We are pleased to highlight board member Jessie Conta, who brings her expertise in genetic counseling, patient advocacy and lab stewardship to Genetic Support Foundation.
Jessie had an interest in medicine and biomedical ethics and after a chance connection with a cancer genetic counselor she was inspired her to pursue her genetic counseling master’s degree at Brandeis University. She began her career in patient-facing and research genetic counseling roles in cancer and pediatrics in the Boston area. She relocated to the Pacific Northwest to join the pediatric genetics team at Seattle Children’s Hospital and supported the genetics outreach clinics in Alaska, where she grew up. Through these outreach clinics, she saw the challenges to accessing genetic counseling and testing services up close. She later transitioned the clinical laboratory at Seattle Children’s where she developed and led the genetic test stewardship program. She had the privilege of building and mentoring a team of genetic counselors, genetic counseling assistants and project coordinators focused on getting patients the right test at the right time and minimizing financial liability. Along with a group of amazing colleagues and mentors, she co-founded PLUGS®, a laboratory stewardship collaborative with a mission to improve laboratory test access, ordering, retrieval, interpretation and reimbursement. A decade later, PLUGS has helped establish the integration of genetic counselors within laboratory stewardship programs across the country.
Through these roles, Jessie has fostered a deep knowledge of the healthcare delivery system, including medical policy development, prior authorization workflows, and coding, billing, and reimbursement processes. Navigating the diagnostic process should be easier – and can be particularly challenging for individuals with rare disease. She started Pickhandle Consulting to focus on identifying, analyzing, and reducing barriers to access and financial coverage of genetic counseling and genetic testing. Pickhandle Point is a peak near a family cabin where Jessie enjoys alpine skiing and hiking with her family, friends, and new doggo Leo. Just as there are many paths to the top of the peak when adventuring, there are many ways to approach challenges related to access and reimbursement.
Jessie first met Katie Stoll, the GSF executive director, during grad school at Brandeis and their professional interests evolved on complementary paths. Jessie is grateful for the opportunity to support GSF through her role on the Board. In addition to her support of GSF, Jessie is also active with the NW Rare Disease Coalition supporting education and advocacy initiatives. She is a passionate advocate for genetic counselors – through education, mentorship of research projects, supporting aspiring genetic counselors, and mentoring GC leaders.
You are a leader in laboratory utilization management – can you tell us more about what laboratory utilization management is and why it is important?
Utilization management – also known as laboratory stewardship – is intended to help individuals access high quality tests when they need them, while also balancing costs and limited resources. Put simply – getting the right test at the right time for the right patient – and sometimes the right approach is no test at all. Stewardship programs typically include interventions to prevent order errors and identify the optimal diagnostic test, while also focusing on transparency and support regarding financial aspects of testing. In addition, it is important to integrate interventions to support result retrieval and interpretation to inform care. The increase in volume and complexity of genetic testing creates a need to ensure appropriate utilization and support, especially for providers who lack genetics expertise. If the incorrect test is ordered, a diagnosis could be missed. If a test is not preauthorized or covered by insurance, an individual may be left with a surprise, expensive bill. If a result is not retrieved or is misinterpreted, this could result in harm. Studies have repeatedly shown that approximately 1/3 of genetic test orders can be improved or corrected with input from an expert like a genetic counselor, resulting in better patient care and reduced cost for the individual and the health system.
Genetic test stewardship can be integrated at many points in the care continuum – by the patient-facing genetic counselor who initially meets with an individual to discuss diagnostic options, the hospital-based genetic counselor who supports test optimization and coordination, the reference laboratory genetic counselor ensuring the correct and ideal test is performed and results clearly reported, and the genetic counselor within the health insurance plan who supports policy development, authorization and appeal guidance, and claims review. It really does take a village to navigate the complexities of genetic testing with a stewardship lens.
What commonalities do you see between the work we do at GSF and lab stewardship?
The goals of laboratory stewardship and the mission of GSF are complementary. Genetic counselors are the ideal experts to provide guidance, education, and access to genomic technologies that can reduce the diagnostic odyssey, provide prognostic information, guide family counseling and testing, and empower individuals with information about their own genetic make-up. GSF services have a foundation in stewardship – improving access to limited counseling resources, supporting patients and providers in accessing the best test, preventing misorders and duplicate requests, reducing financial toxicity through preauthorization and denial-appeal support, and supporting results interpretation and guidance.
Why do you support GSF? If someone asked you why they should donate to GSF, what might you say?
Having first observed the impact of GSF as a clinical peer and now participating as a board member, I have seen firsthand the passion, dedication and resiliency of the GSF leadership team and staff. They gracefully navigate the challenges of providing high-quality services in our healthcare system and maintaining access for those who need their services the most, even if they cannot pay – all of this despite the fact that genetic counselors are not yet recognized as billable providers by CMS (lend your support to the National Society of Genetic Counselors’ “Access to Genetic Counselor Services Act” (H.R.3876 / S. 2323), currently in Congress). The GSF team shows a deep commitment to their mission of providing independent genetic counseling, securing meaningful clinical contracts, community partnerships and grant funding that enables the team to expand accessibility through telehealth, collaborations with local clinics, and GSF direct services.
The genetic counselors and staff at GSF also care deeply about educating the community and providing up-to-date, non-biased expertise and access to providers and individuals who otherwise would not be able to connect with a genetics expert. They are an invaluable resource to the public, creating educational resources via the GSF website, videos and blog posts to educate the public – I appreciate the timely guidance in response to genetic-related issues raised in popular media. These are just a few of the meaningful ways that a financial donation to GSF can make an extremely positive impact.