Bolsonaro government incinerated high-cost drugs – 03/15/2023 – Health

The Jair Bolsonaro (PL) government incinerated drugs used to treat rare and high-cost diseases, valued in all at least R$ 13.5 million.

There are two doses of Spinraza on the list of lost items, each purchased for R$ 160,000 by the federal government. Used for patients with SMA (spinal muscular atrophy), the therapy is one of the most expensive in the world.

Patient associations say the lost stock shows mismanagement by the Bolsonaro government. The lack of treatment can lead patients to death, say the same entities.

Data on Ministry of Health products incinerated since 2019, at the beginning of the Bolsonaro administration, were obtained by Sheet via the Freedom of Information Act. The same material shows that, until the beginning of this year, the portfolio let 39 million vaccines against Covid-19 expire.

Excluding Covid vaccines, data shared by Health points out that products valued at BRL 214.2 million have already been discarded since 2019 (a value that includes immunizers against other diseases). Other inputs, worth more than R$ 38 million, are still in the incineration queue.

Among the lost items are vaccines of various types — against measles and rubella, pentavalent, hepatitis and triple viral —, in addition to drugs against cancer, hepatitis C and other diseases.

Tests and medicines for people living with HIV, valued at R$ 8.5 million, were also destroyed.

The Bolsonaro government presented care for rare diseases as one of its flags. In 2021, the Ministry of Health launched the new SUS mascot, identified as Rarinha, in a ceremony with the then First Lady Michelle Bolsonaro.

Among the drugs for rare diseases, 949 units of Translarna, a product used for patients with Duchenne muscular dystrophy, which causes progressive muscle degeneration, were discarded. These lots cost R$2.74 million in total.

Data on Health stocks had been kept secret since 2018. At the end of February, the CGU (Controladoria-Geral da União) recommended a review of this reserve. The folder commanded by Nísia Trindade released, for the time being, the list of discarded products.

“Seeing this list of discarded drugs is extremely disappointing, as we go through many difficulties for the patient to receive treatment”, says the vice-president of the Vidas Raras institute, Amira Awada.

She also says that the Judiciary is “disrespected” with the loss of products, as many treatments are purchased by the SUS after court decisions.

“We are talking about degenerative diseases, which can lead the individual to death without the medication at the right time. In treatments with continuous use, there is always a worsening of the disease with the interruption, and this worsening is not recovered”, said Awada. .

The data presented by the Ministry of Health do not allow us to state that all products were discarded because of the end of validity. In some cases, drugs may have failed quality control tests or become unusable because of incorrect storage.

Members of the Luiz Inácio Lula da Silva (PT) government claim, however, that most of the inputs were incinerated after the expiration date. In addition, they say that other products may be expired in stock and will still be sent for disposal.

The federal government also incinerated drugs for different types of mucopolysaccharidosis, valued at around BRL 2.9 million.

This type of disease can cause limitations in joints, respiratory and heart problems, hernias, among other difficulties, in addition to leading to premature death.

Moysés Toniolo, representative of Anaids (National Articulation for the Fight against AIDS), says that there are drugs used by children living with HIV among the discarded items, in addition to high-cost products.

“The drugs are fundamental. It is a very serious case that needs to be taken to the authorities for administrative, civil and criminal penalties. I am sorry that we only now became aware of this document”, he said.

President of Febrararas (Brazilian Federation of Rare Disease Associations), Antoine Daher said that the entity proposed to the Bolsonaro government mechanisms to improve the distribution of medicines, for example, redistributing bottles that were not used.

“We made the proposal, and unfortunately the ministry, after applauding the idea, didn’t go ahead with it,” said Daher, who is the father of a patient with Hunter syndrome.

“I call it a disaster. High-cost medicines being thrown in the trash, with patients dying, needing treatments. It’s not for lack of warning. It’s lack of responsibility for people’s lives”, said Daher.

In a note, the Ministry of Health said that the “waste scenario” of vaccines, medicines and other inputs “reflects the neglect of the previous government”.

The folder said that the Bolsonaro government did not share data on products stored before the inauguration. He also said that he seeks to adjust these stocks, in addition to an “agreed solution” with states and municipalities to avoid further losses.

Former Minister of Health Marcelo Queiroga stated that he does not have data on stocks and that this information is under the care of the technical areas.

Already Luiz Henrique Mandetta, first minister of Health in the Bolsonaro government, said that during the period in which he commanded the portfolio, there was an effort to adapt the management of stocks, by transferring products from warehouses in Rio de Janeiro to a center in Guarulhos, in Greater São Paulo. .

He also said that many purchases are made by estimating demand, such as in vaccination campaigns, and that use depends on the population’s adherence.

Wanted, the current federal deputy Eduardo Pazuello, who was also Minister of Health in the Bolsonaro government, did not speak out.

Loss of high-cost drugs

Therapies serve for rare diseases and were incinerated

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Treatment: Duchenne muscular dystrophy

Units incinerated: 949

Amount: BRL 2.74 million

Betagalsidase

Treatment: Fabry disease

Units incinerated: 259

Amount: BRL 2.46 million

Eculizumab

Treatment: paroxysmal nocturnal hemoglobinuria

Units incinerated: 127

Amount: BRL 1.73 million

Vimizim

Treatment: mucopolysaccharidosis IVA

Incinerated units: 632

Amount: BRL 1.61 million

galsulfase

Treatment: mucopolysaccharidosis VI

Units incinerated: 283

Value: BRL 1.24 million

Alfagalsidase

Treatment: Fabry disease

Units incinerated: 272

Value: BRL 1 million

Metreleptin

Treatment: Berardinelli-Seip syndrome

Units incinerated: 47

Amount: BRL 1.1 million

idursulfase

Treatment: Huner’s Syndrome

Units incinerated: 186

Value: BRL 985 thousand

Nusinersen (Spinraza)

Treatment: spinal muscular atrophy (SMA)

Incinerated units: 2

Value: BRL 319 thousand

Nitisinone

Treatment: hereditary tyrosinemia type 1

Units incinerated: 1,200

Value: BRL 229 thousand

Alemtuzumab

Treatment: multiple sclerosis

Incinerated units: 2

Value: BRL 56 thousand

Kanuma

Treatment: acid lipase deficiency

Units incinerated: 1

Value: BRL 23 thousand

Total: BRL 13.5 million