Moms leading charge to secure medical marijuana for sick kids

SAO PAULO (AP):

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 millilitre bottle (1 fluid ounce) of the CBD that Murillo’s paediatrician 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.