TRANSPERS Payer Coverage Policy Registry©
A major focus of the TRANSPERS Center is coverage, reimbursement, and policy decisions by payers. To further our work in this area, we have developed the TRANSPERS Payer Coverage Policy Registry©, which systematically synthesizes payer coverage policies on multi-gene panels and sequencing tests (“panels”) in order to be able to assess which panels are covered by payers, what factors relevant to coverage decisions are discussed in policies, and how coverage policies vary. The UCSF TRANSPERS Payer Coverage Registry© was developed with a team of collaborators from multiple institutions (UCSF, Tufts Medical Center, American Institutes for Research, and Center for Business Models in Healthcare), with funding from the National Human Genome Research Institute (R01HG007063).
To our knowledge, our Registry is the only systematic registry of private payer coverage policies focusing on genetic tests. It provides a unique resource through its inclusion of coverage policies across multiple private payers and across policies that pertain to a broad range of tests and testing indications. It includes data on a wide range of coverage policy characteristics, based on systematic review of coverage policies by a non-profit academic institution. The Registry structure was developed using extensive reviews of existing registries and input from key stakeholders.
Our initial Registry study was published in Nature Biotechnology (Clain E, Trosman JR, Douglas MP, Weldon CB, Phillips KA. Nat Biotechnol. 2015: 33(9):900-2). This study examined the availability of multi-gene panels for breast cancer risk susceptibility and payer coverage policies for these panels. In recent years, genetic testing for heritable cancer syndromes - such as BRCA1/2 testing for hereditary breast and ovarian cancer - has been shifting from single-gene analysis to multi-gene panels, typically using next-generation sequencing technologies. TRANSPERS collaborators conducted the first review of the BRCA1/2 testing landscape since the historic 2013 Supreme Court decision that allowed the entry of new testing providers. We found that the number of BRCA1/2-only tests and panels including BRCA1/2 has increased since June 2013, and average prices have decreased. We found that none of the 17 largest private payers covered panels that included BRCA1/2 as well as other genes, although they did cover BRCA1/2 testing (alone) for high risk individuals. The experience with panels including BRCA1/2 may be instructive in understanding the evolution of payer coverage policies as other multi-gene panels become more commonly used.
We have an additional five analyses that have been recently published:
- Trosman J, Weldon C, Douglas M, Kurian A, Kelley R, Deverka P, et al. Payer Coverage of Hereditary Cancer Panels: Barriers, Opportunities, and Implications for the Precision Medicine Initiative. Journal of the National Comprehensive Cancer Network; 2017:15(2):219-228.
- Dervan A, Deverka P, Trosman J, Weldon C, Douglas M, Phillips K. Payer Decision-Making for Next Generation Sequencing-Based Genetic Tests: Insights from Non-Invasive Prenatal Screening. Genet Med. 2017:19(5):559-567.
- Phillips K, Trosman J, Weldon C, Chambers J, Deverka P, Douglas M. Payer coverage policies for multigene tests. Nature Biotechnology. 2017:35(7):614-617.
- Chambers J, Saret C, Anderson J, Deverka P, Douglas M, Phillips K. Examining Evidence in U.S. Payer Coverage Policies for Multi-Gene Panels and Sequencing Tests. Int J Technol Assess Health Care. 2017:33(4):534-540.
- Douglas M, Parker S, Trosman J, Slavotinek A, Phillips K. Private Payer Coverage Policies for Whole Exome Sequencing (WES) in pediatric patients: trends over time and analysis of evidence cited. Genet Med. 2019;21(1):152-160.