Gaten Matarazzo and cleidocranial dysplasia: who pays for the treatment that starts at the tooth and ends in the hospital

By Ramon Martins Andrade, attorney (OAB/RJ 188.374)

English translation of an article first published in Portuguese: read the original.

On 29 January 2020, Gaten Matarazzo, Dustin in Stranger Things, wrote on Instagram: “Surgery number 4! This is a big one!”. It was his fourth surgery related to cleidocranial dysplasia, the genetic condition he was born with, and the same post invited his followers to learn about CCD Smiles, the American organization devoted to the disease. NBC News reported the next day that the actor, then 17, gave no details of the operation, and recalled what he had said in 2018 on the program The Doctors: he was born without collarbones, has more teeth than usual, which do not come in as they should, and lost roles early in his career because of his teeth and his speech. “That’s one of the biggest reasons why I haven’t been getting roles”, he said. In the testimony published by CCD Smiles, he describes his own condition as “a very mild case” and explains why he talks about it: “many people are not as fortunate as I am”.

The account is his and it ends there: nothing is known, nor asserted here, about the professionals, the services or the clinical choices along that path. What carries over to Brazilian families is the question the diagnosis raises: who coordinates a treatment that begins in the mouth, requires general anesthesia more than once and crosses the border between the dental plan and the medical-hospital plan, and who pays for each stage.

A rare bone disease that shows up first in the teeth

Cleidocranial dysplasia is a disorder of bone development with autosomal dominant inheritance: a single altered copy of the gene is enough for it to manifest. The gene is RUNX2 (formerly called CBFA1), which governs the differentiation of bone-forming cells; Mundlos (Journal of Medical Genetics, 1999) showed that the loss of one of the two copies is enough to produce the condition. The reference review, published in GeneReviews (Machol, Mendoza-Londono and Lee, updated on 13 April 2023), records that sequencing of RUNX2 finds the alteration in 70% to 80% of affected people, deletion testing in a further 15%, and that the proportion of new cases, with no family history, is high.

Its frequency is usually estimated at one case per million people, a figure that appears in MedlinePlus and in the dental literature (Impellizzeri and colleagues, International Journal of Dentistry, 2018). GeneReviews, however, cites a population survey in Utah that found 0.12 cases per 10,000 inhabitants, more than ten times that estimate, which supports the reading that many mild cases are never diagnosed. It is a rare disease on either count.

The classic signs are underdeveloped or absent collarbones, late closure of the skull sutures and moderately short stature. But it is in the mouth that the condition weighs most. According to GeneReviews, up to 94% of affected people have dental abnormalities: baby teeth that are not shed, permanent teeth that do not erupt and supernumerary tooth germs, present in 70%. Richardson and Deussen (International Journal of Paediatric Dentistry, 1994), following thirteen patients for six years on average, counted 63 extra teeth and found more than half of the teeth of each type, except the lower incisors, unerupted at the expected age. The same GeneReviews review records conductive hearing loss in 39% of people and an increased risk of recurrent sinus and ear infections, and recommends dental follow-up every six months from the age of three.

Hence the practical consequence that organizes everything else: cleidocranial dysplasia is a genetic disease of the skeleton, with medical care of its own (hearing, bone, spine, genetic counseling), whose most costly and protracted manifestation is dental.

How dentistry learned to treat it: four schools and a 2026 consensus

In the past, the main answer was prosthetic: remove what did not erupt and replace it. In 1997, Becker, Lustmann and Shteyer (American Journal of Orthodontics and Dentofacial Orthopedics) observed that few practitioners had treated enough cases to propose guidelines. The literature now organizes treatment into four surgical-orthodontic approaches, known by their centers of origin and described side by side by Impellizzeri and colleagues (2018) and by Zhu and colleagues (Orphanet Journal of Rare Diseases, 2018). The Toronto-Melbourne approach performs serial extractions from the age of five or six, in several surgeries under general anesthesia, so that the permanent teeth erupt on their own; one of the pioneering works combining surgery and orthodontics in children with the disease is that of Hall and Hyland (International Journal of Oral Surgery, 1978). The Belfast-Hamburg approach concentrates everything in a single surgery under general anesthesia: it removes all baby and supernumerary teeth, exposes the impacted permanent teeth and draws them into place with an orthodontic appliance. The Jerusalem approach uses two interventions, guided by dental age, first in the front of the mouth and then at the back. The Bronx approach adds a temporary prosthesis during the long treatment.

