SAO PAULO (AP) — A 4-year-old boy had trouble keeping his balance as he walked across the living room. His mother's eyes watched his every move carefully. Then a seizure struck and he fell to the ground, the dull thud of his small body echoing throughout the house.
Maria Aparecida Carvalho holds marijuana buds that she grows for medicinal purposes in the backyard of her home in Sao Paulo on Wednesday, July 10, 2024. (AP Photo/Andre Penner) Janaina Silva caresses her 4-year-old son Murillo after an epileptic seizure Monday, July 8, 2024, at his parents' home in Guaruja, Brazil. To do this, Silva ingests a certain amount of liquid cannabidiol, or CBD, which he obtained for free through São Paulo State Public Health. system. (AP Photo/Andre Penner) Janaina Silva cares for her 4-year-old son Murillo, who is having an epileptic seizure, at his parents' home in Guaruja, Brazil, on Monday, July 8, 2024. Silva obtained a certain amount of liquid cannabidiol, or CBD, for free through the São Paulo state public health system. (AP Photo/Andre Penner) Janaina Silva watches over her 4-year-old son Murillo after an epileptic seizure on Monday, July 8, 2024, at his parents' home in Guaruja, Brazil. To reduce and shorten the seizures, Murillo said Silva obtained a certain amount of liquid cannabidiol, or CBD, free of charge through the state of Sao Paulo's public health system. (AP Photo/Andre Penner) Janaina Silva administers cannabidiol, or CBD, to her 4-year-old son Murillo after he has an epileptic seizure at his parents' home in Guaruja, Brazil, on Monday, July 8, 2024. To shorten his seizures, Murillo takes a steady dose of CBD. Silva is getting it for free through São Paulo state's public health system. (AP Photo/Andre Penner) Janaina Silva smiles at her 4-year-old son Murillo, who has severe epilepsy, at her parents' home in Guaruja, Brazil, on Monday, July 8, 2024. To reduce and shorten the attacks, Murillo said Silva regularly takes liquid cannabidiol, or CBD, free of charge through the São Paulo state public health system. (AP Photo/Andre Penner) Murillo, 4, suffers from severe epilepsy. Monday, July 8, 2024, watching TV at my grandparents' house in Guaruja, Brazil. Murillo is taking certain doses to reduce and shorten his seizures. Liquid cannabidiol, or CBD, was obtained by the mother in the background for free through the state of São Paulo's public health system. (AP Photo/Andre Penner) Janaina Silva tears up during an interview while talking about her 4-year-old son Murillo, who suffers from severe epilepsy, at her parents' home in Guaruja, Brazil, on Monday, July 8, 2024. To shorten his attacks, Murillo takes a steady dose of liquid cannabidiol (CBD), which Silva obtains free of charge through São Paulo state's public health system. (AP Photo/Andre Penner) María Aparecida Carvalho speaks during an interview while standing next to the marijuana plants she grows for medicinal purposes in the backyard of her home in Sao Paulo on Wednesday, July 10, 2024. (AP Photo/Andre Penner) María Aparecida Carvalho sits with her daughter Clarian in her backyard next to a marijuana plant that Carvalho grows for medicinal purposes on Wednesday, July 10, 2024 in Sao Paulo. On Wednesday, July 10, 2024, Clarian was diagnosed with Dravet syndrome, a severe form of epilepsy, at the age of 10. It can cause cardiopulmonary arrest and sudden death. (AP Photo/Andre Penner) Maria Aparecida Carvalho administers liquid cannabidiol, or CBD, to her daughter Clarian, who was diagnosed with Dravet syndrome, at her home in Sao Paulo on Wednesday, July 10, 2024. Clarian was diagnosed at the age of 10. Dravet syndrome is a severe form of epilepsy that can cause cardiopulmonary arrest and sudden death. (AP Photo/Andre Penner) Maria Aparecida Carvalho tends to the marijuana plants she grows for medicinal purposes in the backyard of her home in Sao Paulo on Wednesday, July 10, 2024. (AP Photo/Andre Penner)
On a July morning in the coastal city of Guaruja in Brazil's São Paulo state, Murillo quickly came to his senses in the arms of his mother, Janaina Silva.
“Five minutes of agony is now just seconds,” Silva said, remembering that just three months ago her son's seizures would have lasted much longer. Murillo's baby was diagnosed with Lennox-Gastaut syndrome, a type of epilepsy that causes multiple types of seizures that cause the head and limbs to stiffen and fall.
Silva believes his attacks are shorter and less intense because he takes constant doses of liquid cannabidiol (CBD), which is freely available through the state's public health system. This is a step the federal government has been unable to take, as legislation to regulate medical marijuana and its derivatives at the national level has stalled in Congress for years.
