He insisted, he pestered, he begged. Elvis Magalhães, 21 years old, would not give up. He was hospitalized at the Hospital Universitário de Brasília (HUB) because of sickle cell anemia, and he would not leave the doctor alone until she allowed him to go to the concert of his favorite band, Legião Urbana, on that June 18, 1988 (a 35 years), at the Mané Garrincha Stadium, with around 50,000 people. But the performance ended in confusion and ahead of schedule. The young man from Goiás based in Brasilia, and with the name of a rock star, left in a huddle. He was afraid. In addition to the situation, he felt the pain in his body caused by the disease. But he doesn’t regret it. “It wasn’t even time, wasted. We are so young”, sang Renato Russo to Elvis’ joy. Elvis also wanted to sing, have fun. “The music of my life is that. Those who believe always achieve” (Again, from Legião Urbana)”. In addition to memories of that show, June became a strong month for him for another reason. The 19th would become, from 2008 onwards, the world awareness day on sickle cell disease. June became the month of singing louder. Elvis makes the sound go far against racism (most patients are black) and also the invisibility that, according to him and other people consulted by Agência Brasil, compromises care in the public system. The activist and scientific coordinator of the National Federation of Associations of People with Sickle Cell Disease (Fenafal) was the oldest patient in Brazil to receive a bone marrow transplant to cure the disease. Sickle cell anemia has a hereditary characteristic (it can pass from parents to children, if both parents have the trait of the disease). It occurs because of a genetic mutation, with the change in the shape of red blood cells (half-moon or sickle shape). This causes a problem in the production of haemoglobin, the protein that gives blood its red color and is responsible for transporting oxygen throughout the body. The disease occurs due to vascular lesions and coagulation abnormalities. Among the symptoms, severe body aches and fatigue. Transplant Today, at 56, the former watchmaker says he never stopped believing and insisting for himself, and also for other people, to fight against the disease that causes severe pain and can lead to death. After “hundreds of hospitalizations”, he was cured thanks to a bone marrow transplant (he later also had to receive a liver). Elvis calls for public policies and denounces that the disease is made invisible by structural racism. “The disease was diagnosed more than a century ago and public policy only advanced in 2005”, he says. Impact Doctor Joice Aragão de Jesus, coordinator of Blood and Blood Products at the Ministry of Health, also understands that the history of care for the disease shows that the problem has not received the attention it deserves, given that the patients are from the black population and are more vulnerable. . “Institutional racism is a subtle process in the Brazilian population. This also has an impact on the quality of care provided to this population”. She says that until 2005 there were no protocols in the Unified Health System (SUS), with guidance on treatments. “That year, the first ordinance was published creating the National Policy for Comprehensive Care for people with Sickle Cell Disease”. From then on, care treatment protocols were established in the blood center network. “From 2005 to 2015, there was participation and holding of international and national symposiums. So the disease gained more visibility within the emergency department of hospitals, and in outpatient clinics”. She considers that, in recent years, there has been a deactivation of public policies and less training and research activities. “In fact, there is an impact not only due to the pandemic. There was a slowdown in activities related to public policies”. The doctor says that the current program is a reference as a quality policy within the SUS. “We had an international projection in cooperation with countries in Africa, for example (read more about the topic here). Now, we are resuming. Science has enabled an improvement in the quality of life. We changed the natural history of the disease, which was to die before the age of five”. Little disclosure Social scientist Maria Renó Soares, coordinator of the National Federation of Associations of People with Sickle Cell Disease (Fenafal), who lives in Belo Horizonte (MG), regrets the low visibility of the disease. “Even though it is the most prevalent hereditary disease in Brazil, little is said about it. Because it is prevalent in the black population, it is little publicized. We still have a lot of difficulty accessing treatment. And this is due to racism”, she evaluates. She explains that there are an estimate of more than 100,000 people with the disease – “95% of people with the