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

SAO PAULO (AP) — 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.

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

Follow AP’s coverage of Latin America and the Caribbean at https://apnews.com/hub/latin-america

Janaina Silva watches over her four-year-old son Murillo after an epileptic seizure at her parents' home in Guaruja, Brazil, Monday, July 8, 2024. To lessen and shorten his seizures, Murillo takes a steady dose of liquid cannabidiol or CBD, that Silva acquires for free through Sao Paulo state’s public health system. (AP Photo/Andre Penner)

Maria Aparecida Carvalho sits with her daughter Clárian in their backyard next to the marijuana plants Carvalho cultivates for medicinal purposes, in Sao Paulo, Wednesday, July 10, 2024. Clárian was diagnosed at age 10 with Dravet Syndrome, a severe form of epilepsy that can cause cardiorespiratory arrests and lead to sudden death. (AP Photo/Andre Penner)

Maria Aparecida Carvalho gives a dose of liquid cannabidiol or CBD, to her daughter Clárian, diagnosed with Dravet Syndrome, at their home in Sao Paulo, Wednesday, July 10, 2024. Clárian was diagnosed at age 10 with Dravet Syndrome, a severe form of epilepsy that can cause cardiorespiratory arrests and lead to sudden death. (AP Photo/Andre Penner)

Maria Aparecida Carvalho speaks during an interview while standing next to the marijuana plants she cultivates for medicinal purposes, in the backyard of her home in Sao Paulo, Wednesday, July 10, 2024. (AP Photo/Andre Penner)

Maria Aparecida Carvalho holds a bud of marijuana that she cultivates for medicinal purposes, in the backyard of her home in Sao Paulo, Wednesday, July 10, 2024. (AP Photo/Andre Penner)

Maria Aparecida Carvalho tends to her marijuana plants that she cultivates for medicinal purposes, in the backyard of her home in Sao Paulo, Wednesday, July 10, 2024. (AP Photo/Andre Penner)

Janaina Silva smiles at her four-year-old son Murillo, who has severe epilepsy, at her parents' home in Guaruja, Brazil, Monday, July 8, 2024. To lessen and shorten his seizures, Murillo takes a steady dose of liquid cannabidiol or CBD, that Silva acquires for free through Sao Paulo state’s public health system. (AP Photo/Andre Penner)

Janaina Silva gives a dose of cannabidiol or CBD, to her four-year-old son Murillo after an epileptic seizure, at her parents' home in Guaruja, Brazil, Monday, July 8, 2024. To lessen and shorten his seizures, Murillo takes a steady dose of CBD, that Silva acquires for free through Sao Paulo state’s public health system. (AP Photo/Andre Penner)

Janaina Silva caresses her four-year-old son Murillo after an epileptic seizure at her parents' home in Guaruja, Brazil, Monday, July 8, 2024. To lessen and shorten his seizures, Murillo takes a steady dose of liquid cannabidiol or CBD, that Silva acquires for free through Sao Paulo state’s public health system. (AP Photo/Andre Penner)

Janaina Silva watches over her four-year-old son Murillo after an epileptic seizure at her parents' home in Guaruja, Brazil, Monday, July 8, 2024. To lessen and shorten his seizures, Murillo takes a steady dose of liquid cannabidiol or CBD, that Silva acquires for free through Sao Paulo state’s public health system. (AP Photo/Andre Penner)

Janaina Silva tends to her four-year-old son Murillo during an epileptic seizure, at her parents' home in Guaruja, Brazil, Monday, July 8, 2024. To lessen and shorten his seizures, Murillo takes a steady dose of liquid cannabidiol or CBD, that Silva acquires for free through Sao Paulo state’s public health system. (AP Photo/Andre Penner)

Janaina Silva cries during an interview while talking about her four-year-old son Murillo, who suffers from severe epilepsy, at her parents' home in Guaruja, Brazil, Monday, July 8, 2024. To lessen and shorten his seizures, Murillo takes a steady dose of liquid cannabidiol (CBD) that Silva acquires for free through Sao Paulo state’s public health system. (AP Photo/Andre Penner)

Four-year-old Murillo, who suffers from severe epilepsy, watches TV at his grandparent's home in Guaruja, Brazil, Monday, July 8, 2024. To lessen and shorten his seizures, Murillo takes a steady dose of liquid cannabidiol or CBD, that his mother, pictured in background, acquires for free through Sao Paulo state’s public health system. (AP Photo/Andre Penner)

KINSHASA, Congo (AP) — A military court in Congo handed down death sentences Friday to 37 people, including three Americans, after convicting them on charges of participating in a coup attempt.

The defendants, most of them Congolese but also including a Briton, Belgian and Canadian, have five days to appeal the verdict on charges that included attempted coup, terrorism and criminal association. Fourteen people were acquitted in the trial, which opened in June.

The court in the capital, Kinshasa, convicted the 37 defendants and imposed “the harshest penalty, that of death” in the verdict delivered by the presiding judge, Maj. Freddy Ehuma, at an open-air military court proceeding that was broadcast live on TV. The three Americans, wearing blue and yellow prison clothes and sitting in plastic chairs, appeared stoic as a translator explained their sentence.

Richard Bondo, the lawyer who defended the six foreigners, said he disputed whether the death penalty could currently be imposed in Congo, despite its reinstatement earlier this year, and said his clients had inadequate interpreters during the investigation of the case.

"We will challenge this decision on appeal,” Bondo said.

Six people were killed during the botched coup attempt led by the little-known opposition figure Christian Malanga in May that targeted the presidential palace and a close ally of President Felix Tshisekedi. Malanga was fatally shot while resisting arrest soon after live-streaming the attack on his social media, the Congolese army said.

