A landscape assessment of Medicaid recognition for genetic counselors

Abstract

Payer enrollment for genetic counselors (GCs) is fundamental to long‐term field sustainability and patient care access. Until federal recognition is obtained, enhancing Medicaid policies may help address existing GC coverage disparities. Understanding the current landscape is critical to mapping an effective strategy for future advocacy efforts. This study assessed GC provider enrollment and relevant CPT^® codes across Medicaid programs in the United States via a review of open‐access Medicaid websites for 50 US states, Washington, DC, and 5 US territories in 2024. Medicaid fee status for CPT^® code 96040 (GC only, 30 min) and S0265 (GC with physician supervision, 15 min code), fee schedule dates, availability of GC as a provider enrollment type, and state licensure status were abstracted. Of Medicaid provider enrollment websites for US states and DC, 21.6% (11/51) included genetic counselors; 49% (25/51) listed CPT^® code 96040 and 13.7% (7/51) listed S0265 in the fee schedule with a non‐zero rate; none of the US territories listed either. Of the 34 regions with GC licensure, 32.4% (11/34) included GCs as an enrollment type in their state Medicaid provider website, while none of the 22 unlicensed regions did. This assessment highlights a gap between state licensure efforts and enrollment of GCs by state payers. Advocacy and public health policy directly targeting state Medicaid programs provide another avenue to increase coverage for GC services. A key downstream benefit of GC recognition through these efforts includes expanding access to genetic counseling services for underserved communities.

What is known about this topic

Little is known about the options for genetic counselors to enroll with state Medicaid plans and coverage for genetic counseling‐specific CPT^® codes. Genetics Policy Hub (NCCRCG.org) outlines Medicaid coverage policies for genetic services. However, this resource lacks specific data as to whether genetic counselors can enroll as a provider type and was sunset in 2024.

What this paper adds to the topic

This landscape assessment compiled data on the recognition of genetic counselors and related billing codes among Medicaid programs. Improving Medicaid coverage supports the professional sustainability of genetic counselors and ensures that patients, particularly those in underserved communities, have access to necessary genetic counseling services. This work will support the development of state and national strategies to expand access to genetic counselors within Medicaid programs.

1. BACKGROUND

In 2023, the United States Census reported that 36% of people with health insurance relied on government‐funded plans, with Medicaid and Medicare representing the largest of such programs (Keisler‐Starkey et al., 2023). Medicaid typically insures people whose incomes are below the federal poverty threshold, children, people who are pregnant, and people with disabilities. Medicare primarily covers people over age 65 and people with disabilities. While both Medicaid and Medicare exist under the umbrella of CMS, Medicare is federally administered, and Medicaid combines federal oversight with state administration, allowing flexibility to address state‐specific needs. The flexibility, however, results in variability across state Medicaid plans and impacts what types of providers Medicaid will cover, who is eligible for Medicaid, and what medical services the plans cover, such as access to genetic counselor (GC) services (Raphael, 2024).

1.1. The role of CMS in genetic counselor recognition in the United States

Even as a government entity, CMS plays a vital role in the recognition, reimbursement, and furnishing of private US healthcare services. One of the most crucial ways this occurs was solidified with the passing of the Health Insurance Portability and Accountability Act (HIPAA) in 1996 when the Current Procedural Terminology (CPT)^® and Healthcare Common Procedure Coding System (HCPCS) were enshrined into law. CPT^®, managed by the American Medical Association (AMA), defines healthcare services and assigns Relative Value Units (RVUs), which CMS and state Medicaid programs review for Medicare and Medicaid coverage (American Medical Association, 2025). CMS also publishes the annual Medicare Physician Fee Schedule (MPFS), listing Medicare‐covered services and approved RVUs. Medicaid programs similarly release fee schedules outlining recognized codes and maximum reimbursement rates. Despite the appearance of separation between publicly funded programs and private insurers, since the MPFS's inception in 1992, payers have used it as a benchmark for pricing and coverage (Levy & Borowitz, 1992). When surveyed by Doyle et al. (2015), medical directors at private payers ranked ‘CMS recognition of GCs’ among the top most influential barriers to GC coverage (Doyle et al., 2015). While there has been considerable focus on achieving Medicare recognition for genetic counselors, Medicaid recognition has not been a focus of national advocacy work until the most recent National Society of Genetic Counselors 2025–2027 Strategic Plan (National Society of Genetic Counselors, 2024a; Riordan et al., 2024). Medicaid plays a vital role in providing healthcare to traditionally underserved populations, underscoring the importance of advocacy in this area to ensure equitable access to genetic counselor services.

