Help fight Sickle Cell Anemia in Bahia, Brazil!

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Help fight Sickle Cell Anemia in Bahia, Brazil!

On January 15, 2004 I received an email from Italian medical doctor Angelo Campione, who had just visited my web site. Angelo (Dr. Campione), who specializes in endocrinology and cardiology, was moved by the poverty he encountered on an earlier visit to Brazil and had decided to return to Bahia to offer (free) medical exams.

Shortly after Dr. Campione's arrival in Bahia we met with the founder and the cultural director for Projéto Didá. During our discussions we learned of a high prevalence of anemia among children enrolled in the program. Soon after, I spoke with a blood specialist at the federal university and discovered that there is an unusually high local incidence of hemoglobin sickle cell gif disorders, including Sickle Cell Anemia. These disorders disproportionately affect people of African ancestry and, With the exception of only Nigeria in Africa, Brazil has the greatest number of people of African ancestry in the world. Salvador, Bahia, is the most predominantly Black community in Brazil.

As is true with many maladies affecting the poor, hemoglobin disorders in Bahia, and especially Sickle Cell Anemia (graphic from http://www.fda.gov/fdac/features/), represent another brick in the wall of health deficiencies, the cumulative impact of which contributes to a sense of despair that permeates life on the margins of Brazilian society.

The federal university in Bahia is working to implement new treatment strategies and is conducting studies for treating with Hydroxurea, a powerful drug used to treat both Sickle Cell Anemia and cancer. This drug, and other drugs, are expensive here. I worked with my contact at the federal university, Dr. Marilda Gonçalves, to compose the following appeal in March of 2004. If you are reading this gallery you can be sure that either a response has not been forthcoming, or more help is needed. We hope for your speedy reply to one of the email addresses listed in the appeal below.

Appeal

Dear Readers,
The high prevalence of sickle cell disease and other genetic hemoglobin disorders represents an important public heath problem among children in Brazil. The correlation of high incidence of sickle cell and related hemoglobin disorders to African populations is well established. Brazil accounts for more people with African ancestry than any nation in the world save one in Africa. The state of Bahia and its capital city, Salvador, were the major point of disembarkation for African slaves and this area remains the most genetically Africanized in Brazil.
The early detection of variant hemoglobin disorders through neonatal screening is vital for reducing mortality rates and avoiding severe clinical outcomes. In California, the implementation of a neonatal screening program for hemoglobin disorders has achieved impressive results.
We at the Federal University in Bahia have established a committed research team, publishing many papers, and have created multifaceted study and treatment programs involving patients with sickle cell disease and others hemoglobin disorders. Our dream is that as a result of research conducted at centers like our own, we will one day be able to reduce or eliminate these disorders through evolving gene-replacement therapies.
We’ve developed a community follow-up program in cooperation with the Blood Center of Bahia (HEMOBA), the Faculty of Pharmacy, Federal University in Bahia, and FIOCRUZ (The Oswaldo Cruz Research Foundation). This collaboration has produced clinical and laboratory diagnostic procedures for targeted population groups. We’re already treating about 900 children (out of a total population of 2,000 patients) for sickle cell disease at our out-patient clinic.
I’m certain you can appreciate the seriousness of these disorders. Depending on clinical manifestations involved, blood transfusions are sometimes required to alleviate anemia and increase hemoglobin concentration. Children with the disease frequently suffer from infectious diseases, mainly pneumonia.
While we naturally attend to patients of all ages, we at the Federal University here in Bahia want to develop programs specifically tailored to the early diagnosis and treatment of sickle cell and hemoglobin disorders among children in Brazil.
At this time we would like to solicit your interest and, we hope, your help in our clinical and therapeutic initiatives relative to the treatment of children in Brazil suffering from genetic hemoglobin disorders.
Most respectfully,
Marilda de Souza Gonçalves

Faculdade de Farmácia e Bioquímica
Universidade Federal da Bahia
Avenida Barão de Geremoabo, s/n, Campus Universitário de Ondina
Salvador-Bahia- Brasil CEP 40.000-000

angelo Photo: Italian physician Dr. Angelo Campione samples blood from the mother of a program participant at Projeto Didá in Salvador, Bahia, Brazil. Read about Didá in my "Social Programs in Brazil" gallery.

Email contacts: Phillip Wagner at pwagner@iei.net and Dr. Marilda Gonçalves at mari@cpqgm.fiocruz.br

NEEDS LIST

MEDICATIONS AND HEALTH SUPPLEMENTS

Vaccines, mainly pneumococcus, and antibiotics (penicillin is the most important) to eliminate the risk of immediate death and to decrease the high rate of mortality during the lifetimes of these children.
Stocks of newly available medications used to alleviate the suffering of patients in pain crisis and reduce fever, and other newly available medications that can increase fetal hemoglobin levels and which, in several studies conducted in the United States, have been demonstrated to decrease sickle cell crisis are needed.
Folic acid to increase the globin chain (globin is the polynucleotide chain present in hemoglobin molecules) production and to stabilize the hemolytic anemia process resulting from Vitamin B12 and folic acid deficiency related to red blood cell destruction.

DIAGNOSTIC TEST KITS AND EQUIPMENT

We need High Performance Liquid Chromatography test kits. These are required for laboratory diagnosis requires, but this very important test is prohibitively expensive here in Brazil.
We have great need for Doppler Ultrasonography and Magnetic Resonance Imaging (MRI) Scanners to make early diagnosis of stroke and neurological manifestations.

FUNDING AND COLLABORATIONS

Research-specific funding is needed to conduct long-term studies of African-Brazilian children, our most important target study population. We have been approached by an established social program in Salvador, Bahia serving this target population, requesting our assistance to address the high incidence of genetic hemoglobin disorder based anemia among program participants.
Our greatest need is funding for a Children’s Sickle Cell and Hemoglobin Treatment and Research Center in the city of Salvador. This would be a place where children could be brought to when they are in crisis and have urgent need of expensive medications or require blood transfusions. An especially important aspect of our ability to study and gain control of these disorders is to be able to bring them all to one location where they can be effectively treated by a staff of qualified medical personnel with training specific to these disorders.

"UFBA" graphic from http://www.universiabrasil.net

The background gif for this page courtesy of http://www.ccc.commnet.edu/gif/backgrounds.

Text colors were identified at http://www.lynda.com/hexv.html.

This page was created on 13 February 2004 and last updated on 3 April, 2004 by Phillip Wagner