Congratulations and THANK YOU to Lisa Paulun, patient from the Detroit Support Group for being named our Advocate of the Month for July! Lisa was appointed as an advocacy team leader in late-May and tasked with building a team of patient advocates to collect postcards from friends and family to support SB 540/541. This bill will make oral chemotherapies more affordable for patients that need them by eliminating patient out-of-pocket disparities in health insurance coverage between oral and intravenous chemotherapy.
She and her team have collected over 200 postcards in just over a month! Lisa sat down with IMF Grassroots Liaison Aimee Martin for a personal interview to give advocates a first-hand look at what it’s like to be a team leader.
A: Why is it important for you to be part of the Advocacy team at IMF?
L: I have been in health care since the mid-80’s, and feel our community often lacks the knowledge of what is going on around them, and how such little changes can make a huge difference in one's life. Since I am no longer able to practice as a nurse practitioner because of my myeloma and immune system problems, I feel the IMF has given me the perfect outlet to still be a part of impacting my community in a positive way. I love what the IMF is doing for us- it is so impressive that this organization is targeting what is essentially a small audience (in the scope of all cancers) and advancing the education and more importantly, drug research for us with myeloma.
A: What is your favorite part about being an advocate?
L: It gives my life some meaning again and I am helping people. I had to give up my nursing and practitioner licenses earlier this year, and it has helped me fill a void. I can still contribute in some way, even though I am fighting this awful disease. It actually gives me more energy as I can focus on the cause and do my part, however small, to help.
A: How have you been able to collect more than 200 postcards?
L: It was not as difficult as I thought it would be - I had a lot of help. I also keep them in my car and whether I am getting my hair cut, or waiting in a doctor’s office, I usually can solicit a few cards. The majority of the cards came from our Detroit Multiple Myeloma Group. We are a group of 40+ individuals in various stages of myeloma who get together once a month. Once I put forth this great cause, they also took charge and had folks sign them at work, went door to door, etc. I was very geeked to see their enthusiasm when they returned to the most recent meeting with all the cards they had gotten filled out.
A: Any tips for folks just starting to collect cards?
L: This is an easy question! Just carry some around with you wherever you go. If you ask someone to support you in cancer efforts, most people are more than willing. Waitresses, nurses, people in waiting rooms-places we go each day have these people who are willing to help by filling out a card- just ask- I haven't had a NO yet!
A: Anything else you would like the advocates reading this to know?
L: I have been very contemplative this last year as I am just about to celebrate my 5 year anniversary for my ASCT. Remembering my early days of diagnosis and all the setbacks I had, I am so elated to be able to get up each day, enjoy my four children and their endeavors in college and new careers, and to be able to enjoy life. Even though I am still in my forties, I like to call my disability an early "retirement." I am trying to enjoy retirement just as any person would- spending time with my family, reading, and seeking out any beaches in which I can dig my toes into, and contemplate the wonderful gift of life I have been given. In a way, I have been blessed to have myeloma when I look past the havoc it has done to my body, and focus on how it has opened my eyes to a world that is here to enjoy by my awesome creator.
Thank you again, to Lisa Paulun, a true inspiration to everyone!
The Postcards for Parity Program is not just for Michigan folks. We are on a roll with over 800 postcards collected nationwide for HR 2476, the Cancer Coverage Parity Act. Email Aimee to learn more and join the team!
If you live in Michigan and haven’t sent an email to your state representative regarding SB 540/541, take action today. Also, if you haven’t yet joined our Action Network, click here to find out how you can use your voice today.