1.2. Genetic counselor recognition at the state level

State licensure for genetic counselors has been a key advocacy focus, to standardize professional criteria and enhance public protections. As of November 2024, 34 states have implemented licensure for genetic counselors; South Carolina is in the process of establishing regulatory frameworks/rulemaking, and Hawaii passed a licensure law and has not enacted it (Becerra, 2024; National Society of Genetic Counselors, 2024b). Licensure legitimizes the profession by ensuring individuals calling themselves genetic counselors have the appropriate credentials; however, title protections are distinct from payer recognition and coverage. Payer recognition is built upon the cornerstones of payer contracting and credentialing. Contracting establishes an agreement between a practice and the payer to define the terms of service reimbursement. Credentialing verifies an enrolling provider's qualifications, certifications/licenses, and pertinent malpractice history. Most payers, including Medicaid, refer to this process as “provider enrollment.” Medicaid provider enrollment applications are processed through state Medicaid offices, often via third‐party‐administered websites (Youngerman et al., 2020). While multiple major payers are known to enroll genetic counselors, limited information is available on nationwide access to private payer enrollment for GCs (Leonhard et al., 2017). Additionally, no literature exists regarding Medicaid's enrollment of genetic counselors. Some states, including Indiana and Michigan, have publicly available bulletins announcing Medicaid recognition of genetic counselors as a provider type (Indiana Health Coverage Programs, 2017; Michigan Department of Health and Human Services (MDHHS), 2022). However, a comprehensive list of Medicaid programs recognizing genetic counselors, along with details on how this recognition was achieved, is lacking.

1.3. Billing for genetic counselor services

Successful billing requires correct coding, alignment with payer policies, and proper provider enrollment and credentialing. Missing or misaligned components of the billing process can lead to denials or out‐of‐network restrictions. Genetic counseling billing methods vary due to the availability of multiple codes, recognition barriers, and limited awareness of the profession (Gerard et al., 2018; National Society of Genetic Counselors, 2021).

Different codes have distinct benefits and limitations (Table 1). For example, Medicare may cover a facility fee when billed under a hospital, despite GCs lacking CMS recognition, as this service is billed under a hospital national provider identifier (NPI). However, facility fees lack service specificity, making them susceptible to increased denials and an administrative burden to appeal (Monahan, 2023). Ideally, billed codes should be specific to the service and identifiable by provider type, making 96040 (American Medical Association, 2024) and S0265 the best proxies to evaluate the current coverage of genetic counseling services. The presence of 96040 and/or S0265 in a payer's fee schedule may provide information about the maximum reimbursement for those codes; however, it does not guarantee coverage. Codes listed on fee schedules are subject to specific payer policies that dictate when and how they will be covered (National Coordinating Center for the Regional Genetics Networks, 2024).

TABLE 1.

Methods for billing for genetic counselor services.

Billing method	Description
CPT® Codes 96040 & 96041	96040 (American Medical Association, 2024) is used for 30‐min face‐to‐face genetic counseling sessions, it is stackable and compatible with modifiers −95 (video) and −93 (audio). This code is the only code available solely for use by GCs and intended to be billed in a GC's name. In October 2023, the AMA announced that CPT® code 96040 would be replaced by CPT® code 96041, effective January 2025 (American Medical Association, 2025)
Healthcare Common Procedure Coding System (HCPCS) II Code S0265	S0265 is reported for each 15‐min session of genetic counseling conducted under physician supervision (National Society of Genetic Counselors, 2024b). As S0265 is billed under a physician/advanced practice provider (APP) name and requires physician oversight, making it less favorable for genetic counselors practicing independently
Evaluation & Management (E&M) codes and ‘Incident to’ services	E&M codes are a set of codes designed to report consultations for physicians and APPs (American Medical Association, 2025). These codes are typically singular (not stackable) and are selected based on the time or complexity of the service provided. Genetic counselor practices may use E&M codes when patients are seen by both a physician/APP and a genetic counselor as part of the same service. E&M codes are billed under the physician/APPs name and the GC services are typically considered staff time, similar to nursing (National Society of Genetic Counselors, 2024c)
Facility Fee	Facility fees are billed under a hospital/facility's name and help institutions recover staffing and equipment costs associated with facility services

Claims data analysis is a common method for studying payer coverage; however, it often lacks the details needed to paint a complete picture of Medicaid access. This is especially true when studies group payers or do not differentiate between claims from distinct sources such as traditional Medicaid plans vs. Medicaid MCOs (managed care organizations).

Research on genetic counseling claims using code 96040 shows variability across states and payers. Gustafson et al. (2011) found a 62.6% coverage rate for 289 services among eight private payers in Ohio, which lacked GC licensure at the time (Gustafson et al., 2011). Similarly, Leonhard et al. (2017) reported 52.8% coverage for 582 encounters across 31 private payers in South Dakota (Leonhard et al., 2017). Spinosi et al. (2021) analyzed 3943 encounters in New Jersey, finding coverage rates of 65% among private payers. Notably, Spinosi et al. (2021) identified 59% coverage for Medicaid MCOs and 0% for Medicare or Medicaid. These findings highlight that while private payers often cover genetic counseling, gaps remain in understanding Medicaid coverage due to state policy variations and regional healthcare differences.

