Approximately 30 million individuals have experienced a diagnosable eating disorder at some point in their life. People with an eating disorder are more likely to have comorbid physical and psychological conditions, higher annual health care costs, and experience reduced quality of life. Moreover, eating disorders are among the deadliest of psychological conditions, with anorexia nervosa in particular having an especially high mortality rate. While the burden is significant, there has long been a lack of access to eating disorder prevention, identification, and intervention services.

Parity of behavioral health care with general health care has been a long-time battle, culminating in the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act (MHPAEA) of 2008 and the Affordable Care Act’s (ACA’s) essential health benefits mandate. However, eating disorders have often been excluded from parity enforcement through loopholes or ambiguity in rules. These exclusions are in many cases implicit, manifesting through benefit design. For example, plans might omit or limit coverage for eating disorder-specific specialties (for example, dietetics) or employ cost-restricting tactics that prevent evidence-based, and often costly, eating disorder treatment (for example, more generous access to outpatient treatment compared to residential, strict medical-necessity requirements), even if the benefit plan technically meets regulatory requirements. In December 2016, the 21st Century Cures Act was signed into federal law and contained key parity provisions from the Anna Westin Act of 2015 (H.R. 2515/S. 1865), whose namesake died in 2000 as result of anorexia.

The 21st Century Cures Act is a controversial and multifaceted piece of legislation. The most critical provision of the law related to eating disorders, in particular, is in clarifying that coverage of eating disorder services, especially residential care, are subject to parity as mandated by the MHPAEA. This clarification was a monumental win for those involved with eating disorder advocacy. Theoretically, inclusion of eating disorders under the authority of the MHPAEA is now in effect given the MHPAEA’s status as an existing statute, but there are currently no regulations in place to ensure compliance.

Furthermore, once access to eating disorder services is widened through enforced parity, it is important to consider the quality of such care in general, and its measurement deployed in such a way so as to deter unscrupulous cream-skimming tactics at the plan and provider levels (for example, avoiding or referring out beneficiaries who might have higher eating disorder treatment needs [primarily women]). In June 2016, the Joint Commission attempted to address quality of eating disorder treatment through the release of eleven new standards for quality of eating disorder care that span both process and outcomes domains (Requirements for Eating Disorders Care, Treatment, or Services for Behavioral Health Care). As such, these new standards, along with the 21st Century Cures Act and the awaited rules, have the potential to complement efforts in ways that increase access to high-quality, evidence-based, eating disorder treatment.

Federal Regulations Via The 21st Century Cures Act And The ACA

Prior to the 21st Century Cures Act and after the ACA’s implementation, coverage for eating disorder treatment remained limited due to some insurance companies’ narrow definitions of medical necessity and lack of inclusion of eating disorder services in states’ benefit standards. In the rulemaking process for the ACA’s essential health benefits for mental health and substance use treatment, the Department of Health and Human Services (HHS) permitted states to create their own benefit benchmark plan relative to existing plans in the state, instead of having a national minimum standard. As a result of these state-based benchmarks, some states explicitly include or exclude certain eating disorder services from their behavioral and general health benefits. See Exhibit 1.

Exhibit 1: Essential Health Benefits Benchmark Plan Information Among A Sample Of Eight States, 2014–16

StateIncluded eating disorder-specific servicesExcluded eating disorder-specific services
AlaskaMental and behavioral health inpatient and outpatient services have no quantitative limits but explicitly exclude residential treatment.Residential mental health and substance use services are explicitly excluded from the mental health and substance use benefit, with no quantitative limits otherwise. Bariatric surgery, weight loss programs, obesity-related supplements, and nutritional counseling are explicitly not covered.
ArkansasMental and behavioral health inpatient and outpatient services benefits do not have explicit exclusions for eating disorder treatment or residential services, although the treatment plan must be pre-approved. There are no quantitative limits.Bariatric surgery and weight loss programs are explicitly not covered. Nutritional counseling is covered but explained to apply to diabetic and cleft palate.
CaliforniaBariatric surgery, if medically necessary to treat obesity, is covered under the bariatric surgery benefit with no quantitative limits and covers travel if the beneficiary lives more than 50 miles from the facility. The mental and behavioral health outpatient services benefit is noted to cover anything with a Diagnostic and Statistical Manual of Mental Disorders diagnosis, and the mental and behavioral health inpatient services benefit is explained to cover hospitalizations and intensive psychiatric treatment programs with no explicit quantitative limits.Weight loss programs are covered under the plan but are not an essential health benefit. Nutritional counseling is explicitly not covered.
FloridaNutritional formulas are covered (must be enteral, maximum of $2,500 per benefit period). The mental and behavioral health outpatient services benefit has a 20-visit limit per benefit period, and the mental and behavioral health inpatient services has a 30-day limit per benefit period.Any overnight days in a residential mental health treatment facility is excluded from the mental and behavioral health inpatient services benefit. Bariatric surgery, nutritional counseling, and weight loss programs are explicitly not covered.
LouisianaResidential treatment for mental conditions and substance use disorders is explicitly covered under the inpatient hospital services benefit with no quantitative limits. Mental and behavioral health outpatient and inpatient benefits are covered with no explicit quantitative limits. Nutritional counseling is covered ($250 dollar limit per benefit period).Bariatric surgery and weight loss programs are explicitly not covered. Nutritional or dietary drugs are excluded under the generic drugs, preferred brand, specialty, and non-preferred brand drugs benefit.
MassachusettsInpatient services are covered for 60 days per year and 24 visits per year for outpatient services, for “non-biologically based conditions” under the mental and behavioral health inpatient services benefit. Nutritional formulas are covered with no quantitative limits. Bariatric surgery is covered with no quantitative limits.Nutritional counseling is explicitly not covered.
Rhode IslandNutritional counseling is covered with no quantitative limits. Enteral nutritional formula is covered with a $2,500-per-year limit when it is the sole source of nutrition under the durable medical equipment benefit. Bariatric surgery is covered with no quantitative limits.Eating disorder residential treatment services are explicitly excluded from the mental and behavioral health inpatient (and outpatient) services benefit (no quantitative limits for these benefits otherwise). Weight loss programs are explicitly not covered.
WashingtonInpatient and outpatient services are covered with no limit or explicit exclusions under the mental and behavioral health inpatient and outpatient benefits. Nutritional counseling is covered but has a three-visit limit per lifetime (unlimited for people with diabetes).Bariatric surgery and weight loss programs are explicitly not covered.

