“I Don’t Think It Is Fair…There Should be a Solution to Every Problem”: Experiences of Individuals with Sudden Arrhythmia Death Syndromes Who Attempt to Obtain Life Insurance

Sudden Arrhythmia Death Syndromes are a group of heritable genetic conditions that confer risk of sudden cardiac arrest or sudden cardiac death (SCA/SCD) in young, seemingly healthy individuals. Appropriate diagnosis of an SCA/SCD condition allows for guided management and prevents future sudden cardiac arrest and/or death from occurring. However, identification of a genetic predisposition can affect future insurance applications. While the United States’ 2008 Genetic Information Non-discrimination Act (GINA) provides protection against genetic discrimination in employment and health insurance, it does not protect against the use of genetic information with regards to life insurance. This study aimed to expand the current understanding of life insurance experiences in the hereditary SCA/SCD community, gather strategies for individuals who wish to attain life insurance, and facilitate the development of life insurance specific patient and provider resources. Participants were recruited through The Sudden Arrhythmia Death Syndromes (SADS) Foundation. Semi-structured interviews were completed with 15 participants who have or are at-risk for SCA/SCD. Thematic analysis captured three themes: Emotional Outlook and Impact, Navigating the System, and Pay It Forward. Our participants with or at-risk for SCA/SCD expressed interest in attaining life insurance coverage that meets their individual needs and invested a meaningful amount of time and effort into their attempts. Most were unsuccessful. They perceived a lack of understanding regarding heritable SCA/SCD conditions by insurance professionals and felt their denials were unfairly attributed to their SCA/SCD diagnosis. Participants shared numerous suggestions for improved approaches to life insurance attainment and educational opportunities.