A Whole New World- Research Advocacy

What does it mean to be a patient advocate? If you asked me that 6 years ago I would have no idea how to answer that question.  Six years ago I was newly diagnosed with myeloma and struggling to learn about this heterogenous disease and all the treatment options that would be available to me.  Six years ago I was quite a different person. Six years ago I didn't have discussions with my healthcare team or ask them questions when things didn't seem right. Six years ago I thought I would offend my doctor if I sought a second opinion. Six years ago I was an uneducated, uninvolved patient who blindly followed doctor's orders. BUT Six years ago I had the good fortune to attend my first IMF Patient and Family Seminar in Short Hills, NJ and things began to change.

The IMF quickly taught me that "Knowledge is Power". Being a teacher I liked acquiring knowledge so I began educating myself about myeloma.  I attended IMF Patient and Family Seminars, listened to webcasts and Living Well with Myeloma teleconferences, participated in online communities like ACOR.org which is now SmartPatients.org and read countless publications. Gradually I became a more active participant in my healthcare.  I was asking questions, engaging in discussions, requesting tests and seeking second opinions. I was becoming my own advocate and an "e-patient".  I shared what a learned about the importance of being an educated, empowered, and engaged patient with members of my support group, the newly diagnosed myeloma patients I mentored, family and friends. 

I thought I was a "patient advocate", boy did I have a lot to learn! In 2011 I was to asked to represent the Philadelphia Multiple Myeloma Networking Group at the IMF's annual Support Group Leader's Training Summit.  While registering at the summit two young ladies from the IMF Advocacy team approached me about participating in an upcoming advocacy training  webinar. They were so nice and passionate about what they were doing I couldn't say no.

 

I was trained by the IMF on how to become a political advocate. The IMF Advocacy group helps guide individuals to advocate for critical health issues that affect the Myeloma community. I learned how to arrange a meeting with my representatives to Congress, how to conduct an in-district meeting and what the appropriate follow-up should be after a meeting. I was also educated on the current critical issues facing myeloma patients.  Soon I found myself sitting at an in-district meeting with the Legislative Health Aide from my district in NJ asking for support for the Oral Chemo-Parity Bill. I'm happy to say days after that meeting Rush Holt, my representative to Congress, signed on as a co-sponsor of this Bill. I would like to think it had something to do with my meeting and how well the IMF Advocacy Team prepared me for it.

This year I attended the American Association for Cancer Research's  (AACR) Annual Meeting. I was selected to be part of the AACR's Scientist-Survivor program. This is a very competitive program, but thanks to the training and opportunities the IMF has afforded me I received one of AACR's coveted scholarship

 

Many of the other participants in the Scientist-Survivor Program were already research advocates serving on IRB's (Institutional Review Boards), participating in advisory boards, speaking on panel discussions at scientific meetings and refining cancer research education materials. They were very willing to guide me on how to become involved in this new avenue of advocacy. Once again I felt prepared to undertake this new endeavor because of the IMF.  I learned a lot about clinical trials and research by attending the American Society of Hematology's Annual Meeting as a patient advocate representing the IMF.

Upon my return from the AACR's Annual meeting I created a research advocate profile on the NCI newly designed Office of Advocacy Relations (OAR) website. But I felt I was at a stand-still. I was in the NCI system, but I only would be contacted if they needed a research advocate that matched my profile.
 

Once again I was asked to represent my support group at this year at the IMF Support Group's Leader Training Summit.  Part of this year's training was a session on.... you guessed it- research advocacy. Research advocates Jack, Jim and Mike presented to the group and encouraged us to get involved.  They suggested we start our advocacy efforts at the local level at our own cancer center. I took their advice and contacted my local cancer center and asked if I could observe one of their Institutional Review Boards. (IRBs) They were very accommodating and invited me to sit in on a meeting a few weeks ago. After the meeting I wrote a thank you note and asked how I could become involved as a patient advocate on an IRB. In response to my question they invited me to observe another IRB and then start the training process to join an IRB! I am now on my way to becoming a research advocate.

Why am I sharing this?  Because anyone can become an advocate!  You can be a support advocate, a political advocate, a research advocate, or a fundraising advocate.  The IMF is there to support you and provide you with the tools to be successful.  Join the IMF ACTION team, start/participate in an IMF support group, work with Suzanne to organize a fundraiser, or try your hand at research advocacy. I have evolved as a patient and an advocate over the last 6 years and I have to credit the IMF with being instrumental in my metamorphosis.

 

Cynthia Chmielewski

@MyelomaTeacher on Twitter