Malanga’s 21-year-old son Marcel Malanga, who is a U.S. citizen, and two other Americans were convicted in the the attack. His mother, Brittney Sawyer, has said her son is innocent and was simply following his father, who considered himself president of a shadow government in exile.

In the months since her son's arrest, Sawyer has declined multiple interview requests and has focused her energy on fundraising to send Marcel money for food, hygiene products and a bed. He has been sleeping on the floor of his prison cell and is suffering from a liver disease, she said.

The other Americans are Tyler Thompson Jr., 21, who flew to Africa from Utah with the younger Malanga for what his family believed was a vacation, and Benjamin Reuben Zalman-Polun, 36, who is reported to have known Christian Malanga through a gold mining company. The company was set up in Mozambique in 2022, according to an official journal published by Mozambique’s government, and a report by the Africa Intelligence newsletter.

U.S. State Department spokesman Matthew Miller told reporters in Washington on Friday that the federal government was aware of the verdict. The department has not declared the three Americans wrongfully detained, making it unlikely that U.S. officials would try to negotiate their return.

“We understand that the legal process in the DRC allows for defendants to appeal the court’s decision," Miller said. "Embassy staff have been attending these proceedings as they’ve gone through the process. We continue to attend the proceedings and follow the developments closely.”

Thompson had been invited on an Africa trip by the younger Malanga, his former high school football teammate in a Salt Lake City suburb. But the itinerary might have included more than sightseeing. Other teammates alleged that Marcel had offered up to $100,000 to join him on a “security job” in Congo.

Thompson’s family maintains he had no knowledge of the elder Malanga’s intentions, no plans for political activism and didn’t even plan to enter Congo. He and the Malangas were meant to travel only to South Africa and Eswatini, his stepmother, Miranda Thompson, told The Associated Press in May.

The Thompsons have been working with a lawyer in their home state of Utah to encourage U.S. officials to intervene. Utah’s U.S. Sens. Mitt Romney and Mike Lee have not publicly urged the U.S. government to advocate for the Americans' release.

“My thoughts are with the families during this difficult time. We will continue to work with the State Department to receive updates on this case," Lee told the AP on Friday.

“This is an extremely difficult and frightening situation for the families involved," Romney's office said in a written statement. "Our office has consistently engaged with the State Department and will continue to do so.”

Last month, the military prosecutor, Lt. Col. Innocent Radjabu, called on the judges to sentence all of the defendants to death, except for one who suffers from “psychological problems.”

Congo reinstated the death penalty earlier this year, lifting a more than two-decade-old moratorium, as authorities struggle to curb violence and militant attacks in the country.

Schoenbaum reported from Salt Lake City. Associated Press writers Monika Pronczuk in Dakar, Senegal, and Matthew Lee in Washington contributed to this report.

America Marcel Malanga attends a court verdict in Congo, Kinshasa, Friday Sept .13, 2024, on charges of taking part in a coup attempt in May 2024. (AP Photo/Samy Ntumba Shambuyi)

Back row, Tyler Thompson, 2nd left, Marcel Malanga, center, and Benjamin Reuben Zalman-Polun, 2nd right, all American citizens, attend a court verdict in Congo, Kinshasa, Friday Sept .13, 2024, on charges of taking part in a coup attempt in May 2024. (AP Photo/Samy Ntumba Shambuyi)

Tyler Thompson, left, Marcel Malanga and Benjamin Reuben Zalman-Polun, all American citizens, attend a court verdict in Congo, Kinshasa, Friday Sept .13, 2024, on charges of taking part in a coup attempt in May 2024. (AP Photo/Samy Ntumba Shambuyi)

America Marcel Malanga attends a court verdict in Congo, Kinshasa, Friday Sept .13, 2024, on charges of taking part in a coup attempt in May 2024. (AP Photo/Samy Ntumba Shambuyi)

America Tyler Thompson attends a court verdict in Congo, Kinshasa, Friday Sept .13, 2024, on charges of taking part in a coup attempt in May 2024. (AP Photo/Samy Ntumba Shambuyi)

American Tyler Thompson arrives for a court verdict in Congo, Kinshasa, Friday Sept .13, 2024, on charges of taking part in a coup attempt in May 2024. (AP Photo/Samy Ntumba Shambuyi)

Tyler Thompson, left, Marcel Malanga and Benjamin Reuben Zalman-Polun, all American citizens, attend a court verdict in Congo, Kinshasa, Friday Sept .13, 2024, on charges of taking part in a coup attempt in May 2024. (AP Photo/Samy Ntumba Shambuyi)

American Marcel Malanga arrives for a court verdict in Congo, Kinshasa, Friday Sept .13, 2024, on charges of taking part in a coup attempt in May 2024. (AP Photo/Samy Ntumba Shambuyi)

Back row, Tyler Thompson, 2nd left, Marcel Malanga, center, and Benjamin Reuben Zalman-Polun, 2nd right, all American citizens, attend a court verdict in Congo, Kinshasa, Friday Sept .13, 2024, on charges of taking part in a coup attempt in May 2024. (AP Photo/Samy Ntumba Shambuyi)

American Marcel Malanga, fourth right, stands with others during a court verdict in Congo, Kinshasa, Friday Sept .13, 2024, on charges of taking part in a coup attempt in May 2024. (AP Photo/Samy Ntumba Shambuyi)

FILE - From left T,yler Thompson Jr, Marcel Malanga and Benjamin Reuben Zalman-Polun, all American citizens, face the court in Kinshasa with 52 other defendants on June 7, 2024, accused of a role in last month's attempted coup in Congo led by little-known opposition figure Christian Malanga in which six people were killed. (AP Photo/Samy Ntumba Shambuyi)