New Law Widens Access to Genetic Counseling but Licensure and Coverage Barriers Persist

Heather A. Zierhut, PhD, MS, CGC, and Adam H. Buchanan, MS, MPH, LGC
Published: Tuesday, Oct 09, 2018
Heather A. Zierhut, PhD,
Heather A. Zierhut, PhD, MS, CGC
Telehealth, a universal term for the use of digital information and communication technologies to remotely1 access healthcare services, is improving availability of healthcare services, particularly for patients in rural areas. Data from a wide range of medical specialties have demonstrated that telehealth can improve access while maintaining quality.2-4 Private payers have been influential in supporting telehealth initiatives, with more than 30 states mandating coverage.5,6 Yet limitations on Medicaid and Medicare reimbursement of telehealth have hampered broad implementation of this promising service delivery model.7-9

HR 1892, the budget agreement signed into law in February 2018,10 is being hailed for removing some of these limitations and improving access to care for Medicare recipients. The law contains provisions from the Creating High-Quality Results and Outcomes Necessary to Improve Chronic Care Act of 201711 and other telehealth bills that seek to expand Medicare coverage of telehealth services. Previously unrecognized uses of telehealth under Medicare Part B will now be allowable benefits, assuming they are clinically relevant and meet established requirements (section 303). In addition, accountable care organizations can access a variety of telehealth services with fewer restrictions (section 304). The bill also allows beneficiaries to choose whether they want to use telehealth options.

The potential for expanded coverage of telehealth is welcome news for several medical specialties, particularly those that offer limited access in rural areas. One such field is genetic counseling. Genetic counselors help people understand and adapt to the medical, psychological, and familial implications of hereditary cancer.12 They also help identify patients who may benefit from genetic testing and direct them to the most appropriate testing. The process of genetic counseling is particularly well suited to telehealth as it is primarily conducted via consultations that involve a communication process that can occur by phone or video. Cancer genetic counselors have seen a rapid expansion of telehealth services (telegenetics) in recent years. Although patient access to cancer genetic counseling varies widely across the United States, the demand for genetic counseling is increasing, as cancer patients’ germline mutation status increasingly has implications for cancer treatment decisions.13-17 For instance, individuals with germline pathogenic variants in BRCA1/2 genes and a growing list of cancer types (eg, ovarian, prostate) are eligible for treatment with poly ADP ribose polymerase (PARP) inhibitors.18 Accordingly, genetic counselors in oncology have reported increased referral volume due to the FDA approval of PARP inhibitors in the settings of treatment-resistant ovarian cancer.18 Additionally, the immunotherapy pembrolizumab has now been approved by the FDA to treat tumors that exhibit mismatch repair deficiency, a hallmark of Lynch syndrome, and have progressed on prior treatment.19 Further, a broadening list of cancer presentations are being recognized as being associated with higher likelihood of germline etiology, including metastatic prostate cancer.20,21

In keeping with the growing number of indications for referral to cancer genetic counseling, professional organizations are now requiring that cancer centers provide access to cancer genetics expertise. For example, in 2012 the American College of Surgeons began requiring that, to receive accreditation, cancer treatment centers provide patients with access to a qualified genetics professional.22 Some health insurance companies now require that a genetics expert be involved in the ordering of certain cancer genetic tests (eg, BRCA1/2 genes) for the testing to be covered.23 Private telegenetics companies have formed to help meet the growing number of recommendations and requirements for genetic counseling services.

Early research on patient outcomes in cancer telegenetics shows that it is acceptable to patients and can decrease costs to health systems and patients. A randomized comparison of clinic-toclinic telegenetics with in-person cancer genetic counseling found that telegenetics was substantially less expensive for the institution and was associated with comparable patient satisfaction.24 This service delivery model has also been compared with telephone genetic counseling, showing comparable patient satisfaction. One difference that was perceived by genetic counselors was that patients pay better attention to a videoconferencing consult than to a phone consult.25 Patients have reported high satisfaction with cancer telegenetics24-31 due to reduced travel burden31 and greater convenience.29,31

Telegenetics has been associated with positive psychosocial outcomes, including improvements in cancer genetics knowledge and in anxiety, depression, and cancer worry.24,25 A model of telegenetics that connects genetic counselors to patients’ home computers or devices has also shown promising psychosocial outcomes and favorable patient satisfaction32 while being deemed acceptable by genetic counselors.33 What’s more, a recent study of cancer genetic counselors showed high acceptance and usage of telegenetics, with two-thirds of respondents having conducted telegenetics consults.34 This is a striking increase in the use of telegenetics from 5 years ago, when the results of 2 studies of cancer genetic counselors showed that fewer than 15% had conducted a telegenetics consult.35,36

However, in spite of the new budgetary provisions for telehealth reimbursement, professional recommendations, and high acceptance of telegenetics services, significant barriers to broad implementation of cancer telegenetics persist. First and foremost, genetic counselors are not CMS-recognized practitioners. Therefore, the changes under HR 1892 will have very limited impact for Medicare beneficiaries seeking genetic counseling. Efforts are underway to introduce a bill to address this, but until it passes, genetic counselors cannot seek reimbursement from Medicare for their services. For third-party payers, companies can use the Current Procedural Terminology code modifier 95 to identify telemedicine services.

However, not all payers will reimburse for genetic counseling services. The second barrier that must be overcome to provide national coverage to cancer patients relates to genetic counseling licensure. Genetic counselors must obtain licenses for every state currently issuing licensure in which their patients reside. This leads to increased provider time and cost to ensure that genetic counselors are able to practice legally for all of their patients throughout a network. Additionally, reports on the effectiveness of cancer telegenetics frequently note technical glitches as barriers to delivery of care.24,25,31,32 Lastly, continuity of care is a concern for genetic counselors who play a key role in coordinating patients’ care within and among institutions.37,38 Because genetic counseling providers may be employed by other health systems and companies rather than by a patient’s main healthcare facility, the lack of a point person within that main healthcare facility could leave patients without referrals, follow-up care, and long-term medical management. In cancer care, this is especially important when guidelines recommend changes in medical management based upon genetic testing results (eg, increased frequency of screening using mammography and breast magnetic resonance imaging in BRCA1/ BRCA2 carriers and colonoscopy in patients with Lynch syndrome39,40).

Delivering telehealth services will be an efficient and scalable means to providing quality healthcare and education to all patients, despite the barriers stated above. Overcoming these barriers is particularly important as genetic counselors are increasingly needed to assist in the care of patients who are at increased risk to develop cancer. As the etiology of cancer is better understood and the use of genetic-based therapies expands, genetic counselors will remain an integral part of care and are particularly suited to meet these mounting needs. Advances in access and in reimbursement to genetic counselors will aid in the deployment of telegenetic services nationally. Ultimately, it is hoped that this will result in increased patient care, satisfaction, and outcomes.

Originally published by AJMC as “The Impact of New CMS Rules for Telehealth on Cancer Genetic Counseling.” Visit for a full list of references.

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