Lady Gaga and fibromyalgia: what the SUS and health plans owe to those who live with pain

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

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

On 12 September 2017, Lady Gaga wrote on social media that the chronic illness shown in the documentary about to be released had a name: “In our documentary the #chronicillness #chronicpain I deal w/ is #Fibromyalgia”, and added that she wanted to raise awareness of the disease and bring together the people who live with it. Two days later, on the eve of the opening of Rock in Rio, she cancelled her show in Brazil. “Brazil, I am devastated”, she wrote, according to G1 of 14 September; “I have to take care of my body right now”. On 18 September, eighteen European dates of the tour were postponed, from Barcelona to Cologne, and she published an open letter, reproduced by NPR, saying that “trauma and chronic pain” kept her from leading a normal life and regretting that she had seen people suggest she was being dramatic or making up the illness to get out of the tour. The documentary Gaga: Five Foot Two premiered on Netflix on 22 September.

The account is hers and stays hers: this article asserts nothing about the artist’s doctors, treatments or clinical choices. What matters here is what the letter recorded almost in passing, the suspicion of exaggeration that follows a pain no test can show. That is the difficulty fibromyalgia poses for medicine and for law. The diagnosis is clinical, and the treatment that works does not fit in a single prescription: it depends on guided movement, education and psychological support, and only in part on medication. A system organized around procedures and drugs struggles to guarantee this care, delivered by several professions over time.

Brazil responded by statute, with guidelines for the Sistema Único de Saúde (SUS, the Brazilian public health system) since 2023, expanded in 2025, and the chronic pain act in 2026. This article examines what science knows about the condition, what international guidelines recommend, what the SUS and health plans owe, how three other countries organized the same response and what a person can demand when the care does not come.

A pain that tests do not show

Fibromyalgia is a syndrome of chronic widespread pain, usually accompanied by fatigue, unrefreshing sleep and difficulty concentrating. No blood test or imaging confirms it. The diagnosis is made by the physician, from the history and the clinical examination, using criteria that have changed considerably over three decades. The 1990 criteria of the American College of Rheumatology (ACR) depended on palpation of tender points; those of 2010 and 2011 began to measure the extent of pain and the severity of symptoms; the 2016 revision (Wolfe and colleagues, Seminars in Arthritis and Rheumatism) added a generalized pain criterion so that the syndrome would not be confused with regional pain, and removed the former recommendation on diagnostic exclusions, which the authors considered confusing. Having another disease, therefore, does not rule out the diagnosis. The self-report version, the revision states, serves research, not individual diagnosis. In Brazil, the Sociedade Brasileira de Reumatologia (the Brazilian Society of Rheumatology) published its diagnostic guidelines in 2017 (Heymann and colleagues, Revista Brasileira de Reumatologia).

The condition is common. The meta-analysis by Heidari and colleagues (Rheumatology International, 2017), covering 65 studies, estimated prevalence in the general population at 1.78%, and at 3.98% among women. The reference Brazilian study, carried out in Montes Claros, Minas Gerais, with 3,038 people drawn by household sampling and assessed by a rheumatologist, found 2.5% (Senna and colleagues, Journal of Rheumatology, 2004); among those with a rheumatic disease, 35.2% were unemployed, and the most frequent socioeconomic bracket was class D. In France, the Institut national de la santé et de la recherche médicale (Inserm, the national institute of health and medical research) estimated prevalence at 1.6% in the collective expert review it published in 2020 at the request of the Ministry of Health.

Reaching the name takes time. In a survey of 800 patients and 1,622 physicians in six European countries, Mexico and South Korea (Choy and colleagues, BMC Health Services Research, 2010), patients waited almost a year between the first symptoms and the first consultation, and after that it took on average 2.3 years and 3.7 different physicians to reach a diagnosis; 22% said they could not work because of the illness and 25% that they could not work full time. The Inserm review describes a significant “errance médicale”, the wandering from one doctor’s office to the next, and records that a share of professionals feel unequipped to deal with these patients; treatment, the document says, “is not codified” and is, most of the time, symptomatic. The doubt about whether the pain is real, which Lady Gaga pointed to in 2017, has a concrete effect: a disease with no objective marker is the one that depends most on the clinical record to exist before the medical examiner, the health plan and the judge.

