OBJECTIVES:

Genetic testing has become more efficient and cost-effective, but the cost of genetic services remains a barrier for many patients and contributes to access disparities. In the United States, biomedical manufacturers and charitable patient advocacy programs administer patient assistance programs (PAPs) to help patients pay for higher-priced medical care, including genetic tests. However, there is limited research on the effectiveness of PAPs in reaching patients most in need of financial assistance. This study is among the first to examine how individuals without adequate insurance coverage or the financial capability to pay for testing navigate are able to access PAPs.

METHODS:

This study uses in-depth 1 to 2-hour interviews with individuals diagnosed with breast cancer, covered by health insurance, and who were referred to genetic testing after their diagnosis (N=21). Atlas.ti software was used to categorize and code data by a priori themes related to an individual’s experience with PAPs; next, a more intensive abductive analysis approach used iterative engagement with existing theory alongside tools of ground theory to identify emergent themes and generate more meaningful theory.

RESULTS:

Three themes were identified indicating the burden on patients seeking access to a PAP: the complex application process, time required to apply, and psychological burden (i.e., stress) associated with the process. Results also found that factors related to a patient’s socioeconomic status, including education, self-efficacy, and social network, contribute to an individual’s ability to access and successfully apply for a PAP.

CONCLUSIONS:

Findings reveal that navigating and applying can burden many patients who can benefit from these assistance programs. This raises questions about the effectiveness of PAPs in supporting access to more expensive healthcare services for underinsured individuals, suggesting instead that these programs possibly reproduce existing disparities.