A man leaves Columbia Care, New York City’s first medical marijuana dispensary, Jan. 7, 2016. Andrew Burton/Getty Images

Oliver Miller has become the face of the fight for New York state’s medical marijuana law. Now 16, he suffered an in utero stroke that affected his brain stem and left him with myriad disabilities, the most dangerous of which is severe epilepsy, or seizure disorder. On his bad days, his seizures number more than 100. His desperate parents tried just about everything to find some relief for him. He’s currently on a cocktail of four drugs, plus an IV infusion every three weeks. They have tried special diets and even a medically implanted device, and his condition worsened. “That’s just from the seizures,” his mother, Missy Miller, says. “That says nothing about the side effects or the complications he’s suffered from the side effects of the medications.” Those are as bad as if not worse than the seizures. But one thing might help him: medical marijuana. And in New York state, whose medical marijuana program launched Jan. 7, that means Oliver Miller’s story — and those of many other New York residents — should have a happy ending. But it has not had one. New York’s law is so restrictive that campaigners say it has done little or nothing to alleviate patients’ suffering. They still can’t get the medicines they say they need. Oliver Miller’s story is a long and complicated one. It began with a glimmer of hope. Missy Miller came across a study showing promise for severely epileptic children who take CBD, a nonpsychoactive, cannabis-based compound, which appeared to reduce the number of seizures in children who weren’t responding to traditional treatments. “It was August 2012, when I first heard about it,” she says. “And then I was like, ‘Oh, my God, let’s just do this. Let’s get this.’ Then I heard it’s not legal here. How is that possible? How is it that you’re allowed to do this in Colorado but you’re not allowed to do this in New York?” And so her battle began. From that moment on, her life revolved around two things: caring for her son and lobbying everyone to get a medical marijuana law passed in New York. She met with then–state Senate Majority Leader Dean Skelos, once a major opponent to the law, who changed course when he met Oliver Miller and saw him seize 15 times during their short meeting. She repeatedly made the three-hour journey to the capital, Albany, with her son in tow, speaking to anyone in the press prepared to listen.

‘I was like, ‘Oh, my God, let’s just do this. Let’s get this.’ Then I heard it’s not legal here. How is that possible? How is it that you’re allowed to do this in Colorado but you’re not allowed to do this in New York?’ Missy Miller mother of an epileptic child

In June of 2014, victory appeared imminent. The state legislature approved the Compassionate Care Act, bringing medical marijuana to New York. But it would take 18 months to implement. That was a crushing blow to Missy Miller and the thousands of patients, some of them terminal, who fought so hard for the bill. According to her, a lot can go wrong in 18 months for a child like her son. “I can’t even begin to list the skills that he lost in 18 months,” she says. “He used to be able to pull himself up to stand and walk around the perimeter of his play area. We took the walls down because he can’t pull himself up to stand and walk around anymore. He used to have about 150 words. He has maybe 30 words now. We’ve almost lost him a couple of times just to status seizures in general, where the seizures don’t stop and we have to give him such an extreme amount of medication.” Politicians argued that the legislation had to be written thoughtfully, the covered conditions chosen carefully, possible future pitfalls avoided. And according to Julie Netherland of the Drug Policy Alliance — part of a coalition that lobbied to get the act passed — final passage was reliant on Gov. Andrew Cuomo, who wasn’t completely convinced. “It was first introduced in 1997, so it’s been around for a long time,” she says. “When it became clear that we had the votes in the Republican-controlled Senate, the governor’s office began to engage in the process.” With just over a week left in the legislative session, Cuomo introduced a set of amendments that turned it into one of the most restrictive bills of its kind in the country. Only 10 conditions were covered. Only five strains of cannabis-based oils could be sold in dispensaries, but no whole plant or anything smokable or edible. Only five companies are approved to manufacture the oils and sell them. Oliver Miller’s condition is covered, but none of the 20 dispensaries in New York state are in Long Island, where the Millers live. Doctors who want to be able to certify patients to use medical marijuana are required to take a four-hour course costing $249. “Those were all restrictions put in by the governor,” says Netherland. “I would say that gutted the bill.” So far, 226 physicians in New York state have taken the course and qualified. Oliver Miller’s doctor is among the vast majority who have not, and she says she will not — meaning that, for all Missy Miller’s fighting, her son cannot get the medical marijuana he needs. She says, “The first thing she asked me when I suggested she take the course was, will I have to be put on a list? And I can respect her concern. The last thing she wants is a bunch of people making appointments for marijuana recommendations.” She says that even at NYU Langone Medical Center, which is one of the premier epilepsy centers in the country and is involved in trials for medications containing cannabis, doctors will not offer medical marijuana recommendations.