Please Wait for the Host to Start This Meeting: A Push for H.R. 3235 Amid COVID-19.

Abstract

Genetic Testing and Molecular BiomarkersVol. 24, No. 11 PerspectiveFree AccessPlease Wait for the Host to Start This Meeting: A Push for H.R. 3235 Amid COVID-19Katherine Anderson and Sharon F. TerryKatherine AndersonGenetic Alliance, Washington, District of Columbia, USA.Colgate University, Hamilton, New York, USA.Search for more papers by this author and Sharon F. TerryAddress correspondence to: Sharon Terry, MA, Genetic Alliance, 4301 Connecticut Avenue NW-Suite 404, Washington, DC 20008-2304, USA E-mail Address: sterry@geneticalliance.orgGenetic Alliance, Washington, District of Columbia, USA.Search for more papers by this authorPublished Online:10 Nov 2020https://doi.org/10.1089/gtmb.2020.29058.sjtAboutSectionsPDF/EPUB Permissions & CitationsPermissionsDownload CitationsTrack CitationsAdd to favorites Back To Publication ShareShare onFacebookTwitterLinked InRedditEmail Even at a time of social distancing and stay-at-home orders, the field of genomics has taken no pause—continuing to accelerate and expand its bounds of knowledge and precision. In terms of genetic testing, this expansion of precision requires matched precision in providing genetics-based care. There is ample evidence that involvement of a genetic counselor in such care offers substantial benefits for both institutional providers and the patients they serve. In addition to significant cost savings through ensuring only appropriate tests are ordered, drawing upon genetic counselors' expertise is equally valuable to downstream processes of test interpretation and delivery of patient results (Haidle et al., 2017; Mahon, 2017). Their training to meet the psychotherapeutic needs of patients not only augments their ability to cultivate an understanding of intricate molecular results, but also confirms the genetic counseling field as an integral piece to the future of genetics in health care (Biesecker, 2020).Genetic Counseling and TelehealthIn the wake of COVID-19's exchange of door handles for video chat links and incoming phone calls, the benefits of genetic counseling to patient health outcomes remain. With the practice of telegenetics as a service delivery model increasing steadily over the past decade, conducting visits through telehealth platforms is not new terrain for the field (Greenberg et al., 2020). Several past studies have supported this model, reporting high satisfaction among patients due to decreased time commitment, travel costs, and overall increased convenience of sessions (Buchanan et al., 2015, 2016; Peshkin et al., 2016; Kubendran et al., 2017). For rural populations, these conveniences of telegenetic services allow access for individuals who are otherwise underserved due to geographic barriers and limited patient-to-provider ratios (Kubendran et al., 2017; Vora et al., 2020). Despite this benefit, loss of in-person interaction raises some concern as to patient perceptions of care and willingness to undergo testing. For instance, those who undergo telephone genetic counseling, as compared with those who undergo in-person genetic counseling, have previously reported lessened feelings of support and emotional recognition (Peshkin et al., 2016). In addition, among minority women, telephone genetic counseling has been associated with a reduction in likelihood to undergo testing for hereditary cancer (Butrick et al., 2015). As one study shows, 68.4% of minority women completed testing after a telephone session, as compared with 87% completion within non-Hispanic white participants (Butrick et al., 2015). In other studies that have taken measures to lower barriers to sample collection, however, increased testing uptake among participants after telephone genetic counseling is reported (Frey et al., 2020).In light of these potential drawbacks to telephone modes of delivery, face-to-face video has been held as the preferred option for telegenetics care among providers throughout the COVID-19 pandemic (Flanagan, 2020). Importantly, this visual connection allows counselors' engagement with key nonverbal cues that inform best ways to tailor communication (Flanagan, 2020). With this, however, issues of technological access must be brought into consideration. This service delivery model requires not only mutually connective networks, but also access to devices that are compliant with the Health Insurance Portability and Accountability Act (Cohen et al., 2016). Although the promise of telegenetics in reaching rural historically underserved populations holds strong, the intersectionality of the many dimensions to equitable health care access must be considered. As shifts back into the clinic after an unprecedented shelter-in-place period begin to occur, offering multiple delivery modes of genetic counseling may be best practice to meet the variable socioeconomic, geographic, and psychological needs of diverse populations looking to access care (Butrick et al., 2015). With this expansion of options, however, attention must also be given to the underlying policy barriers at play in accessing care, and specifically, how such barriers contribute to greater flaws within our health care system today.To demonstrate this, imagine you are one of the >61.2 million people covered by Medicare, and you are seeking a telegenetics consult (Centers for Medicare and Medicaid Services, 2020). The computer before you showcases a perpetually spinning circle as you wait for a designated host to start the meeting. You notice, however, there are two people already in the video chat room—yourself and your genetic counselor. Who is the host you are waiting for?As the Medicare program currently stands, genetic counselors are not recognized as providers and, therefore, cannot see patients without physician supervision or receive reimbursement for their valuable services as they relate to disease prevention, diagnosis, and treatment (National Society of Genetic Counselors [NSGC], 2020). Although Medicare does cover genetic services provided by physicians and nurse practitioners, genetic counselors—who are extensively trained and equipped to offer comprehensive and compassionate care—do not receive such recognition (National