5) Description of health product/service offering: Each year, 200.000 children are born in the world with sickle cell anemia, of which 50% die before the age of 1. The main focus of this effort is to reduce mortality by sickle cell anemia in Brazil and in the world. • Socially organizing patients and family members to overcome victimization and the disease’s racial stigma. • Forming the Sickle Cell Anemia Association of the State of São Paulo – social organization and mobilization for public policies • Stimulating social organization of associations in other cities or states of the federation. • Producing the first educational and informational material in Brazil, such as primers, pamphlets, producing the first book on sickle cell anemia • Disseminating the topic and data with black social movements. Greater participation of black movements to effect public policies. • Obtaining the first Brazilian legislation (Law nr. 12.352/97) in the city of São Paulo • Broadening the same legislation to various cities and states in Brazil. • Federal legislation that includes early diagnosis of sickle cell anemia in the national triage program – 2001 – Instruction nr. 822 – approximately 1.7 million children benefited annually. • Health Ministry Instruction nr. 1.391/05 that establishes the Integral Care Program (Programa de Atenção Integral) to people with sickle cell disease and other hemoglobin diseases. • Purchase by Health Ministry of essential medication for 30.000 patients, filters to remove leucocytes and 500 infusion pumps – penicillin, folic acid, painkillers. • Creation in 2001, at the Association, of the first ambulatory nursing unit in sickle cell disease to support patients and family members with 250 patients registered. • Articulation with the Pan-American Health Organization and with the World Health Organization starting in 2002 – seeking to recommend a public policy for Latin America and the Caribbean. • Creating the network of social entrepreneurs in sickle cell anemia – comprised of 180 health professionals, social movements, family members and people with the disease that have been trained by myself as multiplying agents. • Achieving the Millennium Goal award with the project Sickle Cell Anemia – Social Organizations to reduce child mortality due to this disease. • In January 2006, the World Health Organization (WHO), in its 59th Assembly, recommends that sickle cell anemia be acknowledged as a public health issue. • Document sent to the Pan-American Health Organization 2006 – Brazil to cooperate in implementing the resolutions from the World Health Organization’s 59th Assembly. • 2006 – produce educational video about prophylactic actions in sickle cell anemia, destined to guide family members, health professionals and the community in general.

6) Description of innovation: Focus on people with this disease, which are largely black and poor, within a social, educational and political context that excludes the black population and how these factors prevail in bad prognosis of the disease and in early mortality. The idea is entirely innovative since there were no prior public policies. This work organizes efforts to care for people with sickle cell anemia as regards social practices of caring for sickle cell patients, qualified assistance to patients and family members, spearheads interventions in ongoing public policies, produces and disseminates health information. There is no institution in Brazil or the US or Cuba that has incorporated several intervention lines in the same social practice.

7) Operational model: It is an organization that works to promote health rights, support to patients and family members, public health, qualified assistance. People with sickle cell anemia are all in the low-income bracket, since the disease attacks mainly the black population, which in Brazil and in the world are at the base of the social pyramid, with little mobility. Our work is disseminated by the patients and family members and by the informational efforts we perform in the community, in hospitals and in schools. Our alliances are with the municipal and state public services, whose professionals forward patients and family members to the Association and to be attended at the ambulatory nursing unit.

8) Human resources: This initiative directly involves 5 people and indirectly involves 12 people and 220 people that comprise our network of social entrepreneurs in sickle cell anemia, all trained by myself in the multiplying agents’ training courses with 40 hours each. This network is comprised of health professionals of different categories, social movements, sickle cell anemia patients and family members. Association staff: 1 nursing assistant – works directly with the children and family members 2 sickle cell disease patients – support to families 1 administrative support – sets appointments, organizes return appointments, office tasks 2 nurses – carry out nursing consultations, take part in technical meetings and those for monitoring ongoing policies 1 administrative manager – takes care of all planning, communication, financial and administrative controls.

9) Key operational partnerships: Social Trade Service (SESC-SP) – since 1998 – reproducing the Association’s informational and educational material, SESC infra-structure for the 3 seminars held in partnership with SESC – non-governmental organization.

Genetics Institute – since 1994 – maintaining partner and logistical support Private institution

Boldrini Children’s Hospital – since 1997 – technical cooperation and participation in seminars and in monitoring public policies Hospital with Public Health System Agreement

Santa Marcelina House of Health Reference in hematological treatment, logistical support in hematology Hospital with Public Health System Agreement

Integrated Research Center for Onco-hematology in Childhood – UNICAMP Neonatal Triage Program for sickle cell disease Logistical support for case discussions

Adolfo Lutz Institute – since 1998 – participation in seminars, technical cooperation in laboratorial work – Public Institution

Hemoglobin Diseases Laboratory UNESP – State University of São Paulo Logistical support and in case discussions in the field of laboratorial diagnosis

Pan-American Health – International Organization – trilingual edition of the book sickle cell anemia guide for health and education professionals, Association website, seminars, courses – since 2001.

Health Ministry – Participatory Management Secretariat – since 2005 Funder of the course for training multiplying agents in sickle cell anemia

10) Financial Sustainability

          • Fees charged to clients?: x

          • How do you assure affordability?: People are not able to pay for the Association's services, even their participation is difficult because they don't have financial resources for transportation to the Association or even for medical care which in many cases means visiting four specialists per month.