1.4. Objectives of the study

This study aims to provide an assessment of the current landscape of Medicaid recognition of genetic counselor services across the United States and to examine the intersection of state licensure and Medicaid recognition of GCs. By evaluating the enrollment options for genetic counselors as Medicaid providers, the inclusion of relevant billing CPT^® codes in state Medicaid fee schedules, and the relationship between state licensure and the ability to enroll, this research seeks to identify gaps and inform strategies for advocacy and policy improvement.

2. METHODS

This is a cross‐sectional descriptive study involving the review of publicly accessible state Medicaid provider enrollment websites across the United States and its territories. The research protocol was determined to be exempt from Institutional Review Board (IRB) review. The analysis included all 50 US states, Washington DC, and the 5 US territories (American Samoa, the Commonwealth of the Northern Mariana Islands [CNMI], Guam, Puerto Rico, and The US Virgin Islands). Every state, region, or territory that has a Medicaid program was included in the review. This list was retrieved from the federal Medicaid website (medicaid.gov). Data collection was performed independently for each state and region by two reviewers, consisting of a genetic counselor and an employed genetic counseling assistant. Data collection via Medicaid website review and direct contact with provider enrollment offices was completed between April and November 2024.

All reviewers completed training on how to access and evaluate Medicaid websites for the variables to collect. A protocol for data collection was created by a GC with expertise in billing and coding, including definitions of all relevant terms, a data extraction guide, and phone scripts. Each reviewer utilized this data collection protocol to evaluate each Medicaid website, and results were documented on a standardized data tracker in Excel.

Information on state licensure status was gathered from the National Society of Genetic Counselors (NSGC) website (NSGC.org) in November 2024. Enrollment and fee schedule data were abstracted from open‐access state provider enrollment (.gov) Medicaid websites and state Medicaid fee schedules. Seventeen variables were collected, including whether genetic counselors are listed as providers on the Medicaid enrollment website, whether 94040 and S0265 are listed in the Medicaid fee schedule, and the listed maximum reimbursement rate (Data [Link], [Link]). To confirm the accuracy of data collected from each Medicaid website, direct contact with the Medicaids provider enrollment office was accomplished via telephone or email communication with all state & district Medicaid offices. The data collection protocol phone script was utilized.

An expert panel was convened to address discrepancies in data collected by the two independent reviewers. The panel consisted of four genetic counselors with experience in billing and Medicaid policy. Conflicting data entries were reviewed, and discrepancies were resolved through consensus or through confirmation from the state Medicaid provider enrollment office. Descriptive and inferential statistics were used to summarize the findings. A t‐test and chi‐square test were used, and a p‐value of <0.05 was assigned for the significance threshold.

3. RESULTS

3.1. Overview

A total of 50 states, the District of Columbia, and 5 US territories were included in the review. The 5 US territories included in the review differ from states and the District of Columbia in how they administer Medicaid, including variations in funding structures, eligibility requirements, and program operations (Medicaid.gov). Due to these differences, the territories were excluded from further analysis. Notably, “genetic counselor” is not currently included as an enrolling provider type in the Medicaid provider enrollment applications for any of the territories. Additionally, Puerto Rico administers its Medicaid programs exclusively through MCOs, which means it may have different coverage and/or enrollment policies than traditional Medicaid programs. Puerto Rico has no centralized, publicly accessible Medicaid fee schedule available for review. The remaining territories of American Samoa, CNMI, Guam, and the US Virgin Islands all use Hawaii's Medicare reimbursement fee schedule (distinct from the Hawaii Medicaid schedule) as their Medicaid fee schedule. The Hawaii Medicare reimbursement fee schedule does not list either 96040 or S0265.

3.2. Medicaid provider enrollment status

Genetic counselors were listed as a provider type either on an eligible provider list or on the provider enrollment website application in 11 (21.6%) of the 51 states/districts analyzed (Table 2). Notably, all 11 states listing genetic counselors also have genetic counselor licensure. The majority of states that include genetic counselors as an enrolling provider option in their Medicaid programs explicitly use the term “genetic counselor” in their listings. Other variations, such as “licensed genetic counselor” and “certified genetic counselor,” were observed, though were less common (n = 3).

TABLE 2.

Summary of genetic counselor licensure, Medicaid enrollment, and inclusion of associated CPT codes on fee schedules by state.

