THE BACKGROUND
If you're in the field of genetics, you've likely heard chattering about oppositions to some interpretations of the HR3235 bill (not officially passed as yet). And if not, here's a quick synopsis. This bill provides coverage under Medicare of genetic counseling services that are performed by genetic counselors (GCs). This is huge since it recognizes Genetic Counselors as providers whereas currently Medicare/Insurance companies require that a physician be present to supervise GCs in order for a session to be conducted and paid for. Genetic counselors have made great strides with obtaining state licensure and towards getting this bill passed. Quick take home message- the passing of this bill will ultimately increase access to care for genetic services by significantly reducing wait times (there are more GCs than MDs who are specialized in genetic health), save overall healthcare costs (GCs bill less than MD counterparts for genetic counseling), and decrease fraud (Providers who inappropriately bill Medicare for genetic testing that's not warranted).
WHO ARE GENETICS COUNSELORS?
Genetic counselors are master's trained genetics professionals who help patients understand risks related to family health history, review genetic testing options, help patients understand their results, and navigate patients through all of the above with our counseling skills so that they make the best decisions for themselves. Sounds great, right!? We and many of our patients think so, however, there's a professional society called the American College of Medical Genetics (ACMG) which feels that GCs should not be able to order tests independently and should work within the supervision of an MD trained in Genetics. Genetic counselors are quite miffed by this since for years we've demonstrated that we are in fact very qualified to be part of the test ordering process and that limiting so, limits access to care for our patients. Recently, ACMG has gone as far as to say to states that provide licenses to GCs that allowing GCs to order tests could be problematic. However, here are 4 examples from our partners in care that think otherwise: \
Trusted By Large Hospital Administrators: GCs are increasingly sought out by hospital health systems for test utilization management. This means that hospital administrators have acknowledged having genetic counselors review genetic test orders from multiple specialties (ie, Neurology, Cardiology, Oncology etc) has had a significant positive impact on ensuring that the correct test is ordered (this means better outcomes for the patient) and that the most cost effective testing option is selected (this means saving $$$).
Trusted by Labs that Develop the Tests: A good genetic testing company will employ genetic counselors (my opinion- not fact). Having a GC on staff helps with ensuring that the test that's developed has good clinical utility, ensures that ordering providers understand the benefits and limitations of the test, and provides a support to patients and providers in test ordering and interpretation of results.
Trusted by MD Colleagues: In my own experience, which mirrors many of my GC colleagues' experiences, our MD colleagues from various specialties often defer to genetic counselors when considering ordering genetic testing and when interpreting genetic testing results. In fact, genetic counselors, alongside our OBs, MFMs, Oncologists etc have sat together with reps from the testing labs to discern which lab would be the best to work with. When patients come to their primary care doc with genetic testing results from direct to consumer testing, they turn around and refer the patient to us. When variants of unknown significance pop up on test results, oncologists and cardiologists have referred patients to genetic counselors.
Trusted by Insurance Companies: Many insurance payers require patients receive genetic counseling prior to testing and will in fact not cover the cost of testing if a patient has not had genetic counseling. So again, here we have a large group of Medical Directors at large insurance companies valuing the input of genetic counselors to validate which test is the appropriate test to order, yet the irony is that GCs cannot order these tests ourselves.
So great, my above points highlight that GCs are valuable and competent to make decisions on ordering genetic testing. But the heartache here isn't that we simply are not able to put our signature on a test order form. The real issue is that this law significantly impacts access to care and overall workflow of getting appropriate care to patients on so many levels.]
Let's go through a typical scenario to highlight the workflow under the current paradigm.
CASE EXAMPLE:
A couple is considering IVF due to difficulty getting pregnant and pregnancy losses.
OPTION 1, AKA CURRENT STATE OF AFFAIRS:
Patient Sees GC --> GC evaluates nxt steps --> GC has to contact patient's primary physician to explain what tests should be ordered and from where (or have patient do this on their own) --> Patient is confused about why GC can't just do this --> Primary care doc may or may not agree to this --> Patient gets frustrated with the process --> GC spends way too much time coordinating which limits the number of other people they could be helping.
OR
OPTION 2: IN A WORLD WHERE A GC CAN ORDER GENETIC TESTING:
Patient Sees GC --> GC evaluates nxt steps --> orders testing --> reviews results with the patient.
Note, in this scenario, if the GC is unable to appropriately assess the patient, the GC knows exactly how to get the patient connected with a Medical Geneticist or Reproductive Endocrinologist who can then further assist.
WORKAROUNDS
So instead of relying on changes to legislation, workarounds have been created to help with access. Since labs are unable to be the ordering provider for patients (conflict of interest here), they often contract with a 3rd party service that has a group of MDs that review the case and then "sign off" on it. Some of these MDs are trained in genetics, where others may not be. Again, while this does solve some of the problem in getting tests ordered, it underutilizes a large workforce of professionally trained genetic counselors who could create more effective access.
IN CONCLUSION
Genetic counselors have a unique skillset that enables them to understand all the nuances that can occur in a family medical history as well as help patients determine if genetic testing is in their best interest. This process to evaluate the utility of genetic testing in an individual case takes time that many non-genetics providers may not have. Limiting access to care that can be provided by genetic counselors ultimately hurts the patients that we could be seeing. Patients are more likely to be shuffled around and wait long times to get the care that otherwise they would be able to if only GCs were recognized by insurance companies and Medicare as "providers".
So if we are trusted by labs, trusted by hospital admins, and trusted by the larger medical community; then why are we not allowed to be the ordering provider?
Look, we don't completely understand the logic in limiting our ability to order tests. Clearly we are trusted by many to help with this process, yet when it comes to the formality of independently ordering the testing, our hands are tied by the laws currently in place. We value the relationship we have with our Medical Geneticists. And we know just when to refer patients to a medical geneticist (just this week I have referred 3 patients to a local genetics clinic for evaluation). But what strikes us as strange is that the American College of Medical Genetics feels that any MD is better able to order a genetic test vs a genetic counselor. And that to us, and to many of our patients, and physician colleagues just makes no sense.
So this is why at this time, you'll have better luck having your podiatrist with an MD at the end of their name order that preconception genetic carrier screening you're considering than a prenatal genetic counselor.
And if you want to be part of the change - support our state licensure efforts and encourage your physician colleagues to express their support as well.
Link to Bill HR 3235: https://www.congress.gov/bill/116th-congress/house-bill/3235/text
Ways to Support the Bill : https://www.hr3235.com/supporters