In Brazil, the fact that a cancer patient has rights guaranteed by law does not mean that they will be able to access them at the right time, following clear and effective guidelines. On the contrary, the person seeking treatment will need to face battles to benefit from, such as ensuring access to the medical report (fundamental for granting benefits), medical records, exam reports and a multidisciplinary team, among others.
This is the portrait of Brazilian reality, according to the research “Rights conquered but not guaranteed: what patients have to say about it”, produced by the Oncoguia Institute and released this week, during the 16th edition of The event was held on World Health Day (April 7) and World Cancer Day (April 8).
The data obtained is overwhelming: 70% of those interviewed stated that they did not have access to any of the rights mentioned above during treatment, and 82% of those who tried to seek some of these rights reported that this has been a constant struggle. Another 68% said they were unaware of the most important laws for cancer patients.
The survey was carried out between August 2025 and January 2026, using an online questionnaire on Google Forms. 1,618 responses were received from cancer patients and family members, from 25 of the 27 federation units, with 1,559 considered valid.
Among the respondents, 80% were patients and 20% were family members. Regarding the type of care, 45.7% were in the SUS, 43.2% in health plans, 8.9% in a mixed model and 2.2% in private care.
Structural failures
This national portrait gives the dimension of the problem. This is not a difficulty restricted to one service, one city or one assistance model. The feeling of constant struggle permeates the oncology journey in a broad way: it was reported by 82% of those who tried to seek their rights, a percentage that rises to 85% among patients undergoing treatment through the SUS and remains at 79% among those with health insurance.
At the beginning of this journey, one of the first obstacles is lack of knowledge. The lack of information remains at the heart of the problem: 68% said they did not know fundamental laws, such as the , the , the , as well as standards related to oral chemotherapy and the list of the ANS (National Health Agency).
A right that is not known cannot be exercised. And, in cancer, lost time weighs heavily: it translates into delays, denials, comings and goings, emotional exhaustion and, often, clinical worsening.
In the question about the existence of rights in the doctor-patient relationship, 49% said they did not know that they exist, 24% said they had heard about them, but did not know them well, and only 27% responded that they knew about them.
The distance between the law and real life appears harshly in the daily lives of patients and their families. Only 14% reported having access to the medical report to grant benefits, 11% to medical records and exam reports, 6% to clarified information about treatment and 4% to a multidisciplinary team.
No respondent stated that they had access to the calls — documents in which the patient records, in advance, how they wish to be cared for in situations in which they can no longer decide for themselves. It is a central instrument of autonomy, which guarantees respect for the patient’s choices and truly person-centered care.
The survey showed that half of respondents said they had received sufficient information and support to fully understand the treatment. Still, of this group, 38% stated that, despite receiving information, they still had doubts. Another 12% said they never had information or had the opportunity to clarify it with the team.
The logic of difficulties
The most sought after rights, according to the research, are precisely those that help preserve part of the income and alleviate the increase in expenses associated with illness. Among 63% of respondents who tried to access their rights in practice, 45% sought, while 30% resorted to tax exemptions.
The right to transportation was sought by 9% of participants, while rights directly linked to treatment were sought by 5% of respondents. The data clearly demonstrates that cancer does not just affect health. It compromises the ability to work, increases expenses, requires frequent travel and puts pressure on the household’s financial routine.
Along this path, the main barrier is , highlighted by 42% of respondents. Next comes the lack of clear information, with 36%; lack of knowledge of their own rights, with 34%; the delay in the final response, with 29%; and the lack of help from a professional, with 22%
There is also a lack of energy to chase, with 20%; the lack of money to pay a lawyer, with 14%; denial of health insurance, with 10%; the fear of losing your job, with 7%; and the lack of time to chase, with 6%. In the open responses, difficulties also arise with INSS examinations, the use of digital channels and the cost, in addition to fatigue, of traveling to file requests or carry out examinations in other cities.
According to a survey by the Oncoguia Institute, the way patients access information about their rights helps explain the disorganization of the journey. Without clear and integrated institutional guidance from the beginning of treatment, scattered, informal or insufficient sources prevail, making timely access to what is already guaranteed difficult.
The main sources of information about rights are Google, the internet and social networks, cited by 31% of respondents. Next are those who say they were never informed or did not know anything, with 21%. ; social worker, with 12%; another patient or conversations in waiting rooms, with 11%; and the oncologist or doctor directly, with only 9%.
What these data show is a disorganized journey, in which the patient discovers their rights in a fragmented way, in conversations in the hallway, in the waiting room, on the internet.
Recommendations for those facing cancer
The consequences of this set of difficulties are profound: valuable time, energy and resources are lost. It is not uncommon for rights to stop being accessed and exercised because the patient simply cannot handle everything at the same time.
Furthermore, instead of providing support, the system often demands repeated proof of an already evident condition. And the treatment, which should reduce suffering, ends up imposing yet another battle, parallel to the fight for life.
To change this reality, patients themselves point out very objective paths: 72% ask for less bureaucracy; 70% want simple and clear information; 65% demand more agility in processes; 54% talk about the importance of having the support of a professional, such as a social worker and lawyer; and 50% mention the need for more knowledge from health professionals themselves about patient rights.
“This text was originally published by , on April 7, 2026. The content is free for republication, citing the source, it was adapted to the standard of Poder360.”
