Cancer Diagnosis and Treatment: The Need for Compulsory Registration
Authors: Gomes A.L. , Turbay T. , Venturella P. , Cecagno L. , Johnson G. , Caleffi M. 
Published: September 2018

Background and context: According INCA 630,000 new cases of cancer will be diagnosed in 2018, however Brazil does not have a unified registration system for cases of cancer. The Cancer Information System (SISCAN) was supposed to be in operation in Brazil since 2013, but it is not used by several Brazilian municipalities. Without these records it is not possible to measure the actual dimension of cases of cancer (number of cases, stages, treatments, etc.); consequently, public policies aiming at actual oncologic needs are not developed, which leads to the waste of public resources and an increase in mortality rates. Aim: Implement a mandatory and unified cancer registration system in Brazil. Strategy/Tactics: Involvement of various stakeholders, such as political leaders, NGOs, the press, etc. Align several actions and projects executed by Federação Brasileira de Instituições Filantrópicas de Apoio à Saúde da Mama (FEMAMA) for the same goal. Share FEMAMA´s goal with other pressure groups. Program/Policy process: Prepare arguments for proposing a bill on the topic in question. Promotion in the media regarding the impact of the lack of a mandatory registration system; Align discourse with NGOs associated to FEMAMA so that they can act as representatives and regional influencers on this topic. Meeting with the Minister of Health In reference to World Cancer Day (WCD), NGOs associated to FEMAMA have submitted letters asking state Congresspeople to draft a bill creating mandatory cancer notification systems in their respective states; Organization of 13 debate cycles and 9 public hearings at state assemblies about the topic; Articulations with federal Congresspeople for proposing a bill on the topic in question; Organization of a conference attended by NGO representatives and female political leaders to discuss action proposals; Discussion of the project and joint actions executed alongside multisector group in Brazil. Outcomes: Favorable opinion from the Ministry of Health about FEMAMA´s goals; WCD: Actions organized in 15 Brazilian states with the engagement of 17 Congresspeople; Organization of debate cycles and public hearings on the topic in 13 Brazilian states; Enactment of a regulation implementing a mandatory cancer registration system in the Federal District since 2017; Submission of a proposal petition requesting the implementation of a mandatory cancer registration system in the State of São Paulo to the State Department of Health. Proposal of two bills submitted at the House of Representatives on the topic in question (PL 8478/2017 and PL 8470/2017); The bills (unified) were passed by the House of Representatives, and have been subsequently submitted to the Senate for analysis; What was learned: The articulations with several political leaders for the proposal of a bill for the implementation of a mandatory cancer registration system and the articulated engagement of NGOs leverages these actions and expands debate in the legislative, both on a national and on a state level.