By Michelle Tihanyi
Looming over Governor Chris Christie’s desk, to the uninformed one might wonder what this new bill will bring.
The drafting of the bill started shortly after recent articles exposing the plight of Brian and Meghan Wilson’s two year old daughter Vivian, who started seizing at just two months old. Vivian suffers from a rare and severe form of treatment resistant epilepsy known as Dravet Syndrome. Vivian’s parents have exhausted all options which include wearing an eye patch, removing striped items, various medications including rescue medications, and even putting her on a ketogenic diet. Despite all their effort, Vivian still continues to suffer every day with a minimum of ten seizures a day on better days, while hundreds on other days; including generalized tonic clonic seizures or complex partials from five to ten days.
During their quest to find Vivian treatment that could help to reduce her life threatening seizures, they have learned about an unconventional therapy that has worked phenomenally for children in both Colorado and California; medical marijuana. The strain that Vivian needs, Charlotte’s Web, is a non-psychoactive form that’s low in THC, and high in CBD which doesn’t give a “high” and comes in the form of a tincture. Both Brian and Meghan Wilson attempted to sign Vivian up to New Jersey’s medical marijuana program for which she is eligible for. In order for Vivian to be able to receive a state issued medical marijuana card, her parents needed to find three doctors to sign an approval which is required by the state for patients who are minors: a medical doctor, pediatrician, and even a psychiatrist. As only two pediatricians are on the state’s doctor registry, they had difficulty finding the final doctor who would sign an approval. Shortly after their plight was published, her parents were able to find the last doctor that was needed, but more issues remain.
As the law stands now, it bars edibles and there is a restriction on the number of strains allowed to be cultivated to three. The only medical marijuana Vivian can receive access to is not only psychoactive which produces a “high” feeling, but also only available in a smokable form; neither which are ideal for minors. The only edible form that is allowed are lozenges which can be a choking hazard for some patients including young children such as Vivian.
Yet another child in New Jersey who also has Dravet Syndrome, Jackson Stormes, can be helped by the new law. Jackson is 14 years old and has been seizing since four months old. He has been on 50 medications for the past 14 years, along with two brain surgeries, VNS, and a ketogenic diet, yet he still seizes an average of two to eight times per day with his longest seizure lasting for over three hours. Unlike Vivian, Jackson has tried a high CBD medical marijuana tincture, with low THC, while living part time with his father in California. As a result, his seizures decreased in intensity and duration, had improvements in both language and use of speech, along with better cooperation and attention. The improvements however dwindled once he returned to New Jersey and needed to end his use of the medical marijuana tincture as a result. Yet there is now renewed hope with the new law.
S2842 will remove the limit on strains and edible forms, as well as reduces the three doctor requirement to one, which is the same for adults. It will also help prevent minors from getting high by increasing access to non-psychoactive strains. This brings hope to many families such as Jackson’s and Vivian’s.
Governor Chris Christie has made no implications on whether he would sign the bill into law or veto, but he clearly stated that he’s “not inclined to allow them to have it”, and is undecided about what action he’ll take. Meanwhile, children are prescribed narcotics that are far more dangerous than marijuana; those that are both physically addicting and can have fatal consequences. Fatality rates with prescription narcotics rise every year and is a growing problem in the US, according to the CDC. They are also the leading cause of accidental deaths in the US causing 15,000 deaths every year; greater than the fatality rates of car crashes as reported by the CDC in 2011. If the amendment is signed into law it can also potentially lower addiction and fatality rates in New Jersey due to the program’s expansion, which will benefit both children and adult patients alike.
Will Governor Chris Christie have a change of heart and sign the bill into law? Only time will tell.
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