Notes: These states were chosen to showcase the variability in essential health benefits plans state to state. This Centers for Medicare and Medicaid Services site has information about all state benchmark plans. For the above exhibit, I specifically assessed state benefits for inpatient and outpatient mental and behavioral health benefits, nutritional-type benefits (including counseling and feeding formulas), bariatric surgery, weight loss programs, and dietary supplements. Bariatric and obesity services are included to reflect services that might be related to binge eating disorders, although not explicitly noted as such in the benefit. I did not assess potentially related conditions, such as diabetes. All covered benefits and services are essential health benefits unless stated otherwise.

As Sarah Hewitt proposed in her 2012 paper in Law and Inequality, HHS could add “and treatment for eating disorders, as defined by the DSM-V” to category E of the essential health benefits mandate. It is important to note, however, that even if eating disorder treatment was explicitly included as an essential health benefit, the parameters and components of treatment would be left ambiguous. To this end, it would be useful for language to include the words “evidence based” so as to steer states and insurance companies toward equitable access to effective eating disorder treatment. Moreover, it would be sensible to provide clarifying language for residential treatment, in particular. To this end, language about access to residential eating disorder treatment should remain flexible but not violate the Institutions for Mental Diseases exclusion and the Olmstead ruling or create a loophole for institutionalization of other behavioral health care consumers.

While HHS has yet to clarify language following the ACA, a new opportunity for federal standards has arisen in the passage of the 21st Century Cures Act. Similar to the efforts with the ACA, eating disorder advocates have been focused on the rulemaking process of the 21st Century Cures Act. On May 18, 2017, a bipartisan group of US Senators wrote a letter to HHS secretary Tom Price, urging special attention to eating disorders during the drafting of federal regulations. A similar letter was sent from the US House of Representatives, signed by more than forty representatives. HHS has until December 2017 to draft regulations for the 21st Century Cures Act.

The Joint Commission Standards For Eating Disorder Treatment 

The majority of advocacy has, understandably, been focused on access to eating disorder care. However, once access is more equitable, what will be done about ensuring quality of care? The Joint Commission is the largest national accrediting agency of health care providers. Many states require the Joint Commission accreditation for providers to be licensed in the state, and payers also often require accreditation. In July 2016, the Joint Commission implemented a set of eleven new standards  for both outpatient and residential eating disorder care, specifically, with delineated elements (see Exhibit 2).

