Bolivia Bocaranda was one of the first women to create a citizen movement about breast cancer awareness in Venezuela and Latin America. This was accomplished due to her influence in rights restitution of women with breast cancer. Bolivia's organization “SENOSAYUDA” made a cultural change by educating citizens about the disease by using simpler language. Bolivia led an organized and sustainable movement that broke the barrier of traditional women´s support groups. Besides giving psychological support, prevention exams and education to the victims and families, Bolivia also organizes educational campaigns to stop the prejudices against the disease and to reduce its impact through prevention. From her own history, Bolivia dignifies and empowers affected women providing them physical and psychological support and also makes them agents of change for allies and other organizations in the country.
The New Idea
“SENOSAYUDA” is an association created from Bolivia´s own experience. It is an organization for breast cancer survivors, and it works together with volunteers to develop a preventive culture. She does this by involving the community by hosting campaigns such as the donation drive of hair to make wigs. She also uses humor, theater, and sports to involve artists and common citizens alike. Each particular campaign is designed with a pedagogic program that empathizes with people who are impacted by the disease and their families, which creates awareness and sensibility in the society.
Bolivia’s breast cancer fight is in alignment with the gender equality and maternal health Millennium Development Goals of the United Nations in order to provide women better health and empowerment support. In addition, it seemed as though a national response to breast cancer, aligned with women's sexual and reproductive rights was needed.
In 2014, under Bolivia’s leadership and with the collaboration of Codevida Organization, the Ministry for Women and the Ministry of Health developed a Master Document that was handed to the National Congress. With this document, she intends to establish breast cancer as a public health issue. She wants to give some guidelines to provide a new answer regarding the disease with a national response against Breast Cancer granted on the guarantees and rights consecrate on the Bolivarian Republic Constitution of Venezuela, the State laws and the international documents subscribed by Venezuela. This way, Bolivia has an influence in the frame change and transforms her initiative into a public health cause with 13 States leaders.
As part of her innovation is worth noticing her coordinating role on the issue of cancer and her commitment to future geographic expansion (national) and the incursion on public policy issues. She aims at communications as a strategy to obtain a solid case to discuss with the government. It is important to highlight that Bolivia has Feliciano Reyna’s support, a Venezuelan fellow, who on November 2014 made possible the approval of HIV laws in Venezuela.
Also, Bolivia is co-founder of the Latin American Union Against Women Cancer (ULACCAM), replicating herinnovative organizational and formative practices. Also she represents Venezuela in the public polities theme. On October 2014, she created the first Regional awareness campaign with FOXInternational, UNIDOS EN REDand “SENOSAYUDA”. She contributed and participated on 2013 in the ULACCAM’s Declaration of Women Rights against Breast and Cervical Cancer as a commitment between activists in Latin America and the entire world, to raise awareness in the government leaders who areresponsible of health policies and general society on the consequences of breast and cervical cancer. This Declaration is like a work guide forcause defenders, government and society to reduce the threat of breast and cervical cancer.
Bolivia also groups several NGO’s that replicate her organizational program (UNICAM, FUNDASENO, FUNCAMAMA, FAMAC, ASOMASOL, FUCCAM) working together on a health and disease prevention network on different States who count on Bolivia’s support.
To Bolivia “breast cancer needs another perspective. Women can’t sit waiting for the disease to end with her. Women need to be spiritually and physically stronger to take care about their own health. Also she needs information and tools to fight for her life. Specially, she needs help from the government and public health responsible and if they don’t provide them the support, women should demand that they comply with their responsibilities. “
Every year in Latin America, breast, and cervical cancer kills over 118.000 women (SENOSAYUDA’s rate). Breast cancer is the second most frequent type of cancer in the world (after lung cancer) and is most common in women. In 2008, 1.38 million of new cases of breast cancer were registered around the world representing 23% of all type of cancers. Is also the first death cause for women with cancer in the world and just on 2008, 458.000 deaths by this disease were registered. During 2008 in Latin America and the Caribbean 114,989 new cases of breast cancer were diagnosed and 36,952 dead for that disease were registered– (Source: http://ulaccam.org/deteccion-tratamientos.php).
