Public Hearings Project: Access to Metastatic Breast Cancer Treatments. What Changed in One Year?
Authors: Gomes A.L. , Venturela P. , Turbay T. , Cecagno L. , Johnson G. , Caleffi M. 
Published: September 2018

Background and context: In Brazil approximately 50% of the cases of BC diagnosed in the public health system (SUS) are at an advanced stage of the disease. However for more than a decade there has been no incorporation of new treatments of metastatic breast cancer (MBC) in SUS. In 2015 Federação Brasileira de Instituições Filantrópicas de Apoio à Saúde da Mama (FEMAMA) held 13 debate cycles on breast cancer for Parliamentarians in Brazilian states, with support provided by SPARC UICC Grant. Approximately one year after most of these events, FEMAMA noticed the need to organize new debates to verify if there has been any progress with regard to MBC treatments and other oncologic demands. Aim: Promoting discussions and bringing attention to the need of providing new MBC treatments in the public health care system. Strategy/Tactics: To schedule the events in Brazilian states so they could take place on the same day, gain the attention of the press and devise a one-year plan with actions to be developed in partnership with NGOs associated to FEMAMA for implementing oncology policies. Program/Policy process: Planning: Event schedule, actions in the current plan as well as monitoring and engagement strategies for NGOs; Engagement NGOs associated to FEMAMA met with state Congresspeople to organize public hearings. Implementation: Organization of public hearings in 9 Brazilian states; Monthly on-line meetings with NGOs for monitoring the execution of annual planning actions, measuring results and addressing the obstacles found. Organization of activities: speeches at meetings held by municipal Departments of Health, petitions for creating Special Oncology Committees at State Assemblies, meetings with State Congresspeople, engagement campaigns, etc.; Promotion: On social media and in the press. Outcomes: Contribution for the approval of metastatic breast cancer treatments with trastuzumab and pertuzumab in the SUS; Organization of 8 public hearings; Insertion of 245 news reports in the press; Creation of Parliamentary Front on Women´s Health; 2 speeches at the States Board of Health; 4 petitions for the creation of mandatory cancer registrations; Bill petitioning for the creation of mandatory cancer registrations; 1 state directive establishing mandatory cancer registrations; 4 petitions for the creation of a Special Oncology Committee; Contribution for passing a bill establishing a 30-day period for a final cancer diagnosis in the SUS (PL 3752/12) analyzed by the Family and Social Security Committee of the House of Representatives. What was learned: The NGOs participating in the project have decreased their engagement as time went by due to their difficulty in obtaining practical outcomes from state legislative authorities. For the next project, which provides for the organization of new public hearing in the 2nd anniversary of the first event, we must create annual planning actions/activities in conjunction with the NGOs so that the NGOs can feel more motivated to participate in the meetings.