Action Alert Network
Making Our Voices Heard 
Our Journey in June
June 2009 
Welcome to old friends and all of our new readers!  This newsletter is designed to keep you up-to-date on important issues regarding breast cancer. 
Preview of this month's newsletter
Our healthcare discussion continues.  The final outcome will touch all of us.  What we pay and how we pay for it; what treatments, medications and services we will receive, and what benefits we might lose are all being decided right now! Your legislators will not have an easy decision to make.  Knowing what you expect them to do will help them make that choice. 
Featured Advocate: We are pleased to introduce you to a very special advocate, Alice Budno-Hope.  Alice generously shares her experiences from her first NBCCF Lobby Day.  She truly has made a difference.
In Memoriam  This month the breast cancer community suffered a tragic loss.  Many of you knew Carolina Hinestrosa.   Carolina was one of those individuals who touched everyone.  She was a brilliant, passionate advocate that inspired and energized all of us. Carolina passed away on June 21 from soft tissue sarcoma, a side effect of her breast cancer treatment. She will be profoundly missed.
In This Issue
Alice Budno-Hope
Legislative Update
Share us with your friends

  A Discussion on Healthcare Continues

March - "If you expect to dine - first you need to be invited to the table." 
April - "If you don't have a seat at the table, you could end up being the meal."
May -  "Yes,  I really am old enough to stop sitting at the kid's table ."   
And Yes, even I am tired of the "table" metaphor after three months.
But, I could not resist - one  last time... 
"Setting the table is simple when you know what the meal is."
Right now Washington is setting their table.  The topic of healthcare remains in the forefront. There are dramatically diverse viewpoints and legislation being offered. 
This month Fran Visco, the President of NBCC,  sent a letter to the Senate HELP committee strongly supporting comparative effectives research and the necessity to ensure quality care for all. 
Many organizations have signed a letter sent to the Senate Finance Committee requesting the inclusion of educated consumers on every level. 
Fran Visco also appeared before the House Education and Labor Committee to testify at the hearing on the Tri-Committee Draft Proposal for Health Reform.  
The debate about evidence based medicine, comparative effectiveness research and health benefits continues.  Different plans and payment options are proposed by many groups. 
The gathering at the Healthcare table persists.  This is not Musical Chairs... right now, there are enough chairs. 
Do not settle for leftovers while other groups are served second helpings! 
Sit down & speak up: add your voice to ours!
Many voices with the same message makes it easier to hear.  

A final thought...
       "The preservation of health is a duty. Few seem conscious that there is such a thing as physical morality."  ~ Herbert Spencer
Featured Advocate 

Alice Budno-Hope was diagnosed with Paget's Disease at age 31, while she was pregnant with her second child. Her method of dealing with that shocking news was research.  She made certain she knew and understood all of her treatment options. Having surgery is always frightening  but doing so while pregnant is terrifying. Today Alice continues her journey into advocacy. She is a tireless volunteer with the Young Survival Coalition and attended her first NBCCF Annual Advocacy Conference this year. I was fortunate enough to be at the last meeting she talks about. Her "speaking debut" was very moving. Her comments were an honest expression of how she felt. Alice changed the focus of the meeting and has opened a door that no one else had been able to. Alice is a courageous, articulate engaging woman. She has already made a difference. You are going to enjoy getting to know her. We are grateful she made time to tell you about her NBCCF's Lobby Day experience.

I was fortunate enough to take part in one of the most transforming days of my life recently: NBCCF's Lobby Day. I was not sure that advocacy and politics was an arena I wanted to enter so I headed to Washington, DC with the National Breast Cancer Coalition Fund with much hesitation and a lack of confidence that what I had to say would make a difference. Why would I want to get involved? I am a three-year breast cancer survivor, diagnosed at 31. I feel very strongly about the dollars that need to be spent on research for Breast Cancer and I want there to be a Breast Cancer Advocate sitting at the table when the decisions are made as to where the monies go.
After a few days of meetings and instructions we were off to Capitol Hill. What a sight to behold! The center of American Democracy!  Where all of the magic happens! Wait until they meet us - we are ready for them!
First stop - my very own congressman. We were met by his Legislative Assistant who focuses on healthcare and who wrote down everything my Team Leader said and nodded with interest.  Hey - this isn't so bad. The Congressman even popped his head out to say hello and to explain to me that he visits my part of his district - to shop at the mall. He said if there were more community events in our area he would surely be there. Was he trying to convince me of his interest?
I was able to sit in on two additional meetings, one with a staffer and one with a Congressman. It was such an amazing opportunity to sit with an actual Member of the House!

Then it was time to meet with the Congressman who represents the district where I was born, raised and own a home. We stopped at his office for our assigned meeting time and his Scheduler insisted the meeting was later in the day. Who am I to argue? We came back later.
As soon as we entered - for the second time that day to meet with him - he left his office. So we met with his Legislative Assistant, who clearly knew the Congressman had no interest in breast cancer or any other healthcare related issue. After she made it clear that he does not support any type of healthcare reform, I felt it time for me to make my speaking debut! I expressed sadness and confusion as to how someone could not only make and not show up for an appointment, but also not even listen to the concerns of his constituents. The woman was taken aback that I would even say such a thing! It was at that point that she actually began to listen to what we had to say. 
As a result, my Team Leader is working on a meeting with the Congressman that he will actually attend and put some consideration into an issue he has not addressed for his entire tenure of 25 years!

Other highlights of the day were travelling the underground passages beneath the buildings, having lunch with all of the legislators in their amazing cafeteria and a reception with Representative Anna Eshoo (CA) and Senator Patrick Leahy (VT).
Change does not come overnight, but if each person tries to make a small difference, the big wheels of government will begin to turn!  Maybe I will see you at Lobby Day 2010?
Legislative Update
BCERA site logo
We ask that you continue to remind these members of the importance of the DoD Breast Cancer Research Program.  They are the only legislators from Pennsylvania that did not sign the Dear Colleague letter in support of this important program.
Links you can really use
Survivorship Plan
Join Our Mailing List 
 Clip in for Cancer


As always, this newsletter is a work in progress. We welcome your suggestions and comments. It's easy to do it - just hit reply and tell us what you think. 
If you know someone that you want to recommend as our Featured Advocate, tell us about them.  We are very easy to talk to and very good listeners. 
We really love to be forwarded, so share us with your friends. Just use the link at the bottom of the page to be sure the graphics will be included in the forward.  
Thank you again for all that you do.
until next time....