Clipping of news on Brazilian Culture, Law and Citizenship
03/01/2012
This article was translated by an automatic translation system, and was therefore not reviewed by people.
Most drugs not available in Brazil and must be imported
At least once a month, the Parana Bénie Bussmann, 37, needed to be hospitalized. The picture is intense pain in the abdomen and back, and nausea. The drugs relieve symptoms but do not prevent new crises. This routine has lasted five years. Bénie is one of Brazil who suffer from acute porphyria, a rare disease caused by deficiency of an enzyme related to hemoglobin.
Benie suffered the first attack of porphyria - a hereditary disease - 15 years of age. However, the diagnosis was only confirmed for eight years. No one knows for sure how many people worldwide have porphyria. It is believed that one in five people in every 100 000 inhabitants can develop some kind of metabolic disorder. In Brazil, the estimate ranges from 1.900 to 9.500 people.
The underreporting and the fact does not affect many people in comparison to other diseases cause rare diseases to be unknown even the doctors themselves, resulting in delayed diagnosis or mistaken. In some cases it can take 20 years to the realization that a person suffers from a rare disease. In a crisis, Benie mind that the pain was so intense that a doctor wanted to subject her to surgery.
Due to porphyria, Bénie says he has no energy to do so many activities and points out that constantly has to take medicine to control pain. It prevents some types of medication such as analgesics, which are springboards for a real crisis. "I feel weak, the arm and shakes are twinges of pain. I can not even take a sip of water already feel nauseous, "he says.
In the most critical moments, must be hospitalized for several days away from work educator in public schools in Curitiba. Besides the pain, still have to deal with the prejudice against the disease. "Once, a colleague gave a hint that I would not work just because of a stomach ache," says Bénie, who is vice president of the Association of porphyria.
The changes of habits imposed by the disease also affected the personal life of a pedagogue. "He's ex-husband found with me the disease and could not cope. I do not think he realized dealing with the person I became. "
In World Rare Disease Day, commemorated on Wednesday (29), Bénie and other Brazilians call attention to the difficulties facing an illness that almost nobody knows. Among them are the lack of doctors, laboratories and specialized hospitals and the high cost of treatment - most remedies not available in Brazil and must be imported.
"It is absolutely necessary awareness of the medical profession and the general population about the symptoms and treatment," says Raquel Martins, president of the Brazilian Association of Patients with Hereditary Angioedema - a genetic disease that causes swelling in various parts of the body, including the larynx .
To access the medication, many patients have resorted to the courts. Only in 2011, the Ministry of Health disbursed R$ 167 million to meet the 433 lawsuits that determined the purchase of medicines for people with rare diseases.
Three years ago, the federal government launched the National Policy for Integral Attention in Clinical Genetics with the goal of creating a network of assistance for people with rare diseases, including genetic counseling centers. According to the Ministry of Health, the obstacle is that there are 5000 genetic changes that may lead to these diseases. Most of them have no cure and no treatment with proven efficacy, and medicines used to relieve symptoms, according to the folder.
Currently, 80 hospitals are equipped for clinical genetic consultations and performed more than 71000 calls last year. Expenses for laboratory tests and consultation amount to about R$ 4 million per year, according to the federal government. There are already protocols with guidelines for indications of drugs and tests by the National Health System (SUS) to 18 types of rare diseases.
In the assessment of bodies representing patients with rare diseases, care must be tailored on the specific demands. "The creation of a referral center for genetic diseases with special attention, special treatment, family-oriented and trained professionals would be a good thing. There is something so impossible to do, charges "Valerio Oliveira, president of the Brazilian Association of People with birthmarks and Lifangiomas - a vascular malformation that results in red patches on his face.
Source: R7 News
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This article was translated by an automatic translation system, and was therefore not reviewed by people.