Abstract

The emergence of civil associations in favor of cannabis began in the 2010s. Faced with the inertia of the State, these organizations have acted in the reception, support, information, training, and facilitation of access for patients and their families to the medicine produced from marijuana, a prohibited substance in Brazil. This study aims to analyze how cannabis activism promoted by Brazilian associations is based on scientific knowledge or knowledge acquired through the experience of members. The methodology included interviews with participants from the ACuCa, Ama+me, and Apepi associations, as well as the Content Analysis of the profiles of these institutions on Instagram. It was found that cannabis activism on Instagram is similar to that practiced in person; however, activism on social media prioritizes the dissemination of knowledge through information and training of its followers, being careful to treat the content in order to suit the guidelines of the platform. In addition, the main lines of action of cannabis associations (reception and distribution of medicinal oils) appear in a veiled way in the publications, most of which occur through private conversations in the media with the associations.

Key words:
Right to health; Cannabis knowledge; Activism; Associativism; Digital social networks

Introduction

Cannabis sativa has been used for therapeutic purposes for thousands of years. Classic Chinese literature mentions that it was cultivated at around 4,000 BCE¹1 Zuardi AW. History of cannabis as a medicine: a review. Rev Bras Psiquiatr 2006; 2(28):153-157.^,22 Brand EJ, Zhao Z. Cannabis in Chinese medicine: are some traditional indications referenced in ancient literature related to cannabinoids? Front Pharmacol 2017; 8:108.. Moreover, for more than 12,000 years, this plant has been used as food, as a psychoactive drug, as a medication, and as a fiber³3 Backes M. Cannabis pharmacy: the practical guide to medical marijuana. London: Hachette UK; 2017.. Only at the turn of the 19th to the 20th century did a prohibitionist paradigm classify cannabis as an illegal drug⁴4 Fiore M. O lugar do Estado na questão das drogas: o paradigma proibicionista e as alternativas. Novos Estud CEBRAP 2012; 92:9-21.

5 Amaral BP, Torossian SD. Drogas, o que são? Por que usamos? Por que devemos repensá-las? In: Alexander BK, Merhy EE, Silveira P, organizadores. Criminalização ou acolhimento? Políticas e práticas de cuidado a pessoas que também fazem o uso de drogas. Porto Alegre: Rede UNIDA; 2018. p. 112-130.^-66 Carneiro H. Drogas - A história do proibicionismo. São Paulo: Autonomia Literária; 2019.. The prohibitionist paradigm appears with Prohibition (1920 to 1933) and the War on drugs (since 1971), expanding in the following years and becoming the basis for the dogmatic, penal, and legal structure regarding drugs, inclusively in Brazilian law⁷7 Pontarolli AL. Drogas. Crise paradigmática e alternativas ao modelo proibicionista [dissertação]. Curitiba: Centro Universitário Internacional; 2019., for example, the “Lei de Drogas” (Drug Law, in Portuguese, Law no. 11,343/2006).

The rediscovery of the therapeutic-medicinal benefits of cannabis in Brazil took place in the early 2000s, initially by mothers of children with refractory epilepsy. With no medical guidance and using cannabidiol imported clandestinely, those families developed a lay expertise⁸8 Epstein S. The construction of lay expertise: AIDS activism and the forging of credibility in the reform of clinical trials. Sci Technol Hum Values 1995; 4(20):408-437. by gathering knowledge and competences through the exchange of information and individual experiences⁹9 Oliveira MBA. Regulamentação do canabidiol no Brasil: como nasce a expertise leiga. Liinc Rev 2017; 13(1):190-204.

10 Oliveira MB. O medicamento proibido - como um derivado da maconha foi regulamentado no Brasil [dissertação]. Campinas: Universidade Estadual de Campinas; 2016.^-1111 Pereira CCQ. Sobre a participação das associações de pacientes na construção do conhecimento sobre saúde: o caso das doenças raras [tese]. São Paulo: Pontifícia Universidade Católica de São Paulo; 2015..