Exhibit 2: The Joint Commission’s New Eating Disorder Standards

1Assessments (CTS.02.03.11)Assessments include certain laboratory and diagnostic tests, information from other providers, fall risk assessment, and refeeding assessment. This information must be obtained to effectively treat an individual with an eating disorder.
2Plan for Care, Treatment, or Services (CTS.03.01.03)Plan for care, treatment, or services for individuals with an eating disorder require some additional information, including a specific diagnosis and a plan for sufficient nutritional rehabilitation.
3Assessing Outcomes (CTS.03.01.09)Assessing outcomes of care, which are based on data collected at admission. The data collected are determined by the organization and are in accordance with the level of care provided. These assessments help the organization to monitor itself with regard to the effectiveness of the care, treatment, or services being provided.
4Coordination of Care (CTS.04.01.01)Coordination of care addresses, for example, if the individual served is transferred to a hospital during the course of care, treatment, or services. The organization would establish and maintain communication with the hospital regarding the individual’s eating disorder. Some hospitals may not have protocols in place for treating individuals with eating disorders, and the information provided could be critical to the individual’s well-being.
5Additional Services (CTS.04.02.16)Additional services cover specific core care, treatment, or service components that are provided by the organization to individuals with eating disorders, including psychosocial, medical, nutritional, and psychiatric components. Organizations also need to be knowledgeable about evidence-based guidelines regarding treatment for eating disorders.
6Supervision (CTS.04.02.18)Supervision ensures that, as needed, staff supervise individuals served to make sure they do not engage in behavior that could be detrimental to their health. It is important that staff members---not other individuals served---perform these duties.
7Multidisciplinary Care Team(s) (CTS.04.02.29)Multidisciplinary care team(s) is employed by the organization to support and coordinate care, treatment, or services. The team consist of a core group of professionals who will provide the care, treatment, or services required by the individuals served. Having the team helps to make certain that the care, treatment, or services are coordinated among the team members.
8Discharge (CTS.06.02.03 and CTS.06.02.05)Discharge plans contain specific information, and, with the consent of the individual, are shared with aftercare providers within certain time frames. This supports efficient and effective transitions of care.
9Business Practices (LD.04.02.03)Business practices include supplying individuals and their families with certain information regarding insurance and financial assistance. Program materials should contain specific information regarding the organization’s eating disorders program. It is important for individuals and their families to be well informed about the program and what their financial commitment will be before deciding to commit to the program; it is the organization’s responsibility to supply this information.
10Performance Monitoring (PI.01.01.01)Performance monitoring is accomplished by the organization collecting data on outcomes of care, treatment, or services. By collecting and analyzing such data, the organization can determine whether it is meeting the needs of individuals served.
11Individuals’ Rights (RI.01.01.01)Individuals’ rights ensures that residential facilities have specific policies regarding the individual’s ability to leave the facility, have visitors, and access the Internet. Having such policies in place can help the organization to keep the individual safe while he or she is under the care of the organization.

Source: The Joint Commission Standards for Eating Disorder Treatment.

The Joint Commission conducts unannounced site visits a minimum of once every 39 months, with failure to perform on standards resulting in a plan for improvement or potential revocation of accreditation. To more rigorously monitor quality of eating disorder care aside from periodic site visits, the Joint Commission will next need to develop quality metrics that align with these standards. While developing and implementing metrics would be a good first step to ensuring quality of eating disorder treatment, it is not enough. The Centers for Medicare and Medicaid Services (CMS) could eventually adopt the Joint Commission measures and standards as part of a pay-for-reporting or performance program, as was done with the Joint Commission’s Hospital-Based Inpatient Psychiatric Services (HBIPS) measures within CMS’s Inpatient Psychiatric Facility Quality Reporting program. Private payers and government regulators could also adopt the efforts of the Joint Commission.

Synergy Between The 21st Century Cures Act And The Joint Commission Eating Disorder Standards

With the potential for increased coverage of eating disorder treatment through parity clarification and appropriate federal regulations (via rulemaking for the 21st Century Cures Act), there will be a burgeoning interest in quality performance from regulators, payers, and the public. However, there will also be the need to counter-incentivize plans and providers to not drop beneficiaries with risk or history of an eating disorder. Building upon these standards and potential subsequent measures would be the most efficient process to undertake for both public and private insurance providers, as well as government regulators, given the resources that have already gone into their development.

Therefore, the appropriateness of the rulemaking process at the federal level has the potential to strengthen the impact that these standards can have in every state. Moreover, appropriate adoption, enforcement, and measurement of these standards will help make sure that individuals are gaining access to high-quality, as opposed to inadequate or even harmful, care. Indeed, one might argue that it would be unethical to widen access to services for which there were not appropriate safeguards in place to monitor quality. However, just as clarifying parity in the rulemaking phase for the 21st Century Cures Act will not solve all problems in access to eating disorder care, neither will the Joint Commission standards; but both of these mechanisms of change are excellent and complementary starting points.

This is an exciting time for those who have been in the trenches trying to push forward eating disorder policies, as this hard work has been bearing fruit. Nevertheless, much work remains at provisioning accessible and high-quality eating disorder care, especially as we prepare for Senate action on the American Health Care Act. As has been covered extensively, the AHCA would have a host of negative consequences on behavioral health care. However, parity (in some form) will remain, even if destabilized by contractions in coverage. Moreover, the Joint Commission quality standards will not be impacted by the AHCA, although their immediate-term impact could be diminished. Therefore, the advancements that have been made can be built upon—but eating disorder advocates, policy makers, and researchers will have to continue to be resilient and focused during these uncertain times.

Author’s Note

I would like to thank Drs. Bryn Austin and Meredith Rosenthal of Harvard University for their review of an earlier draft and helpful feedback.