Hansen’s disease: a transmissible condition, but what is transmitted?
by Cinira Magali Fortuna
Hansen’s disease is a highly infectious and low pathogenicity transmissible disease caused by the bacterium Mycobacterium leprae. These aspects explain the fact that many people become infected, but few develop the disease. Transmission occurs by air - to contract Hansen’s disease, prolonged contact with someone who has developed the disease and who has remained untreated is necessary – together with immune predisposition to the disease (1). Hansen’s disease is therefore not easy to contract, but it persists as a major problem in Brazil, the second-largest country in the world.
The persistence of Hansen’s disease is commonly identified between people in a household network, meaning relatives and people living close to someone who is infected. This poses a challenge for health workers to identify cases at the earliest possible stage, through active searches, and to monitor these people over the years.
Another important aspect to highlight is the geographical distribution of cases, which shows the close relationship of Hansen’s disease with social inequality. Hansen’s disease has been identified as a neglected disease, especially in terms of investments in public policies, research, treatment, and education about the disease.
Beyond these classical aspects of Hansen’s disease transmission, I would like to propose the following reflection: when is Hansen’s disease transmitted and what is transmitted?
In addition to the bacteria, memories, affections and futures are transmitted.
Hansen’s disease is also transmitted by the memory of neighbors, acquaintances, grandparents, parents, brothers, sisters, daughters, sons, nephews, nieces, granddaughters, and grandchildren, who sometimes inhabit the place of the unspoken, the hindered, the silenced in family, community and professional histories. This memory is not always provoked and summoned in the care dimension. It is usual that we remain unaware, whilst listening to our patient’s stories (or to the silence that the memories are occupying) in appointments, and so we do not include in our care strategies the narratives about the experience of Hansen’s disease.
By narratives, we mean the composition of speech, writing, drawings, photographs, music or other expressions that do not have an a priori right or wrong framework. These narratives and story compositions can carry, nurture, support and transform the senses and meanings that people are weaving from their experiences. The professionals that have allowed themselves to listen have certainly already heard from the persons affected and their families about the self-isolation that has been imposed on them, about the pain of being considered contagious, about the desire to disappear, about disbelief in the transmission of the disease.
The invitation here is for us to leave the well-known place of immediately contradicting the narratives that have been enunciated and the position of professional authority which uses language to instill fear, such as "if you don't treat it, you will have sequelae".
On the ‘contagion of affections’, we consider these a production between bodies, in meetings that generate power, vitality, but which can also diminish power. The body here is understood as in Peixoto Junior (2009, p. 374), based on the Spinozoan and Deleuzean approach: "Bodies are forces that are defined not only by their encounters and shocks at random, but by relationships". What kind of relationships are we creating and what affections are being ‘transmitted’ when health workers and people with Hansen’s disease meet? These can be affections that elevate the potency of life, these can be affections of vivacity and vital intensity. They can also be encounters that steal power, that produce bodies lowered and reduced to a condition: the condition of a sick person.
The lessons that we could take from the idea of the transmission of affection in Hansen’s disease is that the categorical definition of ‘person with Hansen’s disease’ can subsume all the complexity of life and of the affections that are waiting to ‘become’ in our encounters. In general, we operate with the notion of the generic human body which the Hansen’s disease bacteria will inhabit and destroy, the transmission will be of the bacteria, the judgements and discomforts that come along with it. These encounters are sad, they take away the potency and generate a lack of vitality.
About the transmission of futures, the openings we have are the fact that the possibilities of futures that we can experience are countless, but we try to capture them as a binary: either the patient infected by the bacteria is treated and ‘cured’ (if he/she follows what is prescribed); or the patient’s future is one of loss, pain, isolation, and incapacity. The proposal we make is the possibility of opening and transmitting non-predetermined futures. Futures that are conjugated in multiplicity using the term ‘and’ instead of ‘or’, that allow there to be multiple possibilities for health workers, people with Hansen’s disease and the human networks that produce memories, affections and futures.
BRASIL. Ministério da Saúde. Secretaria de vigilância em Saúde: Guia prático sobre hanseníase. Brasília/DF, 2017 Disponível Em: <http://portalarquivos2.saude.gov.br/images/pdf/2017/novembro/22/Guia-Pratico-de-Hanseniase-WEB.pdf>. Acesso em: 22 de out. 2020.
BOIGNY, R. N. et al. Persistência da hanseníase em redes de convívio domiciliar: sobreposição de casos e vulnerabilidade em regiões endêmicas no Brasil. Cad. de Saúde Pública [online]. v. 35, n. 2, 2019. DOI: https://doi.org/10.1590/0102-311X00105318. Acesso em: 22 de out. 2020.
GOUVÊA, A. R. et al. Interrupção e abandono no tratamento da hanseníase. Rev. Curitiba, v. 3, n. 4, p. 10591-10603, 2020. Disponível em: <https://www.brazilianjournals.com/index.php/BJHR/article/view/15141>. Acesso em: 22 de out. 2020.
PEIXOTO JUNIOR, C. A. Permanecendo no próprio ser: a potência de corpos e afetos em Espinosa. Fractal, Rev. Psicol., v. 21, n. 2, p. 371-385, 2009. DOI: https://doi.org/10.1590/S1984-02922009000200012. Acesso em: 22 out. 2020.