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Advocacy Training in Atlanta Inspires Patients to Take Action!

Jim Mahoney is a member of the Northern Atlanta Support Group. Here’s his report from the IMF’s Advocacy training at the ASH 2012 this weekend.

My name is Jim Mahoney and I, like most of you, am a patient with multiple myeloma. My journey started over seven years ago with a routine physical and a diagnosis of smoldering myeloma. You know the drill—stage-setting, bone densities, bone scans, blood work, and yes, the bone marrow aspiration. Four years later things ramped up and I ended up with a stem cell transplant. Now two years post-transplant, the journey continues.

Some of us want to do more and cannot, and others want to do more and will. On Saturday, at the Hard Rock Café in Atlanta I participated in my first official IMF Advocacy training session. There were about 50 of us—patients, caregivers, and other people who wanted to learn more about advocacy. Everyone I met was on a mission of sorts and yet we all shared the same journey. We were all there because each of us cares about you and all of the other folks on our myeloma journey. As a member of the Northern Atlanta Support Group, I knew a few of the attendees, but was thrilled about all the new people I got to meet. Anytime myeloma patients and caregivers get together for an event, I feel a sense of peace from the experience of connecting with others and knowing that I am not alone.

Arin Assero, IMF VP for Global Advocacy, started the day by reminding us that myeloma is not specific to the US, but that there are patients all over the world living each day with myeloma.

We spent some time talking about the Affordable Care Act and how we as patients will be affected by it. It was extremely helpful because Meghan Buzby, IMF Director of US Advocacy, put the key points in non-technical language so we could really understand what the upcoming changes will be in health care. Our heads were swimming—the Affordable Care Act is not an easy document to understand. I think whoever wrote it was paid by the word.

Aimee Martin, our Grassroots Liaison, then took the conversation to a lighter level by teaching us the “10 Steps to Building a Better Relationship with Our Legislators” and how to use the Action Center on the IMF Advocacy website. The most interesting part was learning how researching our legislators can make a huge difference when asking them to support issues important to us. Learning how to do that research right from the website was really helpful.

What am I going to do with what I learned? I am going to eat this advocacy elephant one bite at a time: My legislators, who sponsored the Cancer Coverage Parity Act in 2011, will hear from me when the bill is re-introduced in 2013. Why? Because I support the bill that will help many patients gain access to treatments that are currently unavailable to them because of the antiquated benefit design surrounding oral chemotherapy treatments. Want to learn more? Go to the IMF web site. They do a much better job at explaining the issue than I can here.

What can you do? Go sign up at the IMF web site—it takes a click and done. Answer the email request when it comes—click to join the fight. We can all do this.

In the time you took to read this you could have signed up to be an advocate. We need everyone to join us.

At the end of the afternoon, I did not realize that we had been together almost four hours. The time passed quickly and we ended by playing an exuberant round of IMF Advocacy Jeopardy. (I will say that my team won! Go Team 4!)

From this event I learned that there are many people advocating on our behalf daily. Doctors and nurses talk to the insurance companies; drug companies and researchers work to get us what we need for today and tomorrow. Terrific folks at the IMF supporting us behind the scenes to ensure we are provided every opportunity to receive the best treatment available. Arin, Meghan and Aimee are very intelligent and passionate about their work with the IMF, and I am glad they are there to advocate on my behalf and to make it so easy to advocate on my own behalf.

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