Brazilian cannabis activism, which has existed since the 1980’s, has been transformed by social media, which “enabled direct communication, safe and without intermediaries, between people interested in the cultivation and therapeutic use of marijuana, regardless of the prohibition”¹²12 Policarpo F. Compaixão canábica: as dimensões simbólicas e políticas no manejo da dor e do sofrimento no Brasil. Rev Ingesta 2019; 1(1):41-52. (p. 44). It is important to highlight that the demand for medicinal cannabis is associated with the principle of human dignity, since it is related to the right to health¹³13 Policarpo F, Martins L. "Dignidade", "doença" e "remédio": uma análise da construção médico-jurídica da maconha medicinal. Antropolítica 2020; 47:143-166..

Even though the interests of the patients’ mothers movement, of having democratic access to medical treatment, are not always compatible with the interests of activist movements that fight for the legalization of cannabis for hoth medicinal and recreational purposes, the combination of the two causes was enough to change public opinion and regulations on the plant and its derivatives in Brazil. This was possible because empiric experience in cultivation, by activists who propose recreational use has, to some extent, allowed the access of families to home-produced plants and extracts¹⁴14 Carvalho VM, Brito MS, Gandra M. Mães pela cannabis medicinal em um Brasil aterrorizado entre luzes e fantasmas. Fórum Sociológico 2017; 39:57-66.. Civilian associations have also been created, with the purpose of fighting in an organized manner for regulation/legalization and to provide support to patients and families. This movement has expanded in Brazil, and in 2020, there were more than 40 cannabis associations in the country¹⁵15 Surjus LTLS, Soncini F, Rodrigues E, Coqueiro L, Fegadolli C. Levantamento do perfil de Associações Canábicas no Brasil: resultados preliminares. In: Zanatto RM, organizador. Introdução ao associativismo canábico. São Paulo: Disparo Comunicação e Educação - Ibccrim - Pbpd; 2020. p. 86-101..

In face of the demands, resolutions from the Board of Directors of the National Health Surveillance Agency were enacted, as were resolutions from the Federal Medical Council. Although there has been progress in the implementation of regulations, the high costs of imported medication, even when sold in Brazilian drugstores, still makes it inaccessible to most patients. Alternative access remains, though, in the form of the service provided by cannabis associations: home cultivation and the production of oil, as an attitude of civilian disobedience¹⁶16 Motta YJP. O paciente dedo verde: uma etnografia sobre o cultivo e consumo de cannabis para fins terapêuticos na cidade do rio de janeiro [dissertação]. Niterói: Universidade Federal Fluminense; 2019.. In some cases, the demand has been met by the search for illegal marijuana provided by traffickers.

Considering these facts, our objective is to analyze how the different pro-cannabis associations share information regarding the therapeutic and medicinal uses of Cannabis spp. through Instagram, with the purpose of identifying how cannabis activism may resort to knowledge provided by science or by the experience of the associates.

Cannabis associationism in Brazil

In democratic societies, associating plays a key role¹⁷17 Tocqueville A. A democracia na América - leis e costumes de certas leis e certos costumes políticos que foram naturalmente sugeridos aos americanos por seu estado social democrático. São Paulo: Martins Fontes; 2005.. Associations provide space for the relationship between individuals and for the “capacitation for political participation and participation in decision-making processes at the economic, social, and cultural levels”¹⁸18 Cerqueira C. Associativismo, participação e comunicação: dilemas e desafios [Internet]. 2019. [acessado 2022 ago 3]. Disponível em: https://www.communitas.pt/ideia/associativismo-participacao-e-comunicacao-dilemas-e-desafios/
https://www.communitas.pt/ideia/associat... . In cannabis associationism, activism has aided in the regulation and legalization of marijuana and in reversing the stigma related to the plant and its users. The cannabis associations facilitate the bureaucratic process of relating the “disease to the treatment/cure” through legal means (lawsuits), taking on the social protection role, which is neglected by the state¹⁹19 Quadros AJ, Silva MIFC. Proibicionismo e (des)proteção social: reflexões sobre os paradoxos da relação entre estado e associações cannabicas. Soc Questao 2022; 54(4):329-350.. They offer care and information to the patients and their families, as well as facilitate access to the medication²⁰20 Costa NG. Os processos de regulamentação do uso medicinal e terapêutico da maconha no Brasil: uma análise em torno do status legal da cannabis. Rev Campo Minado 2022; 3(2):174-199..