Movement first, then the prescription

The guideline that steers practice in Europe is the revised recommendations of the European League Against Rheumatism (EULAR), published in 2017 in the Annals of the Rheumatic Diseases (Macfarlane and colleagues) by a multidisciplinary group from twelve countries, which assessed 107 systematic reviews and meta-analyses using the GRADE method. The central finding is simple: the only “strong for” therapeutic recommendation was exercise. Initial management should involve patient education and focus on non-pharmacological therapies. If there is no response, the following steps, all with weak recommendations, should be tailored to each person’s needs: psychological therapies for mood disorders and unhelpful coping strategies, medication for severe pain or sleep disturbance, and a multimodal rehabilitation programme for severe disability. The authors caution that the effect of most treatments is modest and that the decision should be shared with the patient.

The consequence for law is less obvious than it seems. If first-line treatment is supervised exercise, education and psychological support, the question “does the plan cover the drug?” is the least important one. The relevant question is whether there is a physiotherapist, a physical educator, a psychologist and a physician working together, close to home and for long enough. It is care that is cheap per session and expensive to organize, and it fails when each professional is a separate referral, with its own queue.

What the law requires the SUS to provide

Lei 14.705, of 25 October 2023 (the act setting care guidelines for fibromyalgia and related conditions), establishes guidelines for the care of people with Fibromyalgia Syndrome, Chronic Fatigue, Complex Regional Pain Syndrome or related diseases. Article 1 states that such a person “shall receive comprehensive care through the Sistema Único de Saúde (SUS), which shall include, at a minimum” four elements: “multidisciplinary care by a team composed of professionals in the fields of medicine, psychology, nutrition and physiotherapy” (item I), access to complementary tests (II), pharmaceutical assistance (III) and “access to recognized therapeutic modalities, including physiotherapy and physical activity” (IV). The law chose a model of care, the same one EULAR describes, and not a drug. When the municipality offers only the physician and refers the rest nowhere, part of the minimum content the law defined is missing. The limit lies in § 1: “The list of tests, medicines and therapeutic modalities referred to in this Law shall be defined in regulations”. The law guarantees access; which tests, drugs and therapies are covered depends on regulations and on the SUS protocols. Paragraph 2 adds the duty to provide information on the diseases and on preventive and therapeutic measures.

Lei 15.176, of 23 July 2025, published the following day and in force 180 days later, added three articles. Article 1-A organizes the actions into a national programme, with guidelines on multidisciplinary care, community participation, information, training of professionals, integration into the labour market and epidemiological research; art. 1-B authorizes studies for a single registry. The most publicized point, and the most misunderstood, is art. 1-C. Fibromyalgia did not “become a disability”. The text states that “the equivalence of a person affected by the diseases referred to in art. 1 of this Law to a person with disability is conditional upon a biopsychosocial assessment by a multiprofessional and interdisciplinary team”, which considers impairments in body functions and structures, socio-environmental, psychological and personal factors, limitation in the performance of activities and restriction of participation, under art. 2 of the Estatuto da Pessoa com Deficiência (Lei 13.146/2015, the Statute of Persons with Disabilities). That article defines disability as a “long-term impairment of a physical, mental, intellectual or sensory nature which, in interaction with one or more barriers, may obstruct full and effective participation in society on an equal basis with others”. The decisive word is “conditional”: the diagnosis opens the door, and the assessment of the concrete impact on that person’s life is what allows them to walk through it.

Lei 15.422, of 3 June 2026 (the chronic pain act), adds to these rules and does not replace them. Article 2 provides: “A person affected by chronic pain has the right to comprehensive care through the Sistema Único de Saúde (SUS), in the form regulated by the competent bodies, with prior information on the potential risks and adverse effects of the treatment”; art. 3 set 5 July as the National Day for Awareness and Management of Chronic Pain. Regulation, in practice, runs through the Protocolo Clínico e Diretrizes Terapêuticas (PCDT, the clinical protocol and therapeutic guidelines) for Chronic Pain, approved by Portaria SAS/MS nº 1.083, of 2 October 2012 (an order of the Ministry of Health). The order already required patients to be informed of “the potential risks and side effects” of medicines (art. 2) and directed state and municipal managers to “structure the care network, define the reference services and establish the flows for care” (art. 3). The update of the protocol was under public consultation (SCTIE/MS nº 95/2026) until 6 October 2026; the firm discussed it in the article the SUS is going to rewrite the chronic pain protocol (in Portuguese). Until the new version is published, the 2012 version applies. For people with fibromyalgia, art. 3 matters as much as the list of drugs: it makes the local manager responsible for knowing where the patient goes after the consultation.

