THE BRAZILIAN CANCER FOUNDATION
A story of hope and accomplishment
The Brazilian Cancer Foundation is a non-profit institution that raises funds and invests in cancer prevention, early diagnosis, assistance, programs and projects related to transplants of bone marrow and umbilical cord blood, as well as palliative care and research. Its mission is to promote strategic actions for prevention and control of cancer on behalf of society at large, and also to support the Brazilian National Institute of Cancer (INCA) and all activities of the Brazilian National Cancer Control Program. Moreover, it further provides consulting services for states and municipalities throughout Brazil so they can improve their processes in the treatment of cancer (Oncologic Attention Plan).
Given this scenario, it is fundamental for the entire society to participate in the fight against cancer. To learn more about our actions, click here and access the English version of the Cancer Foundation’s Annual Report – 2018, or get in touch with us through our institutional e-mail address: comunicacao@cancer.org.br.
From The Ary Franzino Foundation To The Cancer Foundation
The Cancer Foundation began in 1991 under the legal name Fundação Ary Frauzino para Pesquisa e Controle do Câncer, paying homage to the doctor who directed INCA from 1980 to 1985. Since the original name was a bit long, it soon became known as the Ary Frauzino Foundation or by the initials of its Portuguese name (FAF).
In the year 2008, in order to facilitate communication with all segments of society, the name was simplified and the trademark was reformulated. The legal name Fundação Ary Frauzino para Pesquisa e Controle do Câncerwas retained, but at the same time the simpler name Cancer Foundation was adopted for communication with the public at large. Along with the summary name, the slogan “with you, for life” was added, in order to transmit its lifetime commitment on behalf of everyone’s life and health in a pithier manner.
The symbol for the new trademark was inspired by the consciousness-raising ribbons used to encourage people to sign on to great causes. The most well-known of these is red ribbon that symbolizes the fight against AIDS. Each color, however, symbolizes a different cause. Our color, purple, symbolizes the struggle to overcome cancer.
Governance
BOARDS
The Cancer Foundation is administered by its Board of Trustees, Board of Directors and Oversight Board. The members of all three governing Boards are representatives of various sectors of society and are all professionals recognized in their respective areas of activity who perform their functions on a voluntary basis. Periodic elections are held to renew the membership on the Foundation’s Boards, with the new member candidates being nominated and approved by the other Board members. All the activities of the three Boards are governed by the Foundation’s Bylaws.
BOARD OF TRUSTEES
Chairman: Paulo Niemeyer Soares Filho
BOARD MEMBERS
Ana Dolores Moura Carneiro de Novaes
Armínio Fraga Neto
Gabriela Salomão Vaz Moreira
Gilberto Schwartsmann
Gloria de Fátima Teixeira Ciarlini
Joaquim de Arruda Falcão Neto
Lucia Maria Guimarães Cavalcanti
Maria do Carmo Nabuco de Almeida Braga
Ligia Bahia
Paulo César Pereira de Souza
Roberto Pontes Dias
BOARD OF DIRECTORS
Executive Director: Luiz Augusto Maltoni Júnior
Product Director: Reinhard Braun
History
The Brazilian Cancer Foundation was created almost a quarter century ago, in 1991, by Dr. Marcos Moraes – at the time the general director of INCA – together with three other doctors, Jayme Brandão de Marsillac, Ulpio Paulo de Miranda and Magda Cortês Rodrigues Rezende. The objective was to seek economic-financial alternatives so as to expand INCA’s services for persons stricken with cancer and intensify efforts to prevent and control cancer.
Creation of the Foundation opened up a new channel for receiving funds from private initiatives, as well as local public agencies and international institutions. The management model adopted has contributed since then to INCA’s steady growth.
The results over these past 24 years reflect the commitment made when the institution was created: contributing to the actions of the Brazilian National Cancer Prevention and Control Policy. The Foundation’s governance practices – including transparency, efficiency and nimbleness in managing funds – have assured the institution an outstanding position both in Brazil and around the world.
The Cancer Foundation has become a benchmark institution and earned the recognition of the medical and scientific communities. While it continues to be a major INCA partner, it has expanded its activities and the challenges it takes on. Among the short-term projects in the works are operating an oncologic hospital to be opened in 2016, and soon afterwards a palliative care unit.
Mission, Vision and Values
What we do
Bone Marrow
Cancer in children and adolescents
Clinical Research
Control of Tobacco Abusage
Health Care Technology
The functioning of the Brazilian National Institute of Cancer (INCA) and execution of the National Cancer Control Program coordinated by the Institute require a powerful technological apparatus. To this end, the Cancer Foundation has developed projects involving systems that consolidate the existing data on cancer and also tools to improve assistance, providing greater swiftness in handling patient needs.
