Julia is celebrating her seventh birthday with a unicorn-themed party. She makes a grand entrance with her mom and brother wearing a rainbow-colored princess tutu, while her dad serenades her with "You are the Sunshine of my Life.” Everyone is on their feet, emotional and overjoyed.
Julia getting to seven years old is a celebration in itself. A week before her birthday, Donnabel Cunanan, Julia’s mother, sat in her newly set up dental clinic in Quezon City, Philippines. She talked about how, for about three years, she had to stop practicing dentistry. Julia’s seizures had escalated to its worst. “Month after month, we were always at the hospital. We reached rock bottom and we had to sell our car, and I had to give up my clinic to take care of her,” she said. “When she was around 3-4 years old, she had as many as 1,000 seizures a day. It was non-stop.”
As a baby, Julia was diagnosed with Dravet syndrome, a rare form of intractable epilepsy that cannot be controlled by medication, and at 11 months old, she was issued her first anti-epileptic drug: Valproic acid. “When we started taking Valproic acid, that’s when our journey got worse. Although I recognized her seizures at three months old, she still reached some of her milestones: she could run, she had direct communication skills,” said Donnabel. “When she started taking Valproic acid, I noticed her development regressed. She would have more seizures. I monitored my own baby, so I could see how she was reacting to the medicine we would introduce.”
Donnabel meticulously kept diaries of her daughter’s seizures, including the time it happened, the duration, and a short description. Eventually, the seizures happened so much it was too tiring to keep count.
In 2013, Donnabel saw a TV interview with a couple, Myca and Jun Yutuc, who were one of the first to speak publicly in the Philippines about medical marijuana. Like Julia, their daughter Moon Jaden was also diagnosed with Dravet syndrome.
The couple was living in Dubai when Moon Jaden was battling the disease. Her parents were desperate for alternatives. "Jun started researching Moon’s condition, and he met Paige Figi online,” said Myca, 36, referring to the mother of Charlotte Figi, whose name became a strain of medical cannabis called Charlotte’s Web in the United States. Charlotte also had Dravet syndrome, and when her condition failed to improve despite medications, her mother Paige sought out medical marijuana in the form of a cannabis oil low in THC (the psychoactive constituent of marijuana) and high in CBD (or cannabidiol, the non-psychoactive constituent).
After her first dose, Charlotte didn’t have seizures for 7 days. Her 300 seizures a week were reduced to 2-3 a month. Her behavior and development improved.
Myca recalled sending Paige a video of Moon.
“She informed us about her daughter’s situation and asked if we knew about cannabis. At first I was hesitant and unsure, but we kept on researching.” Thinking it would be cheaper in the Philippines, Myca and Jun sought it out. But because the drug is illegal, they sourced it underground. “By the time we found someone who could give us a medical cannabis, Moon Jaden had already been in a coma for two to three weeks.”
In that year of Moon Jaden’s life, there wasn’t a period of time when they didn’t have to worry about seizures.
“By the time we found someone [who could give us medical marijuana], we were so grateful to that person as he had given us hope, but we were too late." she said. "She passed away.”
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These experiences led mothers like Donnabel and Myca to the Philippine Cannabis Compassion Society (PCCS). The PCCS is the lone patient advocacy group in the Philippines fighting for the legalization of medical cannabis. They have been involved in the drafting of House Bill 6517 in 2014, and are still active today. This, against the backdrop of President Rodrigo Duterte’s brutal and bloody crackdown on drugs.
Although the bill is undergoing interpellation at the Lower House, it faces some dissenters, including doctors from the Philippine Medical Association, who released a position paper in November 2017 saying that “the current limited evidence on the efficacy of medical cannabis, the strong evidence on its harmful effects, as well as its negative health impact in the face of increasing cannabis potency makes legalization of medical cannabis in the country a serious threat to public health.” They also note that the bill is “contrary to the policy of the state to safeguard the well-being of its citizenry, particularly the youth from the harmful effects of dangerous drugs,” arguing that the bill opens the possibility of abuse for recreational use.
This, despite a November 2017 World Health Organization statement saying the main ingredient in medical cannabis is non-addictive and nontoxic. “CBD has been demonstrated as an effective treatment of epilepsy in several clinical trials…” reads the paper, and “there is also preliminary evidence that CBD may be a useful treatment for a number of other medical conditions.” WHO stated that the Expert Committee on Drug Dependence found: “To date, there is no evidence of recreational use of CBD or any public health related problems associated with the use of pure CBD.”
Dra. Leonor I. Cabral-Lim, Chair of the Department of Neurosciences at the Philippine General Hospital, and who has strongly opposed the bill, explained to VICE that they are "not against" medical marijuana, per se. Her argument is not so much whether cannabidiol has medicinal benefits – she concedes it does – but whether it can be prescribed as a medicine if it isn’t backed by meticulous research and approved by the Food and Drug Administration (FDA).
Recently, the FDA approved a cannabidiol called Epidiolex, specifically for people with Dravet syndrome. “There is no need to pass a bill just to have [medicine like] Epidiolex in the Philippines. RA 9165 (The Comprehensive Dangerous Drugs Act of 2002) will allow that," she said. "There is no need for a bill. If you want to access it, maybe we have to call a meeting with FDA. Maybe that’s easier than passing a bill and less expensive.”
However, Epidiolex will cost roughly $32,500 to access the medicine for a year . One of the arguments of the bill proponents is that by the Philippines creating its own cannabidiol, it will be cheaper. Dra. Cabral-Lim countered that making cannabidiol is not that easy.
“It’s difficult to grow a plant with a high CBD content. There is also CBD in hemp, but you will need hectares and hectares of hemp to produce cannabidiol. It’s going to be expensive to produce," she said. "They say the reason they want to legalize it here in the Philippines is because it will be cheaper. They are only talking about the plant that you can plant anywhere. Our point though is, even if something is free, why will you take it if there is no proven medicinal value?”
Currently, House Bill 6517 is on its second reading, pending before the House of Representatives. Ironically, Duterte himself has joked that he takes marijuana to stay awake, and in December, Presidential Spokesman Salvador Panelo said Duterte supports legalizing the use of medical marijuana. Whether he is steadfast on this stance remains to be seen.
For Sharon Lapitan, a 38-year-old single mother, she can only imagine what having access to medical cannabis might do for her 15-year-old son, Angelo, who suffers from epilepsy and cerebral palsy.
Angelo, who take various anti-epileptic drugs and undergoes physical therapy, was only 4 when Sharon noticed his seizures. “I’ve accepted that in my son’s case, he will never really get better. But I wish that his quality of life could be preserved, or that he could live for one year where he doesn’t have a seizure. Or that we wouldn’t be so dependent on his medicine… because it is so expensive.”
When VICE met Angelo, he had already suffered 5 seizures that day. His lips were bruised and sewn up from hitting his face on the floor every time he convulsed. His front teeth, broken, had to be removed.
To Sharon, anything that can make this better, is at least worth trying.