Help Ensure Access to Independent Genetic Counseling Services: Support HR 3235 

I’m writing today to ask for your help in showing support for H.R.3235 – the Access to Genetic Counselor Services Act of 2019. This Act, if passed, would allow for genetic counselors to be reimbursed for medically necessary genetic counseling services under part B of the Medicare program.

The Problem

Genetic counselors have advanced training and degrees in genetic counseling. They are certified by the American Board of Genetic Counseling, only after completion of rigorous training and testing requirements and are subject to regulation by licensure laws enacted in individual states. There is a growing body of evidence that supports that when genetic counselors are involved, genetic testing is ordered more appropriately and cost-effectively and patients receive the information they need to make informed decisions as pertaining to genetics and their health when a genetic counselor is involved.  

And yet, while this profession has existed for half of a century, genetic counselors have not been recognized as healthcare providers under the Centers for Medicare & Medicaid Services (CMS). Ironically, CMS guidelines often require genetic counseling as a prerequisite to genetic testing, however they do not reimburse genetic counselors for the services they provide – rather they hold that genetic counseling services should be bundled into the services of a CMS-approved physician.

The fact that genetic counseling is not reimbursed as an independent service has created tremendous difficulties with equitable access to genetic counselors. At Genetic Support Foundation, more than 40% of the patients we saw in 2019 had federal healthcare coverage through Medicare or Medicaid.  Medicaid recognizes and reimburses for genetic counseling in only a handful of states across the country and Medicare never does.  

What This Means for Patients

What this means for our patients is that they may have to agree to pay out-of-pocket for genetic counseling services. Genetic Support Foundation offers financial aid to all patients who do not have insurance coverage for genetic counseling based on financial need, and many of the hospitals and clinics we work with have similar safety net programs in place to ensure that all patients can access services. At Genetic Support Foundation, this means that donor funds are used to help subsidize the cost of genetic counseling for many patients with Medicare who can’t afford the cost of a genetic counseling visit.  

As is the case with many of my patients, this week I met with a woman who has been diagnosed with cancer for a second time. This, in addition to her family history of cancer, increases the odds for an inherited susceptibility to cancer. Determining if she had inherited cancer risk could benefit her cancer treatment, as well as help her family members better understand their risk so that they could work toward early detection and cancer prevention. This woman is also a Medicare beneficiary. Her oncologist referred her to me for genetic counseling recognizing that she may have an inherited susceptibility for cancer. Before she was scheduled she had to agree to pay out-of-pocket for the genetic counseling visit because the cancer center knows that they will not be reimbursed by Medicare for her genetic counseling visit.  

Oncologists, surgeons, and other healthcare providers in our community often refer their patients to see me or one of my genetic counselor colleagues as they recognize our expertise and the benefit genetic counseling can bring to their patients’ care. They also recognize that they do not have the same expertise in genetics and feel their patients would be best served by meeting with a genetic counselor.  Many patients who are referred for genetic counseling never make it in for an appointment because it is not a covered service under Medicare and they are concerned about the growing cost of their medical bills.    

I’ve worked as a genetic counselor for 17 years, during which time I have met with thousands of patients and families regarding concerns about genetic conditions and inherited risk for a variety of health concerns. I see my role as a patient navigator who helps individuals make sense of genetics and their health and supports them to make informed decisions with the goal of better health through prevention and early detection of conditions such as cancer and heart disease. CMS recognition of genetic counselors as healthcare providers would ensure continued access to independent genetic counseling services for all people.     

How You Can Help

Here is the ask:  please contact your local representative and ask that they co-sponsor H.R. 3235, the “Access to Genetic Counselor Services Act,” which would enable the Centers for Medicare and Medicaid Services (CMS) to recognize genetic counselors as practitioners. The landscape of genetics and healthcare is changing daily due to exciting innovation that is improving patient care. Independent genetic counselors are necessary to see that these new innovations are integrated into patient care in a responsible and meaningful way.