Genetic counseling licensure has been a conversation in our community for decades, and thankfully there has been steady progress.  We all know it’s important, but for many genetic counselors, the topic of licensure can feel like it’s “over there,” a little confusing and quite intimidating. Understanding genetics seems simple compared to tackling all the various steps needed to get a law passed. Where do you even start? Well, confession time: After my first state legislative planning meeting, I (Margo) had to quickly google Schoolhouse Rock’s “I’m Just A Bill'' to remember how a bill gets passed

I only became involved with Maryland’s legislative process because our lack of licensure was affecting my day-to-day activities. Challenges like ordering testing, performing telemedicine services, and a lack of reimbursement for my services were hindering my ability to provide the highest level of care to my patients. When we encounter the challenges we often want to point to our institutions, or the perceived lack of understanding about our profession, or  other factors. Little did I know that providing genetics services in a state that did not have genetic counselor (GC/GCs) licensure (in addition to a lack of federal provider status under Medicare) was the major reason why I was so frustrated.

My experience with state licensure led to a role on the NSGC Licensure Subcommittee. There, Katie and I fielded many questions about licensure, but also more recently, questions about NSGC’s Federal bill. Currently, NSGC has two major policy initiatives, one involves individual states and one involves the federal government. It is critical to know the difference between these two vitally important, but distinct efforts.

At its core, state licensure is about protecting the public. State governments view one of their roles as protecting the residents of their state from unqualified individuals that could do harm to their citizens. Therefore, healthcare service delivery is usually regulated at the state level. States grant licensure to many professions, including electricians and teachers, along with many healthcare professionals to ensure they are qualified to do a certain job that has the potential to cause harm if done improperly. Without licensure, professions are unregulated so anyone could simply call themselves an electrician (or genetic counselor) even with no training and there is nothing to stop them.

Achieving licensure for GCs in every state requires passing 51 individual bills through 51 different state (and Washington D.C.) legislatures. State licensure of GCs has three main purposes: 1) Protect the public from unqualified providers calling themselves a GC, 2) Apply sanctions, suspend, or remove licenses from incompetent or unethical providers, and 3) Create a scope of practice defining what services GCs are authorized to provide.  This year, four states enacted licensure, which brings the number of states that have passed bills to 33.  All allow independent practice and over a third of the states allow GCs to order genetic testing.

The second initiative involves something we have never done before as a profession- getting a Federal law passed. The law is called the “Improving Access to Genetic Services Act (H.R. 2144/S.1450).” If passed, the law would require Centers for Medicare and Medicaid Services (CMS) to recognize GCs as providers that can bill Medicare for their services, like many of our peers. Currently for patients with Medicare, GCs can only provide their services under physician supervision (and the physician bills the services provided). While state licensure allows GCs to see patients independently, we do not have provider status under Medicare.  Because of this, physicians essentially need to act as a supervisor when a GC sees Medicare beneficiaries.  This creates a two-tiered delivery system that makes it harder for Medicare patients to access GCs.  Additionally,  other commercial insurance companies often model their own coverage policies from  CMS. This results in a trickle-down effect leading many non-CMS payers to not reimburse GC services or set a very low reimbursement rate. 

Many of us have likely experienced the barriers and impact to patient care due to these federal limitations, even if we didn’t realize that was the root cause. These real-world examples are probably all too familiar:

• During the COVID-19 pandemic, GCs seeing cancer patients could not perform telemedicine for their Medicare patients who were undergoing chemotherapy. These patients could have avoided unnecessary travel and possible viral exposures due to the required in person care.
• Because GCs are unable to independently be reimbursed for the services provided, we are unable to generate revenue. Unfortunately, this lack of revenue means many genetics departments are unable to justify the cost of hiring more GCs or positions are eliminated due to lack of reimbursement.

Opposition to our federal bill by the American College of Medical Genetics (ACMG) has been a hot topic of discussion on social media (#gcchat) in 2021. The main point of opposition to the federal bill by ACMG is the ability of GCs to independently order genetic testing. It should be noted that close to 250 geneticists have signed a petition decrying ACMG’s opposition and supporting our federal legislation.

It is important to clarify that the ability of GCs to independently order genetic testing falls under state regulation and does not have to do with NSGC’s federal legislative efforts with CMS. Historically, the opposition of the physician community against GC licensure was a major roadblock to obtaining state licensure. However, the past few years have proved that the physician opposition against GC licensure has  diminished. During the 2021 legislative session in Maryland, ACMG provided written and oral testimony in opposition to the state bill, which included the ability to order testing.  Local geneticists and physicians testified in favor of the bill and it was enacted.  This positive trend is happening all over the country and most physicians not only support licensure, but they support the ability of GCs to order genetic testing.

While many GCs, including ourselves, had no experience or background in public policy, we recognized the importance of licensure in our day-to-day job and decided to become involved. Beginning the process of both state and federal legislation seems intimidating. There have been bumps in the road with both the state and federal legislative process and it is a multi-year undertaking. Luckily, as GCs, our skillset is uniquely positioned to be successful in this arena: march up to and talk to strangers, concisely and passionately explain our stance, and be tenacious and dedicated.

We strongly encourage our fellow GCs in states without licensure to volunteer their assistance. The process seems daunting, but recent efforts show there is a high probability of success. NSGC offers many resources, such as model bill language, grant funds to hire a local lobbyist, and the NSGC Government Relations team who provide significant support. Visit the NSGC state licensure webpage or reach out to the NSGC Staff Liaison, Jennifer Trotter for more information. The more GCs who assist with the cause, the more likely we are to overcome the perceived barriers to state licensure.  You don't have to wait until it is dramatically impacting your practice  to make a change - but frustration is an incredible motivator.

Note: Opinions expressed are the author’s personal opinion and does not reflect the opinions of the employer.

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