Cell Therapy in Brazil: The Paradoxes of Hope. Angela Vasconi Speroni. Rachel Aisengart Menezes

Transcription

1 Cell Therapy in Brazil: The Paradoxes of Hope Angela Vasconi Speroni (Doctoral candidate at the Institute of Public Health Studies, Federal University of Rio de Janeiro, Brazil) Rachel Aisengart Menezes (Professor at the Institute of Public Health Studies, Federal University of Rio de Janeiro, Brazil) Abstract This paper aims to present ways in which hope is mobilized by different social actors in the field of cell therapy in Brazil. The protagonism of stem cells is based on the promise to be a regenerative technology capable of overcoming the challenges of disease and death. With a new health market on the horizon, mass media prove to be an important disseminating agent of the Medicine that works miracles, with repercussions among patients and families in search of new therapeutic resources. On the other hand, national researchers and regulatory agencies cautiously affirm the controversies surrounding the cells of hope and highlight the translational challenge of transferring basic research to clinical applications on patients. Based on an investigation of the Brazilian stem cell research panorama, this study presents an anthropological reflection on the different social mobilization strategies which embody hope, in three main configurations: the movement known as stem cell tourism, the movement of patients across intercontinental borders in search of experimental treatments; the increasing judicialization for the access to clinical trials and new therapeutic resources; and the progressive increase of umbilical cord blood storage in public and private banks for the purpose of stem cell therapies. The central proposal consists in revealing discourses that sustain the formation of new sensibilities and moralities, based on an analytical perspective that considers the cells of hope as metaphors for a new biopolitical arena and broader cosmological horizon, founded on the ideals of autonomy and empowerment, the rhetoric of caring for oneself and the progress of science and humankind. The reflections spring from five sources: survey of scientific articles on the theme; compilation of news transmitted by media; mapping of national and international

2 2 Cell Therapy in Brazil: The Paradoxes of Hope sites; observation of scientific events in the field; and interviews with researchers in Brazil. Key Words: Cell Therapy, Stem Cells, Hope, Anthropology of Health ***** Cell Therapy in Brazil: The Paradoxes of Hope 1 Cell therapy emerges as the great biomedical revolution of the 21st century. After the genetics boom, the scientific community changed its focus to stem cell research. In the context of a medicine which aims to be personalized, these cells draw their protagonism from the promises to be a regenerative technology, capable of overcoming the challenges of disease and death, through a potentially unlimited source of tissues for transplants. Due to ethical and legal debates surrounding the use of embryonic stem cells 2, since the 1980s the blood from the newborn s umbilical cord and placenta has become an alternative source of these cells. The first umbilical cord storage banks emerged in Brazil in 2001, in the wake of an international movement begun in the 1990s in the United States. In Brazil there are two types of banks: the public banks that form the BrasilCord Network and the private banks, which store stem cells from umbilical cord blood for the use of the donor or his family members. The cells stored in public banks come from donations and may be used by any compatible person, the donor himself or his family members, if they are still available. Currently more than fifty countries possess this kind of banks and the demand is progressively increasing around the world. According to information from an American nonprofit organization, the Parent s Guide to Cord Blood Foundation 3, in 2014, there are 158 public banks, located in 36 countries, and 176 private banks, located in 51 countries and with a market extending to another 37 countries. On the whole, more than 646 thousand units are stored in public banks and more than 3 million 66 thousand in private banks. More recently emerged in Brazil a new type of private bank: for the storage of calf`s teeth, also for purposes of stem cell research and therapy.

3 Angela Vasconi Speroni & Rachel Aisengart Menezes 3 In this setting, mass media plays a central role disseminating the promises of the medicine that works miracles (Neiva, 2006) with reference to stem cell treatments. In 2004, the cover of an important Brazilian magazine revealed the babies that are the pioneers of a revolution in medicine, that had their umbilical cord blood stored for stem cell therapy a therapy that is already (at that time) being used to treat diseases like diabetes, heart attack, alzheimer, parkinson, multiple sclerosis (Buchalla, Pastore, 2004). Faced with an avalanche of information, new forms of biopolitical activism have been developed, focused on the exploitation of scientific knowledge by patients and their families, in a movement that Nikolas Rose (2013) calls the somatic expertise. The appropriation of biomedical knowledge increases the individual possibilities of managing themselves, actively shaping the course of his life from acts of choice, imbued with hope. Currently is possible to verify an extensive increasing judicialization for the access to clinical trials and new therapeutic resources. In Brazil, a group of patients with amyotrophic lateral sclerosis 4 produced a public petition, in order to pressure Brazilian regulatory agencies in favor of the extension of clinical trials in the country. The patients support the argument that results obtained in the United States are the first real hope of cure for a progressive and fatal disease with no other effective therapeutic approach. In the context of a new market, one aspect that has being concerned the researchers is the increasing trade of new biotechnologies in countries where there is any or a little State regulation, strengthening the movement that they call stem cell tourism. This movement consists on the traffic of patients among intercontinental borders in search for new opportunities to experimental treatment (Lindvall, Hyun, 2009; Knowles, 2010; Rehen, 2011), specially to countries such as China, Singapore, Russia, India, Turkey, Germany and Mexico. The analysis of the website of a Chinese clinic, the China Stem Cells Medical Center 5, revealed the offer of stem cell treatments for more than 30 kinds of diseases, ranging from alzheimer, parkinson, dementia, autism and epilepsy, to irregular menstrual flow, infertility and general aging. Each treatment can cost around $ 30,000 and, in the absence of data on applications, they have testimonials from people who claim to have been benefited. In the website investigated we can find over 200 reports.