Created in 2012, the Cultural Cannabis Association of São Paulo (ACuCa, in Portuguese) is the oldest association in Brazil and the only one aimed at cannabis culture as a whole. As far as the mobilization for medicinal use is concerned, the Brazilian Association of Medicinal Cannabis Patients (“Ama+me”, in Portuguese) was created in 2014, becoming the first support association for cannabis patients in Brazil. Since then, many new associations have been created.

Those entities have several purposes, such as working for the expansion of the rights to personal and collective cultivation; the expansion of access to information and inputs originated from cannabis; as well as the development of actions aimed at regulating the individual and collective cultivation²¹21 Zanatto RM. Associativismo canábico: passado, presente e futuro. In: Zanatto RM. organizador. Introdução ao associativismo canábico. São Paulo: Disparo Comunicação e Educação - Ibccrim - Pbpd; 2020. p. 23-42., providing to every patient the right to be “advised about how to cultivate and extract his own medication, seeking for a satisfactory therapeutic response, experimenting different varieties, and ultimately guaranteeing that one’s freedom of choice is respected, with the right to equal access”²²22 Andrade AA. Cannabis: conhecimento, atitude e prática dos médicos residentes de Saúde da Família e Comunidade do município de João Pessoa - PB acerca do uso terapêutico na prática clínica [monografia]. João Pessoa: Universidade Federal da Paraíba; 2021. (p.10).

Cannabis associations activism seeks to: (1) facilitate access to the oil; (2) provide support and care for the patient and family; (3) support research; (4) promote education through courses and events; and (5) offer information and communication¹⁵15 Surjus LTLS, Soncini F, Rodrigues E, Coqueiro L, Fegadolli C. Levantamento do perfil de Associações Canábicas no Brasil: resultados preliminares. In: Zanatto RM, organizador. Introdução ao associativismo canábico. São Paulo: Disparo Comunicação e Educação - Ibccrim - Pbpd; 2020. p. 86-101.. This list shows the lines of action without an order of importance. Therefore, the associations have the mission of seeking the democratization and universalization of access to medicinal cannabis in order to guarantee rights (home and associative cultivation), provide natural health quality, and fight the stigma related to the plant and its users.

In face of the current legislation which prohibits the cultivation of the plant in Brazil, some organizations have the right to conduct associative cultivation for medicinal and scientific purposes: Brazilian Hope Association of Cannabis Support (Abrace-PB), Association for Supporting the Research and the Patients of Cannabis (Apepi-RJ), Canapse Researchers Association (Canapse-RJ), and the Cultivate Association for Cannabis and Health (Cultive-SP). Other associations defend and practice domestic and associative cultivation as a way of “organized civilian disobedience”.

In 2021, the Federation of the therapeutic Cannabis Associations (FACT) was created, which seeks a fair and inclusive regulation regarding cannabis, linked with social security (health and social assistance), in favor of collectivity and the hypo sufficient, in partnerships with the government or with the private initiatives.

Methodology procedures

This is an experimental study with a qualitative approach, which uses content analysis as its methodological basis²³23 Bardin L. Análise de conteúdo. São Paulo: Edições 70; 2011.. To achieve this objective, the following methodological procedures were applied: The selection of the participant associations, aimed at guaranteeing diversity of approaches towards the research. The proposal was to identify a profile related to medicinal use, one related to support for scientific research and one dealing with the use among adults. In that case, the chosen associations were: “ACuCa”, the only association which is dedicated to Brazilian Cannabis culture; “Ama+me”, the first medicinal cannabis association in Brazil; and “Apepi”, which has partnerships with research institutions, such as the Universidade Estadual de Campinas (Unicamp) and the Fundação Oswaldo Cruz (Fiocruz), besides having the permission for cultivation. Each organization indicated a representative for an interview. In the end, those representatives indicated four or five associates to participate in the study.

