Venus Williams and Sjögren’s syndrome: does the health plan cover every specialist in the care?

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

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

At the 2011 US Open, Venus Williams withdrew from the tournament less than an hour before she was due on court for the second round. In a statement, she explained the reason, which until then had no public name: “I have recently been diagnosed with Sjogren’s Syndrome”, and added that she was grateful to finally have a diagnosis, according to Al Jazeera’s report with Reuters. She was 31 and a two-time champion of that tournament. Eleven years later, in a message released by the Sjögren’s Foundation, she described the road to that point: she had been misdiagnosed many times, and the symptoms worsened to the point where she could no longer play tennis professionally.

Of her story, only what she has made public is known, and nothing is said here about the doctors who treated her. The account serves another question. Sjögren’s disease affects glands in the eyes and the mouth, but it can reach the lungs, the joints, the nerves and the blood. Each of those places has its own specialist. In Brazil, the health plan divides that same body among different contracts: the physician comes in through one door, the dentist through another, the eye drops through none. The article argues that this division, more than any lack of coverage, is what leaves the patient not knowing whom to ask for what, and that Brazilian law already has the tools to put someone in charge of the care, provided the patient knows how to ask for them.

A disease with many addresses

Even the name has changed. An international consensus convened in Rome in 2023 and published in 2025 in Nature Reviews Rheumatology (Ramos-Casals and colleagues) recommended replacing “syndrome” with “Sjögren’s disease”, because patients read “syndrome” as a vague set of symptoms; the Sjögren’s Foundation had already abandoned the term. The article uses both expressions: “syndrome” is how Venus announced the diagnosis and how the word still circulates in Brazil.

It is an autoimmune disease, more common in women and in middle age. The systematic review by Qin and colleagues (Annals of the Rheumatic Diseases, 2015), covering 21 studies, estimated a prevalence of around 61 cases per 100,000 inhabitants (43 per 100,000 when only population-based studies are considered), roughly ten women for every man, and a mean age of 56. The figures vary widely from country to country, and the authors call for larger studies.

The way the disease is recognized helps to explain why it spreads across several consulting rooms. The classification criteria of the American College of Rheumatology and the European League Against Rheumatism (Shiboski and colleagues, Arthritis & Rheumatology, 2017) add up points from five items: the anti-SSA/Ro antibody and a salivary gland biopsy with focal inflammation are worth 3 points each; abnormal ocular surface staining, a Schirmer test of 5 mm or less in 5 minutes and an unstimulated salivary flow of 0.1 ml per minute or less are worth 1 point each. With 4 points, in someone with suggestive signs or symptoms, the criteria are met, with 96% sensitivity and 95% specificity in the validation. These are criteria designed to select patients for research, not a mandatory diagnostic roadmap, but they show the geography of the problem: a blood test, a salivary gland biopsy, an eye examination and a saliva measurement, and with them several different professionals.

That dispersion has a price in time. Huang and colleagues (Healthcare, 2021) used data from Taiwan’s national insurance and followed 1,970 patients: the median between the first symptoms of dryness and the diagnosis was 115 weeks, and in that interval patients had, at the median, three outpatient visits. These are data from another system, from 2006 to 2011, and do not measure the Brazilian delay; they show that it is common even in a national insurance system, and the authors note that symptoms of dryness can be subjective and even subclinical.

And dryness is not everything. The review by Maleki-Fischbach and colleagues (Arthritis Research & Therapy, 2024) notes that the disease can have systemic manifestations, such as pulmonary and joint involvement, which weigh on the prognosis and need to be identified and treated in time, preferably with multidisciplinary assessment. There is also a risk that justifies regular follow-up: the meta-analysis by Zintzaras, Voulgarelis and Moutsopoulos (Archives of Internal Medicine, 2005), with five cohorts of primary Sjögren’s, estimated an incidence of non-Hodgkin lymphoma around 18.8 times higher than expected, against 7.4 in lupus and 3.9 in rheumatoid arthritis. The authors themselves record extreme heterogeneity among the studies, and the figure should not be read as an individual prediction; it is one of the reasons why the disease calls for someone who looks at the whole.

What the guidelines call for: a team

The European League Against Rheumatism recommendations for management (Ramos-Casals and colleagues, Annals of the Rheumatic Diseases, 2020) were written by rheumatologists, internists, oral health professionals, ophthalmologists, gynaecologists, dermatologists, epidemiologists, family physicians, nurses and patient representatives from 30 countries. The proposed sequence begins with the trio of core symptoms, dryness, fatigue and pain, and only then moves on to systemic disease. The menu runs from saliva substitutes and artificial tears to pilocarpine, hydroxychloroquine, immunosuppressants and biologics, such as rituximab; the text itself admits that the level of evidence is, for the most part, modest.