State/district	Licensure status	Licensure year	GC enrollment		96040		S0265
			Listed?	Title	Listed?	Amount	Listed?	Amount
Alabama	Licensed	2019	No		No		No
Alaska	No Licensure	–	No		No		No
Arizona	No Licensure	–	No		No		No
Arkansas	Licensed	2019	No		No		No
California	Licensed	2000	No		No		Yes	$15.00
Colorado	No Licensure	–	No		Yes	$30.00	Yes	$16.12
Connecticut	Licensed	2015	No		No		No
Delaware	Licensed	2010	No		No		No
Florida	Licensed	2021	No		No		No
Georgia	Licensed	2019	No		No		No
Hawaii	In Rulemaking	2010	No		Yes	$55.98	No
Idaho	Licensed	2015	No		Yes	$25.82	No
Illinois	Licensed	2006	Yes	GC	Yes	$40.20	No
Indiana	Licensed	2009	Yes	GC	Yes	$44.48	Yes	N/C
Iowa	Licensed	2018	No		Yes	$43.89	No
Kansas	No Licensure	–	No		No		No
Kentucky	Licensed	2017	No		No		No
Louisiana	Licensed	2018	No		Yes	$33.64	No
Maine	No Licensure	–	No		Yes	$33.85	Yes	N/C
Maryland	Licensed	2021	Yes	GC	Yes	$38.02	No
Massachusetts	Licensed	2006	No		Yes	N/C	No
Michigan	Licensed	2018	Yes	GC	Yes	$33.02	No
Minnesota	Licensed	2015	Yes	GC	Yes	$38.42	Yes	$16.55
Mississippi	No Licensure	–	No		No		No
Missouri	No Licensure	–	No		Yes	N/C	Yes	N/C
Montana	Licensed	2021	No		No		No
Nebraska	Licensed	2012	No		No		No
Nevada	No Licensure	–	No		No		No
New Hampshire	Licensed	2013	Yes a	CGC	No		No
New Jersey	Licensed	1996	No		No		No
New Mexico	Licensed	2009	No		No		No
New York	No Licensure	–	No		Yes	$32.32	No
North Carolina	No Licensure	–	No		Yes	$31.09	No
North Dakota	Licensed	2013	Yes b	CGC	Yes	$55.48	No
Ohio	Licensed	2012	No		Yes	N/C	No
Oklahoma	Licensed	2006	Yes	GC	Yes	$42.95	No
Oregon	Licensed	2021	Yes	LGC	Yes	$38.98	Yes	$16.12
Pennsylvania	Licensed	2011	No		Yes	$26.10	No
Rhode Island	Licensed	2022	No		No		No
South Carolina	In Rulemaking	–	No		Yes	$32.82	Yes	$78.93
South Dakota	Licensed	2009	No		No		No
Tennessee	Licensed	2008	Yes	GC	N/A c		N/A c
Texas	No Licensure	–	No		Yes	$43.14	No
Utah	Licensed	2001	Yes	GC	Yes	$37.29	Yes	45% d
Vermont	No Licensure	–	No		Yes	N/C	No
Virginia	Licensed	2014	No		Yes	$44.05	No
Washington	Licensed	2009	No		Yes	$30.96	Yes	N/C
Washington, DC	No Licensure	–	No		Yes	$48.38	No
West Virginia	No Licensure	–	No		Yes	$33.22	No
Wisconsin	Licensed	2021	No		Yes	N/C	Yes	N/C
Wyoming	No Licensure	–	No		Yes	$24.64	No

Abbreviations: CGC, Certified Genetic Counselor; GC, Genetic Counselor; LGC, Licensed Genetic Counselor; N/C, Not/Non‐Covered (some fee schedules list either $0 or lists a non‐zero amount but explicitly state that the code is not covered).

^a State administrator indicated that applications are not accepted.

^b State administrator indicated that enrollment is only for MCOs.

^c Fee schedule not available.

^d Instead of a specific dollar amount, some states list a percentage of total charge as maximum allowable.

Of the 51 regions analyzed, 34 (66.7%) have licensure for genetic counselors, 2 (Hawaii and South Carolina) are in the rulemaking phase, and 15 do not have licensure. Of the regions with enacted licensure, 32.4% (11/34) list genetic counselors as an enrolling provider type in their Medicaid programs' provider enrollment website. None of the regions without licensure included genetic counselors as an enrolling provider type (Figure 1). A chi‐square test showed a statistically significant association between licensure status and the inclusion of genetic counselors as an enrolling provider in Medicaid (χ²(1) = 4.54, p = 0.033), indicating that regions with licensure are more likely to include genetic counselors as enrolling providers. This analysis was performed without Hawaii and South Carolina; however, the result remains significant if they were included.

FIGURE 1.

State Medicaid programs listing “genetic counselor” as a provider type for enrollment vs. state licensure status.

