Connecting the dots backwards, Steve Jobs style, I was given a certain pet name known only to very few people because I was doing the Dr. Google thing long before my own diagnosis. It was only through this blog and the connections I've made across social media did I learn "patients as partners" is not an "idea" but a movement. It's long overdue. And it's got some serious momentum!
Shared Decision Making Month: Promoting Better Decisions Together is hosted by the Informed Medical Decisions Foundation. For over two decades, the foundation's goal is that patients are educated and active participants so they may partner with their clinicians to make high quality, well informed medical decisions. The foundation is involved in assisting with tools to assist in the patient decision making process. They are involved in research and they are involved in policy making.
Policies are made when WE use our voices. Whether we engage our legislatures in writing or on social media OR, most powerfully, if we have the opportunity to tell our stories in face to face meetings, our voices are imperative. When you come down to it, if policy is being made about us, our voices are quite frankly, the most important ones in the conversation.
Today, I am thrilled to share the story of my friend Barb Bristow. Barb was the first person with whom I "engaged" on this blog. She left a comment and then another and we developed a friendship. She was the first person I really knew who was actually beyond this screen. Barb joined the ranks of the rabble rousers. She encouraged her friends to join Army of Women on her birthday, she began volunteering at the Wisconsin Breast Cancer Coalition. Barb was NED. Now she's not. Most recently, she heard those words. You Know. The only ones worse than "You have cancer." .... "It spread." Barb's recurrence was not local. In other words, she is metastatic.
I have such enormous respect for the courage she displayed as she boldly stepped into the offices of her state representatives to tell her story. She was THERE. She gave a voice to all of the women in the state of Wisconsin. Yes, she was there....
This is Barb's story to tell.... She graciously agreed to share her experience here:
After my final reconstructive surgery in August, 2012 I told myself that in 2013, I was not going to use any of my vacation time for doctor appointments. I’m going to take my vacation time as vacation time! There were a few things I really wanted to do with my vacation in 2013 and I wasn’t going to let cancer ruin it. My mets diagnosis in December 2012 kind of messed with that… So, I started making plans…
I called my three best friends. I asked them if it would work for all four couples to go away for a week and spend some good time together. Love my dear friends! We’re going to Door County in July. That’s another story for another day.
My next vacation day was set for March 6, the Wisconsin Breast Cancer Coalition (WBCC) Annual Advocacy Day in Madison, our state capital. WBCC is a statewide, grassroots, nonprofit, advocacy organization. I had attended Advocacy Day last year. This whole idea of advocacy was new and strange to me. I watched in awe as these strong women went into the offices of our state policy makers and shared priorities. I knew this year I had to be there to share my views, my story.
Here is my story of State Advocacy Day, what I learned about myself and about the other amazing women I spent the day with. (Sounds a little like how I spent my summer vacation)
Kelly (one of the best friends noted above) came along for the ride to Madison. She and I were scheduled to meet with 3 Senators and 3 Representatives from the Assembly! Although I like (ok, love) to talk, speaking to Senators and Representatives was a little out of my league, or so I thought. Dawn Anderson, Executive Director of WBCC brought in some amazing people to talk to our group, prep us a little bit, and make sure we were all talking the same talk. As we got to know each other that morning, I knew I would have no problem speaking. After all, we were all there for the same reason. To show support for people living with breast cancer and to make sure the policies and bills that will help cancer patients remain a priority and remain fresh in the legislator’s minds.
I sat across the table from Deb, a woman living with Stage IV breast cancer. She and I spoke about milestones. Seeing her daughter graduate from high school, seeing her daughter in a prom dress and knowing she would probably not live to see her in her wedding dress. I was there for her. Next to Deb was Shirley, another women living with breast cancer. She lost her job, her COBRA coverage ran out, she is uninsurable due to her condition. I was there for her. And Karen, she came a little late that day because she was having a follow up scan that morning. Her doctors saw a “shadow” in the area of her first tumor. She asked us about recurrence, "How did we know? What did it feel like?" I was there for her. For the families who are forced to choose between their jobs and their family’s illness due to changes to the Wisconsin FMLA, I was there them.
We shared our stories; we laughed a little and cried a little. We shared resources with each other. “Try this, this worked for me”, “Here are a couple of websites for you to check out”, “Call me and I can help you get that prescription paid for”. By the time the morning training session came to an end I was energized and ready to go!
As I walked into the offices of our state policy makers, I felt I was where I was supposed to be. Talking about the Wisconsin Well Woman Program, telling stories of women who were able to have the needed treatment after breast cancer diagnosis through utilization of this program. I was asking the policy makers to continue to fund the program to ensure access to breast cancer screening and treatment for low income women.
I told my own personal story of not having the opportunity to use Oral Chemotherapy drugs because my insurance covers them as a prescription and will not pay the $4000 per month that it would cost. Over one-third of all current anti-cancer medications being developed are targeted, oral anti-cancer therapies. It is imperative that insurance plans adapt and reflect modern cancer care. I was asked by the Policy Advisor for the Senator that authored the Oral Chemotherapy Parity Bill to provide my testimonial to the Senate when it comes to vote.
I’ll be there!
2013 marks the 25th Anniversary of the Wisconsin Family Medical Leave Act. We have a great plan in Wisconsin. We are asking our representatives in office to protect and strengthen our current WI FMLA. Many would be forced to choose between their job and their health (or the health of a loved one) if the WI FMLA were to be repealed.
Senator Jennifer Shilling represents my hometown of LaCrosse. We were able to meet with her in the afternoon. We talked about the WBCC priorities and we talked about her sister who was diagnosed with ovarian cancer. We spoke about her grandmother who has had breast cancer. She gets it. She listened and heard. That’s how it should be! That’s why I was there.
My next planned time off is May 4 – May 7. I will be attending the NBCC Advocate Leadership Summit and NBCC’s Annual Lobby Day on Capitol Hill. I will be traveling with some of the same amazing women I was with in Madison. I was unable to attend last year and I am bound and determined to go this year. I am selfishly hoping to meet some of my “cyber friends” while I am in Washington D.C. (specifically my friend Anne Marie that let me hijack her blog today!)
These friends have shown me the way and I want to help to continue the great work that they have started. I want to take what I learn back to Wisconsin and make a difference at home. I have a lot to give and a limited time to give it. Got to get a move on! That’s why I’m here.
|Sharing in policy making, Barb's on the right..... Right THERE.|
(Kelly Thompson, Senator Jennifer Shilling, Barb Bristow)