I have been so busy this weekend attending meetings, and clinical study presentations, and writing, and walking the convention center exhibit halls–I don’t want to forget to mention the great work the International Myeloma Foundation is doing! Much of the time I have been writing from the IMF Statement of Principles booth here at the conference. The IMF has been working to organize the cancer community and lobbying congress for a number of different things that would really help cancer patients. I am going to do an entire series of posts about the program on my other site, www.HelpWithCancer.Org, starting this week. Why there? Because these initiatives, these principles, are designed to assist all cancer patients and their families.
But the most important, and immediate, of the five principles the IMF is pushing so hard to achieve also benefits multiple myeloma patients most. It focuses on making sure congress guarantees oral drugs have the same insurance coverage as intravenous drugs. Taking Thalomid? Revlimid? A (hopefully) soon to be approved oral form of Velcade? Dexamethasone? Why should these drugs be billed to your drug plan, sometimes leading to high co-pays, deductibles or the dreaded “donut-hole” for Medicare patients? This is chemotherapy, just like Velcade or melphalan or Cytoxan. Why are we penalized for taking chemotherapy in an oral form?
I have written several times about his issue before. It is encouraging to know the IMF is working tirelessly everyday to try and help us–the patients!
Thank you, IMF! Thank you Susie Novis, Kelly Cox,Arin Assero and everyone at the IMF for your help! Thank you, IMF, for paying my way here to this important ASH conference, so I can see and share the future of multiple myeloma therapy options first-hand and up-close! Thank you Steve Gendel, Jennifer Anderson, Leslie Wheeler and Robin Tuohy for helping the IMF to get their message out! Thanks to the other patients that were also here, working hard to help promote the IMF’s cause: Michael Tuohy, Dennis MacDonald, Paula van Riper, Amy (remember her from my post on Saturday morning?) and my good friends Don Wright and Elijah Alexander.
Last but not least, I want to thank Chelsey Flaherty from New York City for her enthusiastic support of this blog, my book, Living with Multiple Myeloma, and my cause: To help myeloma patients everywhere become better informed and take responsibility for their own care! To that end, Chelsey is going to help me try and get my book into each and every newly diagnosed patient’s hands, especially those who don’t, or can’t use the Internet. Chelsey, you are a joy–and a great, new friend!
With so many working to help myeloma patient live longer and maintain a better quality of life, we can all feel good and keep smiling! Pat