Principles of SUS and Rare Diseases
Reflections on the doctrinal and organizational principles of the SUS and their practical application for people with ataxia and other rare diseases.
Principles of the Unified Health System (SUS)
The Unified Health System (SUS), as established by the Federal Constitution of 1988 (art. 198) and regulated by the Organic Health Law (Law No. 8,080/1990), is guided by doctrinal principles and organizational principles.
Doctrinal Principles (ethical and philosophical values)
Universality
Health is a right for everyone and a duty of the State.
All people must have access to health services, without discrimination.
Equity
Recognizes that treating the unequal unequally is necessary to reduce health inequalities.
Distributes resources according to the specific needs of each population.
Completeness
Care must be complete and continuous, considering the human being as a whole.
Includes diagnosis, promotion, prevention, treatment and rehabilitation.
Organizational Principles (functioning)
Decentralization
The management of the SUS is shared between the three levels of government (Union, States and Municipalities).
It aims to bring management closer to local needs.
Regionalization and Hierarchy
Services are organized into levels of complexity (primary, medium and high complexity care).
Regionalization seeks to organize these services in a coordinated and efficient manner across the territory.
Social Participation
The population has the right to participate in the formulation and control of public health policies , through Health Councils and Health Conferences.
The image alongside shows a summary of the SUS Principles:
Principles of SUS and Rare Diseases
In the care of patients with rare diseases and people with disabilities (PWD), the principles of Brazil’s Unified Health System (SUS) should be applied with greater rigor and sensitivity, taking into account the specific needs of these populations.
Below is an overview of how each SUS principle should be adapted for these groups, highlighting key adjustments and demands:
🔷 Universality
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Adjustment: Nothing needs to change in the principle itself, but in practice the SUS must ensure real access, not just theoretical rights.
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Issue: People with rare diseases often face a lack of diagnosis, specialized centers, and clinical protocols, which violates this principle.
🔷 Equity
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Adjustment: Equity requires affirmative actions to compensate for the disadvantages faced by these patients.
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Typical patient → standard care
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Rare disease/PWD patient → differentiated care
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Typical patient → regular medication
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Rare disease patient → orphan drugs, which, due to the small number of patients, often lack commercial interest and depend on public or regulatory incentives to be developed.
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Demands: Medical transport for patients with reduced mobility
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Demands: Priority access to appointments, exams, and therapies based on the severity or progression of the condition
🔷 Comprehensive Care (Integralidade)
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Adjustment: Care for patients with rare diseases must be multidisciplinary and continuous.
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Issue: Referral through SISREG is often fragmented and sporadic, leading patients to shuttle between multiple services in different locations.
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Demands: A patient with hereditary ataxia or another rare disease needs not just a neurologist, but also physical therapy, speech therapy, psychology, social assistance, and physical rehabilitation.
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Demands: Care should cover the entire lifespan, especially in degenerative or incurable conditions.
🔷 Decentralization
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Adjustment: Better coordination among the three levels of government (federal, state, and municipal) is needed to ensure equitable access, even in remote regions.
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Issue: In many areas of Brazil, patients with rare diseases must travel hundreds of kilometers to reach specialized centers, which undermines this principle.
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Demands: Tripartite funding to ensure the regionalization of reference centers for rare diseases.
🔷 Regionalization and Hierarchization
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Adjustment: The standard hierarchical model (primary → secondary → tertiary care) must be more flexible. In many cases, access to high-complexity services must be expedited.
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Issue: Many patients with rare diseases do not benefit from initial primary care, as their symptoms are atypical and primary care professionals often lack knowledge about these conditions.
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Demands: Referral and counter-referral protocols must be faster and more agile to ensure patients reach specialized care sooner.
🔷 Social Participation
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Adjustment: People with rare diseases and disabilities must be actively included in health councils and conferences. Many local councils do not yet represent these voices adequately.
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Demands: Support for the creation of specific advocacy and representation groups
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Demands: Funding and incentives to develop leadership among those affected by rare diseases and disabilities.
Biopsychosocial Assessment
IN THEORY
Biopsychosocial assessment in the Unified Health System (SUS) is a multidisciplinary tool used specifically to assess people with disabilities, focusing on granting rights such as the Continuous Benefit Payment (BPC/LOAS), tax exemptions, or access to rehabilitation services. This assessment considers three fundamental dimensions of a person's life:
Biological Dimension: Functions and structures of the body (e.g. mobility, vision, hearing).
Psychological Dimension: Mental and emotional aspects (e.g., cognition, behavior).
Social Dimension: Participation and interaction with the environment (e.g., barriers at work, school, transportation, accessibility).
Legal Basis
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It is based on the International Classification of Functioning, Disability and Health (ICF) by the World Health Organization (WHO).
