Dear LFS Patient and Provider Community,
The Li-Fraumeni Syndrome Association’s (LFSA) board of directors and its medical advisors have determined there is sufficient evidence to recommend that in addition to regular physical exams and other investigations, that all patients diagnosed with Li-Fraumeni syndrome (LFS) receive annual rapid whole-body MRI imaging (WBMRI).
The LFSA is in the process of assessing the extent to which WBMRI is recognized as standard of care for LFS surveillance, as LFS community members, providers, and medical advisors have reported diverse experiences with health insurance coverage and payment of WBMRI for LFS surveillance.
As a result of anecdotal findings regarding insurance coverage for WBMRI, the LFSA is conducting a survey with patients and providers in the United States to assess their experiences. The goal of the survey is to understand the extent of health plan coverage and payment for WBMRI as surveillance for LFS. The intention of the LFSA board is to use the data from the survey to understand the next steps on education and awareness with insurance carriers and providers regarding WBMRI as standard of care for LFS surveillance.
I encourage you all, patients and providers, to participate in this survey, and to share it with others in your networks, so that we may escalate conversations regarding critical surveillance needed and payment reimbursement by insurance carriers on behalf of the LFS patient community, at large.
Your partner in the eradication of LFS,
Robert Lufkin, DO
LFS Association Medical Advisor
Click Here for the WBMRI Patient Survey
Click Here for the WBMRI Provider Survey
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In 2017, not only did Dr. Christian Kratz launch our international chapter, LFSA – Germany, but he also founded the German Cancer Predisposition Syndrome Registry based at Hannover Medical School, Hannover, Germany. The registry collects information on genotypes, personal medical details, family histories, and surveillance, as well as a range of biospecimens. In today’s publication in the Journal of Hematology & Oncology, the team describes some interesting genotype-phenotype correlations across the Li-Fraumeni spectrum. Such data suggest that future, more detailed genotype–phenotype correlations may result in better cancer risk prediction and personalized cancer surveillance. Read more here: 
