Abstract P1-10-01: Genetic Information for Treatment, Surveillance and Support [GIFTSS]: Initial Evaluation of a Program for the Underserved
Authors: KR Habin, K Shannon, PD Ryan, D Lundquist, GE Banister, S Bauer-Wu, KE Post, AG Forcier, ML Woodford, L. Schapira
Journal: Cancer Research (2010)

Abstract Background: Predictive genetic mutation testing in known cancer susceptibility genes can provide individuals and families with valuable information about their risk(s) of developing specific cancers. However, individuals from underserved groups often identified by race, ethnicity, or socioeconomic status are at a disadvantage in accessing this service compared with mainstream populations, which leads to a growing healthcare disparity in clinical genetics and care. In 2006 Massachusetts enacted one of the boldest Healthcare Reform Acts (HCRA) in the nation. The MA HCRA provides complete subsidized, comprehensive health insurance to adults earning up to 150% of the Federal Poverty Level (FPL). Unfortunately, this health insurance did not include genetic testing as a covered service. In addition, these patients were often found ineligible for local and national financial relief programs because they were considered ‘insured'. A recent survey of Certified Genetic Counselors (CGCs) in Massachusetts suggested underutilization of genetic testing because of lack of insurance coverage, co-pay and deductible costs. In 2009 the Cancer Resource Foundation, Inc. (CRF), a non-profit 501 (c) (3) Foundation in Massachusetts, with generous support from Myriad Genetics Laboratories, Inc., established Genetic Information for Treatment, Surveillance and Support (GIFTSS), a voucher program for molecular genetic diagnostic testing for those who met medical (high risk) and financial (low income) criteria. Through Webinars and publications, CRF informed CGCs and other healthcare providers of this unique program. The GIFTSS application was available in English, Spanish, and Portuguese and eligibility was determined within 24 hours. The purpose of this evaluation is to describe the feasibility of the GIFTSS program in reaching the underserved and to identify BRCA1/BRCA2 and other mutations among these populations. Methods: From November 2009 through June 2010, 85 patients were enrolled in the voucher program. Race, ethnicity, age, and cancer genetic mutations were examined. Myriad Genetics provided de-identified genetic test results for the cohort. IRB approval was obtained. Feedback about the GIFTSS program was also solicited from CGCs and clinical providers. Results: Of the first 44 participants, 42% were racial/ethnic minorities comprising African, Native American, Asian, Ethiopian, Latin American/Caribbean and South American ancestry. 15.9% (n=7) had a deleterious mutation of BRCA1/BRCA2 and 4.5% (n=2) had a genetic variant of unknown significance in one of the genes. Median age of enrollees was 39. Feedback from the CGCs and healthcare providers indicates the need for: plain language and multi-lingual/cultural genetic risk information; extended financial and emotional support of mutation carriers to consider risk reduction services; additional counseling options for rural patients; and multi-lingual counseling services. Conclusion: The GIFTSS program succeeded in reaching an underserved and racially and ethnically diverse population. Surprisingly, a high percentage of mutations was identified among a group that generally lacks access to testing. Further research, education and support services among this population are warranted. Citation Information: Cancer Res 2010;70(24 Suppl):Abstract nr P1-10-01.