In honor of Blood Cancer Awareness Month, we chose five women who have been extraordinary at bringing awareness to myeloma patients and oral chemotherapy parity legislation through the Postcards for Parity Program. All five women have returned to the IMF over 75% of the postcards they received, completely filled out. We all know how difficult it can be to explain legislation to friend and, family, let alone complete strangers on an airplane, but these women have developed great skills to initiate, educate, and advocate for both state and federal legislation with the use of the postcard.
Here are their stories:
Shirley Belknap from Princeton, Minnesota, diagnosed in 2005 with last stage IGD Multiple Myeloma, did not hesitate at all to join the postcard team when it was first advertised in the Advocacy Update. “It didn't take a second thought for me to join the Postcard for Parity team… The IMF postcard, which gives a simple explanation of the issue, has made it an easy project in which to participate.”
She was able to breakout of asking only the myeloma community to get involved because “this isn't just a multiple myeloma issue, but a concern for ALL cancer patients.” The heart of the matter is that “chemotherapy coverage must not be determined based on how it is administered; orally, injection or IV, it must be covered equally.” This distinction for her made her feel very “comfortable asking EVERYONE for their signature. Though we pride ourselves here in my home state of being ‘Minnesota nice’, I believe it was much more than that which allowed me to participate without ever being turned down. The Cancer Drug Parity Act (HR2746) must be passed and when people become aware of the problem, they want to be part of the solution. It was quick and easy; they sign the card and hand it back to me. I return the cards to the IMF and the IMF does the rest.” Thank you Shirley for carrying your postcards everywhere you go!
Each program participant has their own way of collecting postcards and sending them back to the IMF. Sue Bouzounis of Columbus, Ohio, diagnosed in 2010, was one of the first people to fill out a postcard in support of Ohio’s SB194 when Meghan Buzby visited her support group in February of this year. On that first iteration of the cards she checked a box that read, “I want to help myeloma patients by: engaging my friends and family.” As a member of the Columbus Myeloma Networking Group, Sue volunteered to be the Postcards for Parity Coordinator for the group and engaged other members to help her by taking the cards back to their communities and bringing them back to the next month’s meeting completed for her to mail back to the IMF. By each person taking 2-5 cards, they were able to get every card filled out as a team. Sometimes it makes a difference in a support group if a member is asking folks to take action rather than the support group leader. Thank you Sue for taking that on for your group!
Our next rockstar, Karen Vorhies from Prescott, Arizona uses her personal story of cost discrepancy with her oral chemotherapy to explain to folks about why it is important for this bill to be passed. “I just told the recipients of my postcards my co-pay situation and most people were ready to sign right away.” While we encourage the program participants to collect the completed cards to mail in bulk back to the IMF, Karen shared her tip on encouraging advocates to each mail their own postcards individually. “I think it helped that I put the stamps on the cards before giving them out. Most people don't have postcard stamps available, and I thought that the cards would get mailed more readily if they were stamped.” Thank you Karen for making it so EASY for folks!
Advocate Kim Marrelli from Cleveland, Ohio became an IMF advocate after a visit to her support group from Robin Tuohy, IMF’s Director of Support Groups , who presented the group with details of the Advocacy Action Center. “After my diagnosis, I wanted to find a way to help all of us with Multiple Myeloma. I tried fundraising but it wasn’t for me. The IMF has made advocacy easy through their Action Center and with the help of Aimee Martin.Therefore, helping out with the Postcards for Parity Program was a no brainer.”
Kim has not yet had the pleasure to retire, so with her limited free time she developed a system to speed the process up. “I have a standard email I send out to all prospective signers explaining the issue. I then stop by personally to meet with them to answer any questions and collect their signature. This two step process works well for me…The email lets the prospective signers learn about the issue on their own time and when I stop by we get right down to business since they already know why I'm there.” For her this structure worked and allowed her to return double the amount of cards I originally mailed!
Our final Postcard Rockette, Teresa O’Connor from Niskayuna, New York utilized every community she participates in to achieve her goal. “With postcards and pens in hand I approached staff at my oncology office, acquaintances at the gym, friends, and family to ask for their help. I offered to take the card, to save folks the need to add postage and mail, and, in turn, mailed them back to the IMF in bulk. To my delight, a few people took extra cards, got additional signatures, and returned them to me.” Her daughter also participated in the program by taking the cards to her work and asking her colleagues to sign them. They both found it a “rewarding experience to find so many people in support of parity.”
Teresa has received support from the IMF over the years since her MM diagnosis in 2001 and participated in the program because “getting signatures to petition legislators in support of HR2746 offered me an opportunity to support IMF's efforts, as they have supported me; as well as to help other myeloma patients and all cancer patients get the treatment they need.”
Teresa enjoys getting folks in her community to take postcards to their circles as well to have an even bigger impact on legislators from her area. By having many people out collecting postcards in a single district the IMF can deliver more cards to each legislator. “My hope is that, through individuals advocating for drug parity on behalf of IMF's nationwide postcard effort, our legislators will be convinced that oral chemotherapy medications are an effective alternative for cancer patients and should be covered in the same manner as intravenously or injected drugs.” Currently, we have collected over 1700 postcards nationwide! In some districts we have up to 150 postcards to hand that legislator and in others we have just one or two. Every postcard makes a difference, but delivering more than 30 makes a significant impact.
Finally, I want to thank everyone who has been out in their community asking people to take a moment to support all cancer patients’ rights to have access to the best treatment possible for them. Our postcard program has been an amazing catalyst for building a wonderful network of new myeloma patient supporters and none of it would be possible without each and every one of you raising awareness about myeloma and the issues faced by patients.
The Postcards for Parity Program is an ongoing project and if you would like to be a part of spreading the word please contact Aimee Martin at firstname.lastname@example.org.
If you are not yet an IMF advocate, please sign up here.