March is Myeloma Awareness Month! First and foremost, I love the LLS(Leukemia and Lymphoma Society), and I think they do a great service to blood cancers in general. They provide up to $10,000 in copay assistance to myeloma patients, twice that of other covered cancers. However as Pat Killingworh had noted in his research, myeloma was once included in the LLS name and now has been excluded. From my last blog post leukemia gets 2.2 times what its years of lost lives would justify, and lymphoma gets 1.4 times what its years of life lost would justify, and myeloma is just 80% of what it would justify, and 40% if deaths were recorded correctly. Myeloma is the most under-reported cause of death for all cancers! So I think the outreach and education of the LLS has been an outstanding educational tool and conduit for improved research spending for both leukemia and lymphoma and this has driven the outstanding spending for research for leukemia and lymphoma. Everybody has heard of leukemia and lymphoma, but people only hear about myeloma after being diagnosed by a very skilled General Practitioner, or savvy oncologist who connects the dots.
It is my belief. the LLS is the most visible cancer society in the nation and maybe in the world, and being part of the name would go a long way to get people to at least hear of myeloma and learn more about it on the LLS site and in general. We are the second most common blood cancer, yet do not even get a mention in the name of the most well respected and visible cancer society and site in the world. As Pat might have said “Myeloma Gets NO RESPECT”! Lack of awareness in the community of General Practitioners, Oncologists, and Hematologists must result in what Dr. Morgan of UAMS says is just a scandal. Twenty percent of myeloma patients die within the first 2 months of diagnosis because of late diagnosis or misdiagnosis. LLS, I beg you give us an M, SOS, SOS, Save Our Souls! You do not understand just how many lives you will save with a simple M. PLEASE, PLEASE, PLEASE, GIVE MYELOMA PATIENTS AN M! LLM!!!
GARY PETERSEN(editor@myelomasurvival.com)
