Background and context: Thousands of women suffering from HER2+ metastatic breast cancer (MBC) in Brazil had limited access to treatment in the public health system (SUS). There were no innovative therapies (only standard chemotherapy) available for them. Trastuzumab is included in WHO´s essential medicines list and it began to be commercialized in Brazil in 1998, being available in SUS in 2012, but only for patients with local breast cancer. Pertuzumab was never available in SUS for any stage of the disease. Aim: Contribute to the inclusion of trastuzumab and pertuzumab in MBC treatments in the SUS. Strategy/Tactics: Federação Brasileira de Instituições Filantrópicas de Apoio à Saúde da Mama’s (FEMAMA´s) main strategy was to develop several projects with the same purpose. Program/Policy process: The cycles of debates with parliamentarians and public hearings (events) to discuss with politicians the incorporation of new treatments in 15 state legislative branches and also in the National Congress; Organization of 8 public hearings after the first event (mentioned above) and elaboration of a one-year plan of actions to be carried out alongside NGOs associated with FEMAMA for carrying out local actions; The Women´s Cancer Fight Forum (event) to strength and empower the role of NGOs in public health policies; The National Conference of Female Mayors and Governors and the National Conference of First Ladies (event), where women´s leaders from all regions and local NGOs worked together discussing problems and suggesting actions to combat them; The Ambassadors Project - Women in Defense of Breast Health, empowering patients to be spokespeople for the cause in their regions; Carry out surveys that show the difference in MBC treatments available for patients with health insurance and patients treated in the SUS; Participation in several events on this topic organized at the House of Representatives and at the Senate; Add this topic to the agenda of the National Health Council and of the 2015 National Health Conference; Awareness and mobilization campaigns for expanding access to treatment and empowerment of patients: Para Todas as Marias, Por Mais Tempo, Acesso Já, #PacientesNoControle - Atitude Exige Coragem; National campaign to promote the public consultation of the Ministry of Health on the incorporation of trastuzumab and pertuzumab treatments in SUS, #PatientsInControl. Outcomes: Several outcomes were obtained as a result of these projects and campaigns. However, our main result undoubtedly is assuring access to metastatic breast cancer treatments in the Brazilian health care system. On August 2017, the Ministry of Health announced the incorporation of trastuzumab for metastatic breast cancer in the public health system and on December 2017, it announced the incorporation of pertuzumab for the same patients. What was learned: Patients and articulated NGOs have power to change scenarios. Empowering patients by providing them with information and tools is an important way to promote changes.
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.
Background and context: According to INCA (National Cancer Institute), over 300,000 women would be diagnosed with cancer in 2017 in Brazil. There are many obstacles for full autonomy of Brazilian women. However, their contribution to the growth of the Brazilian GDP has been increasingly more significant. Access to prevention, diagnosis and health care have an impact on those levels because, the more healthy women are, the more they can be economically active. The engagement of female political leaders for the promotion of public policies is a major opportunity. Aim: Promoting the engagement of female political leaders in the fight against BC in terms of promoting local public policies and actions to provide access to diagnosis and treatment of the disease. Strategy/Tactics: Was established that, to participate in the event organized by the project, only teams comprised of NGOs and female political representatives from their respective locations could apply. Therefore, we can expect joint and combined actions in the long run. Program/Policy process: Planning: Define the schedule of the event and goals of the dynamics applied for collectively building a plan. Engagement: NGOs associated to Federação Brasileira de Instituições Filantrópicas de Apoio à Saúde da Mama (FEMAMA) organized local meetings to encourage political leaders to participate in the event. Implementation: Lectures to align knowledge and expertise on: female empowerment, social costs of cancer and advocacy; Collective construction dynamics to be used to draft a guideline document, specifying the main local issued regarding female cancer and actions proposed to solve those issues. Promotion: Social media and press. Feedback: Various improvements right after the event, due to the closeness established between the NGOs and political leaders. Main outcomes: Participation in the event: 36 NGOs from 15 states and 28 female political leaders (State Governors, Mayors, First Ladies, federal Congresswomen, City Councilor, etc.); 1 guideline document specifying the main local issued regarding female cancer and actions proposed to solve those issues; Reaching over 207,000 people, with key messages from the event posted on social media, as well as 100 insertions in the press; Drafting and proposing a bill, which is to be done by the federal Congresswoman who participated in the event, petitioning for the implementation of a Mandatory Cancer Registration service in the country (PL 8470/2017); Purchasing and repairing digital mammography devices for public hospitals in 2 Brazilian states; Implementing a cancer registration system (which was out of operation since 2013) and creating a Special Oncology Committee at the City Councils of cities in northeastern Brazil. What was learned: The engagement of female political leaders by the NGOs was essential to the success of the project. FEMAMA believes that this relationship needs to be maintained so that the actions proposed in the guideline document can actually be carried out.
Background and context: Since 2013, FEMAMA organizes a World Cancer Day (WCD) campaign from UICC in Brazil. Besides that, FEMAMA sought to devise innovative actions aimed at raising awareness and advocacy, aligning UICC´s global campaign with local needs. FEMAMA wondered how the campaign and its related actions could have a larger resonance and impact. Currently, Brazil has been facing an important patient rights issue: the Ministry of Health was supposed to start providing an important drug for HER2+ MBC treatment to public health care (SUS) units, and this was a great opportunity to exercise social control. Aim: Raising awareness on the reduction of the impact caused by cancer in Brazil, in addition to assuring access to appropriate MBC treatment in the SUS. Strategy/Tactics: FEMAMA´s main strategy was to engage and encourage the participation of all 73 associate NGOs. FEMAMA realizes the strength of its network and its ability to adapt a global campaign so it can meet local needs. Program/Policy process: Planning: Define a focus point for actions/activities aimed at raising awareness and advocacy Activities carried out: Web site: Portuguese Web page about WCD at FEMAMA's Web site Social media: Several informative content Press: Press releases, opinion article and interviews Advocacy mobilization: Mobilization for trastuzumab access and for public hearings about BC Local actions: Landmark lightning, NGO actions Partnership and networking: landmark lightning, associated NGOs, partners and invited cancer digital influencers Outcomes: Reach - FEMAMA´s Facebook page: 194,854 people Partners and influencers: More than 1,300 interactions in #RecadosContraoCâncer action on their networks Web site: Over 450 accesses to the Web site regarding the campaign Direct mail: Over 3700 contacts activated via e-mail Press: Almost 100 mentions in the press related to FEMAMA and WCD Advocacy: 16 Brazilian states involved on mapping the access of trastuzumab on SUS for MBC patients and 3 Brazilian states involved so far on scheduling public hearings about cancer. Landmarks lightning: At least 8 landmarks illuminated around the country. Events: The NGOs associated to FEMAMA organized activities and events in reference to WCD in all regions of the country. The Ministry of Health indeed delayed the provision of treatment drugs to Brazilian patients, but FEMAMA was able to act beforehand, taking advantage of WCD to map out the situation and take action. What was learned: We learned that it is important to take advantage of moments when cancer is in evidence, when communities are paying attention and when authorities are more aware, so that necessary changes in scenario can be within our reach and take place. The WCD campaign served as a window where we were able to display a relevant agenda for Brazil, also being able to take action so that the rights of thousands of patients could be enforced.
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