Among the main investments made were purchase of the software program Business Intelligence (BI) and acquisition of the ownership rights to a hospital administration system. At present, in order to contribute to the enhanced performance of more than a hundred systems, a team of around 30 analysts, maintained by the Foundation, performs services for INCA.
The information-processing area gained impulse as from 1997 when the Foundation bolstered the professionalization of its human resources, contracting managers who act in key areas of the institution. In the field of Information-processing technology, the target was to implement tools to provide support for INCA’s major pillars: assistance, research, instruction and prevention.
The first big project began that year 18 years ago, in order to integrate the assistance area. One system brought together everything from scheduling to the handling of inquiries and exams, electronic prompt-books to hospitalizations, all the way through the medicines consumed by each patient, centralizing the control over the entire hospital movement. At the turn of the millennium, a managerial software program (ERP) was acquired and integrated with the hospital system, making it possible to control storeroom inventories, fixed assets and the flow of purchases, as well as make reports available on accounting and purchasing between other facilities.
Another major advance was the development of the systems relating to bone marrow transplants in Brazil, with full automation of the National Register of Bone Marrow Donors (Redome) and the National Register of Bone Marrow Recipients (Rereme).
Yet another enhancement in the assistance area was the digitalization of all computer tomography, magnetic resonance and X-ray images. This initiative made it possible for doctors to have access to exams at any INCA unit, or even in their own homes, thus boosting speed and savings.
In the area of epidemiologic vigilance in partnership with the SUS Information-Processing Department (Datasus), the Cancer Foundation developed the Siscolo (2001) and Sismama (2006), in order to record the occurrences and track the evolution of colon-uterine and breast cancer, respectively. Besides these systems, the Foundation aided creation of the Cancer Hospital Register and the Population Base Cancer Register.
When it comes to research, highlights of the Cancer Foundation’s work include creation of a management program for the National Tumor Bank (BNT), an important study tool that brings together data related to tumor samples collected from patients. In 2007, this application was ranked as the finest in the entire world in its category at the annual meeting held by the International Society for Biological and Environmental Repositories (ISBER).
In the area of palliative care, a software program developed by the Cancer Foundation allows home-care teams for patients beyond therapeutic possibilities to have direct online access to the INCA system by means of their smartphone. Doctors and nurses cannot only check the patient’s record, but they can also update data in real time. In 2009 the application was ranked the best in the health-care area by the Brazilian Association of Information Technology Companies (ASSERPRO).
Oncobiology Program
The Oncobiology Program (Programa de Oncobiologia) of UFRJ’s Leopoldo de Meis Biochemical Institute has counted on support from the Cancer Foundation since 2005. Each year two graduate scholarships are offered and 15 research fellowships are awarded as well, in addition to funds invested in actions for health-care communication aimed at contributing to demystifying public perception about cancer.
By the end of 2014, the Cancer Foundation had invested around R$ 2.7 million in the Oncobiology Program. Most of this funding (R$ 1.5 million) was invested in scholarships and research. One of the projects involves construction of an auditorium for use in giving courses, lectures and symposia at the UFRJ Health Sciences Center.
The UFRJ Oncobiology Program is an inter-institutional organization that brings together groups of researchers from different entities in Rio de Janeiro. Besides UFRJ itself, there is INCA, the Rio de Janeiro Federal Rural University (UFFRJ), Rio de Janeiro State University (UERJ) and Fiocruz.
Currently, there are 41 lines of research in progress, with dozens of projects in each one of them. Among those that began in 2014 there are groups involved in studies for identification of new therapeutic targets for control of mammary tumors and endometriosis lesions, protogenomic appraisal of the resection margin of patients with gastric cancer, etc. Continuing from past years are translational research into infant leukemia, a panel for appraisal of instability in the prospect for enhanced diagnosis, and a study devoted to clinical and experimental research on differentiated thyroid carcinomas, among others.
The UFRJ Oncobiology Program is made up of the Management, Research, Instruction, Symposia and Dissemination nuclei. The research groups supported are involved in the following lines of study: search for new markers in order to achieve more effective early diagnoses and/or prognoses for the various types of cancer; search for new treatments against cancer; comprehension of the action mechanisms of the various types of cancer, as well as risk and epidemiologic factors; and development of disclosure and prevention strategies.
Inasmuch as the program also features a Dissemination Nucleus, the projects do not exclusively use professional from the medical-scientific community. In 2013, for instance, the Dissemination Nucleus developed Acubens, a virtual museum on the playful side that broaches the thorny subject of cancer in a differentiated manner. The aim is to present to the public, especially youths, the risk factors associated with the disease, in order to encourage adoption of a healthy lifestyle, based on games, videos and comic book stories in virtual format.
