Every medical treatment to be offered on the health system, in addition to registration with the Brazilian regulatory agency, must go through a process of analysis and evaluation by the National Commission for the Incorporation of Health Technologies (Conitec). The efficacy, safety and cost-effectiveness of the new medical technologies are evaluated and compared with those already in use within the public health service. A public consultation is held and the opinions of patients, family members, civil society organizations and the pharmaceutical industry are taken into account.
In 2020, the new immunotherapies for melanoma were evaluated by Conitec. After analysis, immunotherapy was considered more effective than chemotherapy and obtained a favorable opinion from the Commission for incorporation into the health system. However, to this day the new immunotherapies are not accessible to everyone and this is a reality of
The movement around the use of new immunotherapies in oncology was considered in my research into melanoma, not just as an oncological problem, but as a “
collective” issue. An exercise that brought together an analysis of the
reports published on the Conitec website, records of contributions and my own experience of participating in the public consultation.
‘Report for Society: Recommendations for Incorporating Medicines and Other Technologies into the SUS’ – Conitec’s Social Participation Team
[Image credit: Conitec]
The notion of
multiplicity, developed by the Dutch theorist and ethnographer
Annemarie Mol (2002), is helpful in highlighting in practice, the different actants involved in the production of multiple realities that are at stake when incorporating technologies into a healthcare system with limited resources, in a context of social inequalities.
When thinking about a study focused on practices, Mol evokes a collective of multiple and different forms of agency that are not restricted to human action. How do we deal with all this multiplicity? And what should be done in the face of a reality that is not recognized as given and self-evident? Mol suggests a path:
It helps to underline that the question "what to do" can be closed neither by facts nor arguments. That it will forever come with tensions—or doubt. In a political cosmology "what to do" is not given in the order of things, but needs to be established (Mol, 2002, p. 177).
If we go back to melanoma, what should be done about a treatment that is considered effective but is expensive to be integrated into the public system? Are there other paths and possibilities?
While Conitec's favorable recommendation does not guarantee the immediate incorporation of the new technology into the health system, an unfavorable opinion does not make the process any easier either. Negotiations need to take place and the participants from different backgrounds bring their perspective in the public consultation that enact on concrete material consequences, the elements that interfere with medical treatment choices:
“The current chemotherapy treatment for melanoma in the health system (SUS) is not capable of bringing gains in overall survival, progression-free survival or quality of life. It cannot be considered cost-effective in any way. On the other hand, the newest treatments are all superior to chemotherapy, bringing gains in overall survival and quality of life. I believe that these new options should be incorporated after negotiating prices and risk-sharing with the different pharmaceutical companies”.
(Contribution from a health professional to the public consultation)
Tensions at play
In the public consultation, the decision to incorporate a medical treatment for melanoma has to do with the cost-effectiveness of therapies, but also with the experiences and opinions of the Brazilian society.
“The lives of family members are priceless! The government should invest in research and fund these treatments, which are extremely necessary for the survival of those who need them. Budgets become just numbers when illness knocks on your door. Let this opinion be taken into account.”
(Contribution from a member of the patient's family to the public consultation)
Both versions are there enacting and participating. This is not about who has more power of choice, but rather how these versions of reality relate in different practices (of people and analytical techniques) and mobilize the decision-making process, even if, in the end, one prevails over the other.
In this way, what to do to improve health and save lives is no longer a question reduced to medical arguments or quantified and calculated measures. The good or benefits (goodnesses) in health also become a political issue, subject to questioning and contestation. Highlighting these tensions helps to rethink the economic, health and ethical dilemmas in the evaluation of health technologies, as well as in the processes of commercialization, access and use of new cancer treatments in medical practices.
Exploring what can be done, within the STS approach, reveals this incredible process in which not only technical and economic aspects gain relevance in the assessment and incorporation of medical technologies, but also the experiences of those who face the challenges of accessing them. To this approach we owe the analysis here of the study of immunotherapy for melanoma and the recognition that knowledge and use of high-cost treatments are associated with the desire to access them, even in local contexts of scarce public health resources.
Editor's Comment
This post is the ‘Precision Medicine series part I’ in a series of two posts on the subject.
Tainã Quiroz is a PhD candidate in Public Health at the Federal University of Bahia. She studies medical technologies and oncological diseases from the perspective of the social sciences in health, engaging with the Science and Technology Studies (STS).
