Jenny Hack began her advocacy journey at the Patient and Family Seminar in Boca Raton in February 2013. Talking with Jenny at the advocacy table, I asked if she would be our Advocacy Liaison to the North Florida Support Group and she stepped up immediately. Given it was already March 1, first on her list was making sure her town of Palm Coast declared March Myeloma Awareness Month. By the end of the month not only did Jenny have a proclamation, the mayor presented it to her at their city council meeting!
We honor her as Advocate of the Month due to the amazing success she has had with her friends and family emailing their legislators this fall. Not only have they all completed postcards to their legislators, but they took the extra step to send an email, so the message got there instantly. Jenny is going to deliver their postcards next week to reinforce the messages. Jenny shared with us about her journey and why she got involved.
I got involved in advocacy because I wanted to help in some way. After speaking to Aimee, I thought it might be a good fit for me; I want to support others by being an advocate for them. It was much easier than I thought to advocate for H.R.1801, The Cancer Drug Coverage Parity Act. Once I would explain the benefits of passing this bipartisan bill, people were more than happy to help, however they could. Whenever my husband and I would go to a party or get together, we would explain the bill, have folks sign the postcards and then we would collect them. In addition, our support group in Jacksonville, Florida participated in getting the word out and in getting the postcards signed.
After months of trying to get a meeting with my representative, I was able to speak with him about supporting H.R. 1801 right before Thanksgiving. I shared how I know what it feels to be asked for $8400.00 a month for 21 pills to save my life. Moreover, that I was more upset by that news then when I was diagnosed. Fortunately, this was only a mistake in coverage, but for many others it is a monthly reality. I made sure to mention that HR 1801 has republican cosponsors and remind him that cancer is a non-partisan issue. I see this bill as a way to unite our representatives to do something positive for their constituents. He gave no commitment except that he would look into the bill, so I wanted to make sure I reinforced my message.
I did not know when I would have the time to go to his office to drop off the postcards, but I wanted him to see the outpouring of support right away. Therefore, during Thanksgiving, we had our guests log in on my computer, complete the easy to use form Aimee created, and support the bill.
Through Aimee, and the IMF, it is easy to be an advocate. They have done all the work for us. There are standard forms that are customizable to our particular situation. They have made it simple for us to participate as an advocate and to get all the information we need as myeloma patients.
Lastly, I ask myself daily, “Am I living or just existing? The choice is ours, and I am certainly living.”
Thank you Jenny for your great work over the holidays! We know with your commitment and living each day to its fullest, you will win Congressman DeSantis over and solidify his support for H.R. 1801! Have you sent an email to your friends and family asking them to take action? Click here to do so today!