Brazilian moms are leading the charge to secure CBD for sick kids

SAO PAULO -- The 4-year-old boy struggled to balance while walking through the living room. His mother’s eyes attentively followed his every move. Then a seizure knocked him to the ground, the dull thud of his small body echoing through the home.

On this July morning in Guaruja, a coastal city in Brazil's state of Sao Paulo, Murillo quickly regained his senses as his mom, Janaína Silva, cradled him.

“From five minutes of agony, it’s now just seconds," Silva said, recalling how only three months ago her son’s seizures would have lasted much longer. Murillo was diagnosed as a baby with Lennox-Gastaut syndrome, a type of epilepsy with multiple types of seizures that cause stiffening and dropping of the head and limbs.

Silva believes his shorter — and less intense — seizures are a result of a steady dose of liquid cannabidiol (CBD) that she can acquire for free through the state public health system. It's a step the federal government has failed to take, as legislation to regulate medical cannabis and its derivatives at the national level has stalled in Congress for years.

In drugstores, a 30 milliliter bottle (1 fluid ounce) of the CBD that Murillo’s pediatrician prescribed for his condition costs as much as 900 reais ($180) — more than half Silva’s monthly wages as an office assistant. Since June, she has spent zero on Murillo’s CBD medication. Twice a day, she drips the oil into the boy's mouth, and each bottle lasts about 45 days.

CBD is a chemical found in marijuana and some studies have shown it helps reduce seizures in people with severe forms of epilepsy when taken in combination with other medications. It’s not yet clear why it reduces seizures, and side effects can include diarrhea, vomiting, fatigue and sleep problems. CBD is not the compound, THC, that causes marijuana's high and has been shown to help cancer patients and other sick people improve their appetite.

Sao Paulo, Brazil’s most populous state with over 44 million people, was the first to enact legislation making CBD available for free.

The law was a win for Brazilian moms who have led a decadelong campaign to secure access for their sick children. They have fought through civil disobedience, court petitions, marches and political pressure.

One of the mothers leading the charge is Maria Aparecida Carvalho, 56, a former bank employee. Her daughter, Clárian, was diagnosed at age 10 with Dravet Syndrome, a severe form of epilepsy that can cause the heart and lungs to stop working suddenly and lead to death. Her medication caused severe side effects — once she nearly needed blood dialysis from poisoning — and her seizures could last up to one hour. Carvalho and her husband took turns sleeping for fear they could lose their child in the night.

Then they heard of Charlotte Figi, an American girl suffering from the same disease who became the global poster child for 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 drug dealers,’” said Carvalho.

Instead, she was able to obtain some CBD months later, when her daughter's neurologist smuggled it inside her luggage when returning from an overseas trip. Later on, with the help of a lawyer, she obtained special court permission to start growing marijuana in her backyard in Sao Paulo city, and has been producing the chemical extract for her daughter and 200 other patients.

Existing legislation in Brazil allows the use of cannabis and its derivatives for scientific and medicinal purposes, said Emílio Figueiredo, a lawyer and member of the National Council on Drug Policy. However, cultivating marijuana is still illegal, pushing the industry to import raw materials, such as cannabis oil, causing prices to rise dramatically.

When Caio França, a center-left state lawmaker, met Neide Martins, a mother who struggled to secure CBD to treat her son’s rare form of epilepsy, he realized families needed help, particularly those unable to afford medication.

In 2019, França drafted the country's first bill aiming to allow families to request medication through the public health care system. For three years, he worked to convince his overwhelmingly conservative counterparts, one by one, using testimonials from families who wanted CBD for their kids’ treatment.

“The political environment was uninformed and prejudiced against cannabis. It was surprising how little my fellow deputies knew about it,” França said.

The bill passed in late 2022, with nearly two-thirds support from the state's legislature. It was signed into law in January 2023 by an unlikely figure: Gov. Tarcísio de Freitas, a former Cabinet member of former far-right President Jair Bolsonaro who is often floated as a possible new standard-bearer for the political right.

He restricted the bill to patients with three rare medical conditions, including Dravet and Lennox-Gastaut syndromes, citing research showing those were the only ones where CBD use was proven effective.

Speaking at the signing ceremony, de Freitas said he has a nephew with Dravet who uses medicinal CBD. Before, he said, the boy would wear a helmet in public, in case a sudden seizure should strike him down.

“Each seizure takes away a little bit of life. And it’s very sad to witness,” the governor said, clutching the podium in both hands. "And then, when you receive this bill, you think: ‘Oh my... finally.’ This had to be done.”

Recreational marijuana is still prohibited in Brazil, but following years of deliberations, the Supreme Court in June decriminalized it for personal use, up to a maximum-allowed quantity. In response, Brazil’s conservative Congress started pushing for tougher drug legislation.

Even if Congress tightens drug laws for recreational use, that shouldn’t affect access for patients to cannabis and cannabis products, said Figueiredo, the lawyer. A 2023 poll by Datafolha concluded that opinions about medical cannabis transcend the nation’s deep political polarization.

Use of medicinal cannabis in Brazil is on the rise. In 2023 more than 430,000 Brazilians received treatment with cannabis derivatives, up nearly 130% from the previous year, according to a survey by Kaya Mind, a business intelligence firm.

Sidarta Ribeiro, a leading Brazilian neuroscientist and founder of the Brain Institute at the Federal University of Rio Grande do Norte, said mothers of sick children have been at the forefront of the struggle. He recently published a book on the subject, titled “The Flowers of Good: the Science and History of Marijuana Liberation."

“All of this came together over the past ten years to turn the tide, but the game is far from won,” said Ribeiro.

Coming from a conservative family, Silva, Murillo’s mom, says she used to be prejudiced against marijuana, but she changed her mind after seeing how CBD has benefited her son.

“It’s a medication that can give him a better quality of life,” she said.

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This story corrects the lawyer's name to Figueiredo instead of Rodrigues.

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