When her infant started having siezures, Margarete de Santos Brito went to court in Brazil for the right to grow the only medicine that worked. Now she’s helping others do the same.
It happened for the first time just 35 days after Margarete de Santos Brito brought her daughter Sofia home from the hospital. Laid on the sofa in their home in Rio de Janeiro, Sofia’s little arms rose up to shoulder height and tremored, flicking between strange angles.
The next two and a half years were punctuated by innumerable doctors’ appointments, hospital visits and tests before Sofia was finally diagnosed. Her epileptic fits turned out to be a symptom of an incurable genetic disorder called CDKL5. Only one other case had ever been diagnosed in Brazil. Over the years, Brito tried every medicine that doctors prescribed for Sofia. But the myriad of anti-convulsive medications had mixed success in reducing the severity and frequency of epileptic fits. Many weren’t particularly effective at all, and came with distressing side effects like partial loss of sight.
Late one night, her husband Marcos woke her up. On a Facebook group of parents across the world with CDKL5 children, one mother in the U.S. described giving her daughter cannabis-based medicines to mitigate the epileptic fits. “He came to bed after me, super excited, and woke me up – ‘Guete, do you know what I’ve just seen?’” Brito chuckles. “I was half-asleep, and I said O.K., let’s talk about it tomorrow.”
First thing the next morning, Brito contacted the parents in the group that her husband had told her about. They were using cannabidiol, which had shown promising results in reducing CDKL5 seizures. Under Brazil’s rigorous anti-drug laws, importing cannabidiol would be no different than importing any other form of cannabis. Brito knew that if her package was intercepted, although it was only a small amount, she could be arrested for international drug trafficking and put in jail for up to 15 years.
Within a few hours of speaking to the CDKL5 parents in the U.S., Brito decided to try it anyway. Ten days later, the extract arrived in a small jar through the mail. “It was a really hard, black paste; it looked like mechanical grease and had a really strong smell of marijuana.”
Following instructions from a YouTube video, Brito scooped out a tiny ball of the paste, the same size as a grain of rice, and dissolved it in a spoonful of cooking oil over a gentle flame before putting it in Sofia’s mouth. “It was as if I was an alchemist or something,” she says. “It was a really crazy experience for me, I can’t even explain it.”
Brito and her husband gave Sofia the medication three times a day for a month. There were some improvements, but it was a prohibitively expensive solution and the effects were nothing remarkable. But their efforts were enough to convince other parents in her social networks, at first skeptical, to try it.
Katiele Fischer, whose daughter Anny is Brazil’s other CDKL5 case, began giving her daughter the extract. Three months later, Anny showed such an improvement that Brito decided to try again using an artisanal oil produced in Brazil. It wasn’t cheap, but this time Sofia’s seizures were drastically reduced.
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A little over two years later, Brito took on Brazil’s tangled legal system to become the first person in the country’s history with permission to grow cannabis for medicinal purposes. It was cheaper, she argued, than importing medicines for her daughter, who has a rare genetic disorder. In October 2016, Brito entered Rio’s civil court with her friend and lawyer Emilio Figueiredo to try to get formal permission to grow marijuana at home. A practicing lawyer herself, she felt certain that she knew exactly what she had to do.
She brought a syringe of imported medicinal cannabis oil with her, and a photo of her homegrown foliage on her phone. In a dark room stacked floor to ceiling with books and case papers, they sat across the table from a slightly stunned judge as Brito explained exactly why she was growing an illegal substance in her house.
The pair were informed that they needed to take their case to the criminal court. Others might have been intimidated by this order, but Brito’s 12-year career had left her well acquainted with Brazil’s byzantine bureaucracy. On October 16, she sat in the waiting room in another courtroom in downtown Rio, a stack of carefully prepared documents at her side amid disgruntled neighbors settling noise complaints. When her turn came, she presented the case herself to a different judge and a small audience. Sympathetically, the judge simply told Brito that there was no need for a formal decision on her case.
But Brito wasn’t about to accept being told to remain in a grey area. “I knew that we needed this decision, as a political act to share, to say, ‘look, it’s allowed.’ The judges were all in favor, everyone saying the same thing – that if it was their daughter, they would do the same thing.” Brito persuaded the judge that she needed the decision: what if someone reported her to the police and her daughter’s medicine was confiscated? She received the formal legal decision granting her permission the very next day.
Today, Brito is still one of just three Brazilians with the right to grow medicinal cannabis at home – but she wants to see this change, and fast. Other Brazilians, mostly parents of children with degenerative diseases, are forced to seek out expensive medical marijuana in clandestine fashion, risking punitive jail sentences if they are caught.
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Angela Silva is one such mother. Her daughter Janaína, who is now 28 years old, showed no signs of any condition until she was a little over two years old. Today Janaína’s condition remains a nameless mystery, but manifests as severe epileptic convulsions combined with elements of autism. She can understand what’s going on, but struggles to express herself. Her growth and development has been stunted; she looks far younger than her 28 years.
Silva and her husband tried every solution suggested by the legions of doctors they visited, many of which did little to improve Janaína’s health. One year ago, Silva’s family finally found they were no longer able to afford the multitude of constantly changing prescriptions. Janaína’s state only deteriorated after she was internalized in a hospital for several months last year, a court mandate designed to release Silva from the round-the-clock job of caring for her. Silva now takes care of Janaína at home once again. As always, her day begins with a bump and a wail.