In August 2026, the Journal of Bone and Mineral Research published the first comprehensive consensus on the disease (Hoover-Fong and colleagues): thirteen experts, in a three-round Delphi panel, arrived at 37 recommendations, 7 of them dental. Three are of direct interest to anyone who will argue about coverage. First, a “wait and see” stance is contraindicated, because these children’s dental age is usually delayed by about three years and lost time makes treatment more expensive and more complicated. Second, the phased Jerusalem approach was identified as the least intensive orthodontic plan and was recommended by 100% of the experts who responded (10 of 10). Third, the condition requires “coordinated, multidisciplinary” care, from dentists and orthodontists to oral and maxillofacial surgeons, geneticists, ear, nose and throat specialists and orthopedists. For adults not treated in childhood, Zhu’s review (2018) shows that combined surgery and orthodontics can still achieve a nearly complete dentition, at greater cost and over a longer time.

The legal point is hidden in the technique: whatever the school, treatment involves surgery under general anesthesia, repeated over years, in a child or adolescent. That is where the dental plan and the medical plan tend to point at each other.

Under a health plan: function decides, and general anesthesia changes the door

The first possible refusal is on aesthetic grounds. Lei 9.656/1998 (the Health Plans Act) allows the plano-referência (the reference plan, the statutory minimum package) to exclude “clinical or surgical procedures for aesthetic purposes, as well as orthoses and prostheses for the same purpose” (art. 10, II). Resolução Normativa ANS 465/2021 (the regulation of the ANS, the national health plan regulator, that contains the Rol, the ANS list of mandatory coverage) repeats the exclusion and defines it: aesthetic procedures are those “that do not aim at the partial or total restoration of the function of an organ or part of the human body injured by disease, trauma or congenital anomaly” (art. 17, sole paragraph, II). The rule does not separate the mouth from the body; it separates function from appearance, and it expressly places congenital anomaly on the side of function, which is where a condition that prevents the teeth from erupting and impairs chewing and speech belongs. I therefore maintain that a refusal on “aesthetic” grounds, in the face of documented cleidocranial dysplasia, stands only if the operator (the health plan company) explains why that procedure does not restore function; a refusal that ignores the functional report invokes a rule that says the opposite. The same border between treating and beautifying lies at the center of the debate on orthognathic surgery (in Portuguese).

The second question is one of segmentation (the coverage segments the contract includes), and here general anesthesia is the dividing line. Among the minimum requirements of the dental plan, the law lists “minor oral surgeries, considered as such those performed in an outpatient setting and without general anesthesia” (art. 12, IV, “c”). The provision on hospital admission (art. 12, II) does not mention dental procedures; RN 465 closes the gap. Oral and maxillofacial procedures that require admission “are not covered by dental plans, but have mandatory coverage in the hospital segment plan and the reference plan” (art. 22, § 1, and art. 19, VIII). And when a procedure that could be done on an outpatient basis needs a hospital because of clinical necessity (imperativo clínico), for example when several extractions and exposures have to be performed at once under general anesthesia, the hospital plan covers the hospital facilities, the team, tests, medication and anesthesia (art. 19, IX), while the dental surgeon’s fees and the dental materials fall to the dental plan, if there is one (art. 19, § 1, II, and art. 22, § 2). The need for hospital support is justified by the attending dental surgeon or physician (art. 19, § 1, I).

Two rules complete the picture. The request may be made by the dental surgeon when the procedure is linked to dental care (art. 6, § 1, II), a topic covered in detail in the article on the request for a test or hospital admission made by the dentist (in Portuguese). And in elective procedures performed jointly by a physician and a dental surgeon, “clinical responsibility for the patient lies with the professional who indicated the procedure” (art. 6, § 2). If the procedure is not on the Rol, Lei 14.454/2022 added to Lei 9.656 § 13 of art. 10, which requires coverage of treatment prescribed by an “attending physician or dentist” when there is proof of efficacy based on scientific evidence and a therapeutic plan, or a recommendation from Conitec (the national health technology assessment commission) or from an international health technology assessment body. The Supremo Tribunal Federal (STF, the Federal Supreme Court), in ADI 7.265 (decided on 18 September 2025), made that coverage subject to cumulative criteria, among them the absence of an adequate therapeutic alternative on the Rol and scientific proof of efficacy and safety; this is where the 2026 consensus and the team’s written plan gain evidentiary weight.

