April 15th started out for me with excitement and nerves. After weeks of preparation, I showed up for the big day ready to talk about my experiences with genetic testing and BRCA. It felt gratifying to go from feeling completely alone this time last year about my identity as a ‘Previvor’ to speaking at the steps of the Supreme Court about why we need to fight for smarter options to prevent cancer.
If that’s not making breast cancer history…I don’t know what is!! Tweets and pictures of epic awesomeness were all over the internet. Scientists, patent lawyers, and talking heads everywhere were engaging in a heated debate about whether it should be legal to patent human DNA. I was interviewed by the Associated Press and Al Jazeera. What?!
And I made some new incredible friends….
When Chris Hansen and Sandra Park (ACLU lawyers who argued the case) came out for a press conference, we gave them big hugs and high fives. I listened to Jim Watson talk about why he thought it was ridiculous to patent human DNA….and agreed with him but wondered if he was going to share his other crazy ideas about women, Africans, and genetics.
At a reception after the oral arguments, we listened to the incredible Karuna Jaggar, Sandra Park and Ellen Matloff speak about Myriad’s patents BRCA mutations have affected patient care, and effectively shut down research on potential ways to prevent cancer. These women were my heroes. It was awe inspiring to see how much I had to learn from them, and exciting to hear about all the work to be done next! I have so many questions. And I was just excited and thankful to be part of the conversation on such an important day!
I came home and plopped down on the couch ….and saw how Twitter exploded with the news of what happened in Boston. And felt speechless and helpless. I felt the wind knocked out of my sails. And for the next few days I just went quiet and glued myself to the news.
PS – I want to thank Breast Cancer Action for their incredible focus on this case, and for asking tough questions about the future of medical research.