“Good morning! Did you fall again?” Silva asks, in measured, sing-song tones. Janaína is lying on the floor, curled on top of her blanket. Green-purple splotches form a continual cluster from her ankles to her hips, a result of her many falls. On good days, Silva and Janaína sing together. On bad days, Janaína beats her head against the wall until she draws blood, reducing Silva to tears. But today, Silva notices something. Beaming, she asks, “Did you take off your pants all by yourself?”
Silva has been giving Janaína cannabidiol, a purified cannabis extract in oil form, since October of last year. Before, she says, Janaína could never have managed to undress herself. Since using cannabidiol, Janaína has regained enough motor control to fill a water bottle and fix the lid in place herself – something which was unthinkable a year ago.
“My daughter was on her way out. She didn’t walk anymore, didn’t speak, didn’t smile,” Silva says, frowning. “I started giving her cannabidiol myself, breaking all the doctors’ rules. If it wasn’t for cannabidiol, my daughter wouldn’t be here today.”
Silva was ambivalent about the idea of cannabis oil at first, and her husband was entirely opposed to trying it. Cultural associations between marijuana, trafficking and criminal drug gangs still hold strong in Brazil. The illegal drug trade is the main contributor to urban violence in Brazil’s biggest cities like Rio de Janeiro, where Silva and her family live. As a result, 58 percent of Brazilians still believe that marijuana should not be legalized in any form. But as medication after medication failed to bring about any change, Silva and her husband decided to try cannabidiol.
“I was very prejudiced,” Silva says curtly. “Janaína taught me not to be anymore. It’s prejudice that stops legalization.”
Brito, Silva and parents like them aren’t just struggling with cultural stigma. Brazil’s National Health Surveillance Agency, ANVISA, authorized the first cannabidiol imports in late 2014. While this set sufficient legal precedent for ANVISA to authorize similar applications, no laws have been changed or introduced. Instead, ANVISA doles out legal permission on a case-by-case basis, giving 2,053 such permissions since 2014.
Silva is one of many who’s asked for permission to import cannabis extract. She’s still waiting for it. Meanwhile Brazilian-made oils are also expensive, and producing cannabidiol for distribution purposes within Brazil itself, whether for commercial or non-profit ends, remains a legally grey area.
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Brito spends her days arranging activities with Support for Patients and Research for Medicinal Marijuana (APEPI), the NGO she founded in 2013, which supports parents like Silva. Although CDKL5 is incredibly rare, a whole host of other conditions – some genetic, some not, but all inexplicable for doctors – benefit from medical marijuana. She sees her position as special, able to fight for changes to medical marijuana laws that would help other Brazilians. As well as organizing events, talks and activities across Latin America, she is also constantly replying to messages in Facebook and WhatsApp groups founded for parents of children like Sofia.
Bureaucratic hurdles don’t just get in the way for patients. Medical cannabis’s legal ambiguity is also stifling research on the topic, with only a handful of Brazilian universities obtaining the right to conduct studies using marijuana. Without a concrete scientific basis, as well as cultural biases and legal uncertainty, doctors in Brazil are unlikely to prescribe medical marijuana regardless of the patient’s condition. As well as serving as a point of support and information for parents throughout Brazil, APEPI plays a crucial role in pushing for advances in legalization and research permissions.
“I was always a very political person, in the sense of mobilization,” says Brito, the corners of her mouth poking briefly skywards. Although APEPI had succeeded to an extent with importation, Brito realized that it was only a solution for the financial elite. The medicine itself was costly, at around $149 for 1500mg in late 2014. But with the addition of Brazil’s notoriously high import costs, even fewer families could afford it as a solution. APEPI had fought for the government to cover the import costs, and won. But even then the medicine ended up stuck with authorities, because the government didn’t have the money.
“We started to notice in 2014 and 2015 that the question of legalization for importation wasn’t so much the problem. The problem was that no one could pay,” says Brito. “We started to see that the question of importation was no longer a fight that made sense.”
By early 2016, Brito and other mothers in her social networks had been using Brazilian-made extracts for a while. Brito had been shown how to grow cannabis by another group she knew that grew for recreational purposes. A new idea began brewing in Brito’s head: that she could grow, produce and distribute it herself to her networks, for almost no cost.
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Because of Brito’s personal efforts, two more families have been given permission to grow at home since November 2016. Thanks to APEPI’s pressure, ANVISA is trying to implement new laws allowing people to grow their own medical marijuana at home before the end of 2017.
Brito, as always, is looking ahead: she wants ANVISA to provide licenses for collective growers. Very few mothers have the time or the means to grow and produce the oil themselves. She is only able to do so, she says, because she has help from a domestic employee and her mother-in-law. Meanwhile, she thinks it’s important that as many people as possible are growing medical marijuana at home, regardless of whether they have permission. The number of people telling her that they would do the same thing in her situation makes her certain that no one would be arrested.
Recent changes to other Latin American laws add to Brito’s certainty about medical marijuana’s fate in Brazil. Businesses in Colombia found a legal loophole in 2015 that allowed commercial sales of medical marijuana. A similar, mother-led movement pushed Peru’s government to propose medical legalization in February this year, while Argentina and Chile legalized medical marijuana in March 2017 and May 2017, respectively. Most recently, in July, Uruguay introduced widespread legalization of marijuana for personal and recreational uses, allowing citizens to purchase at pharmacies without need for a prescription. Brito, it seems, is part of a continent-wide movement.
Her fighting spirit is clearly infectious, rubbing off on those in her Brazilian networks. On the terrace of Silva’s house, the blistering midday heat reveals a small change. Perched unobtrusively in a corner, a first, hopeful sprig glistens bright green in the sunlight, its tiny ten centimeters swaying in the breeze.