Missy Miller sits with her epileptic son Oliver (R) in their home at Atlantic Beach, New York January 7, 2014. REUTERS/Mike Segar
When New York moves ahead with its planned legalization of medical marijuana for the chronically ill, Missy Miller's epileptic son Oliver will be left behind.
Oliver suffered a brain stem injury in utero and now, at 14, has hundreds of seizures a day. For months, his family has pinned their hopes on a strain of marijuana developed in Colorado that has helped children with similar conditions.
But under an executive order by Governor Andrew Cuomo on Wednesday making New York the 21st state to allow medical marijuana, it will remain illegal to grow marijuana or to import specialized plants from other states. The order limits the number of hospitals that can dispense marijuana and allows its use only to treat diseases such as cancer and glaucoma, according to several people briefed on the plan.
Patients will have little say in the marijuana they are prescribed and people like Oliver - who could benefit from a specialized strain known as Charlotte's Web that is high in the compound cannabidiol, or CBD, - would be cut out entirely.
"With this one medication, it's stopping their seizures or dramatically reducing their seizures," said Miller, 49, as her son lay in a playpen in their home near in Atlantic Beach, east of New York City.
While anecdotal evidence gives reasons for patients to be encouraged by the use of the strain, doctors urge caution.
Orrin Devinsky, an epilepsy expert at New York University who has treated Oliver, said data about the safety and effectiveness of "Charlotte's Web" is scant.
"In medicine, the roadside is littered with drugs and compounds and plants that people have sworn by," said Devinsky, who is preparing a clinical trial using a nearly pure form of CBD. "The available data right now in humans is anecdotal - single cases where there could be a tremendous amount of bias in the results."
Cuomo's announcement comes one week after Colorado began allowing the sale of marijuana for recreational use. A second state, Washington, will follow suit later this year.
The move is an about-face for Cuomo, who previously opposed marijuana legalization, but the Democrat has not come under the same pressure as his counterpart in neighboring New Jersey.
There, Governor Chris Christie in September signed a bill loosening rules on medical marijuana access for sick children. Dubbed "pot for tots," by tabloids, Christie approved it one month after he was confronted by the parents of a two-year-old girl who suffers from a form of epilepsy.
The family has since said they will move to Colorado where marijuana is sold in edible form, while in New Jersey it may only be sold in smokable form.
Medical marijuana has long faced an uphill battle in New York state.
The Compassionate Care Act, which provides for medical marijuana, has come up repeatedly in the state legislature since 1997, and has been approved by the state assembly four times. But has never made it to a vote in the State Senate.
State Assemblymen Richard Gottfried, a leading proponent of medical marijuana, called Cuomo's order a "key interim step". He said he planned to introduce a more comprehensive measure.
"The law is very limited and cumbersome and will leave out a lot of people," said Gottfried.
The Charlotte's Web strain of marijuana, which the Millers have placed such hope in, comes from a medical marijuana dispensary in Colorado Springs called Indispensary.
The product, which comes as an oil, is low in THC, the psychoactive compound that gives users the feeling of being high, and has close to no value to traditional marijuana consumers. But others tout the medicinal value of CBD.
A Gallup poll in October found, for the first time, a clear majority of Americans - 58 percent - favor legalizing marijuana, while 38 percent of Americans admitted they had tried the drug. A Siena College poll in May found that 82 percent of New Yorkers support legalizing medical marijuana.
On Tuesday, on the eve of Cuomo's announcement, Miller led Oliver through their home from his playpen - a cheerfully decorated space under a row of enlarged family portraits - across the living room.
Standing at 4 feet 5 inches with bouncy curls that fall almost to his shoulders, Oliver is about as tall as his mother, who struggled to help him stand upright. At one point, Oliver froze up and Miller explained he was having a seizure.
"All done," the boy said a moment later, and they continued.
"Oliver has a lot of other medical problems, and we've been very successful at overcoming" many of them, said Miller. "The one thing we haven't been able to get any control over are these seizures. And, in spite of all these other medical problems, these are stealing him from us."
Miller, who has a healthy 19-year-old daughter, learned the extent of Oliver's health issues when he was a few weeks old. She had already lost one child, at the age of 7, and took multiple tests to ensure she would have a healthy baby.
Oliver is blind, cannot eat normally and has difficulty standing on his own or walking. As he grows up, Miller's main concern is that Oliver's seizures could damage his brain severely and further limit his quality of life.
Their lives have been a constant process of trying new medications and Miller said she is cautiously optimistic about Charlotte's Web marijuana.
"You see the glimpses of what he is," said Miller. "I just want him to have and to meet his full potential."