Diagnosed with multiple sclerosis, Ylezita Flores (featured photo), 45 years old, is tormented by the lack of medicines to treat the disease in high-cost pharmacies in the Federal District. Without proper care, little by little she began to lose her ability to speak. According to the Department of Health, there are approximately 300 patients who depend on the medicine in the Brazilian capital. The shortage, however, affects many more patients, as it is in short supply across the country.
Flores migrated from Venezuela to the DF 7 years ago. Unable to buy Natalizumab, a drug that prevents outbreaks and slows the progression of multiple sclerosis, he depends on the High Cost Pharmacy. Each box of medicine costs an additional R$10,000. For a month now, Ylezita has not been able to obtain new doses and the worsening of the disease is clear.
“The only information given to us is that it is out of stock. These conditions are harming many people in Brasília and Brazil. It delays our treatment. My tongue started to feel heavy. I can’t speak properly. It’s horrible. I can’t wait too long. Other people don’t either. We need help”, complained Flores.
Géssica de Oliveira, 34, is also diagnosed with multiple sclerosis. For the patient, the shortage is the result of a lack of planning in the SUS. “It’s an absurd. A total lack of organization. There are a number of people registered, registered to receive the medication. They have the information people need. There has to be a schedule. It can’t wait for it to end,” she said.
According to Géssica, the medication must be used continuously as there is no cure for the disease. Furthermore, in the case of Natalizumab, there is a rebound effect, in the case of stopping treatment, which makes the symptoms return even more aggressive.
According to the president of the Association of People with Multiple Sclerosis (Apemigos), Ana Paula Morais, in DF, 1,200 people are diagnosed with the disease. Of this total, 70% receive treatment through the local Unified Health System (SUS). But, as the shortage also affects other units of the federation, the lack of the medicine directly or indirectly compromises approximately 30 thousand patients diagnosed with multiple sclerosis in Brazil.
“Multiple sclerosis is a serious disease that progresses quickly when treatment is not carried out effectively. Unfortunately, we have frequently experienced shortages. It was absent in 2018, 2019 and 2022. It has been recurring”, lamented Ana Paula. Natalizumab is purchased by the Ministry of Health and passed on to state health departments.
No alternative
As a rule, Natalizumab is a medication with good results and a low rate of adverse effects. However, some patients’ bodies reject the treatment. To replace it, there is Alemtuzumab. However, the alternative medicine is also unavailable in DF. According to Apeamigos, the Department of Health would not have requested stock replenishment in time. Officially, 30 patients are registered to receive the alternative treatment.
The Ministry of Health informed that the delivery of the drug Natalizumab to the DF Health Department is scheduled for this Friday (10/5). “It is reinforced that the department has made efforts to maintain its commitment to supply and deliver the approved quantities to the State Health Departments and the Federal District in their entirety”, highlighted the ministry.
The Department of Health denied the lack of Alentuzumab and confirmed that the Ministry of Health is completing the acquisition of new batches of Natalizumab.
Read the secretariat’s full response:
The Health Department of the Federal District clarifies that, regarding the drug “Natalizumab”, it is purchased and supplied to the Federal District by the Ministry of Health. Currently the DF has 268 patients registered for the drug.
We inform that SESDF maintains constant contact with the Ministry of Health, and in recent contact to monitor medication stocks, the Ministry of Health informed that it is in the final contractual phase for subsequent receipt of the medication and distribution to the states.
We have our teams at the three High Cost Pharmacies in DF (Asa Sul, Gama, Ceilândia) available for any additional information.
As for the drug “Alentuzumab”, the Health Department of the Federal District clarifies that this is acquired and supplied to the Federal District by the Ministry of Health.
We inform that SESDF maintains constant contact with the Ministry of Health, and in a recent contact to monitor medication stocks, the Ministry of Health informed that it is awaiting receipt of the acquired stock for subsequent new distribution to the states.
Treatment is annual. We have 30 active patients and still medicine in stock. We are with our teams at the three high-cost pharmacies in the DF (Asa Sul, Gama, Ceilândia) for any additional information.
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