Last official data about cancer situation in Venezuela are from 2012. During that year in Venezuela -according to statistics of the Cancer Register system- there were 42.046 cases registered; 22.815 registered deaths in the same year and to segment by gender we found: female’s 4 frequent locations are: mammary gland 5.063 cases (22,88 %) and 2.067 deaths (18.25%), cervical 4.076 cases and 1.630 deaths, lung 1697 cases, and 1366 deaths; and colon and rectum with 1661 cases and 801 deaths that represent 56% of incidence and 52% of annual mortality.
Frequently, patients go from a hospital to another. Other patients don’t know what to do after they are told: “we don’t have space for chemo or radiotherapy” and they suffer in silence, just waiting. And in many cases that waiting means dead. Also, many women make sacrifices to save money to get a mammography, and then they have to repeat the exam because mammography didn’t have a good quality. There are a lot of women without access to any mastology center. Other patients can’t find all the medicines for their treatment; and even worse, a lot of women get radical mastectomies without being previously notified. The Consensus of 2014 shows (http://www.senosayuda.org.ve/SenosAyuda/media/BibliotecaGlobal/PDF/documentconsenso.pdf), Breast cancer has a huge impact on Venezuelan women, the difficult access to integral attention against breast cancer means a high mortality level (13.7 deaths by 100.000 habitants), a high rate of young life lost (69.880 years) and discrimination that continuously diminishes their dignity.
All this is aggravated by the fact that the disease isn’t diagnosed early enough, so effective communication campaigns are necessaries. Besides prevention, there are a series of human factors after diagnosis, like body mutilation, hair loss, depression and family impact, and the right to information and psychological attention.
This tendency will keep increasing if there isn’t a modification of policies to approach breast cancer problem in Venezuela like a public health theme with control, performance evaluation and monitoring mechanisms of the responsible bodies. In most cases, diagnosis is late and medical attention doesn’t meet the population’s needs.
Bolivia starts in 1999 with “SENO SALUD” an organization with Pfizer Laboratories’ support. When this organization was absorbed in the RSE Pfizer’s program, Bolivia renounces because she didn’t share the organization’s guidelines and in 2006 she creates “SENOS AYUDA”. However, we can considerate “SENO SALUD” a replica of her fight for awareness and health rights that still maintains Bolivia’s values, but without the scope and repercussion that Bolivia has with “SENOS AYUDA”. Bolivia counts on a staff composed by an Ad Honorem Directive Board conformed by a president, vice-president and 3 directors, volunteers group and paid employees: General Manager, Administrator, Communications Coordinator, Coordinator of Alliances and Events, Coordinator of Education and Information, Volunteers Coordinator and Public Attention Coordinator.
Through her organization “SENOS AYUDA” Bolivia’s vision is: “To influence the battle against breast cancer through information and earlier detection activities; work along with groups dedicated to the same cause, and orientation and emotional support for patients and families”.
Bolivia counts with 13 region leaders who are her Node Managers and replicators to the rest of the country. It is worth noticing that part of her volunteer body is composed of college students doing community service to obtain their degrees and a lot of them after finishing their service hours, remain active and collaborate with the campaigns.
It is important to highlight that besides creating organizations that effectively replicate her model, Bolivia’s programs have an influence in the whole ecosystem: health Center’s staff, communities, schools, universities, women and her families, and recently, with Congress, State organisms, and civil society with her innovative, creative and profoundly human campaigns.
Some of the programs developed by her are the following:
SenosEduca (Education) It groups 4 specific programs: Day Inquiry (communities, institutions or enterprises, promoting the breast cancer ABC, directed to increase earlier detection. Conferences for kids, called “Concientiza a tu mamá” (Awareness for your mom), and workshops with healthcare staffs to develop more empathy for patients and better relationship between them and patients.