Among the 36 states with GC licensure laws (with or without enactment), the average time between 2024 and the licensure law passing was a mean of 10.6 years or a median of 10.0 years (range 0–28 years). The number of years since licensure passing was similar between states with GC enrollment (n = 11, mean 12.1 years, median 11.0 years) and states without listing GC enrollment (n = 25, mean 10.0 years, median 9.0 years) with no significant difference between the two groups (t = 0.88, p = 0.39), suggesting that the time since licensure passing was not a significant factor impacting enrollment status. This analysis is similar if Hawaii and South Carolina are excluded (they have licensure laws which have not yet been enacted) with no significant difference between the two groups (t = 0.66, p = 0.51).

3.3. Genetic counselor CPT ^® code recognition

Tennessee relies on managed care organizations to administer its TennCare Medicaid plan and is the sole state that does not maintain a publicly accessible Medicaid fee schedule; therefore Tennessee was excluded from this comparison. 60% (30/50) of the remaining states/districts listed CPT^® code 96040 on their Medicaid fee schedule (Table 3). Five regions listed 96040 with a $0 rate or as a non‐covered code. Reimbursement rates for 96040 ranged from $24.64 to $55.98, with a mean of $37.55 and a median of $37.29.

TABLE 3.

Comparison of CPT code status by enrollment and licensure status.

Enrollment status	Licensure status a	CPT code status b				Total
		96040 listed		96040 not listed
		S0265 listed	S0265 not listed	S0265 listed	S0265 not listed
Can enroll	Licensed	4	5	0	1	10
	No licensure	0	0	0	0	0
Cannot enroll	Licensed	2	7	1	13	23
	No licensure	5	7	0	5	17
Total		11	19	1	19	50

^a States in rule making are included in no licensure.

^b Tennessee excluded because Fee Schedule not available.

Eleven out of the 50 evaluated regions (22%) listed code S0265 on their Medicaid fee schedule. Five regions list S0265 with a $0 rate or as a non‐covered code. Reimbursement rates for S0265 ranged from $15.00 to $78.93, with a mean of $28.54 and a median of $16.12. With the exception of California, states that listed S0265 also listed CPT^® code 96040 in their fee schedule (Table 3).

Nine of the 10 states (90%) that include genetic counselors as an enrollable provider type on their website and publish a fee schedule (excludes Tennessee) also recognize CPT^® code 96040 (Table 3). New Hampshire was the only state with published fee schedules and GCs listed on their Medicaid provider enrollment portal that did not list CPT^® code 96040. Only four of the states that list genetic counselors for enrollment also list S0265.

Chi‐square tests revealed no statistically significant association between licensure status and the listing of CPT^® codes 96,040 (p = 0.29) or S0265 (p = 0.62).

3.4. Communications with Medicaid offices

Some Medicaid websites include a broad “other” category for provider enrollment, suggesting that genetic counselors may be able to apply under non‐specific classifications/taxonomies. In several states, no specific information about genetic counselor enrollment was available on Medicaid websites, requiring direct communication with Medicaid offices to clarify policies. Notably, our outreach to Medicaid offices through this project not only gathered information but may have also influenced system‐level changes. For instance, Utah updated its published provider enrollment application to include genetic counselors following inquiries from the research team. Similarly, Rhode Island does not currently list genetic counselors but indicated plans to apply to add genetic counselors as a recognized provider type. Conversely, some states list genetic counselors but maintain barriers to enrollment or reimbursement. In North Dakota, genetic counselors can enroll but are only reimbursed under MCO‐managed plans, not traditional Medicaid. In New Hampshire, while genetic counselors are listed as enrolling providers, Medicaid officials ambiguously stated that they were “not accepting applications for this provider type currently” and 96040 and S0265 are absent from the fee schedule.

4. DISCUSSION

As genetic counselors seek to enhance field sustainability and expand access for underserved populations, prioritizing Medicaid recognition represents a crucial opportunity to advance these goals. This assessment highlights a significant gap in Medicaid coverage for genetic counseling services, with only 22% of Medicaid programs nationwide listing genetic counselors as an enrolling provider type. Additionally, only 62% included any genetic counseling CPT^® codes in their fee schedules.

4.1. Variations in provider enrollment and CPT code recognition

Variations in how genetic counselors are recognized across states illustrate a critical consideration that some Medicaid programs may intend to cover GC services without explicitly enrolling genetic counselors as an enrolling provider type. A recurring theme identified through discussions with Medicaid programs was the reliance on indirect billing mechanisms for genetic counseling services. California, New York, and South Carolina exemplify this nuance. These states have policy documentation specifying coverage for genetic counseling services but require that such services be billed under a non‐GC provider, such as a physician enrolled with their Medicaid plan. For instance, New York Medicaid directs genetic counselors to bill using CPT^® code 96040, stating that “reimbursement is made to the physician, nurse practitioner, [etc.] (New York State Medicaid, 2015).” While these policies indicate an intention to cover genetic counselor services, they create barriers to independent practice, as individual genetic counselors unaffiliated with physicians or large medical practices lack a clear pathway to reimbursement. Additionally, this practice is not in line with the language used in the 96040/96041 CPT^® codes which specify these codes as being specific to GCs.

