Thursday, March 11, 2010

I'm Deb. I'm a constituent and I'm a survivor.

Speaking these words was the beginning of my first advocacy. I can't even begin to describe the way I felt when I heard those words coming out of my mouth. It was the first time I'd ever called myself a survivor. A survivor. It was so powerful to me as well as the people around me. It's a word that when uttered garners attention.

I went on to speak to an audience of 5 legislative aids and 3 fellow survivors about our support for A.8278A Kellner et al,; S5000A Duane. It's a bill to limit out-of-pocket cost of prescription drugs. It was one of the 3 topics that supported the legislative agenda of the NY State Breast Cancer Network.

I gave a quick summary of the bill. I spoke about how if it was passed it would prohibit health insurers and HMOs from creating specialty tiers within their prescription drug formularies. I spoke about how a number of insurance agencies across the country had already adapted a 4th tier, where the co-pay wasn't a fixed fee, but a percentage of the actual cost of the drug. Allowing this 4th tier limits people with life-threatening diseases and chronic illnesses access to drugs that can dramatically improve quality of life during the duration of their lives. As an example specific to metastatic breast cancer, someone could see their co-pay increase from $50 to $725 at a 25% co-pay, or as high as $957 for a 33% co-pay. Our position is that New York should take the lead in this area of health care reform and pass this important legislation.

Earlier that day, I had boarded a bus in Times Square that was headed for Albany. The state capitol of New York. The bus had women young and old, all brought together by breast cancer. We were all on our way to attend the NY State Breast Cancer Network's l2th Annual Advocacy Day. The network is a statewide coalition of 25 groups. They focus on all aspects of breast cancer research, prevention, detection, treatment and policy concerns. Their mission is to support, educate and advocate.

On the bus were women from SHARE, YSC, and WAR (Women at Risk). Some were new faces and some I had met a few days earlier at a training for the event. We were allowed to sleep for a while and were woken up an hour before arrival for additional training. We had all previously received packets of detailed information and summary sheets of the group's issues. Our tasks for the day were to meet with State Senators or their Aids and make our views known. We were targeting 3 specific issues and were there only for those issues. We were not to deviate from the topics. We were given guidelines as to what was expected behavior of an advocate and what was inappropriate. In each of our meetings we would have assigned tasks. Sometimes we'd speak about an issue, other times we'd take notes or be a timekeeper.

When we arrived in Albany, we headed to "The Well" in the LOB (Legislative Office Building). Breakfast was laid out for us and the other regional members of the network. After a welcome, we were treated to a presentation by Mark Scherzer entitled "What's Next in Health Care Reform for New Yorkers". I say treated because he was able to help me understand the Health Care Reform Bills that are currently in the House and Senate, what they entail and how they will affect New York State if either is passed. I also learned that NYS is the "gold standard" for some of the proposed legislation.

On an aside, I couldn't help but smile when I noticed that the backs of the chairs said "ASSY". I know it stands for assembly but had to have a picture of me taken in the assy chair :)

Then, we had a review of the Memos of Support. Besides the co-pay bill, there were memos of support regarding the restriction of Bisphenol A in children's products and also on safe and sustainable green purchasing.  The review was followed by a Q & A sesssion and advocacy tips. After lunch, we were off to meet with our legislatures.

I was thrilled to have the opportunity to meet Tom Duane. He is my New York State Senator, and also responsible for the co-pay bill. Unfortunately, he had to run off to a senate session so we met with his aid. As we went through our agenda, she felt that his views were in line with ours. As we were leaving, she confided in us that her mother was a survivor.

Overall, it was such a great experience. I find myself wanting to be more involved. Perhaps on a city level and definitely on the national level. I'm hoping to be able to work the NBCC conference in May into my schedule. I can't wait to advocate again. I want to be an active participant in making the future a better place for all of us.



  1. Deb, this is amazing. I love it. Really glad that you went. Totally support the prescription drug issue. Henry has taken a lot of meds for his disease. And the generics do not work the same at all. You have to explain the healthcare agenda to me. I can't figure it out. Really great. Especially love the Assy shot!


  2. Kudos to YOU, Deb!! Being an advocate is such a worthy position, and it's wonderful that you are making your voice -- and our voices -- heard. I also like the Assy shot.

  3. Amazing! You made my day! I've been a victim of "4th tier" scamming since my recent move to Arizona, but I couldn't figure out what it was till now. I've been a breast cancer survivor since 2006, and I get a Zolodex shot every month and a Zometa infusion every six months, and have to pay 25%. All the insurances here are the same. I paid over $5,200 out of pocket last year, and I'm "healthy."

    Hard to pay when times are tough. Hmmm, should I get my treatment that could keep my aggressive cancer from coming back, or do I pay my electric bill? Doesn't seem right, does it.

    Keep up the good work! I'm going to see what I can do here in AZ, now that you've got me all worked up!!!!

    And by the way, you do have a greasy Assy!

    Jennifer at Shop Cancerversary

  4. Thanks everyone! and Jennifer, I'm glad you're all worked up. Please do get involved. Write to your State Senator or better yet, make an appointment to go see them. Not sure if it helps or not, but Minnesota and Wisconsin are also considering similar bills. Good luck and good health!


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