SenosApoya (Support) Provides psychological attention and supports for patients, family and friends, support groups and survivals support.
SenosFortalece (Empowerment) Workshop cycles to strengthen allies and social organizations that collaborate in the SENOSAYUDA network, to make them sustainable in time.
SenosMima (Pampering), a wig, bras and prosthesis bank that supports affected women to improve their self-esteem.
SenosEntretiene (Entertainment) promoted spectacles (theater shows, monologs, expositions) that help to increase population awareness about the problem and collects funds for the programs.
From 2007 to 2013 Bolivia directly impacted 200.606 people, and this number can be extended to the whole country with the sensitization of her campaigns which have a massive diffusion on Media and social networks with more than 208.000 followers. The survivors’ and volunteers’ work experience with organizations and patients groups from the United States, Spain, and Latin America contribute to SENOSAYUDA’s perception as a transcendental NGO with a huge reach. As a measure of success, Bolivia’s proposes herself to make a positive impact on breast cancer mortality statistics, increasing productive year life rate,lost as a consequence of the disease. She hopes to become a cornerstone with the Institutions that give support in the country and to elevate awareness about breast cancer as a public health theme.
Right now, Bolivia Bocaranda is developing a pilot using social networks to capture information from vulnerable populations in the rest of the country,providing them equipment. Thanks to the support of volunteers she has managed to obtain information and contacts to better and earlier diagnosis.
Bolivia could involve a huge number of enterprises (COCACOLA, MRW, Banco Exterior, Farmahorro, DIGITEL, BANESCO, AVON) as well as Public organisms, Mayoralties and the National Congress with the Consensus Document.
Bolivia grew up in a family of women ahead of their times, like her grandmother, who used to held intellectuals meetings at home and taught her love for reading and volunteering. Then, Bolivia went to study from a school where she was the only girl to a catholic school. There, she started to do social work and became the class president and leader of the Students Center. Bolivia believes in the power of collaboration and the importance of an appropriate management and effort coordination to reach higher goals. She studied Industrial Relations at the UCAB and when she graduated, she moved to New York to get a degree at Columbia University.
When Bolivia was 13 years, her mother was diagnosed with thyroid cancer, and then she knew that her grandmother, Maria Luisa, died for ovary cancer. In 1994, at the age of 46 she had a late diagnosis. A year before that diagnosis, she got a breast exam that showed something abnormal, but she repeated the exam and it didn’t show anything. The next year, she discovered a malignant tumor. Bolivia attributes this belated diagnosis to bad calibration in the equipment in her second exam and to her own negligence not following her intuition that told her to do a third exam. Then, when she went to the doctor, technical language and lack of information about different treatments made her propose herself to do something and the idea was born with two of her friends that are also survivors, being Bolivia the leader on this cause, and who showed the biggest commitment.
Bolivia received on 1999 “Venezuela sin Límites” supports, organization of high recognition in the stimulation and support of entrepreneurship in Venezuela, which let Bolivia assemble her social entrepreneurship project. Then on 2000, she applied a week training program on the American Cancer Society University and shared with other different countries agents; there she received the bases of management of non-profit organizations. The American Cancer Society recognized Bolivia’s leadership capabilities and invited her to Washington to develop a program for Latin America, knowledge that she replicated to other countries across the UCCLAM. She also received training on 2004 in NBCC (National Breast Cáncer Coalition) in Madrid, about the scientific aspects of breast cancer and the importance ofpromoting-an incidence on policies.
Bolivia shows a great inner strength, in her organization there are women volunteers, most of them survivors with a life commitment, giving the best of them, but sadly some of them don’t survive. Bolivia feels each depart like her own, but that only makes her stronger to go on for those women who do survive, for those to come and for those that can prevent disease. Her experiences are so deep and strong that are expressedon her book “A Sostén Quitao ” (Without my bra) coming soon.