In the SUS: two policies that do not yet talk to each other

Since Lei 14.572/2023, oral health has been expressly within the scope of the SUS (the Brazilian public health system). The law established the Política Nacional de Saúde Bucal (the National Oral Health Policy), with “universal, equitable and continuous” access (art. 2, III), required its actions to form part of “all health care networks, at the various levels of complexity” (art. 3, sole paragraph) and added to Lei 8.080/1990 (the Organic Health Law that structures the SUS) a definition of oral health as “the articulated set of actions, at all levels of complexity, aimed at guaranteeing promotion, prevention, recovery and dental rehabilitation” (art. 6, § 4). The route is described by the Ministry of Health itself on the Brasil Sorridente page: the entry point is the oral health team at the primary care unit; more complex procedures go to the Centros de Especialidades Odontológicas (CEO, the dental specialty centers), which offer, among other services, oral surgery and care for patients with special needs; and, “if the need is not met in specialized care, to Hospitals”.

The other half of care lies in the Política Nacional de Atenção Integral às Pessoas com Doenças Raras (the National Policy for Comprehensive Care of People with Rare Diseases), established by Portaria GM/MS 199/2014 (an ordinance of the Ministry of Health), which considers rare a disease that affects up to 65 people in every 100,000, classifies those of genetic origin in a separate axis and assigns to the specialized services the genetic counseling of affected people and their families (art. 16, II). How that network operates is explained in the article on rare disease in the SUS (in Portuguese). The point that matters here: the minimum team the ordinance requires of the Reference Service for Rare Diseases (art. 19, I) includes a geneticist, a neurologist, a pediatrician, a psychologist and a social worker, among others, but not a dental surgeon, and the main text of the ordinance does not mention oral health. For a disease whose longest treatment is dental, the rare disease policy and the oral health policy run in parallel, and what links them, in practice, is the family, referrals in hand.

The disconnect also shows among professionals: in a survey of Brazilian specialists in stomatology and oral pathology (Trezena and colleagues, Frontiers in Oral Health, 2025), 79.3% of respondents reported barriers to integration between medical genetics and their own field, although the sample was small (58 responses from 273 specialists invited). The law guarantees coordination, not the nearest CEO’s experience with the disease. The useful request to the health department is concrete: which stage, which service should carry it out, and since when the family has been waiting.

Three countries, three borders between the tooth and the body

In the United Kingdom, the NHS charges adults for dental treatment in three price bands (£27.90, £76.60 and £332.10, in the table the NHS publishes for England), but treatment is free for those under 18 and for those treated in an NHS hospital by a hospital dentist, except for payment for dentures or bridges. Orthodontic treatment is free for children and adolescents when a standardized assessment shows clinical need, and the NHS itself explains that eligibility depends on how the teeth affect daily life, for example eating or cleaning; adults, as a rule, pay. The British border is age and setting: the child is covered, and so is hospital surgery.

In Germany, the Social Code (SGB V) adopts an explicit functional criterion. Orthodontic treatment is owed in the indication groups in which the position of the teeth or jaws significantly impairs “Kauen, Beißen, Sprechen oder Atmen”, chewing, biting, speaking or breathing (§ 29, 1), with a 20% co-payment refunded to the insured person when treatment is completed (§ 29, 2 and 3). For those who start after the age of 18, orthodontics is excluded, except for “schweren Kieferanomalien” (severe jaw anomalies) that require combined surgical and orthodontic treatment (§ 28, 2); implants are also excluded, save for rare and serious exceptions defined by the federal joint committee (G-BA), in which case they are provided “im Rahmen einer medizinischen Gesamtbehandlung”, as part of an overall medical treatment. This is the wording closest to RN 465: function, not the professional’s specialty, decides.

In the United States, the border is contractual. Under the Affordable Care Act, dental care is an essential benefit for children, but it “isn’t an essential health benefit for adults”, according to the official HealthCare.gov portal; under Medicaid, adult dental coverage depends on each state. For congenital anomalies, Congress has been debating the Ensuring Lasting Smiles Act for more than one session. The version debated in the House on 4 April 2022 (H.R. 1916) required plans to cover treatment of congenital anomalies, including “dental, orthodontic, or prosthodontic” support until the treatment is complete, and excluded cosmetic surgery that reshapes normal structures. In the debate recorded in the Congressional Record, the sponsor cited an official estimate of a premium increase of less than 0.1%; an opponent objected that “not one person can articulate which medical procedures or treatments would be required to be covered”. The bill was reintroduced in the Senate on 8 May 2025 (S. 1677) by thirteen senators from both parties. The comparison is instructive: the criterion that the Americans are trying to write into a federal statute, with congenital anomaly named and aesthetics defined by exclusion, is already in an ANS regulation in Brazil.

