that election year. Doing something to HELP women might look pretty good. Because of the work of our advocates, they also began to understand that this was about their wives, mothers, daughters and sisters too. It wasn’t just a random demand for money. They started to get on board with this idea of taking money from the Defense Department to give to breast cancer research.
Meantime, the Defense Department was like “Whoa, everyone wants some of our pie!” They were concerned that if they gave back part of their budget, they wouldn’t get it in the next budget. And Senator Harkin had noticed that there was already $25 million in the Defense Department budget for mammogram machines. At the urging of our tireless advocates, he tried to increase that to $210 million. Defense eventually went along with it.
And so, as Dr. Love says, “Against all odds, we succeeded.” They got the $430 million.
This was the first of what are now known as “Congressionally Directed Medical Research Programs” at the Department of Defense. There are now over 35 funded programs for different diseases. Since that success in 1992, they have been given, and have managed, $7.7 BILLION for these research programs.
What else makes the Department of Defense Breast Cancer Research Program such a unicorn? It was the next thing these advocates turned to. They wanted to have a say in how that money was spent. Because, no offense intended, researchers spend most of their time in a lab – not talking to women with breast cancer. Women who have had breast cancer now sit on a panel that reviews which proposals get funded and which don’t. Scientists learned to listen about what’s important from the women who will benefit from research.
And THAT my friends, is the story of how a good chunk of breast cancer research wound up being managed by the Department of Defense. It’s also a story about doing your homework and taking a stand. About not giving up when someone who you elected to office tells you “no.” About caring so deeply about saving women’s lives that you take practically nothing and turn it into a unicorn that is saving women’s lives every day.
Next installment: What else is so special about this unicorn and why do we have to keep feeding it?