Medicaid coverage policies vary as each state administers its program within federal guidelines. Some states explicitly cover genetic counseling, while others group genetic counseling with related services, such as genetic testing, or limit coverage to specific populations like pregnant women or children. Considerable work in understanding Medicaid policies regarding genetics services at large, not specific to GCs, was previously published and is freely available at GeneticsPolicy.nccrcg.org; this resource ceased updating in September 2024 due to the conclusion of its funding (National Coordinating Center for the Regional Genetics Networks, 2024). This study shows that just over half of the assessed states include CPT^® code 96040 in their Medicaid fee schedules, and even fewer recognize HCPCS Level II code S0265. This discrepancy highlights variability in how Medicaid programs recognize and reimburse genetic counseling services. CPT^® code 96040, designated explicitly for services provided by genetic counselors, appears more frequently in fee schedules than S0265, likely reflecting its broader use among genetic counselors, as documented in the National Society of Genetic Counselors (NSGC) Professional Status Survey (National Society of Genetic Counselors, 2024b). Reimbursement rates also vary across states. For CPT^® code 96040, rates ranged from $24.64 to $55.98, while S0265 ranged from $15.00 to $78.93. Notably, the median rate for S0265 was $16.12, with South Carolina's rate of $78.93 standing out as an outlier. Such variability in reimbursement is expected, given regional differences in healthcare costs and Medicaid funding allocations. However, the complexity is compounded in states like Tennessee and others where Medicaid dissemination relies on managed care organizations (MCOs), whose fee schedules are not routinely publicly available.

Importantly, listing CPT^® code 96040 on their fee schedules does not guarantee coverage or reimbursement, as many state plans designate certain codes as “non‐covered.” The only previous study that evaluated traditional Medicaid coverage for 96040 was Spinosi et al. (2021), which identified 59% coverage for Medicaid MCOs and 0% for Medicaid in New Jersey. These findings are consistent with our data, which showed New Jersey's traditional Medicaid program does not have GCs listed as an enrolling provider type nor listings for 96040 or S0265 on the fee schedule. Claims for patients with Medicaid coverage were excluded from the Gustafson (Ohio) and Leonhard (South Dakota) reviews, with implications from the authors that this was done due to a known lack of Medicaid coverage (Gustafson et al., 2011; Leonhard et al., 2017). Again, these data are consistent with our findings. Ohio does not enroll GCs and lists 96040 as a non‐covered benefit. South Dakota similarly does not list GCs and does not list 96040 or S0265 on the fee schedule. All three states (NJ, OH, SD) had active GC licensure as of 2024.

4.2. Relationship between licensure, provider enrollment, and CPT code recognition

All Medicaid programs currently listing genetic counselors as an independent provider type operate in states with licensure, and at least one Medicaid office in a non‐licensed state (Arizona) indicated in conversation with our reviewer that licensure is a prerequisite for adding new provider types. These findings highlight the broader benefits of state licensure beyond title protection, such as potentially influencing provider recognition by Medicaid. However, genetic counselors are not listed as an enrolling provider type in 23 licensed states—demonstrating that achieving licensure alone is insufficient to secure payer recognition.

Interestingly, there was no significant association between state licensure and the inclusion of genetic counseling billing codes in Medicaid fee schedules, a finding consistent with previous studies reporting on claims coverage highlighting a lack of alignment between licensure status and reimbursement (Gustafson et al., 2011; Leonhard et al., 2017; Spinosi et al., 2021). The lack of correlation between licensure and listing GC‐related CPT^® codes in fee schedules suggests that efforts to address CPT^® code recognition require a separate mechanism distinct from licensure advocacy. This disconnect may stem from broader systemic issues such as the absence of formal recognition of GCs as providers by CMS. The lack of CMS recognition is known to pose a significant challenge to the appropriate valuation of CPT^® codes. RVU development by the AMA uses a structured process consisting of three components: provider work, practice expense, and liability protection. However, the AMA relies on CMS‐directed lists of recognized providers, leaving the ‘provider work’ component of current genetic counselor‐specific CPT^® codes, 96040 and 96041, unvalued. This lack of recognition not only prevents GCs from billing Medicare directly for their services but also impedes the field's ability to secure equitable valuation for its CPT^® codes. As state Medicaid programs adapt their fee schedules similarly to the Medicare Physician Fee Schedule, these barriers likely contribute to the variation in billing practices, coverage policies, and reimbursement rates for GC services across states. Thus, addressing CMS recognition of genetic counselors as providers is essential to ensuring equitable valuation of CPT^® codes, standardizing billing practices, and improving coverage and reimbursement for genetic counseling services across both Medicaid and other payer systems.