4 4 Cell Therapy in Brazil: The Paradoxes of Hope In Brazil there was an exemplary case in 2007, when stem cells powder which actually were fish cartilage were offered to patients (Rehen, 2011). The doctors involved were reported but the outcome of the situation remains unknown. The researchers reinforce that most of the procedures are still experimental and have unknown risks. They cautiously warn to the fact that information about research and clinical trials is being prematurely disseminated, which promotes a mobilization of patients seeking for promises about the cells of hope 6. They also highlight the translational challenge of transferring basic research to clinical applications on patients. In this scenario, private banks invest millions in financing studies that prove the efficacy of stem cell therapies, as well as in disseminating their results to possible clients through obstetricians, distribution of leaflets and folders, direct marketing on the internet, and free courses for pregnant women and their partners. The analyses of the advertising material of some Brazilian private banks points the production and mobilization of hope, in addition to the parental responsibility criterion, by the use of healthy babies` images and messages such as: Cell type long life ; Protection for your baby, now and in the future ; Cautious Mom: we understand you. On the other hand, the National Health Surveillance Agency the instance that regulates this activity in Brazil is working to demystify certain messages, revealing the limits of cell technology in order to help future parents make an informed decision (Anvisa, 2013). To draw my PhD project that is supervised by Professor Rachel Aisengart Menezes I had some informal conversations with pregnant women and mothers of babies up to two years about their decision storage or not the umbilical cord blood of their children. These dialogues reveal the prevalence of the responsibility criterion, linked to the logics of risk and prevention. Couples who have opted for storage in private banks justified their choice for ensuring the possibility of cure of their children, if anything would happen. One mother said: If my child have any disease that could be cured with these new therapies and I had not stored it... I do not know... I think I'll blame me forever. The only woman that had chosen to store the umbilical cord of her baby in a public bank said that she did it by a recommendation of a friend, who is a renowned researcher in Brazil.

5 Angela Vasconi Speroni & Rachel Aisengart Menezes 5 On the horizon of a personalized medicine there is a tension between personal dramas and collective demands. A multiplicity of actors are articulated under the rhetoric of a hope in a promising future in which everyone can benefit - including patients, scientists, doctors and private companies. This is what Carlos Novas (2006) calls as a new political economy of hope, from which emotions gain materiality, sustained in a cosmological foundation which lies in the ideals of longevity, vitality, the continuous improvement of the body and the progress of science (Duarte, 1999). New sensibilities are constructed, focused on managing the risks of disease and aging, and the possibilities of individual agency, autonomy and empowerment are increased through the democratization of information and the imperative of choice. Notes 1 This paper results from the doctoral research of Angela Vasconi Speroni, for the Institute of Public Health Studies of Federal University of Rio de Janeiro, supervised by Professor Rachel Aisengart Menezes. The study is financed by the Coordination for the Improvement of Higher Education Personnel (CAPES) of Brazil. 2 Scientists classify human stem cells into three type: totipotent stem cells, also known as zygotes, single cells that can give rise to a full human being once implanted in the uterus; embryonic or pluripotent stem cells, which derive from an embryo s internal cell mass, five or seven days from fertilization, and can give rise to all the human body s cells and tissues; and adult or multipotent stem cells, which constitute later development stages, are found in distinct parts of the body and can give rise to cell subtypes of the tissues from which they originate (Rehen, Paulsen, 2007). 3 Available on: Access on: May 27 th, Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease characterized by degeneration of the central nervous system cells that control voluntary muscle movements. 5 Available on: Access on: June 1 st, Term taken from the National Health Surveillance Agency s informative booklet about umbilical cord blood banks. Available on: 1/banco_de_cordoes_final.pdf?MOD=AJPERES. Access on: June 5 th, 2013.

6 6 Cell Therapy in Brazil: The Paradoxes of Hope Bibliography Buchalla, Anna Paula & Pastore, Karina. Estes bebês são pioneiros de uma revolução da medicina. São Paulo: Veja, março Brasil, Agência Nacional de Vigilância Sanitária. Conhecendo os bancos de sangue do cordão umbilical e placentário. Brasília: Anvisa, Duarte, Luiz Fernando Dias. O Império dos Sentidos: Sensibilidade, Sensualidade e Sexualidade na Cultura Ocidental Moderna. In Sexualidade: o olhar das ciências sociais, edited by Maria Luiza Heilborn, Rio de Janeiro: Jorge Zahar Editor, Knowles, Lori. Stem Cell Hype and the Dangers of Stem Cell Tourism. Stem Cell Network for the Public, Ethics and Policy, Lindvall, Olle & Hyun, Insoo. Medical Innovation Versus Stem Cell Tourism. In Science, v. 324, n. 5935, pp , Neiva, Paula. A medicina que faz milagres. São Paulo: Veja, novembro Novas, Carlos. The political economy of hope: patients organization, science and biovalue. In BioSocieties, v. 1, pp , Rehen, Steven. Cientistas no front. Rio de Janeiro: Ciência Hoje, julho Rehen, Steven & Paulsen, Bruna. Células-tronco: O que são? Para que servem? Rio de Janeiro: Vieira & Lent, Rose, Nikolas. A política da própria vida: biomedicina, poder e subjetividade no século XXI. São Paulo: Paulus, 2013.