Parents press Christie on Rx marijuana

New Jersey's medical-marijuana program is coming under fire from a group of parents, who are setting up orange traffic cones on a sidewalk in front of the Statehouse each week to make their point, simply and colorfully.

The program needs repairs, they say, and Gov. Christie is blocking changes that would help their severely ill children get treatment their doctors have recommended. The cones are intended as a visual reference to Bridgegate.

The protests have been held each Thursday this month.

"We need this program to work. . . . The children are the ones getting hurt," said Jennie Stormes, a nurse who organized the group of nearly 30 parents, children, caregivers, and advocates who assembled in Trenton last week. The group erected a small barrier of six cones, held up signs, and arranged a display of placards that criticized Christie and that exhibited photographs of young children whose life-threatening seizures have lessened, the parents say, due to cannabis use.

Stormes' son, Jackson, 15, is a marijuana patient who suffers from epileptic seizures that brain surgery and more than two dozen prescribed drugs have failed to control. "I'm tired of the governor making fun of the program and saying it's about legalization. It's not," said Stormes, of Warren County.

Riccardo Rivera, a medical assistant from Oaklyn, brought his 7-year-old daughter to the protest in a wheelchair. Tatyana, nicknamed Tuffy, used to have about 10 violent convulsions a day that would lead to falls, he said. But since she has been taking teaspoons of cannabis over the last six weeks, she now has only a couple of seizures a week, he said.

"The cost is the biggest problem," Rivera said, adding that the regulations required him to spend more than $1,000 to obtain recommendations from a psychiatrist, a pediatrician, and a doctor who is registered with the program before he could get Tuffy a marijuana card. "Low-income families can't afford that, and their children get sick just like the wealthies."

The last change Christie made to the program was nearly a year ago when he signed a bill, after much hesitancy, that amends the marijuana law. The amendment allows sick children to obtain edible cannabis, a product previously not permitted. But he vetoed a provision in the bill that would have made children eligible for cannabis with one doctor's signature.

No edible products are yet available. The health department, which oversees the program, has not approved the manufacturing plans submitted months ago by the dispensaries.

When asked the status, the department wrote in an e-mail: "Under review. The Department is evaluating manufacturing protocols to ensure safety." A question about the estimated approval timetable went unanswered. No other details were provided.

The governor's office also did not reply to an e-mail asking about Christie's willingness to make changes to the program or to address the delay in the edible program. In May, a Christie spokesman said: "The governor has signaled his willingness to make changes to the program if there is a demonstrable need."

Christie has said that he doesn't believe other changes are warranted and that they could lead the state down a path to full legalization.

Stormes said she is upset the edibles, which are easier to administer, still are not being offered. "I've heard May, June, July. . . . I stopped asking," she said, recalling how parents had to lobby the governor intensely last year just to sign the bill. Currently only smokable cannabis buds are being sold.

In February, South Jersey's only dispensary, in Egg Harbor Township, provided the health department with its plans to manufacture cannabis capsules, liquid medicines, and transdermal lotions.

Tom Prendergast, Compassionate Care Foundation's chief operating officer, said no final approval was granted, but there have been discussions. The brown bags containing 100 pounds of leaves that were set aside to be shipped to a Pennsauken plant for the manufacturing are still sitting in the dispensary. "The state is in the process of formulating the regulations and guidelines for edibles," he said.

Renovations had started at the nondescript brick plant, in an industrial park just off Route 130, but it now sits dark and empty.

Pennsauken Mayor Jack Killion said the town committee had granted preliminary approvals, but other inspections are needed. "This is no different from any pharmaceutical company that makes medications," he said.

Two months ago, Michael Weisser, chief operating officer of the Garden State Dispensary in Woodbridge, said he had demonstrated his manufacturing equipment to state officials.

Recently he submitted a written request to begin the work. "They said they are looking at it favorably, and we are waiting their final promulgation of what the rules will be."

The edibles for the children would be "in a form easily given to a child, like a candy," he said.

Stormes said that parents were being forced to make their own oil or butter for their children from the marijuana buds that are sold. "It doesn't have to be like this," she said. "If this was someone else's medicine, this wouldn't be tolerated."

She also complained that, when her son turns 18 in three years, he won't be able to get edibles - unless the program is amended. Christie restricted the products to children, but Stormes said Jackson will need to take marijuana after he is an adult.

Tina DeSilvio, of Franklinville, is making her own oils for her child, Jenna, 14, who wears a helmet to prevent injuries from frequent seizures. DeSilvio said Jenna's seizures have declined 80 percent since she began giving her cannabis oils in January, and the teenager is gradually being weaned off antiseizure drugs that have serious side effects.

But DeSilvio says the program greatly needs improvement. "It would be nice if we could have access to labs to test the oils before giving it to our children," she said.

Why did she attend the protest? "I'm here because I would like to see compassion in the program," she said. "To me, there isn't any."