          • Earned incomes as a percentage of operating costs: N/A

          • Other funding sources: During these years we prepared to be service providers. In the year of 2004, we obtained a contract with the Health Ministry to train multiplying agents in sickle cell anemia, this may become a path to sustainability in the future. As for the ambulatory nursing units part, there is no funding, agencies prefer to fund seminars, courses, book publishing, conferences, but they don’t fund the institutions that dedicate themselves to caring for people, improving their quality of life by means of a more positive relationship to the disease, adherence to medical treatment and social participation in the search for full citizenship.

          • Strategy for long-term sustainability: During these last 12 months, this part did not generate income. There are no funders interested in this topic, there are no laboratories or businesses interested in helping people with this disease. As the Directors of the Association are not economically nor politically powerful, our access to businesses and funders is more difficult. It’s also a topic with which agencies and companies are not too familiar, which makes it harder to analyze the projects we sent, and this happens even with public health services. We have structured our services so as to supply this need for the patients without becoming a burden to us. In this last year, we obtained support from the Health Ministry for the multiplying agents’ training course, and these resources are helping the Association’s organizational aspects.

11) Current and Future Impact

          • Total number of clients: Of the patients and family members that go to the Association, 99% earn less than 1,5 minimum wage. Impact on the life of those cared for by the Association – reduction in mortality, reduction in hospital readmittances, greater adherence to medical treatment, greater participation in the Association’s activities and in actions in favor of public policies, greater participation of teenagers and children in social and health activities held at the Association. An important aspect are the public policies that are being implemented by Brazilian government. Which consist of reorganizing care in hematological units, acknowledging people with sickle cell anemia in the Public Health System (SUS), which provides assistance in basic, medium and high complexity. From 2004 onwards, there were funds for caring for people with sickle cell anemia in the public service, for research projects, creating education centers on sickle cell anemia, treatment.

          • Clients in the past year: 10.000

          • Percentage of low-income clients: 99%

          • Impact: Governmental actions 1.700.000 newborns that had access to early diagnosis examinations 30.000 people that will have access to medication supplied by the governments 30.000 that will receive filtered blood, by means of the leucocytes-removal filters supplied by the Health Ministry 500 people that received the infusion pumps to remove iron from their organisms

Association actions - 2.500 people that had access to lectures, meetings, seminars, open classes 150 people that participated in the multiplying agents’ courses 200 patients and family members that participated in the association’s activities 80 children and youths Distributed material Sickle cell anemia primer – it’s our problem – 75.000 units distributed Sickle cell anemia – let us follow this path – 150.000 units distributed Book sickle cell anemia – let us follow this path – 2.000 units. Sickle cell anemia pamphlet – 20.000 units

          • Overall "market": In Brasil, the disease appears in 1/1000 in the general population, and 1/500 in afro-descendants. These values prevail with little variation in the Americas. In regions of Africa they can reach 1/50, with high mortality. Latin America and Caribbean, African continent, Arabic countries and India are the regions of greater prevalence. Although this disease is one of the oldest known to humankind and the genetic disease of greatest prevalence in the world, there are no public policies implemented, resulting in high mortality. The disease has no cure, people feel pains that range from medium to strong in intensity, and progressive impairment of several organs. If diagnosed early and medically treated with family support, these people can achieve good quality of life. In Brasil, the average lifespan is 18 years old, in the US it reaches 47. In the field of early diagnosis, which is a prenatal exam, this should occur in all newborns regardless of skin color or ethnic origin. There are millions of children each year. Medication such as penicillin, pneumococcus and anti-hemophile vaccines, blood transfusions, can ensure longevity and quality of life to these people.

12) Scaling up strategy

          • Stage of the initiative: Scaling Up stage.

          • Expansion plan: In a phase of international expansion Consolidation the ambulatory nursing unit and its expansion in Brazil. • ¿Cuál es su plan de expansión para los próximos tres años? Working in the centers in Colombia and Nigeria which are our own initiatives that need support, including financial, to become strong and become references in these countries for socially organizing these patients and families and for public policies.

Work on implementing resolutions from the 59th World Health Organization Assembly, which are an array of recommendations that need to be socialized and demanded from local authorities so that they can indeed become reality.

13) Policy change: That the member countries of the United Nations’ Organization, of which the body in charge of health is the World Health Organization, actually undertake the resolutions of the 59th WHO Assembly, which recommends that sickle cell anemia be understood as a public health issue and stimulates governments to implement health policies for early diagnosis, treatment and social support, observing and respecting cultural and ethnical differences of those afflicted with the disease.

14) Origin of the initiative: The initiative began in 1993, when I met a 10-year-old child with a recent diagnosis of sickle cell anemia. Upon caring for this family in the health center where I worked as a nurse, I realized my own and my health professional colleagues’ lack of knowledge about the different fields regarding the disease, its clinical gravity and the social and ethnical components that it involves. The lack of public policies aimed at this part of the population, the lack of statistical data. After this encounter, I began to follow this family’s search for health services. This revealed to me the disease’s complete invisibility and the need to create a public policy. So I began this work that combines racial/ethnical advocacy and the right to health. There is no one else behind this idea. The project began to grow as I got involved with the difficulties faced by people with the disease, as I acquired technical and scientific knowledge about it, as we began to know and organize the patients and to mobilize different sectors of society to join us in the quest for public policies.

Contact Information:
Berenice Assumpção  Kikuchi
Ashoka Fellow
Technical Director
Associação de Anemia Falciforme do Estado de São Paulo (Sickle Cell Anemia Association of the State of São Paulo)
(NGO)
Brazil
Website: www.aafesp.org.br