4.3. GC coverage and reimbursement: A complex and interconnected system

While this work identifies states where genetic counselors may enroll as Medicaid providers, experiential data from practicing GCs in these states is essential to validate these findings as regulations vary significantly between states and are subject to frequent changes. The absence of a genetic counselor as a named provider type on a Medicaid enrollment form does not constitute explicit intent to reject or not cover GC services, as highlighted by New York's Medicaid program which has a policy for 96040 coverage but does not enroll GCs. In addition, the presence of GC on the provider enrollment website does not guarantee the ability of a GC to enroll as a provider with that state's Medicaid plan, as highlighted by North Dakota and New Hampshire. Similarly, fee schedule listings and rates are subject to policies that are not always readily accessible. A Medicaid fee schedule may list 96040 and S0265 with a rate but not cover these services because they do not recognize genetic counselors. Medicaid plans may also cover codes that are not listed. Coverage and reimbursement may also depend on prior authorization or specific medical indications, and reimbursement rates can vary. With all medical billing, there exist nuances and plan‐specific policies that guide decision‐makers when reviewing claims forms submitted for reimbursement.

4.4. Future directions and advocacy considerations

States currently enrolling GCs may provide an opportunity to explore the factors that led to GC recognition, offering unique insights for future advocacy and public policy work. States with established Medicaid policies covering genetic counseling services could utilize these policies as strategic starting points for advocacy. By modifying existing policies to permit independent enrollment and billing for genetic counselors, these states could expand access and pave the way for broader reforms. A critical observation from this analysis is that listing genetic counselors as a provider type does not guarantee Medicaid reimbursement (North Dakota). This disconnect—whether stemming from systemic barriers to genetic counselor recognition by CMS or deliberate workarounds by states—underscores the need for further investigation and strategic advocacy to address gaps in access and reimbursement. Below, we highlight two key opportunities for advocacy:

1. In states with licensure: Two‐thirds of Medicaid programs in states with GC licensure do not list genetic counselors as an enrolling provider type. Many Medicaid representatives reached through this work were unfamiliar with genetic counselors, highlighting the need for targeted advocacy beyond licensure. This presents an opportunity for advocacy. Informed by the experiences of states with enrollment, such as Illinois, Indiana, and Michigan, advocates in these states could engage with their Medicaid offices to identify potential pathways for GC recognition. Reviewing Medicaid policy libraries for terms like “genetic counselor” may help identify existing policies that could support arguments for GC recognition. Lessons from licensure advocacy can also inform Medicaid enrollment efforts.

2. In states without licensure: No states without GC licensure currently list genetic counselors as Medicaid enrolling providers, suggesting a connection between Medicaid enrollment and licensure. Advocates can leverage this information to highlight the broader benefits of licensure when engaging with legislators. Beyond title protections, licensure can facilitate Medicaid recognition, thereby improving access to genetic counseling services for Medicaid beneficiaries. This argument could be particularly compelling in states such as Texas, where political climates favor limited government. By emphasizing licensure's practical benefits—enhanced healthcare access and better GC service integration—advocates can make a compelling case for licensure that further extends beyond title protections.

Further studies examining coverage, reimbursement structures, and the downstream impact of GC enrollment on MCOs could strengthen GC advocacy efforts. Although beyond this study's scope, the authors recognize that many state Medicaid programs utilize MCOs to help manage and deliver care. MCOs are non‐government organizations, often established health insurance companies, that contract with Medicaid programs to provide services on the state's behalf. While state Medicaid offices retain control over setting minimum coverage standards—such as eligibility criteria and provider enrollment policies—the operational management of these plans is delegated to MCOs. Medicaid's reliance on MCOs has grown significantly over recent decades, with the majority of US Medicaid beneficiaries now receiving coverage through these entities (Raphael, 2024). MCOs, which often operate private insurance plans under well‐known brand names in addition to their Medicaid contracts, must adhere to Medicaid policies for beneficiaries. This dual role creates a unique advocacy opportunity for expanding genetic counseling (GC) services. Greater recognition of genetic counselors within Medicaid programs could improve access to GC services for Medicaid recipients and positively influence coverage for GC services in private insurance plans administered by the same MCOs. A major challenge in GC billing lies in the complexity of contracting and credentialing processes. However, if MCOs develop GC‐specific workflows to meet Medicaid requirements, these workflows could also reduce barriers in their private insurance operations.

One consideration not fully explored in this work is the potential connection between Medicaid enrollment and CMS regional offices. CMS operates 10 regional offices that help manage, monitor, and ensure quality control of Medicaid programs. For example, Region V, which includes four states with enrollment, may offer valuable insights. Exploring the intersection between these regional offices and enrollment processes could reveal new opportunities for advocacy and inform future initiatives aimed at expanding Medicaid coverage for genetic counselors.

