The mums leading the charge to secure medical marijuana for their sick kids

Sign up for our free Health Check email to receive exclusive analysis on the week in health

Get our free Health Check email

Get our free Health Check email

Please enter a valid email address

Please enter a valid email address

SIGN UP

I would like to be emailed about offers, events and updates from The Independent. Read our privacy policy

The four-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.

His shorter — and less intense — seizures are a result of a steady dose of liquid cannabidiol (CBD) that Silva 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 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.

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 cardiorespiratory arrest and lead to sudden death. Her medication caused severe side effects — once she nearly needed hemodialysis 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 cannabis. 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 (cannabis) 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 extract for her daughter and 200 other patients.

Existing legislation in Brazil allows the use of cannabis for scientific and medicinal purposes, said Emílio Rodrigues, 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 needed marijuana extract as the most effective alternative 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 cannabis use was proven effective.

Speaking at the signing ceremony, de Freitas said he has a nephew with Dravet who uses medicinal cannabis. 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, said Rodrigues, 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 cannabis treatment, 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 it has benefited her son.

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