Ensure Access to Genetic Counselors for Medicare Beneficiaries

Issue

The Secretary’s Advisory Committee on Genetics, Health, and Society has confirmed that genetic counselors’ inability to be directly reimbursed by Medicare has created access problems for patients in need of such services.

Congress should enact legislation that would recognize genetic counselors as providers, thereby integrating genetic counselors into the Medicare program. Beneficiaries must be able to access genetic counseling services to ensure they are fully informed about appropriate genetic tests. Costs to the program will be reduced by personalized preventative medicine approaches.

• Genetic counselors identify more genetic risk factors than primary physicians, and these risk factors alter the medical management of patients.
• Genetic counseling and genetic testing in families with hereditary cancer is just one current example that has been demonstrated to result in high-risk patients selecting increased cancer surveillance and risk reducing surgeries, resulting in the diagnosis of early-stage tumors.

Patients report that the benefits of genetic counseling include a client-centered approach, suitable explanations of complex information, facilitated decision-making, genetic counselor expertise, psychosocial support, anticipatory guidance, facilitated communication with spouses and other family members, and reduction of anxiety. These benefits contribute to improved patient compliance with prescribed medical treatments, screening, and prevention measures. This approach is in line with the recommendations of the Institute of Medicine to improve the quality of healthcare in the United States.

Background

Significant scientific advances in genomics are predicted to revolutionize the practice of medicine, but compared to other areas of medicine, very few genetics services have reached consumers. To ensure that these scientific breakthroughs are translated to the practice of medicine, public policy must encourage the integration of genomics and genetic counseling into the health care system.

Genetic Counselors emerged as a health care occupation in the early 1970s as genetics was becoming better understood and more diagnostic options were developed. Currently, there are approximately 2,200 certified genetic counselors in the US. They are healthcare professionals with specialized graduate degrees and training in medical genetics and counseling. Genetic counselors practice in a variety of specialties including but not limited to Obstetrics, Oncology, Pediatrics, Neurology and Cardiology.

Genetic counselors obtain and interpret family and medical histories, identify individuals and families at risk for genetic disease, explain inheritance and natural history of genetic diseases, quantify chances for occurrence and recurrence, explain available testing options, and discuss management, prevention, and research opportunities.

The field of genetic counseling is growing rapidly; membership to the National Society of Genetic Counselors has grown by over 50% in the past 6 years and the number of Genetic Counseling training programs in the U.S. and Canada has increased by approximately 60% since 1994.

Unfortunately genetic counselors have not been fully integrated into the health care system due to the “infancy” of the science and the profession. Barriers to integration have been a lack of state licensure, primarily due to the small number of genetic counselors, and the lack of recognition as a health care provider within the federal statutes. The lack of integration prohibits many potential consumers from accessing these services, resulting in an ineffective translation of the scientific breakthroughs resulting from the Human Genome Project. Genetic counseling services can dramatically alter the practice of preventative health care and personalized medicine.

Prevalence

• Mutations in genes are responsible for an estimated 3,000 to 4,000 hereditary diseases and conditions.
• Genetic testing is clinically available for more than 1,000 conditions and hundreds of additional tests are in research and development.
• Approximately 70% of pediatric and 12% of adult hospital inpatient admissions, 15% of cancer diagnoses, 10% of adult chronic disease and 30% of premature deaths have a genetic cause or contributing factor.

Provider Knowledge

• Advances in genetics and genomics will aid in the understanding of disease processes and will assist in the use of therapeutic and preventive approaches that will significantly improve health outcomes.
• Education and training in genetics and genomics is lacking for most primary care and non-genetics specialists, and this has led to erroneous or delayed diagnoses, incorrect disease management, deficient family planning counseling, and unnecessary costs for patients and payers.