The bill was inspired by Scotch Plains parents Meghan and Brian Wilson in their plight to obtain marijuana for their 2-year-old Vivian, who suffers from Dravet syndrome, a rare for of epilepsy that causes her frequent and violent seizures.
"We are happy that this is finally being signed into law," wrote the Wilsons in a statement to Patch. "Our next focus will be working with the Mary E. O'Dowd and Department of Health to ensure that this law is properly regulated according to the true intent of the law so that Vivian and all of the other patients in New Jersey can finally start getting the type of medicine they need in the form they need."
The Wilsons have been fighting for access to a particular strain of marijuana that's high in CBD (cannabidols) and low in high-producing THC, and has proven successful for children with Dravet syndrome in more lenient states like Colorado.
Though Vivian is a card-carrying medical marijuana patient, the Wilsons' bill sought to eliminate the obstacles that make it impossible for her to be treated. Those restrictions include a limit on how many strains a dispensary can sell (a maximum of three), prohibition of edible products and the requirement that multiple physicians must sign off in order to obtain a prescription.
Christie's conditional approval of the bill stipulated that dispensaries can now sell more than three strains and allows edible products, but only for minors. He would not, however, adjust the requirements regarding prescribers. If either the prescribing pediatrician or psychiatrist is not registered in the state's medical marijuana program, a third registered physician must also approve the treatment.
For the Wilsons, although Vivian's pediatric neurologist approved medical marijuana treatment, they then needed to seek additional approval from a psychiatrist and a doctor in the state's medical marijuana registry.
With only two pediatricians (and only 16 psychiatrists) in the registry, the Wilsons sought a prescriber who was not a pediatrician, nor had any experience treating Vivian.
"It's unrealistic to think any child in New Jersey is going to be registered in the program," Meghan Wilson told Patch. "The rules are so complicated, and I think that’s all intentional, which is still blocking so much access for minors. It's forcing parents to shop around for physicians, and parents of sick children really don’t have time to do this. Hopefully, it will be easier for other parents due to attention to subject over the past months, but at end of day it's still a burden."
Wilson also worries that New Jersey's registry program, which she says has made obtaining a prescription so onerous, is now being touted as an example for the rest of the country.
"It's crazy if people are looking to New Jersey as an example of how to implement a good safe program," she said. "Anyone can see the irony in that, when the person overseeing Vivian's prescription is someone who isn't at all familiar with her condition."Another obstacle for the Wilsons is the supply of the strain of marijuana they are seeking. The plant they need must be grown from a clone, they said, and they have no indication if that will happen and when.
Plus, they note, New Jersey's only dispensary, Greenleaf Compassion Center in Montclair, has been closed for weeks due to supply issues. If the marijuana they need isn't available at some point after they begin using it, inconsistent treatment could be deadly for Vivian.
"Supply is a very serious concern to me because of what happened with Greenleaf," Wilson said.
The Wilsons estimate the cost of the marijuana they would need to be about $1,100 per month here, whereas it would only cost $150 per month for the same treatment in Colorado.
And so they have to decide whether to move away from their home until the program becomes consistent and reliable in New Jersey or wait it out here and eventually pay a higher cost for treatment.
"The New Jersey Health Department still needs to regulate the bill's effects, including what types of edibles will be allowed and how they will translate the two-ounce-per-month-limit to edibles," Wilson said. "It all needs to be regulated and tested. Realistically, it's going to be at least a year before Vivian can go to a dispensary and come home with treatment."
So what will they do next?
"That’s the $1 million question we wish someone could answer for us," Wilson said. "Do we move to Colorado for a few years?"
Although the Wilsons have been actively researching neighborhoods and school districts—and considered the money they might lose in selling their house in Scotch Plains (the mortgage payments are too expensive to rent it out, they said)—there will still be a wait for Vivian's treatment in Colorado.
"There's a waiting list and we'd have to go through the whole card process again," she said. "Plus, after Sanjay Gupta's documentary aired last week, lots of other Dravet families are considering the move, too. And the farm that grows the strain we all need can only grow so much."
The Wilsons were also surprised that Christie's conditions allow edibles for minors, but not adults.
"It doesn't make sense," Wilson said. "One of our doctors thinks it must be a typo. What about a patient in pain from lung cancer who can't smoke? Or someone dying from AIDS who has lost the ability to smoke?"
Still, the Wilsons don't diminish the hard-fought victory, even if it was an incomplete one, to create access for minors to treatment. And they never envisioned their fight would include a confrontation with the governor during a campaign visit to Scotch Plains, launching their story nationwide, with Brian appearing on CNN and other news programs the day before Christie planned to announce his decision.
"I don’t want to discount significance of all this," Wilson said. "The fact that we got anything is a huge step forward. And we are so thankful for everyone who has helped us, wrote letters, and came out on Wednesday."
The Wilsons can't help but wonder, too, if Christie hadn't visited Scotch Plains when he did, if Brian hadn't had a moment to confront him, and if news cameras and reporters hadn't been there to catch the supporters with bright pink signs or Brian's urging to "Please don't let my daughter die, governor,"—a line that made headlines across the globe and propelled their story forward—would Christie have agreed to the bill at all?
"The story was gaining momentum within New Jersey for sure," Wilson said, "but none of this would have gone national if Brian hadn’t left our vacation and gone up to that diner on Wednesday.
"How did Christie's staff not think of that, that we'd be here to confront him? Someone made a huge mistake. And I think he would have vetoed it completely if not for all the news and all the pressure. He approved the minimum amount of the bill he could to shut up Vivian Wilson’s parents and to not kill Vivian before his election. You can tell they have no respect for this as a medicine. If they did, the program would be a lot better."
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