Genetic Insurance Discrimination in Sudden Arrhythmia Death Syndromes: Empirical Evidence From a Cross-Sectional Survey in North America.

BACKGROUND: There is virtually no information assessing the insurability of families affected with Sudden Arrhythmia Death Syndromes (SADS) for the determination of the nonclinical implications of genetic screening. It is important to identify the barriers and challenges faced by families as a result of genetic screening for SADS to enable equitable access to insurance coverage. METHODS AND RESULTS: To explore the insurance coverage experiences of SADS-affected families, we administered a cross-sectional online survey across North America from April 28, 2012 to November 13, 2013. Participants included individuals with a SADS diagnosis and their relatives who have applied for insurance (health, life, travel, and disability) or have existing insurance coverage. Of 202 participants, 92% had a SADS diagnosis (92%) as either a proband (50%) or an affected relative (42%); 8% of participants were unaffected family members of a proband; and genetic confirmation was reported by 73%. Of the 54% of SADS respondents who applied for insurance, 60% were rejected by insurers. The preexisting SADS diagnosis was the major reason reported for rejection (57%). Most respondents (80%) had insurance coverage through a spouse/parent plan at the time of diagnosis; 14% experienced a subsequent negative effect on coverage. Thirty-nine percent of affected SADS respondents reported an increase in insurance premium rates. CONCLUSIONS: Increased genetic testing has negatively impacted insurability for SADS patients and affected family members. The challenges in obtaining life and health insurance are mainly because of the preexisting condition, even in the presence of protective laws in the United States.

Patient advocacy: what is its role?

While there are significant differences in the delivery of health care throughout the world, there is one constant, the patient. Patients' needs vary greatly on the basis of socioeconomic and geographic issues, expected prognosis, family dynamics, health literacy, and many other factors. In the past 20 years, the role of patient advocacy organizations has added an important new dynamic to patient care. Understanding patient advocacy organizations and how to access their services can be beneficial to clinicians, researchers, and patients. Critical issues are (1) closer collaboration and partnership with physician organizations, like PACES, in order to improve individual patient care and the quality of care that physicians are able to deliver; (b) work with physicians, physician organizations, and advocacy groups to measure the impact of advocacy groups; and (3) increase community-based participatory research.