The interviews were conducted from July to August 2020 (six at Apepi, five at Ama+me, and five at ACuCa) by video conference (WhatsApp, Zoom, or Google Meet), following the measures for the prevention and management of research activities recommended by the National Health Council with the purpose of guaranteeing integrity and providing assistance to the participants and to the research team²⁴24 Brasil. Ministério da Saúde (MS). Orientações para condução de pesquisas e atividade dos cep durante a pandemia provocada pelo coronavírus SARS-COV-2 (Covid-19) [Internet]. 2019. [acessado 2022 jul 25]. Disponível em: https://conselho.saude.gov.br/images/comissoes/conep/documentos/NORMAS-RESOLUCOES/SEI_MS_-_0014765796_-_Comunicado.pdfBenford RD, Snow DA. Framing processes and social movements: an overview and assessment. Annu. Rev Sociol 2000; 26:611-639.. The interviews followed the norms for research conducted with human beings, and had their script pre-approved by the Research Ethics Committee (CEP, in Portuguese) for studies conducted with Human Beings from the Universidade Federal de Viçosa (UFV). Moreover, all of the interviewees were informed as to the research objectives and signed a Free and Informed Consent Form before answering the survey.

In this study, the participants were identified by the letter “E” and the number of the interview, according to the Chart 1.

Simultaneously, a documental analysis was conducted on the sites of the associations, and statutes were provided for this study by the interviewed representatives. Moreover, the Brazilian laws and Resolutions on the theme were analyzed. The final procedure was to conduct a content analysis of the information made available by those associations on Instagram. That media was chosen due to its specific characteristics in terms of content dissemination, also considering the fact that it is the social network platform which is most used in the country, and the third most used in the world.

We highlight that the three participating associations signed a written agreement for collection and analysis of material. The analysis of the Instagram content focused on a time frame including the articles published between January and June 2020. In that period, 60 posts were published in the Ama+me profile, 43 in the ACuCa’s profile, and 153 in Apepi’s profile, totaling 256 posts, which make up the corpus of this study. The posts were collected with the aid of the InstagReader software on September 19, 2020, and were manually categorized.

Results and discussion

Activism by the cannabis associations on Instagram

Based on the interviews conducted with the representatives of the associations (E01, E07, and E12), we realized that the main form of contact of those associations with new and potential associates is through Instagram. This finding emphasizes the relevance of the analysis of this social media.

The analyzed profiles were @amamebrasil from Ama+me, @familiaapepi from Apepi, and @acucasp from ACuCa, which, on the day of data collection, had 7.2 thousand, 24.5 thousand, and 27.3 thousand followers, respectively. In relation to the content of the Instagram feeds, we observed that Apepi is the most productive association, with 153 posts between January and June 2020. Ama+me and ACuCa had 55 and 43 posts, respectively, during the same period.

The Instagram posts included photos, videos, and galleries (of photos, videos, or both). In all of the associations, the post “photo” predominates, comprising 76% (47) of the Ama+me posts, 75% (114) of the Apepi posts, and 63% (27) of the ACuCa posts. In relation to videos and galleries, only Apepi presented more galleries than videos, with 14% (22) videos and 11% (17) galleries. In the other associations, the number of galleries is larger than that of the videos, considering that ACuCa had 28% (12) videos and 9% (4) galleries, as compared to Ama+me, with 16% (9) videos and 7% (4) galleries.

The predominance of Instagram posts with photos may be associated with practicality. The gallery was used by the associations to publish sets of photos of events and promotional products (mugs, t-shirts, books, etc.). In Apepi’s case, the predominance of videos, as compared to galleries, is related to the “lives” from the series #maconhasessions regarding the history of cannabis. There were also videos from the association’s coordinator, Margarete Brito, related to internal issues of the association and participation in public hearings.

