Pubdate: Sun, 27 Jul 2014
Source: Philadelphia Inquirer, The (PA)
Copyright: 2014 Philadelphia Newspapers Inc
Author: Jan Hefler
Page: B10


They Say Changes Could Better Help Sick Children. He Has Said His
Worry Is Moving Toward Legalization.

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."

'Under review'

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

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.

Making their own

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

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

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."
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