Society of Genetic Counselors, 2020). In the clinic, a genetic counselor can meet with Medicare beneficiaries so long as they act under the immediate supervision of a physician—an antiquated policy in accordance with the program's “incident to” rules (Shay, 2015; National Society of Genetic Counselors, 2020). Furthermore, as this supervision can only be met by the nearby physical presence of overseeing providers, genetic counselors ultimately cannot provide their services to Medicare beneficiaries using virtual platforms, unless they coordinate under the tightly limited schedule of physicians (National Society of Genetic Counselors, 2020). This issue is specific to Medicare beneficiaries, as for other patients, a genetic counselor's state licensure makes it so that they can conduct appointments without this supervising requirement (John Richardson, Pers.Comm.). Also, with billing and reimbursement being at the center of this barrier to provide care under Medicare, counselors willing to offer their services free of charge are at risk for committing unlawful inducement (Richardson, 2020). For these reasons, the COVID-19 pandemic has both exacerbated and shed light on this issue, highlighting the need for political action to open greater access to genetic counseling services for all.Access to Genetic Counselor Services ActIn line with this necessary call for policy change, Genetic Alliance—alongside >250 organizations across medical, institutional, and research disciplines—has signed and rallied support for amending Medicare to ensure improved access to genetic services for beneficiaries (National Society of Genetic Counselors, 2020). The “Access to Genetic Counselor Services Act,” or H.R. 3235, recognizes genetic counselors as providers under Medicare, removing the need for physician oversight and allowing reimbursement for services at a level of 85% physician payment standards (National Society of Genetic Counselors, 2020). It appears that, in the wake of COVID-19 pandemic, the U.S. Department of Health and Human Services has placed its focus on broader changes to the health care system, including many waivers to certain Medicare regulations to allow greater access to telehealth (John Richardson, Pers.Comm.). Waivers cannot be provided to genetic counselors as they are not recognized in the statute, therefore, H.R. 3235 is legislation that needs to be enacted so that genetic counselors are recognized in the statute as providers in the first place (John Richardson, Pers.Comm.). The challenge now is to increase congressional support and to find a legislative vehicle wherein this legislation fits (John Richardson, Pers.Comm.). Essentially, the root of this challenge is to acknowledge the promising accessibility of telehealth as uncovered by the pandemic, while simultaneously turning our sights to the underlying structural changes that must first be made to ensure no one seeking care becomes stuck in the waiting room.Furthermore, although H.R. 3235 has its focus on access for Medicare beneficiaries, it also acts as a greater comment on the value of the genetic counseling profession itself.Specifically, the emphasis genetic counseling upholds on placing the individual at the center of decision making, and recognizing the many factors at play that influence one's genetic health, offers a model to follow in terms of the future of precision medicine (Stoll et al., 2018). This is demonstrated by recent investigations of patient-reported outcomes that showcase significant feelings of empowerment within individuals after consultation with a genetic counselor (Inglis et al., 2015; Yuen et al., 2020). As NSGC President, Gillian Hooker emphasizes—although in-person visits to the Hill having been temporarily placed on hold, it is essential that this component of what genetic counseling means to the people it serves is not lost in efforts to gain support for the bill (Gillian Hooker, Pers.Comm.). At this pivotal time in global history, small steps such as the passage of the Access to Genetic Counselor Services Act (H.R. 3235) have the potential to summate into a much needed transformation of our health care system as we know it. Specifically, a system in which the people it serves are placed at the very center, empowered as the hosts of their own genetic health.For Genetic Alliance, this access to quality care remains a critical issue. We stand with NSGC and the patients who need services in a challenging time. This is now an urgent issue as we all adjust to what decreased health care services look like, in a time when we need them more than ever.How to SupportAs a part of the efforts to gain support for H.R. 3235 in Congress, Genetic Alliance and NSGC are encouraging anyone involved in genetic testing, genetic medicine, and general medicine, including researchers, genetic counselors, clinicians, and patients, to contact their congressional representatives. Research institutions and other organizations interested in advocating for the bill are able to sign-on alongside other institutions showing support. Visit www.nsgc.org/p/cm/ld/fid=612 to learn more.ReferencesBiesecker B (2020) Genetic counseling and the central tenets of practice. Cold Spring Harb Perspect Med 10:a038968. Crossref, Medline, Google ScholarBuchanan AH, Datta SK, Skinner C, et al. (2015) Randomized trial of telegenetics vs. in-person cancer genetic counseling: cost, patient satisfaction and attendance. 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Crossref, Medline, Google ScholarFiguresReferencesRelatedDetailsCited byGenetic counseling, virtual visits, and equity in the era of COVID‐19 and beyond21 July 2021 | Journal of Genetic Counseling, Vol. 30, No. 4Support Access to Genetic Counseling Sharon F. Terry16 June 2021 | Genetic Testing and Molecular Biomarkers, Vol. 25, No. 6 Volume 24Issue 11Nov 2020 InformationCopyright 2020, Mary Ann Liebert, Inc., publishersTo cite this article:Katherine Anderson and Sharon F. Terry.Please Wait for the Host to Start This Meeting: A Push for H.R. 3235 Amid COVID-19.Genetic Testing and Molecular Biomarkers.Nov 2020.689-691.http://doi.org/10.1089/gtmb.2020.29058.sjtPublished in Volume: 24 Issue 11: November 10, 2020Online Ahead of Print:October 14, 2020PDF download