In the United Kingdom, the British Society for Rheumatology guideline (Price and colleagues, Rheumatology, 2024), with authors from rheumatology, ophthalmology, dentistry and general practice, recommends regular brushing with fluoride toothpaste, “proactive dental care” and xylitol-containing products to prevent caries, a recommendation that the guideline itself grades as strength 2 and level C evidence. The dentist, there, is part of the treatment of the disease, not a separate chapter.

In Brazil, the Sjögren’s Syndrome Committee of the Sociedade Brasileira de Reumatologia (the Brazilian Society of Rheumatology) published treatment recommendations in 2015 (Valim and colleagues, Revista Brasileira de Reumatologia), with 131 items graded on the basis of a systematic review and, where studies were lacking, of expert opinion. The stated aim was to guide management and facilitate access to treatment, taking into account the Brazilian socioeconomic context and the medicines available in the country. It is a medical society document, not a legal rule.

In the health plan: what comes in with no ceiling

For physicians, the rule is favourable. A plan with outpatient segmentation must cover “medical consultations, in unlimited number, in basic and specialized clinics recognized by the Federal Council of Medicine” (Lei 9.656/1998, the Health Plans Act, art. 12, I, “a”), and Normative Resolution (RN) 465/2021 of the ANS (the health-plan regulator) repeats the guarantee in art. 18, I. Rheumatologist, ophthalmologist, pulmonologist, neurologist: none of them can be rationed by an annual quota. The plan may argue about the network and the provider, not about how many times the patient comes back. The same logic, for sessions with a physiotherapist and a psychologist, was examined in the article on Lady Gaga and fibromyalgia.

There are also deadlines. RN 566/2022 requires that consultations in the non-basic medical specialties be guaranteed within fourteen working days (art. 3, II), laboratory tests within three (art. 3, X) and other outpatient diagnostic services within ten (art. 3, XI). If the operator fails to comply with the alternative-care rules of the resolution itself (arts. 4 to 6) and the beneficiary is forced to pay, reimbursement must be in full, within thirty days, including transport (art. 10).

The tests that identify the disease are, for the most part, in the ANS list of mandatory coverage (the “rol”). The consolidated Annex I to RN 465 (updated through RN 678/2026) lists anti-Ro/SSA and the antinuclear factor in the outpatient and hospital segmentations, and salivary gland biopsy in all segmentations, including the dental one. That biopsy has a utilization guideline, DUT 82, but the guideline deals only with the dental segmentation: there, coverage is mandatory when the lesion allows the procedure to be performed in an outpatient setting, as indicated by the treating dental surgeon. In the medical plan, the DUT adds no condition. I did not find in Annex I, under those names, the Schirmer test or the measurement of salivary flow. If the operator refuses a procedure because it is not in the list, the discussion moves to § 13 of art. 10 of Lei 9.656, which allows coverage of a prescribed treatment or procedure outside the list where there is proof of efficacy based on scientific evidence and a therapeutic plan, or a recommendation from Conitec (the national health-technology assessment committee) or from a health-technology assessment body of international renown.

What stays out: the mouth, the eye drops and the medicines taken at home

Here the honest answer is less favourable. Dental treatment is a segmentation of its own (Lei 9.656, art. 12, IV, which provides, where the plan includes dental care, for consultations, preventive procedures, restorative dentistry, endodontics and minor oral surgery). Those who have only a medical-hospital plan are not entitled, through it, to treatment of the caries that a dry mouth favours. The exception, discussed in the article on the request signed by the dentist (in Portuguese), is a procedure provided for in the medical segmentations that the dental surgeon performs or that is necessary for a dental diagnosis (RN 465, art. 4, I); in that case, the dentist’s request counts as much as the physician’s (art. 6, § 1, II). Those who have a dental plan have a deadline of their own: consultations and office procedures with a dental surgeon within seven working days (RN 566, art. 3, IX).

Lubricating eye drops, saliva substitutes and the continuous-use tablets taken at home also fall outside the minimum coverage: the law excludes the “supply of medicines for home treatment” (art. 10, VI), with exceptions, such as oral antineoplastic drugs, that do not reach these products. The contract may be more generous, and it is worth reading yours. Immunobiologics administered in a health-care setting follow another rule, that of the list: the consolidated Annex II (updated through RN 675/2026) contains guidelines for rheumatoid arthritis, vasculitis, lupus and other diseases, but none for Sjögren’s. A request for rituximab for a systemic manifestation of the disease, for example, is treatment outside the list for that indication, and goes through the same § 13. For the article dealing with rheumatology in general, see immunobiologics and JAK inhibitors denied (in Portuguese).

In the SUS (Brazil’s public health system), the logic is that of comprehensiveness, understood as the “articulated and continuous set of preventive and curative, individual and collective actions and services required for each case at all levels of complexity of the system” (Lei 8.080/1990, art. 7, II). I did not locate a Ministry of Health clinical protocol specific to Sjögren’s disease; creating or amending a protocol is the Ministry’s responsibility, advised by Conitec (Lei 8.080, art. 19-Q). Without a protocol of its own, access to each medicine depends on where it has been incorporated, and the question must be asked item by item.