Likewise in 2013, a survey was conducted by the Nucleus to gauge public perception of alcohol as a risk factor for cancer. With the results obtained, besides permitting comprehensive understanding on the subject, the Dissemination Nucleus launched an animated video in 2014 as part of the strategy of dealing with cancer among Brazil’s young populace.
Oncologic Attention Plan
The Cancer Foundation performs Consulting services for states and municipalities all over Brazil in order to enhance the processes for cancer prevention and treatment. Such work encompasses actions, programs and projects that are needed for implementation of the National Oncologic Attention Policy in all aspects involving education, promotion of health, prevention, diagnosis, treatment, rehabilitation, palliative care, information-processing systems and assistance regulation. It is developed in partnership with the state and municipal health secretariats involved. The States of Rio de Janeiro and Amazonas already have such a Plan, as does the municipality of Macaé.
The consulting work performed together with the Rio de Janeiro State Health Secretariat was concluded in 2013. The Oncologic Attention Plan developed, based on the diagnosis of the situation in the state, was aimed at rational use of the resources available, with targets and indicators for tracking and appraising results. The basic principle was the equity and integrity of the treatment for the population, with a view to cutting down the incidence of cancer and deaths caused by the disease.
Further in the year 2013 the Foundation signed an agreement with the Municipal Prefecture (City Hall) of Macaé to develop the Oncologic Attention Plan for the city, including expansion of the Macaé Oncologic Center. Both aspects of the project were concluded in 2014, in order to make the city a benchmark for high-complexity assistance in oncology. The plan involved entire design of the municipal health network and its developments for full oncologic assistance, going all the way from diagnosis through palliative care, treatment including surgery, radiotherapy and chemotherapy, besides cancer records and research.
In 2014, the Foundation performed Consulting services for the Amazonas State Health Secretariat and Government. Among the services were diagnosis and recommendations for actions to enhance access and quality of care provided by the Amazon State Oncologic Attention Network. The project, concluded in December of the same year, also included appraisal of medical services, operational procedures, information-processing systems, billing and monitoring of results of the Amazon State Oncologic Control Center Foundation (FCECON).
Additional information on the consulting services for states and municipalities related to oncologic attention can be requested via e-mail (comunicacao@cancer.org.br) or by phone (21) 2157-4600.
Palliative Care
Palliative treatment is fundamental for controlling the symptoms of a chronic disease in the advanced stage and also to enhance the quality of life of the patient and his or her next-of-kin. In Brazil, the aging of the population and the rise in the incidence of cancer have made sick people lacking palliative care an issue with tremendous social impact and increasing importance in terms of public health. In our country we do not yet have a palliative care structure that is adequate to handle the existing demands, both from a quantitative and qualitative point of view.
The Cancer Foundation has been engaged for a long time in trying to overcome this scenario. In 1998 it provided support for creation of the Oncologic Therapeutic Support Center, currently Cancer Hospital IV (HC IV), an INCA unit devoted exclusively to patients beyond the possibility of cure. And among the projects now underway, we are searching for installations to set up a palliative care unit in the central region of Rio de Janeiro and also are looking to build a model unit on land already acquired for this purpose, located in the district of Vargem Pequena, in the city’s Western Zone.
The WHO estimates that at least 80% of deaths due to cancer and other life-threatening diseases correspond to patients in the terminal phase that could benefit from palliative care. Out of every 1 million inhabitants of Earth, around 1,000 patients per year need palliative care. Although this calculation may be an under-estimate, since it only reflects the need for care in the terminal phase, it is nonetheless still a good reference regarding the need for palliative care.
In the State of Rio de Janeiro, taking into account INCA’s estimates for 2014 (and still valid for 2015) – excluding the cases of non-melanoma skin cancer – the number of patients requiring palliative care per year, from the time of diagnosis, is around 12,576 in the state capital and 27,816 in the rest of the state. As next-of-kin who provide care should be included among those benefitting from this type of treatment, the demand doubles, that is to say, 25,152 in the capital and 55,632 out-state.
Radiotherapy
In the second half of 2015, the Cancer Foundation will be starting up the National Radiotherapy Training Program. The objective is to train 20 physicists with a transdisciplinary view and 80 radiotherapy technicians and also to provide updating courses for 300 doctors, radiotherapists, technicians and physicists. The project further includes developing and making available an ongoing virtual learning environment to train residents and update radiotherapy doctors, physicists and technicians throughout the country.
In the line of oncologic care, radiotherapy is recognized as an essential component of assistance for cancer patients. About 60% of them will benefit from such therapy at some point in their treatment, and results indicate a cure rate of 50% on an isolated basis and 60% when associated with chemotherapy or surgery.