Liability: what can be required of those who treat

In a treatment that may last more than a decade (in Zhu’s review, completed cases took from 2 to 13 years) and passes through many hands, the first obligation is to inform. The Código de Ética Odontológica (the Dental Code of Ethics, Resolution CFO-118/2012) treats as an infraction “failing to adequately explain the purposes, risks, costs and alternatives of treatment” (art. 11, IV) and starting a procedure without the prior consent of the patient or their legal guardian, except in an emergency (art. 11, X). The Estatuto dos Direitos do Paciente (the Patients’ Rights Statute), Lei 15.378/2026, guarantees “accessible, up-to-date and sufficient” information in order to decide (art. 12, § 1), participation in the decision on the therapeutic plan (art. 11), a second opinion “at any stage of treatment” (art. 18) and access to the medical record (art. 19). When the schools diverge on the number of surgeries and the timing of each, that choice is precisely what has to be explained and recorded.

The second layer is conduct. The Superior Tribunal de Justiça (STJ, the Superior Court of Justice) applies to dental clinics the regime it applies to hospitals: the clinic is strictly liable for its own services (Código de Defesa do Consumidor, the Consumer Protection Code, art. 14), and the professional, as the headnote of REsp 2.067.675/RS states (Third Panel, Justice Nancy Andrighi reporting, decided on 5 March 2024), “provides health services directly to the patient and is liable on a fault basis for any damage caused” (art. 14, § 4). Fault is measured against the standard prevailing at the time of each act. The 2026 consensus, by declaring passive waiting contraindicated, becomes a benchmark for the future; for earlier conduct, the yardstick is the literature then available, which since the late 1970s had already described active treatment.

The third layer is damage. When avoidable delay deprives a person of a serious possibility of a better outcome, the STJ allows compensation for loss of a chance; the leading precedent is REsp 1.254.141/PR (Third Panel, Justice Nancy Andrighi reporting, decided on 4 December 2012), a case of inadequate breast cancer treatment, whose headnote sets the limit that applies to every case: “The chance, however, can never reach the value of the good that was lost”.

When there is no right to claim

The plan is not obliged to cover a procedure that has no support in the Rol, or in the § 13 criteria, within the contracted segment, nor to pay, through the medical plan, the dental fees of a procedure moved to hospital by clinical necessity. Prolonged orthodontics, prostheses and implants follow the dental contract, as the article on the crown that is covered and the implant that is not (in Portuguese) shows. In the SUS, the principle of comprehensive care (integralidade) does not give a right to choose the professional or the hospital. And progress slower than the family expected, in a treatment that depends on growth, is not in itself anyone’s error.

Before deciding

In my view, the most common error in these cases is not legal but one of framing: the family gets a “that is dental” from the medical plan and a “that is for the hospital” from the dental plan, and the stage is left without an owner. RN 465 resolves most of this: treatment that restores function impaired by a congenital anomaly is not aesthetics; oral and maxillofacial surgery requiring admission belongs to the hospital plan; dental fees and materials in a hospital procedure required by clinical necessity belong to the dental plan. In the SUS, the useful question is which service in the network should have performed the stalled stage. The documents that decide are the written treatment plan, with the sequence of surgeries, the indication for general anesthesia and the functional objective of each one, the contract and the refusals with their stated reasons. The guide on dental error (in Portuguese) brings together what applies to the treatment itself. When the refusal of a stage arrives in writing, or the request is stalled in the regulação (the SUS referral queue), get in touch with the firm, bringing the treatment plan and the reply received.

About the author

Ramon Martins Andrade (OAB/RJ 188.374) is a lawyer who graduated from UFRJ in 2011, with master’s degrees from Université Sorbonne Nouvelle and from the Naval War College (EGN, Brazilian Navy). He is currently a researcher in Human Rights and Health at ENSP/Fiocruz.

This content is for information and education only. It does not constitute legal advice, advertising of results or any guarantee of outcome, under Rule 205/2021 of the Brazilian Bar Association (OAB).