For the content analysis, the corpus was organized in categories: (1) Internal Mobilization (activities conducted internally, aimed at proposing actions which foster dialogue, participation, and training of the associates and followers of the platforms in the social media; (2) Activism (activities and actions practiced by the associations outside their internal reach, together with other institutions or in public or government spaces, such as the Marches for Marijuana, public hearings, and presence in media news); and (3) “Creating Bridges” (activities which establish bridges between the cannabis movement and other social movements). This last category emerges from the new social movements’ tendency to align personal and collective identities, promoting the expansion of personal identities in a context of social movements²⁵25 Ribeiro AC Homeschooling e controvérsias: da identidade à pluralidade: o drama da socialização. Praxis Educ 2020; 15: e2014775 .. The posts of the three associations’ profiles on Instagram were classified in the categories and sub-categories described, and the results of the categorization are presented in the Table 1.

Based on the data, we noticed that information, which was predominant for the three associations, was used to communicate to the followers the institutional issues related to the functioning of the association, as well as to present curiosities and knowledge about cannabis and its uses. This confirms something that the most recent literature on cannabis associations has already mentioned, that these organizations are a source of information and knowledge for society, which is also related to education and training.

Training refers to the courses, workshops, and events organized by the associations. In that aspect, only Apepi stands out. We can infer that such a phenomenon is related to the time period of the corpus, which included the first months of the COVID-19 pandemic, when the associations, following the protocols of the World Health Organization (WHO), canceled all in-person events. Apepi, however, promoted training by means of weekly “lives” and a “cultivation course series”, with tips about the plant under the hashtag #sigaasemente.

The caring, which is the main line of work of the associations, according to the representatives, takes place in a private manner (in Instagram and “Direct”). The publications which deal with the issue are exceptions: ACuCa promoted Social Action by collecting donations for an associate who had been hit by floods; and Apepi promoted a public figure, the singer Moraes Moreira.

The absence of cannabis products, which are the second most important area of work of the associations, is explained by distinctive reasons: the ACuCa does not provide these products, and for every profile, Instagram’s directives prohibit the promotion of illegal substances, in this case, marijuana. The publication by Apepi, for example, was a video offering tips on how to cultivate the plant and obtain quality oil.

The external events of the activism category stand out the most. Such events are divided into two groups: in-person (before the requirements of social isolation due to COVID-19) and virtual - or online - events (after the onset of the Pandemic). It is possible to verify that, in that case, the associations kept their commitments, with representatives participating in both kinds of events. This initiative emphasizes that, even in the face of the difficulties and precautions during the pandemic, activism continued, although in a virtual format. Finally, the Creating Bridges category demonstrated that the associations support other activism causes, promoting awareness about diseases and pathologies that are treatable with cannabis (cancer, epilepsy, fibromyalgia, Alzheimer, autism, and rare diseases). They supported other issues as well, such as the fight against racism, the LGBTQIA+ cause, and the movement against domestic violence. It is also important to highlight that ACuCa brings in more diverse themes by defending cannabis as a culture and lifestyle. Apepi and Ama+me, although using distinctive strategies, focus on information about the therapeutic purposes of the plant.

Knowledge and information on digital media

During the interviews, the participants mentioned that they found the therapeutic potential of cannabis for treating their pathologies, either on their own or through friends, family, or acquaintances. Others discovered by watching the media coverage of the cases of mothers of epileptic children. The 16 interviews conducted with representatives of the associations in the social networks demonstrate how the mediation provided by these platforms and by publications in sites and blogs has helped to spread knowledge about cannabis in Brazil since the 2010s.

