SUS will provide the most expensive medicine in the world; find out what it is and how much it costs

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SUS will provide the most expensive medicine in the world; find out what it is and how much it costs

The confirmation was made by the Minister of Health Marcelo Queiroga last Saturday (3)

The most expensive medicine in the world will be incorporated into the list of medicines made available by the Unified Health System (SUS), according to Marcelo Queiroga, Minister of Health. The news was confirmed last Saturday (3), after the National Commission for the Incorporation of New Technologies in Health (Conitec) issued a favorable opinion.

It’s about medicine Zolgensmaused to treat spinal muscular atrophy (SMA), a rare and degenerative disease passed from parents to children. The medicine costs approx. BRL 7 million🇧🇷

Read more: Muscle weakness and difficulty breathing may indicate Pompe disease

Although the disease can affect people of all ages from birth, Conitec’s recommendation is that the drug be applied in children up to six months with AME type 1who spend more than 16 hours a day without the need to use invasive ventilation methods.

“This is a fight for many parents and for all of us. Glad to give such an important answer. AME is a very rare, degenerative disease that affects the motor neuron, responsible for vital voluntary gestures for the human body, such as breathing, swallowing and moving”, wrote Queiroga in his Twitter profile.

What is AME and the struggle of parents for the most expensive medicine in the world?

Spinal Muscular Atrophy is a rare disease that causes progressive muscle weakness, affecting the ability to walk, eat and, in some cases, breathe. To lead a normal life, patients need Zolgensma, the most effective drug for the treatment, but also the most expensive in the world.

In addition to value, another problematic issue with the remedy is that it can only be taken up to a maximum of two years of age – and, according to experts, its effectiveness is greater up to six months of age.

Therefore, while the medicine is not made available by the SUS, parents of patients with the disease are fighting against time to be able to buy the medicine. This is the case of little Bianca’s parents, whose story we have previously told in MinhaVida.

Know more: Most expensive medicine in the world: family makes “crowdfunding” online to help daughter with rare disease

Fernanda Campos and Raul Calhelha, after discovering the diagnosis of their daughter, who is now four months old, started an online crowdfunding campaign to raise the necessary amount to purchase the medicine. “This is the only treatment that can really guarantee an excellent quality of life for Bianca,” the family explained in an Instagram post.

According to scientific studies, Zolgensma is capable of reversing more than 90% of cases of AME. However, it does not recover the neurons that have already died and, therefore, it is unable to eliminate all the symptoms already manifested. Therefore, even after applying the medicine, patients should continue with rehabilitation therapies to improve movements, such as physiotherapy, speech therapy and occupational therapy.

Little Bibi’s full story can be found at baby profile on social media🇧🇷 The virtual crowdfunding can now be accessed clicking here🇧🇷 In addition, anyone who wishes can make a pix, of any value, to [email protected]

Content for educational purposes only. Consult a Doctor.

The translator user relied on the following source:

Minha Vida Website – REF99827

Disclaimer – (English version>) This content has been prepared based on information from research, additional publications, or the translation/verification work of a volunteer editor of this web council. This is a non-profit service. It is strongly recommended that all details and information published be carefully verified. We never allow medication recommendations, medication package inserts or any medication guidance. We never allow partisan politics as information.

Isenção de responsabilidade – (versão em português): Este conteúdo foi preparado com base em informações de pesquisas, publicações adicionais ou no trabalho de tradução/verificação de um editor voluntário deste conselho web. Este é um serviço sem fins lucrativos. É altamente recomendável que todos os detalhes e informações publicadas sejam verificadas cuidadosamente. Nunca permitimos recomendações de medicamentos, bulas ou qualquer orientação sobre medicamentos. Nunca permitimos a política partidária como base para checagem. Para mais informações, leia nossos termos.

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