At drug stores, a 30-milliliter (1 fluid ounce) bottle of CBD prescribed by Murillo's pediatrician for his condition costs as much as 900 reais ($180). This is more than half of Silva's monthly salary as an administrative assistant. Since June, she has spent zero money on Murillo's CBD medication. She drops the oil into the boy's mouth twice a day, and one bottle lasts about 45 days.
CBD is a chemical found in marijuana that has been shown in some studies to be effective in reducing seizures in people with severe epilepsy when used in combination with other medications. It's not yet clear why seizures are reduced, and side effects may include diarrhea, vomiting, fatigue, and sleep problems. CBD, not THC, the compound that causes marijuana's high, has been shown to help improve appetite in people with cancer and other illnesses.
Brazil's most populous state, São Paulo, with over 44 million people, was the first state to enact a law making CBD freely available.
The law was a victory for Brazilian mothers who have led a decade-long campaign to ensure access for sick children. They have fought civil disobedience, court petitions, marches, and political pressure.
One of the mothers leading the way is Maria Aparecida Carvalho, 56, a former bank employee. Her daughter Clarian was diagnosed with Dravet syndrome when she was 10 years old. Dravet syndrome is a severe form of epilepsy that causes the heart and lungs to suddenly stop functioning, which can lead to death. Her medication caused severe side effects, and at one point she almost needed hemodialysis due to poisoning, and her attacks could last up to an hour. Carvalho and her husband took turns sleeping at night, fearing they would lose their child.
There they heard about Charlotte Figi, an American girl suffering from the same disease who became a global representative of medical CBD. When Carvalho read about her in 2013, she rushed to tell her husband.
“The first thing I said to him was, 'Let's go get it from the drug dealer,'” Carvalho said.
Instead, she was able to obtain CBD a few months later when her daughter's neurologist smuggled it into her luggage while returning from a trip abroad. Then, with the help of a lawyer, she obtained a special court permit to start growing marijuana in her backyard in the city of São Paulo, producing chemical extracts for her daughter and 200 other patients. .
Emilio Figueiredo, a lawyer and member of the National Drug Policy Council, said Brazil's current law allows the use of cannabis and its derivatives for scientific and medical purposes. However, growing marijuana remains illegal, forcing the industry to import raw materials such as cannabis oil, significantly increasing prices.
When Caio França, a centre-left state lawmaker, met Neide Martins, a mother who was struggling to secure CBD to treat her son's rare form of epilepsy, he said that he wanted to help families, especially those with medication. I realized there was a need for help for people who couldn't afford it.
In 2019, França's government drafted the country's first law aimed at allowing families to apply for medication through the public health system. For three years, he tried to win over his overwhelmingly conservative opponent one by one, using testimonials from families who wanted CBD to treat their children.
“The political environment was ignorant and biased against cannabis, and I was surprised how little my fellow MPs knew about this,” França said.
The bill was passed by the end of 2022 with support from nearly two-thirds of the state legislature. The bill was signed by an unlikely person in January 2023. Governor Tarcisio de Freitas is a former cabinet minister of far-right former President Jair Bolsonaro and has often been floated as a potential new standard-bearer for the political right.
He limited the bill to patients with three rare medical conditions, including Dravet syndrome and Lennox-Gastaut syndrome, citing research showing that this is the only disease for which CBD use has been proven effective. .
At the signing ceremony, De Freitas said Dravet's nephew uses medicinal CBD. In the past, the boy reportedly wore a helmet in public to protect himself from sudden seizures.
“Every time you have a seizure, a little bit of life is taken away, and it's very sad to witness that,” the governor said, clutching the podium in his hands. “And then you get this bill and you think, ‘Oh, finally…’ This had to be done.”
Recreational cannabis remains prohibited in Brazil, but after years of deliberation, the Supreme Court decriminalized personal use up to the maximum permissible amount in June. In response, Brazil's conservative Congress began pushing for stricter drug legislation.
Even if Congress strengthens recreational drug laws, it shouldn't affect patients' access to cannabis or cannabis products, attorney Figueiredo said. A 2023 poll by Datafolha concludes that opinions on medical marijuana cut across the country's deep political polarization.
Medical cannabis use is increasing in Brazil. More than 430,000 Brazilians will receive treatment with cannabis derivatives in 2023, an increase of nearly 130% from the previous year, according to a study by business intelligence firm Kayamind.
Sidarta Ribeiro, Brazil's leading neuroscientist and founder of the Brain Research Institute of the Federal University of Rio Grande Norte, said mothers of sick children are on the front lines of the fight. He recently published a book titled Flowers of Goodness: The Science and History of Marijuana Liberation.
“All of this has come together over the last 10 years to turn the tide, but it's still a long way off,” Ribeiro said.
Murillo's mother Silva, who comes from a conservative family, said she used to have prejudices against marijuana, but changed her mind after seeing how CBD benefited her son. .
“This is a drug that will improve his quality of life,” she said.
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This story corrects the attorney's name to Figueiredo, not Rodriguez.
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