Under a health plan: the sessions with no ceiling

The 2023, 2025 and 2026 laws address the SUS and create no new obligation for health plan operators. Under a plan, the answer comes from Lei 9.656/1998 (the Health Plans Act) and from the rol of the Agência Nacional de Saúde Suplementar (the ANS list of mandatory coverage; the ANS is the federal health plan regulator), and it is reasonably favourable precisely in the part of care that the guidelines put first. Article 12, I, “a”, of the Act and art. 18, I, of RN 465/2021 (an ANS normative resolution) guarantee, under outpatient plans, an unlimited number of medical consultations. With effect from 1 August 2022, RN 541/2022 revoked (art. 3) utilization guidelines nos. 102, 104, 105, 106, 107, 108, 136, 137 and 138, which limited consultations and sessions with psychologists, speech therapists, occupational therapists and physiotherapists; according to the ANS, care now follows the prescription of the attending physician, for any disease listed by the World Health Organization. A person with fibromyalgia who needs continuing physiotherapy and psychotherapy cannot have the sessions cut off for having reached an annual number.

There are also deadlines. RN 566/2022 sets up to ten business days for care with a psychologist and a physiotherapist and up to fourteen business days for consultations in non-basic medical specialties, such as rheumatology (art. 3); the operator must provide a protocol number (art. 12) and, if the deadline is missed, fully reimburse care obtained outside the network (art. 10). Medication is another matter: art. 10, VI, of Lei 9.656/1998 excludes from mandatory coverage the “supply of medicines for home treatment”, with the exceptions the Act itself lists. For pharmacy medicines, the door is the pharmaceutical assistance of the SUS. If the prescribed treatment is not on the rol, § 13 of art. 10 allows coverage where there is proof of efficacy based on scientific evidence and a therapeutic plan, or a recommendation by Conitec (the national committee for the incorporation of technologies into the SUS) or by an international health technology assessment body; and a refusal must be given in writing, as required by art. 14 of RN 623/2024.

Three countries, three paths

The United Kingdom treated fibromyalgia as part of a larger whole. NICE guideline NG193 on chronic pain, published on 7 April 2021, follows the 11th International Classification of Diseases and states that fibromyalgia, or chronic widespread pain, is a type of chronic primary pain. For it, the guideline directs that “a supervised group exercise programme” be offered to people aged 16 and over, that acceptance and commitment therapy or cognitive behavioural therapy be considered, that a single course of acupuncture be considered under defined conditions and, from age 18, that some antidepressants be considered after a full discussion of benefits and harms; and it lists the medicines that should not be started for this purpose. The programme is group-based, supervised and offered by the public service. It is the British equivalent of the “multidisciplinary care” of the Brazilian law, with the difference that it is written as clinical routine rather than as a right.

France chose the path of an institutional diagnosis before the rule. A parliamentary commission of inquiry on fibromyalgia published twenty proposals in October 2016; the Direction générale de la santé (the directorate-general for health) commissioned from Inserm the 2020 collective expert review, carried out by fifteen specialists ranging from algology to sociology and based on some 1,600 documents. The text records that the ministry is challenged by patient associations over diagnostic delays, the “regional inequalities in the recognition of disability by health insurance” and the variable quality of care. It is the same tension the Brazilian law sought to resolve with the biopsychosocial assessment of art. 1-C. The care pathway published by the Haute Autorité de Santé in 2022 could not be read for this article, because the portal refuses automated access.