According to E01 (Apepi’s representative), the associations have been crucial in both promoting knowledge and building lay expertise, since they provide constant follow-up and personalized counseling by prepared doctors. The patient groups in Facebook and WhatsApp, usually private, act as an exchange platform for the sharing of information among patients, members of the associations, or doctors. On the other hand, E01 warns of the danger of constructing narratives of victory or failure in the life experiences of the patients, since each body responds in a different way to the treatment with cannabis, as happens with all medications.

Until 2010, access to information about therapeutic uses of cannabis in media, including on the Internet, was restricted or practically non-existent. E13 (a ACuCa follower) told how he began to research about the disease. He found information on medicinal cannabis, but the information was not available to the public, since it was in closed platforms. In 2005, E07, an Ama+me representative, explained that she found out that smoking cannabis could relieve her pathology (ptosis in the vertebral column and cauda equina syndrome), when researching cannabis and pain, even though she could not find helpful information at the time. E11, mother of a patient and Ama+me associate, described that she learned about the anti-inflammatory and anti-convulsant effects of cannabis by reading scientific studies she had found on the Internet.

The general consensus is that, despite the increase in studies on the theme, there is still a need to popularize knowledge, since the majority of the published studies are not available in Portuguese, and even when they are, they are written in a scientific jargon, making them difficult to understand.

The interviews also revealed two cases of knowledge and learning. E04 (Apepi associate), father of a teenager diagnosed with autism and epilepsy, is intolerant to any kind of dairy product and can only drink rice milk. The son’s digestive disorder led the family to buy a machine which extracts milk from rice. According to E04, the machine, which was imported from Portugal, could also be used for the production of cannabis oil. The interviewee discovered this fact when he was studying about methods to become knowledgeable and to gain legal coverage to produce the oil on his own. Therefore, E04 dedicated himself to research about ways to treat his son with cannabis. Other interviewees sought information to help adjust their treatments.

Another case refers to the techniques to cultivate the plants. E09 (Ama+me associate) is a student of veterinary studies who uses oil acquired from Ama+me but enjoys cultivating and following up on the plant in all of its phases; consequently, he began cultivating cannabis on his own. According to him, he did not attend an cultivation courses with professional growers because it was “all empirical”. He used to ask questions to people in YouTube and Instagram lives. In his house, he had a 40x40 cm greenhouse, equipped with a 90 watts light and a fan.

It is noticeable that the work of the organizations, of informing and educating their associates, depends heavily on their interest in looking for knowledge. Some associates seek access to the oil and information that is more specific to their treatments, while others seek to train themselves and gain autonomy or even to become professionals in the field of medicinal cannabis. Social networks are extremely important as structures for the support and exchange of knowledge and information, however, those who are searching for specific information need to look into other sources of knowledge.

Activism and the cannabis bubble

The feeling of despair and distress in face of your own suffering, or the suffering of a child or a dear relative, has led many people to search for cannabis as a therapeutic alternative. One of the hashtags used in Apepi’s Instagram makes it clear why the plant is important: because it works.

Whenever an issue is controversial, as in the case of cannabis, it is more comfortable to deal with it within the circle of close relationships who share hopes and the anguish of searching for medication that may ease their pathologies and improve their life quality and the family’s. However, in order to legitimize the movement for society, medicinal, and therapeutic use, activists have tried to make the population aware about the benefits of the plant to health and the body, supporting their arguments with scientific and clinical studies, as well as with the experience of users and patients.

The interviews demonstrated that everyone who knew the benefits of cannabis, fought for more democratic access to it and for a more permissive legislation. Although the interviewees stated that they practice cannabis activism, they recognize that there is such a bubble. The term even appears in many publications on Instagram, especially by Apepi, reinforcing the idea and belief that those people actually feel like they belong to a closed circuit, or to a restrictive network of members.