4.5. The role of public health policy

Public health policies may further impact and inform this work beyond advocacy efforts. The United States has benefited from a wealth of public health genomics initiatives, including newborn and prenatal screening programs, cancer genomic testing protocols, and biomarker bills (Modell et al., 2022; Roberts et al., 2024). These initiatives illustrate how public policy and funding could potentially influence Medicaid plans, which often evolve to recognize and cover emerging public health needs. While not within the scope of this study, an important question remains: Could enrollment and CPT^® coverage in the Medicaid programs examined be linked to broader genomic initiatives? Further research may help clarify how public genomic health programs may have contributed to the increased recognition of genetic counselors in states that have benefited from them.

4.6. Implications for health equity and professional sustainability

Improving Medicaid coverage for genetic counseling services is essential not only for the sustainability of the genetic counseling profession but also for advancing health equity in the United States. Medicaid serves a large population of individuals otherwise uninsured or underinsured, people with disabilities, and other vulnerable groups who are likely to benefit from access to genetic counseling services. Expanding Medicaid recognition of genetic counselors as providers and increasing the inclusion of relevant CPT^® codes would directly improve access to care for these populations. This study underscores the need for continued state‐level advocacy and the sharing of successful strategies across states. By learning from regions that have made progress in enrolling genetic counselors and including CPT^® codes in their fee schedules, we can work toward a more robust and standardized approach to Medicaid coverage. As the field of genetic counseling continues to grow, addressing these barriers is crucial for ensuring that all patients, regardless of payer coverage, have access to high‐quality genetic counseling services.

While Medicaid is a US‐based healthcare entity, the widespread use of CPT^® coding and provider enrollment processes across the global medical community highlights the broader applicability of this work. It provides a unique opportunity to examine recognition and coverage processes on an international scale, benefiting a wide range of healthcare professionals and organizations. This research also offers valuable insights for advocates of other healthcare professions who may face recognition challenges within CMS similar to those genetic counselors have encountered.

AUTHOR CONTRIBUTIONS

AV, BR, RN, and VP contributed to the conception and design of the work. All authors (AV, BR, DG, MB, MH, RN, & VP) contributed substantially to the acquisition and interpretation of the data and drafting the manuscript. All authors reviewed and approved the final version to be published. All authors agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

FUNDING INFORMATION

This study was conducted without external funding.

CONFLICT OF INTEREST STATEMENT

Brian Reys declares he has received travel funding from Invitae Corporation and honoraria from Astra Zeneca. Alyssa Valentine, Vivian Pan, Delaney Gaston, Mardarius Harper, Maya Brouette declare no conflicts of interest. Regina Nuccio is an employee of Concert, Inc.

ETHICS STATEMENT

No human or non‐human animal studies were carried out by the authors of this article; therefore, an IRB application was not submitted.

POSITIONALITY STATEMENT

As authors of this manuscript, we acknowledge that our identities, experiences, and values shape our approach to this research. Our author group comprises individuals with diverse identities across race, ethnicity, gender, and sexual orientation, including practicing genetic counselors, genetic counseling assistants, and students at various career stages. Many of us currently work in or have significant experience serving underserved populations, providing us with firsthand knowledge of barriers to genetic services for patients with Medicaid coverage and those from marginalized communities. Several members of our team have engaged in professional advocacy and policy efforts at both local and national levels, reflecting our collective belief that genetic counseling represents a valuable healthcare service deserving appropriate reimbursement and recognition. We recognize that our perspectives are shaped by our locations within the United States healthcare system, potentially limiting our ability to consider international models, and that our professional identities may influence our views on the importance of licensure, billing, and reimbursement mechanisms. Despite these acknowledged biases, we have endeavored to maintain methodological rigor and critical reflexivity throughout our research process to present a comprehensive landscape assessment. By sharing our positionality, we invite readers to engage critically with our work, recognizing both its contributions and its limitations as shaped by our collective and individual experiences and perspectives.

PERMISSION TO REPRODUCE MATERIALS FROM OTHER SOURCES

The authors would like to acknowledge and thank MapChart.net, which allows the free use, editing, and distribution of the map used in this work. CPT Copyright 2024 American Medical Association. All rights reserved. CPT^® is a registered trademark of the American Medical Association.

Supporting information

Data S1:

Data S2:

Data S3:

Reys, B. , Valentine, A. , Pan, V. , Gaston, D. , Harper, M. , Brouette, M. , & Nuccio, R. (2025). A landscape assessment of Medicaid recognition for genetic counselors. Journal of Genetic Counseling, 34, e70057. 10.1002/jgc4.70057

DATA AVAILABILITY STATEMENT

The data that support the findings of this study are openly available from the .gov Medicaid websites assessed. The data collected by the authors will be made available as a supplement in .xlsx format.