disease are black and most are Bolsa Família beneficiaries. The greatest difficulty is access to treatment, medications, new technologies. Especially with regard to urgency and emergency”. The social scientist regrets that mortality from the disease in Brazil is still very high. “There is a survival of people of up to 42 years and the death of more than 30 thousand people per year in Brazil, which could be avoided if they had access to adequate treatment”. One of the drugs used is hydroxyurea, which is expensive and must be distributed by public authorities. The coordinator of Fenafal says that an important demand is the authorization for the Ministry of Health to authorize the medicine already fractionated for the child, in order to avoid the wrong manipulation of the medicine from the same medicine given to the adult. An important public policy was the possibility that the Guthrie Test could make an early diagnosis. This can save the child’s life as treatment can begin. Transplant indication In Elvis’ case, his parents discovered the disease when he was still a child. He lived with indefinable pain and countless lengthy hospitalizations. The problem was only solved with a bone marrow transplant. He was one of the first cases in Brazil. “I was nominated because I had a lot of pain crisis. In 2005, he underwent the procedure at the Faculty of Medicine of the University of São Paulo, in the city of Ribeirão Preto (SP). To perform the transplant, he discovered that his brother, Elder, four years younger (who did not have the disease) was a 100% match. Currently, the scientific coordinator of the patient entity with the disease explains that the procedure has been done with up to 50% compatibility between patient and donor. Elvis was 38 years old when he underwent the procedure to put an end to the crises in which he even needed morphine to ease the pain. Another therapy the watchmaker discovered was writing. He wrote an autobiography: Four Decades of a Waning Moon. Special pages are dedicated to the brother. “I never fought with him in my life. Always been a friend. I was sure he was a match.” The brother, Elder, knows that Elvis would do the same for him if needed. “It was exciting when I found out I could help him.” In the Federal District, for example, the blood center registered, during the year 2023, 26,510 blood donors. Already the people registered in the bone marrow donor bank. there were 1,283 people. It is up to the blood center “to supply all the necessary blood components for the transfusions required in the treatment of patients with sickle cell disease”. Fundação Hemocentro explains that the candidate for donation can collect blood and register as a bone marrow donor on the same day. “In this case, just schedule the donation and, on the day of the service, inform in the first step that you also want to register as a bone marrow donor”, clarified the entity in a note. Early diagnosis If Elvis is into rock, the public servant from Paraíba Dalmo Oliveira, 56 years old, born in Guarabira and based in João Pessoa, enjoys forró and the São João festivities, which take place at this time of year mainly in Campina Grande (PB). ). He is from the Paraiba Association of Hereditary Anemia Carriers and was diagnosed with the disease when he was a child. “We only found out because my mother took me to do tests in João Pessoa. I was lucky that the diagnosis was very early for that moment. And that saved me and gave me a quality of life until today”. Treatment was limited to blood transfusion. Remember that he had to undergo a blood transfusion until he was 15 years old. The seizures decreased as he got older. And he later decided to help people who understood little about the disease. “As the disease affects the black population more strongly, negligence still exists today. In Brazilian states where the black population is more present, the disease is also more present. Even so, we still find uninformed doctors and nurses without knowing how to treat the patient who arrives at the unit”. He says he charges a lot of medical authorities to provide and raise awareness about genetic counseling for couples who intend to have children. of having a child with the disease”. Dalmo has five children. None of them have sickle cell anemia. Events in Brasilia To provide more knowledge about the disease, the Ministry of Health promotes, this Monday (19th), in Brasilia, four lectures, from 9am to 12pm, with health professionals who are specialists in the subject. The meeting will take place at the PO 700 auditorium, on Avenida W5. On the 22nd (Thursday), at the same location, Fenafal’s coordination promotes a national seminar, from 1 pm to 5 pm, and a public hearing in the Senate, in the morning (from 9 am). The telephone number for information is (31) 99199.6985.
Agência Brasil
Folha Nobre - Desde 2013 - ©