The concept of a social bubble can also occur in both virtual and the physical spaces, and it can be defined as “an intentional, filtered selection, a triage planned in such a way that classifications and hierarchy meet exclusive and personal, if not excluding, criteria, in the name of protecting of the people”²⁶26 Rodrigues APLS, Lopes IS, Mourão VLA. "Ninguém está falando em liberação da droga": ressignificação da maconha nos programas matinais das redes Globo e Record. Res Soc Dev 2021; 10(2):e16910212344. (p. 14). The bubble creates, for those who are inside it, a fine line between protection and segmentation. E2, for instance, is an Apepi associate, who shares information about cannabis in her private Facebook and Instagram profiles, since she does not feel at ease to “live outside the bubble at this moment”. By making her profile private in the virtual social networks, E2 makes them available only to previously authorized people. In doing so, she protects herself from possible criticism, aggressive comments, or hate discourse by the prohibitionists.

In terms of cannabis support in the social network, this bubble has been useful in allowing the sharing and building of knowledge about the plant and its several uses, whether therapeutic or not. According to E05, the more the interested people seek to study and become well informed in specific sources about the theme, the more people’s points of view will be broadened, since they are searching for specialized sources on their theme of interest. Still, the majority of the interested people are those who belong to the bubble.

Since the “out of the bubble” opinions about marijuana still have a negative burden, which is prejudicial and stigmatizing, the role of activist movements is to make such information circulate both inside and outside of the bubble so that more people can become aware of the cause and can become part of the struggle, which requires a serious and respectful dialogue, based on arguments that are scientifically based, legal and social, and based on life experiences.

It is important to understand that the cannabis bubble is created by the search and exchange of information that is safe and reliable among people who live in similar situations of suffering caused by the lack of efficient conventional treatments for their own infirmities, rather than because the participants have similar opinions about a given issue. Therefore, in order to understand the reasons why the bubble was created, we need to return to the beginning of the movement for medicinal cannabis, when the first families discovered the possibility of treating children with epilepsy using a product derived from cannabis.

In the early 2010s, there was little information available, so mothers of children with severe cases of epilepsy or rare syndromes found out that they could treat their children and relieve their symptoms with cannabis oil, hence the need they had to gather knowledge by means of exchanging experiences in closed and secretive Facebook groups.

Since it is a prohibited substance in Brazil, any form of access and use of the plant was considered a crime. With the changes in the classification and regulation of the plant, which took place around 2015, the scenario began to change. The discourse by the mothers, who until then were the main reference in terms of knowledge regarding therapeutic uses of the plant (given their experience achieved by treating their children and by exchanging information with other mothers), was substituted by medical-scientific discourse which sought to explain the benefits of the plant to people’s health²⁷27 Helman CG. Culture, health and illness an introduction for health professionals. Oxford: Butterworth-Heinemann; 1994.. Thus, families joined activists, health professionals, lawyers, and cultivators, and began to create associations, with the purpose of helping other people gain access to treatment in the best possible manner.

It all started with a movement within the groups, possibly closed, in a social network, Facebook. Moreover, there was a need to keep secrecy, since importing products derived from marijuana was illegal. In other words, the cannabis bubble goes beyond all definitions of a bubble, since it does not refer to a segmentation of information by merely segregating opinions or even by the influence of an algorithm. It was all about achieving a better quality of life. Therefore, the bubbles go beyond what is common sense and the definitions given by research in communication and computing sciences, and approach what was defined by Helman²⁸28 Rodrigues APLS. Sobre conhecimentos e ativismos: associações canábicas nas redes sociais digitais [tese]. Viçosa: Universidade Federal de Viçosa; 2022. as “communities of affliction”.

In the current context in which medication allowed by the national regulatory agency (ANVISA, in Portuguese) to be imported is very expensive, most patients do not have financial resources to pay for the treatment. This issue produces another kind of suffering, which affects the emotional aspect of patients. Considering the affliction caused by the search for treatments, by the high cost and the lack of assistance by the government, the groups of patients, families, activists, and other supporters were, in the first moment, considered to be informal suffering communities, which saw the need to organize themselves in civilian associations.

According to E01, the values and beliefs inside and outside of the bubble should be related to freedom, to the right to health, to quality of life, and to the struggle against conservatism and racism. However, as E02 mentioned, within the bubble, there is no room for criticism and politics or ideology, only for evidence, given that outside the bubble, “the prejudice is absurd, very stigmatizing”. The prejudice is based on years of a massified discourse, which was negativist and racist, and associated marijuana with criminality, violence, and drug trafficking.