Three countries, three ways of dividing up care

France: a physician with a name on paper. The French system provides, for long-term conditions, that “le médecin traitant […] établit un protocole de soins” (the treating physician draws up a care protocol), which can be revised and is defined in line with the recommendations of the Haute Autorité de Santé, listing the acts and services the treatment requires (Code de la sécurité sociale, art. L324-1). The protocol goes to the medical control service of the Caisse and, once approved, entitles the patient to 100% coverage of the Social Security tariff for the care connected with the disease; according to the official Service-Public portal, it is drawn up by the treating physician in consultation with the other physicians following the patient, who must present it to every physician consulted. The official list of 30 diseases includes vasculitis, lupus and scleroderma, but does not mention Sjögren’s; the disease may come in as an “off-list” condition if it meets the criteria: an expected course of more than six months, particularly costly treatment, with a medicine or a device, and at least two of four requirements, such as repeated tests or technical procedures. What France does is give coordination a legal holder.

United States: the mouth separated by statute, with exceptions. Medicare, the federal public insurance programme, excludes by statute expenses for “care, treatment, filling, removal, or replacement of teeth”, under 42 U.S.C. § 1395y(a)(12). In the final rule for 2023, the Centers for Medicare & Medicaid Services began to pay for dental treatment when it is “inextricably linked” to a covered medical treatment, such as before a transplant or a heart valve replacement, extended this in 2024 to head and neck cancer, and opened a process to examine other analogous situations. It is, with a different technique, the same idea as art. 4, I, of RN 465: dentistry becomes covered again when it serves a medical treatment.

England: everything in the public system, but with co-payment. In the NHS, the dentist is part of the public service, but treatment is free only for defined groups, such as those under 18, pregnant women, those who have had a baby in the last 12 months and recipients of certain benefits; everyone else pays the NHS charges, with partial help for those on low incomes. Exemption from prescription charges on grounds of illness is also a closed list, with diabetes, epilepsy under continuous treatment, myasthenia gravis and hypothyroidism, among others, and no Sjögren’s. It is the opposite path to the American one: the mouth is inside the system, but the disease opens no cost exception.

The three models converge on a point that Brazil still treats as a detail: someone needs to answer for the whole. France wrote that into law; the United States and England settled parts of the cost, not the coordination.

Who coordinates, and who is liable

Brazil has no care protocol with the force of a contract, but it has the pieces. The Estatuto dos Direitos do Paciente (Lei 15.378/2026, the Patients’ Rights Statute) guarantees access to care “in a timely manner” (art. 8), the right to ask “the name of the physician in charge of one’s care and how to contact him or her” (art. 9, § 1), the right to seek a second opinion at any stage of treatment (art. 18) and the right of access to the medical record without having to justify the request (art. 19). The Code of Medical Ethics prohibits the physician from “failing to use all available means” of diagnosis and treatment that are scientifically recognized and within his or her reach (art. 32).

In practice, coordinating means writing. The document that carries the most weight is the report from the physician of reference, usually the rheumatologist, with the diagnosis or the hypothesis, the organs affected, the referrals and the reason for each test and each medicine. It is against that report that a denial by the plan is measured. And the denial also has to be in writing: RN 623/2024 requires the operator to put the denial in writing and hand it to the beneficiary (art. 14) and prohibits generic answers such as “under review” (art. 12, § 5).

Delay in diagnosis is the other side. It is not, in itself, an error: the studies cited show that it is frequent and that the first symptoms mislead. The law asks something else, whether there were signs that, with the means available, should have led to investigation and did not. The physician’s liability depends on fault (Código de Defesa do Consumidor, the Consumer Protection Code, art. 14, § 4); that of the hospital or clinic is strict for the services it provides itself (art. 14, head provision). When the delay takes away from the patient the real possibility of a better outcome, the STJ (Superior Court of Justice) allows compensation for the lost chance, not for the final loss: in REsp 1.254.141/PR, a case of inadequate treatment of breast cancer, the Third Panel recorded that “the chance, however, can never reach the value of the thing lost”. The precedent concerns another disease, and its application depends on expert evidence as to what the delay actually changed.

Before deciding

In my view, the Brazilian problem in Sjögren’s disease is not a lack of medical coverage, which the law guarantees without a ceiling, but a lack of ownership: the plan pays for each consultation and pays no one to look at the whole, and the mouth, which the guidelines place inside the treatment, sits in a separate contract. For someone who has the disease, a dental plan is a health decision, not a luxury. It is worth asking the physician of reference for a report with the diagnosis, the organs being monitored and the tests and referrals required, and keeping a copy; asking, on the basis of the Statute, who is the physician in charge of the care; and demanding in writing any denial or limitation by the plan. If a specialist consultation, a test or a treatment requested by the treating physician has been denied or has gone past the deadline, get in touch with the firm: the analysis starts from the medical report, the contract and the denial, and does not replace clinical assessment.

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).