The National Radiotherapy Training Program was conceived of by the Cancer Foundation and developed in partnership with INCA’s Instruction Department and UERJ’s Radiologic Science Laboratory in order to supplement the training and updating courses for radiotherapy area professional, pursuant to the requirements of the SUS, in conformity with the Health Ministry’s National Radiotherapy Program.
Created by the Federal Government, the National Radiotherapy Program involves the purchase of 50 machines to be installed at 50 new treatment centers and 50 machines to be installed at existing centers that need updating. The bidding process for purchase of the equipment included the requirement for the company winning the bid to set up a manufacturing plant in Brazil.
Such a decision will no doubt provide medium- to long-term benefits (5- to 10-year time frame), with installation of new centers and replacement of obsolete equipment. Even so, the greatest impact of the National Radiotherapy Program will be even more long term, what with production of equipment in our country, making the machines cheaper due to the reduction of taxes and the possibility of financing in Brazilian currency, creation of jobs and technical know-how.
The acquisition of radiotherapy machines, besides including future production here in Brazil, will also no doubt expand our capacity to handle cases and cut down the waiting time for treatment. Nonetheless, as radiotherapy is a highly complex process, characterized by a specific physical structure, a differentiated technological park and multi-professional action (doctors, physicists, technicians, nurses) in the various stages of planning and execution, adequate training and updating of the human resources involved are just as fundamental as the availability of the equipment. Hence the importance of the National Radiotherapy Training Program as proposed by the Cancer Foundation.
The program for updating and training will begin in the second half of 2015 and involve a group of 20 companies and two individual donors that will carry out the execution phase of the program that will contribute mightily to improve the quality of radio-therapeutic treatment in Brazil.
Research
Since it was created with the mission of collaborating with the Brazilian National Cancer Control Program, the Foundation could not fail to also focus its attention on the research area. Oncologic research opens up paths for discovery of new biological markers for early detection, besides the possibility of individualization and optimization of therapeutic treatment and development of more effective exams and new pharmaceuticals. Our research work has further contributed to understanding of the complexity of the disease, as well as improvements in prognosis.
Over the course of more than two decades, the Foundation has signed agreements with companies and institutions for development of research projects. It has been the major entity for incentivating INCA’s research area. Among the important initiatives it has supported are the Program for Internal Fostering of Research (Profip) and the National Cancer Clinical Research Network, besides various projects that permit creation of a research structure at INCA involving leading-edge technology. It also has carried out agreements with foreign institutions in order to finance research in Brazil, such as NCI/USA and the Swiss Bridge Foundation.
The Foundation also supports the National Tumor Bank and Oncobiology Program of Rio de Janeiro Federal University (UFRJ).
Tumor Bank
The National Tumor & DNT Bank in Brazil (BNT) is the first public bank of this type that is nation-wide in scope. It arose based on an initiative of INCA’s Research Coordinating Office that was aimed at setting up the first Brazilian network for collecting and transferring to the Institute’s Research Center samples of tumors and blood from patients with the most common tumors in the country – based on their frequency and death rates – for definition of their genetic profiles.
Construction of the BNT was managed by the Cancer Foundation and its infrastructure was developed in 2004 with funding provided by the Brazilian Government’s Finance Agency for Studies & Projects (Finep) and the Swiss Bridge Foundation, which is a non-profit entity based in that European nation. A bio-data-processing platform was specially created to organize and store BNT data that began functioning in 2005.
Centralization of data allows research studying the behavior of tumors based on the genetic standard of the Brazilian population and defines diagnoses and treatments with greater speed and safety. The current storage capacity of BNT is roughly 88 thousand samples, which are donated by patients undergoing surgical procedures in all the medical-surgical services of INCA’s hospitals.
More than 25 projects approved by INCA’s Ethical Research Committee(CEP) were carried out with biological samples taken from patients registered at the institution, thus leading to technical-scientific collaborations with Brazilian and international research groups. The results achieved with these research projects may make a marked contribution to actions for cancer prevention and treatment, through enhancement of technologies oriented to diagnosis of the disease and identification of molecular markers that can serve as “targets” for specific therapeutic activities in various types of cancer.
The challenge now is expanding the collection of samples with implementation of the Brazilian Bio-Bank Network, a technical-scientific cooperation exercise with cancer assistance and research institutions associated with the BNT, located in other regions of the country.
Another initiative led by the BNT was creation of the Network of Tumor Banks of the Latin American & Caribbean Alliance, the main objective of which is establishing actions aimed at setting standards for bio-bank processes – standard operating procedures, analysis of costs of biological samples, etc. – in governmental oncologic attention institutions. So far, the following countries participate in this network: Argentina, Brazil, Chile, Colombia, Cuba, Ecuador, Peru, Mexico and Uruguay.
Contact us
Rua dos Inválidos, 212/ 11º andar
Centro – Rio de Janeiro
Rio de Janeiro – Brasil