The Life Raft Group Launches a new Biomarker Testing Campaign
Understanding the role of mutations and biomarker testing is one of most important things patients must learn. Uncovering the driving force behind each individual’s tumors is not just important, it is critical. Biomarker testing is an opportunity to improve and optimize treatment – possibly avoiding unnecessary treatments and getting to the right treatment sooner. Currently, biomarker testing rates in the gastrointestinal stromal tumor patient population are relatively poor – only about 26.7% of patients have had testing done.1 The Life Raft Group Patient Registry, which is a group of extremely proactive patients, notes only about 52.7% of patients are aware of their mutation.
Despite discussions among professionals, numerous publications, and web presentations on this topic, biomarker testing still has not become the standard of care across the board for cancer patients. Even with the strong recommendations of the National Comprehensive Cancer Network (NCCN) and the European Society for Medical Oncology (ESMO), non-profits that that write guidelines for cancer care in the USA and Europe, biomarker testing is are not a regular component of the standard of care that each GIST patient receives. Without biomarker testing, treatment is not meeting these expert guidelines for the best care of patients.
This is why the LRG is launching the It’s Time campaign. It is time to stop talking and take action to assure patients get tested. The goals of this campaign are to improve the understanding of biomarker testing in the cancer community and increase the number of patients tested.
Through this targeted campaign, the LRG will focus on increasing our Patient Awareness and Education initiatives. Because of our assertive focus on the importance of testing, patients in the LRG patient registry have higher rates of biomarker testing and survival than the general population. Our goal is to expand that reach exponentially (Let’s Get This Done in 2021!). We will engage with and educate patients about biomarker testing through a series of focused webcasts, patient testimonial videos, and animation videos produced in collaboration with clinicians who champion biomarker testing. This will serve as a model for other cancer advocacy groups.
In the last few years, we have actively sought to impact the use of biomarker testing by working with key opinion leaders to lobby for changes to the College of American Pathologists (CAP) and National Comprehensive Cancer Network (NCCN) guidelines. Many medical providers and other stakeholders refer to the LRG as a model for championing biomarker testing as a best practice. Our years of outreach and advocacy experience, and our unique partnership with physicians and researchers focused on the urgency of biomarker testing, has positioned us to provide the expertise and structure needed to support the It’s Time: The Life Raft Group Biomarker Testing Campaign.
If you would like to talk to someone about mutational testing, please contact our Director of the Life Raft Group Patient Registry, Denisse Montoya at dmontoya@liferaftgroup.org
Reference
1 Florindez J, Trent J. Low Frequency of Mutation Testing in the United States: An Analysis of 3866 GIST Patients. Am J Clin Oncol. 2020 Apr;43(4):270-278. doi: 10.1097/COC.0000000000000659. PMID: 31904710.
It’s Time! – Let’s Get This Done in 2021!
#TimeToGetTested
#GISTGetTested
Special thanks to the sponsors of this initiative:
Resources
BLUEPRINT MEDICINES
LUNGEVITY
- Why Should I Talk to My Doctor About Comprehensive Biomarker Testing
- Biomarker Testing Booklet in English, Spanish
- Biomarker Conversation Starter
PANCREATIC CANCER ACTION NETWORK
CHOLANGIOCARCINOMA FOUNDATION
TEMPUS
- Two patient stories about the impact of testing on their treatment and prognosis
GUARDANT HEALTH
INVITAE
AMERICAN CANCER SOCIETY
CANCER SURVIVORS NETWORK
CONQUER MAGAZINE
NOVARTIS
GENNENTECH