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Already provided for in Paragraph 1 of Article 2 of the Brazilian Law for the Inclusion of Persons with Disabilities (Law No. 13,146 of July 6, 2015 – also known as the Statute of Persons with Disabilities), the biopsychosocial assessment has been incorporated into the Brazilian Unified Health System (SUS) through regulations such as Decree No. 10,415/2020 and Decree No. 11,487/2023.
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It uses the Unified Biopsychosocial Assessment Instrument, which is applied by a multidisciplinary team (e.g., physician, psychologist, social worker, occupational therapist).
How is it done in practice?
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The person is assessed by two or more specialists, based on standardized criteria.
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The evaluation considers the degree of functionality and the limitations in activities and social participation, rather than solely focusing on the disease diagnosis.
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The goal is to recognize the actual impact of the person’s condition on their daily life.
What is it for?
It is used to grant access to benefits such as:
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BPC/LOAS (Continuous Cash Benefit under Social Assistance Law)
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Tax exemption (IPI/ICMS) for purchasing vehicles
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Income tax exemption due to disability
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Therapeutic planning and referral to rehabilitation services
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Eligibility assessment for public policies
IN PRACTICE
The biopsychosocial assessment within the Brazilian Unified Health System (SUS), although an important step forward in ensuring a fairer and more contextualized evaluation of disability, faces serious challenges in practice, especially for people with rare diseases such as ataxias.
What Should Happen (Ideal Operation)
The biopsychosocial assessment was designed to:
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Replace the exclusively biomedical model (based solely on clinical reports);
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Evaluate contextual barriers, real functional limitations, and level of social participation;
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Ensure equity for people with less visible or fluctuating disabilities, such as those caused by rare diseases;
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Standardize decisions in access to social benefits and public policies (such as BPC/LOAS).
Brazil is a highly unequal country with many demands and limited resources, so it is essential to recognize the complexity of implementing a program of this scope.
Main flaws and shortcomings in current adoption
1. Low implementation in municipalities
Many municipalities still do not apply the Unified Biopsychosocial Assessment Instrument, due to a lack of technical training, available professionals and technological infrastructure.
2. Lack of team training
SUS professionals are not adequately trained to evaluate rare diseases (such as ataxias, which have complex and fluctuating symptoms).
3. Invisibility of rare diseases
Many ataxias do not produce obvious clinical signs in the early stages (e.g., diplopia, fatigue, and loss of balance may be underestimated). Progressive degeneration is not properly assessed without a history and specialized reports. Patients who appear "normal" often have their functional limitations unrecognized.
4. Bureaucracy and delay
Scheduling an assessment can take months . The application of instruments is time-consuming and disconnected from local circumstances, often repetitive. There is no integration with reports from specialists at rare disease referral centers.
5. Inconsistency in criteria
Assessments conducted by different teams can produce conflicting results . People with the same condition may receive different decisions depending on the municipality.
Relevance of biopsychosocial assessment for rare diseases such as ataxias
In theory , there are many positives. For example, the model recognizes that functional impact is more important than the name of the disease. Furthermore, the assessment can benefit patients with intermittent symptoms such as fatigue, imbalance, or dysarthria.
But in practice ...
• Ataxias are little known by evaluators;
• Symptoms are not easily quantifiable by generalist scales;
• Lack of coordination with reference centers for rare diseases (according to Ordinance 199/2014);
• Many patients report denial of BPC/LOAS even with actual inability to work.
How can it be improved?
Problem: Low qualification of professionals
Specific training (Continuing Education) on rare diseases and invisible disabilities
Problem: Lack of uniformity in decisions
National oversight of assessments; use of external technical opinions, integration with reports from reference centers for rare diseases.
Problem: Lack of specific protocols for rare diseases.
Create supplementary appendices to guide the evaluation of patients with rare diseases.
Problem: Delay and bureaucracy.
Computerization of the process, respect for the maximum deadlines defined by law.
IF YOU HAVE ATAXIA OR SOME OTHER RARE DISEASE, FIND OUT ABOUT THE APPROPRIATE SOCIAL HEALTH CONTROL PROCESSES.
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Learn how to collaborate to improve Public Policies, effectively and in an organized manner.
Be a protagonist in the fight for the rights of people with ataxias and other rare diseases.
References
Below are listed the references and sources consulted to generate the content of this page.
Establishes the Working Group on the Unified Biopsychosocial Assessment of Disability within the Ministry of Human Rights and Citizenship.
Establishes the Interinstitutional Working Group on the Single Model of Biopsychosocial Assessment of Disability.
Establishes the Brazilian Law for the Inclusion of Persons with Disabilities (Statute of Persons with Disabilities).
Law No. 8,080 of September 19, 1990, is the Organic Health Law, which establishes the guidelines for the organization and operation of the Unified Health System (SUS) in Brazil. It defines the conditions for the promotion, protection, and recovery of health, the organization and operation of health services, and provides other measures related to public health.