Genetic counselors' experience with reimbursement and patient out‐of‐pocket cost for multi‐cancer gene panel testing for hereditary cancer syndromes

Abstract

Multi-cancer gene panels for hereditary cancer syndromes (hereditary cancer panels, HCPs) are widely available, and some laboratories have programs that limit patients' out-of-pocket (OOP) cost share. However, little is known about practices by cancer genetic counselors for discussing and ordering an HCP and how insurance reimbursement and patient out-of-pocket share impact these practices. We conducted a survey of cancer genetic counselors based in the United States through the National Society of Genetic Counselors to assess the impact of reimbursement and patient OOP share on ordering of an HCP and hereditary cancer genetic counseling. Data analyses were conducted using chi-square and t tests. We received 135 responses (16% response rate). We found that the vast majority of respondents (94%, 127/135) ordered an HCP for patients rather than single-gene tests to assess hereditary cancer predisposition. Two-thirds of respondents reported that their institution had no protocol related to discussing HCPs with patients. Most respondents (84%, 114/135) indicated clinical indications and patients' requests as important in selecting and ordering HCPs, while 42%, 57/135, considered reimbursement and patient OOP share factors important.We found statistically significant differences in reporting of insurance as a frequently used payment method for HCPs and in-person genetic counseling (84% versus 59%, respectively, p < 0.0001).

Randomized trial promoting cancer genetic risk assessment when genetic counseling cost removed: 1-year follow-up

“…As we and others have shown, the cost of genetic counseling remains an important barrier for cancer patients at elevated risks for HBOC ( 15 , 26 , 47 , 48 ) and is an important driver of disparities in cancer genomics care ( 25 , 49 ). To our knowledge, this is the first population-based trial to examine the impact of removing genetic counseling-related costs on CGRA uptake.…”

“…Cost coverage by many third-party payers for CGRA has greatly improved in the past few decades, but a complex interaction between patient-, system-, and policy-level factors still produces significant cost barriers for both genetic counseling and testing for many eligible cancer patients ( 48 , 51-53 ). At the system and policy levels, coverage of genetic counseling and testing varies by insurers and medical institutions, and the coverage criteria do not always align with NCCN guidelines ( 30 , 52 ).…”

“…Medicaid covers genetic counseling and testing for HBOC in most states, but the specific requirements and limits vary by state ( 28 ). Moreover, genetic counseling is less likely to be reimbursed than genetic testing; the latter is more often covered by insurance and patient assistance programs ( 47 , 48 ). Some clinics and hospitals choose to not bill counseling (ie, providing free counseling to patients), but this may lead to underfinanced genetic counseling programs, worsening the shortage of genetic providers ( 55 ).…”

“…At the patient level, patients are more willing to pay out-of-pocket costs (eg, cost share) for a genetic test than for genetic counseling ( 48 ). In addition, understanding insurance coverage details and “real” out-of-pocket costs can be a major concern even if the actual cost may be low for some insured patients ( 34 , 48 , 53 ). Even modest cost-sharing requirements can be burdensome for some patients ( 25 ).…”