The United States has no federal law on fibromyalgia; what it has is a rule on how to prove disability. Social Security Ruling 12-2p, in force since 25 July 2012, directs the US Social Security Administration to recognize fibromyalgia as a medically determinable impairment on the basis of the ACR criteria, and it says two things that hold for Brazil. The first: “We cannot rely upon the physician’s diagnosis alone”, that is, the diagnosis alone is not enough, and the evidence must show that the physician examined the patient and reviewed their history. The second: longitudinal records are especially useful, because the symptoms “can wax and wane”, swinging between good days and bad days. The American rule does not grant benefits on the strength of the disease’s name; it requires an assessment of what the disease does to the person over time. It is, by another route, the logic of art. 1-C.

Rights, evidence and liability

Brazil now has the three pieces that these countries kept apart: the clinical rule, in the guidelines; the obligation of the service, in Laws 14.705 and 15.422 and in the PCDT; and the functional assessment, in art. 1-C. What is usually missing is the evidence. Lei 8.080/1990 (the Organic Health Law, which structures the SUS) guarantees, in art. 7, comprehensiveness, “understood as an articulated and continuous set of actions and services”, and the right to information about one’s own health; the Estatuto dos Direitos do Paciente (the Patients’ Rights Statute), Lei 15.378/2026, added the right to timely care (art. 8), to take part in decisions on the therapeutic plan (art. 11), to “accessible, up-to-date and sufficient” information (art. 12, § 1), to a second opinion at any stage of treatment (art. 18) and to access to the medical record without giving reasons, with a copy free of charge (art. 19). In the SUS, Lei 13.460/2017 (the act on the rights of users of public services), art. 6, III, already guaranteed access to one’s own information.

The medical record is the piece that decides almost everything. The Código de Ética Médica (the Code of Medical Ethics) forbids the physician to fail to use the scientifically recognized means of diagnosis and treatment within reach (art. 32) and to fail to inform the patient of the diagnosis, prognosis, risks and objectives of treatment (art. 34). In a disease without a marker, the course recorded visit by visit, with the pain, the fatigue, the sleep, what was tried and what changed, is the Brazilian equivalent of the longitudinal records of the American rule, and it is what the biopsychosocial assessment will read.

The liability of the hospital, the clinic or the operator is strict as regards the services that are their own (Código de Defesa do Consumidor, the Consumer Protection Code, art. 14); when the problem lies in the physician’s act, proof of fault is required (art. 14, § 4). Fibromyalgia rarely gives rise to disputes over technical error in the strict sense; what appears more often is the refusal to cover sessions the ANS required to be covered, delay beyond the RN 566 deadline and, in the SUS, the absence of a pathway to physiotherapy and psychology, which Law 14.705 and Portaria 1.083 assign to the manager. In these cases, the dispute concerns compliance with an obligation of the service, not anyone’s clinical choice.

In employment and social security, the general regime applies. Fibromyalgia is not among the diseases that Lei 8.213/1991 (the social security benefits act) exempts from the qualifying period for the incapacity benefit (arts. 26, II, and 151); the first fifteen days of leave are borne by the employer (art. 60, § 3), and after that the medical examination of the INSS (the national social security institute) decides. The equivalence of art. 1-C does not replace the requirements of each benefit. And none of these rules guarantees the treatment chosen by the patient or the best on the market: they guarantee access to the recognized modalities, and partial improvement, in a chronic disease, is part of the picture, not proof of error.

Before deciding

In my view, fibromyalgia shows the limit of a right to health conceived as a list of drugs and procedures. What science recommends first is guided movement, education and psychological support, and Brazilian law, since 2023, describes exactly this team-based care. The practical step, for those who live with the pain, is to ask that the attending physician’s report describe the whole plan, with each strand of care, and that the medical record document the course over time, including functional limitations, which are what the biopsychosocial assessment measures. If the municipality does not offer physiotherapy or psychology, if the operator limited sessions that the ANS required to be covered, or if the assessment for equivalence was refused without examining the concrete limitations, contact the firm: the analysis starts from the medical report and the refusal, and does not replace clinical assessment. An overview of what can be demanded from the public system is in health care through the SUS: what a citizen can demand, and by which route (in Portuguese); on acupuncture in the public network, see acupuncture through the SUS: where to get it, how to request it and what can be demanded of the municipality (in Portuguese).

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).