At times, even among people who accompany family members, which evidently improves the quality of life after the patient begins a medical cannabis treatment, divisions can still occur, as explained by E04: “Nowadays, my father and mother-in-law see it as a way of treatment and achieving benefits; however, my mother still sees it as something marginalized, as if someone smokes a marijuana cigarette and then goes on to rob a bank”. About that kind of division, E06 claimed that “in fact, those who are inside the bubble, who found a way around their problem by using cannabis [...] those who are in the bubble are the ones who need the medication and who get treatment. People outside the bubble have no clue because they are not in the context.”

Considering the elements exposed here, it is possible to notice that the interviewees recognize the existence of a bubble, and as activists, believe in the need to overcome this barrier and share information with society. However, they believe that the prejudice must be overcome with dialogue and a serious attitude. E15 reminds us that, even within the movement, there are two kinds of people: some defend interventions from the pharmaceutical industry, while some are more naturalist.

Therefore, using the term ‘bubble” was not a choice by the movement. Throughout its history, people had to organize themselves in closed groups in order to find protection while at the same time, sought information about a treatment which was prohibited. With therapeutic uses allowed by permissions granted by ANVISA, those groups of people achieved more freedom, but the need to interact inside the bubble still remains, since that is a space where the information is concentrated and which provides care, mutual support, and the exchange of experiences, which is of utmost importance in keeping the movement alive. The associations are extremely important in this process, since they are the reference to those seeking to find information and treatment.

Final considerations

This study demonstrated that cannabis associations provide services usually through an in-person format, at their head offices; however, the first contact usually takes place virtually, since the possible new associates usually find the contact through the associations’ site or profile in social media. Therefore, the site, and especially the social media perform the double function of communication and providing visibility to the organizations for Brazilian society.

The associations’ social media is important to spread information and to (in)form people about cannabis activism. Propagation of information contributes to awareness regarding the uses and benefits of the plant, and generates visibility for the organizations and for the cannabis movement as a whole. (In)formation itself is the ability to educate activists by means of sharing information and by popularizing cannabis knowledge on many levels (cultivation workshops, oil extraction courses, and courses for physicians who will prescribe the treatment).

In the present stuy, the focus was the Instagram profiles of three cannabis associations, ACuCa (SP), Ama+me (MG), and Apepi (RJ). This social media is considered by the representatives as the most used format for contact with followers. Some considerations must be made regarding the relationship between the associations and society mediated by social networks. In the first place, not every follower is an associate, since the associations are talking to a diverse public, which, however, has common interests (obtaining information about cannabis). Moreover, activism practiced by these associations in social media does not always contemplate all of the pathways taken by in-person activism.

Therefore, delicate questions, which demand more attention and dialogue (care, multidisciplinary support, appointments, etc.) even in the virtual space, take place through private consultations (“Direct”, in Instagram or in other social media, such as WhatsApp, Telegram, e-mail, and others). For this reason, during the analysis of the profiles, some lines of activism work were not even characterized.

Therefore, it can be said that by analyzing the Instagram of the associations, we basically analyzed a reflection of the organizations’ daily routine, even though it was a time reference for methodological purposes. The great differential in the current study is that it provided the opportunity to follow up on the work and behavior of such associations, even at a moment of global crisis caused by the Pandemic. We noticed that, in terms of the routine of publications in social media, each organization faced that situation in a particular manner.

Regarding the information about cannabis itself and its effects on the body, the profiles in the social networks can provide punctual and basic information. For those who wish to find out more on the theme, however, there is a need to conduct more in-depth research, in scientific articles and courses, for instance. Complementary results can be found in the author’s first thesis²⁹. For future studies, it is important to note that this area has the potential for many studies, both in terms of the work done by different associations and in terms of the other available social medias.

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