Patients with rare diseases fight to have access to treatment
Groups representing patients with rare diseases mobilized around of a judgment in the Federal Supreme Court (STF) to demand the treatment and costing of medicines for their diseases. The decision that can change the lives of family members and patients with rare diseases will occur on September 28th. The aim is to provide high-cost medicines that are not available on the Unified Health System (SUS) list and also medicines that are not registered with ANVISA.
The General Lawyers of the Union claim that judicial decisions involving expensive medicines can destabilize the health system. The Brazilian Association for Mucovisthiosis Assistance (ABRAM) wants to provide ministers with defense documents with data not only on mucoviscidosis, known as cystic fibrosis, a genetic disorder affecting the lung and digestive system, but also with information from other associations which represent patients suffering from rare diseases.
According to Abram, the treatment of cystic fibrosis costs about R $ 30,000 per month - only one drug would cost R $ 6,000 per month. The association justifies that many people die while waiting for a registry of Anvisa, arguing that non-experimental drugs registered by agencies such as the US Food and Drug Administration (FDA) may be required through Justice in Brazil. Volnei Garrafa, coordinator of the Une Bioethics Graduate Program, states: "If the public system did not approve the drug, it does not have to be released, the FDA is American, we are in the Federative Republic of Brazil. FDA does is good for Brazil. "
The Attorney General of the Union, Grace Maria Mendonça, affirms that state resources are limited, but that they are not disregarding the serious situations that affect the Brazilian citizen, but that
In a letter to the FTS, the mother of a child with mucopolysaccharidosis (an inherited metabolic disease) reveals: "To revoke the right of the citizen to have a treatment the dignified and extremely important to the continuity of life, is the same as enacting the death penalty. "
Sexual problems are becoming more frequent among women. According to a US study, which involved more than 30,000 participants and was published in the Journal of Obstetrics & Gynecology , about 40% of women have sexual dysfunctions. They take different forms, such as lack of sexual desire, decreased arousal, inability to achieve orgasm and pain during sex.
November is the month of male health awareness, better known as November Blue. Among the diseases that most concern the male population is prostate cancer, the most incident tumor among Brazilian males. There are 60,000 new cases estimated annually, according to the National Cancer Institute (Inca). In this scenario, it is extremely important to perform the exams and follow up with the doctor, especially those who are in a group at risk for the disease.