Gwenevere Leia experienced her first seizure when she was only three months old. She suffers from a serious seizure disorder called infantile spasm. Spasms come in clusters and involve flexion and extension movements of the whole body. She spent most of the first two years of her life at her Toronto home heavily sedated with anti-seizure medications. Her dad, 45-year-old Alexander Repetski, estimates that doctors tried 10 different medications; none of them completely stopped the seizures.

Everything changed when Repetski introduced a high-CBD, low-THC cannabis oil to treat Gwenevere’s seizures at the age of two. Since cannabis oil was illegal in Canada in 2014, he built his own device to make oil from dry flowers. Gwenevere went from having up to 20 seizures per day to none. Because she didn’t need to be sedated anymore to control her seizures, her motor skills improved—she started sitting on her own and crawling. Now six years old, Gwenevere can walk, run, jump, go to school and communicate her wishes. She experiences nocturnal seizures only once every three to four weeks. She continues to take cannabis oil and has been weaned off all other medications. Since Health Canada approved the use cannabis oil for medical purpose in 2016, her oil comes from legal producers.

Despite the much-celebrated legalization of cannabis on October 17, people like Gwenevere are not able to access it outside of Canada’s medical program. They may be too young, too sick, or not have the cognitive capacity to make a purchase on their own. Without a doctor’s guidance, they also may not know if and how much cannabis to take. A discontinuation of the Health Canada medical cannabis program, as proposed by the Canadian Medical Association, could compromise access for these patients. “The CMA’s recommendation is to phase out the current Health Canada program to access to medical cannabis and let patients buy from the legal retail market,” said Jeff Blackmer, Canadian Medical Association vice-president, at the Canadian Consortium for the Investigation of Cannabinoids conference in Toronto in April 2018.

In addition to epilepsy, people use cannabis to alleviate the symptoms caused by conditions like arthritis, multiple sclerosis, fibromyalgia, HIV/AIDS and cancer. Children are not the only patients who will be left out if the medical program is terminated. Adults with developmental disabilities will have to rely on another adult to buy for or share pot with them. Without medical guidance, patients and caregivers will have to educate themselves about the optimal doses, intervals, CBD/THC ratio and adverse effects. Some adults are worried about the stigma of buying from a non-medical retail facility and about securing supply, since many stores sold out their stock on the first day of legalization.

Dr. Bláthnaid McCoy is a pediatric neurologist at the Hospital for Sick Children in Toronto and the leader of a clinical trial of medical cannabis in the treatment of severe seizure disorder in children. Gwenevere is one of her patients.

“I hope that the Health Canada medical access program will continue despite the legalization of recreational cannabis,” Dr. McCoy told VICE. “The programs are separate and serve different populations. Since the inclusion of cannabis oil as a legal product for medical use in 2016, I have seen increased knowledge and comfort, in my Canadian colleagues, in authorizing cannabis to decrease the number and intensity of seizures in epilepsy.”

There is still a need for research to develop evidence of efficacy and guidelines on best practices of dosage and interval, says McCoy—not just for for epilepsy, but for many other conditions for which the current level of evidence is even lower. “I am hoping that with better evidence and the development of guidelines, provincial pharmacare programs and insurance companies will start covering the cost,” she says. “Medical cannabis can cost (patients) many hundreds of dollars monthly.”

Repetski, a communication strategist and media production artist, now works as director of communication for Flowr, a licensed cannabis producer, after seeing how much cannabis helped his daughter. “Stopping this program would have enormous effects,” he says. “Access would be more difficult, cost would increase by losing the current tax deduction, physician’s education and research opportunities would decrease. More importantly, I would have to buy cannabis and give it to my daughter, which is illegal.”

Under the new Cannabis Act, one adult can share cannabis with another adult. There are no special provisions for adults with developmental disabilities.

In contrast to CMA’s recommendation, Health Canada’s official position is that after legalization under the 2018 Cannabis Regulations, the medical cannabis program will continue to provide access to individuals who have authorizations from healthcare practitioners. Health Canada’s program, which supplies cannabis as dry leaves or oil, only got more popular in the months before legalization. As of March 2018, 296,702 Canadians were authorized to used cannabis for medical purposes, up 70% from April 2017. Although Health Canada tracks the overall number of people authorized to use medical pot, they don’t track the number of users under the age of 18. The Canadian government has until 2023 to reevaluate the ongoing relevance of the medical access program.

When it comes to patients who can only access cannabis through the medical program, the CMA proposes “special provisions” in their statement, but without giving any details.

Asked about Health Canada’s policy to keep access to medical pot open, Canadian Medical Association spokesperson Anick Losier pointed to the most recent CMA statement (summer 2018) on the association’s website, which reads, “The CMA is concerned about the lack of clinical research, guidance and regulatory oversight for cannabis as a potential medical intervention. Over the years, physicians have been put in a position of gatekeepers for a substance that has not undergone established regulatory review processes required for all other prescription medicines. This is why the vast majority of Canadian physicians feel uncomfortable in authorizing cannabis for usage or recommending it for specific clinical purposes.”

It’s clear some physicians don’t feel that way, however.

“For now, it would be important for those physicians treating patients with epilepsy with CBD (cannabidiol), to continue doing the same,” Suzanne Nurse, executive director of the Canadian League Against Epilepsy (CLAE), an organization that works to help Canadians affected by epilepsy, told me. If access to medical cannabis for treatment is phased out, CLAE recommends that physicians continue supporting patients who take it.

While recreational cannabis is now legal, questions remain unanswered about the future of cannabis for medical purposes. Families like the Repetskis hope current research will provide the scientific evidence needed to maintain the program—and their child’s quality of life.

Dr. Marie-Claude Grégoire is a pediatrician specializing in pain and palliative medicine. Follow her on Twitter.