Article: Precision Medicine Hinges On Access To Genetic Counselors

Author: Colleen Campbell

Journal: Health Affairs Forefront, October 22, 2024. DOI: 10.1377/forefront.20241018.271264

Excerpt:
The Food and Drug Administration’s approval of nearly a dozen gene therapies in the past year, including milestone treatments for sickle cell disease and hemophilia B, has finally ushered in the era of precision medicine. Yet, the United States remains unprepared to welcome this new chapter in health care.

The barriers to the full adoption of precision medicine are not confined to prohibitive costs, insurance complexities, and other expected health care system hurdles. An undervalued factor in the uptake of precision medicine is the system’s capability to connect patients to treatment. This is hindered by insufficient access to genetic health care in the United States, where genetic counselors play a leading role. For example, there is fewer than one full-time clinical genetic counselor specializing in cancer genetics in Mississippi, Wyoming, and Puerto Rico, and states such as Nevada, Oklahoma, and West Virginia have fewer than two clinical genetic counselors specializing in cancer genetics per million residents. Genetic counselors are health care professionals who can identify who needs genetic testing; explain what test results mean; and facilitate decision making around prevention, management, and now, treatment informed by one’s genetics. However, genetic counselors are not yet recognized as providers by Medicare—a problem that could be easily remedied in Congress through legislation that acknowledges these professionals as key members of the health care team.

Link to journal online: https://www.healthaffairs.org/content/forefront/precision-medicine-hinges-access-genetic-counselors