Myeloma survival has improved, and it has all come through research and clinical trials. This has required funding and I believe cancer research is woefully underfunded. I referenced in my last blog post that spending for car safety equipment for all cars sold each year was 80 times greater per death or fatality than for cancer. Cancer spending by the NCI (National Cancer Institute) is $8843 for each of the 580,350 cancer deaths, and you can contrast this to the 33,561 who die yearly in auto accidents. So which is the larger national problem, and which deserves more funds?
Rare diseases like myeloma do not get their fair share of these very limited funds. Of the $4.9 billion of NCI funds for all cancers, multiple myeloma receives just $45.4 million or $4093 per life lost. So Myeloma gets less than half of the average, and I would argue orphan diseases are all underfunded. To make up for these funding shortfalls rare diseases have developed new ways to fund research.
This is so very important in that federal funding is being cut at the national level and as can be seen below myeloma has taken some substantial hits. Funding for myeloma from 2012 to 2013 was slashed by 13%.
So how do rare diseases obtain funds? An article, written by Nick Dragojlovic and Larry Lynd, presents descriptive data on 125 crowdfunding campaigns aimed at financing research in oncology. Link: https://www.sys-con.com/node/325020. It identifies crowdfunding as an aid in cancer research to raise money for early stage research for drug development, which is notoriously difficult to obtain, and almost impossible for rare diseases like myeloma. The numerous platforms available for initiating a crowd-funding campaign make this approach particularly attractive for patient advocacy groups who wish to raise awareness of rare diseases and raise money for early stage trials.This leads me to a new Myeloma Crowdfunding program called The Myeloma Crowd Research Initiative. The following press release provides an outline for the new program and the list of exceptional myeloma specialists who will be providing their experience and expertize to help determine which clinical trials and research show the most promise and are deserving of being pursued. Crowd funding and the Myeloma Crowd Research Initiative is a potential game changing process where new exciting initiatives can be funded without the crippling limitations of the existing process. So I believe the MCRI can help fund the cure for myeloma and SAVE LIVES and be a synergistic addition to the already valued IMF and MMRF.
SAN FRANCISCO, Dec. 3, 2014 /PRNewswire-USNewswire/ -- The CrowdCare Foundation is announcing the first crowd funding initiative for myeloma research at the American Society of Hematology 2014 conference. The Myeloma Crowd Research Initiative (MCRI) is a new approach to funding cancer research; combining the skill and knowledge of leading myeloma specialists with the patient perspective and supportive patient social communities to select and fund promising research projects in myeloma.Research proposals will be accepted on the www.myelomacrowd.org website beginning February 1, 2015. As an initial phase of the MCRI project, both a Scientific Advisory Board and Patient Advisory Board will work together with various research communities to source the most promising research projects in myeloma. The MCRI panel will filter the various projects and initially select two new projects to receive funding. Once chosen, the Myeloma Crowd will launch a crowdfunding campaign for each project in April 2015. All proceeds for each campaign will be donated to the two final projects. Donors will know exactly how their donation is being applied.Leading this initiative are expert researchers and patient advocates. The founding members of the MCRI Scientific Advisory Board include: Dr. Ola Landgren, MD, PhD (MSKCC), Dr. Guido Tricot, MD, PhD (University of Iowa), Dr. Irene Ghobrial, MD, PhD (Dana Farber Cancer Institute), Dr. Rafael Fonseca, MD (Mayo Clinic Scottsdale) and Dr. Noopur Raje, MD, PhD (Massachusetts General Cancer Center). The MCRI Patient Advisory Board includes Pat Killingsworth (multiplemyelomablog.com), Gary Petersen (myelomasurvival.com), Jack Aiello (well-known myeloma patient advocate) and Jenny Ahlstrom (www.myelomacrowd.org, www.mpatient.org.)"Patients with terminal cancers cannot sit by as idle spectators, waiting patiently for the next big discovery or cure," says myeloma patient activist, Jenny Ahlstrom, and founder of the patient-driven CrowdCare Foundation and Myeloma Crowd Radio.With a drop in NCI-funded research, alternative approaches are needed. "Although we have come a long way in improving outcomes for myeloma patients, we still need to do better, says Dr. Tricot. "Further progress will arise from excellent and diverse research initiatives supported via federal and private funds. It is therefore exciting to see a new funding mechanism like the Myeloma Crowd Research Initiative take shape at a time of reduced federal funding for research."CIO, CTO & Developer Resources "I am delighted to work with an organization whose commitment is to further advances in our management of myeloma patients," says Dr. Fonseca. "Simply put, today's best is not good enough."
"Giving patients a seat at the table to drive new research is a new and exciting opportunity for the patient community. I'm excited to help myeloma patients and caregivers give input into what research is done--and how it's funded," says popular myeloma blogger and patient activist Pat Killingsworth. "Crowdfunding and the MCRI is a potential game-changer where new, exciting initiatives can be funded without the crippling limitations of the existing process," says Gary Petersen.
Building a connected community to drive outcomes is a key component of the complete solution to find a cure. "The Myeloma Crowd Research Initiative is an innovative effort to help improve research and therapy for patients with myeloma in the new era of connectivity," says Dr. Ghobrial.
The simple goal for the joint quest is a cure. "The Myeloma Crowd Research Initiative is an outstanding project devoted to fund research designed to ultimately establish a cure for myeloma. I am honored to be part of this effort," says Dr. Landgren and Dr. Raje echoes the sentiment. "This is a novel and exciting approach to funding research in multiple myeloma and I am honored to be a part of it."
About Myeloma Crowd/CrowdCare Foundation
The Myeloma Crowd is a division of the CrowdCare Foundation, a patient-driven 501(c)3 non-profit organization. The Myeloma Crowd provides patient education, advocacy and now research funding for multiple myeloma. Ahlstrom founded the CrowdCare Foundation, Myeloma Crowd and also hosts online radio interviews with top myeloma specialists worldwide to educate patients and promote clinical trial participation. www.myelomacrowd.org
To view the original version on PR Newswire, visit:https://www.prnewswire.com/news-releases/impatient-cancer-patients-help-drive-first-ever-crowdfunding-initiative-for-multiple-myeloma-research-300004356.html
SOURCE CrowdCare Foundation
about the author
Gary is a myeloma survivor and patient advocate. His work centers around helping patients live longer by helping them to find facilities who are beating the average survival statistics. You can find Gary's site at www.myelomasurvival.com and follow him on Twitter at @grpetersen1