Sunday, August 25, 2013

Please Don't Let My Daughter Die, Governor

“Please don’t let my daughter die, governor”.  These were the words of Brian Wilson, father of Vivian Wilson, a 2 year-old girl who suffers severe seizures from Dravet Syndrome, a form of epilepsy. 


On Thursday August 15th edition of “The Lead” with host Jake Tapper, Mr. Wilson was a guest to discuss his confrontation with Governor Chris Christie.  New Jersey’s legislators approved the use of medical marijuana in that state and had sent the bill to the governor to sign it into law.  That was over two months ago.

According to Wilson, Vivian suffers seizures on average every four days and sleeps with a heart monitor, an oxygen mask and wears an eye patch because some patterns trigger the seizures.  Certain types of ingested cannabis strains which are low in THC have proven to be effective in children suffering from seizure disorders where conventional medications have failed. 

Wilson said, “the seizures can be life ending; they are taxing on organs like the heart, respiratory system and the brain.  Vivian’s seizures can last up to 60 minutes and her heart has stopped twice.”

The medical marijuana that the Wilson’s are seeking approval for has a low dosage of THC (tetrahydracannibinol) and comes in the form of lozenges or other edible delivery forms.

Christie vowed to make a decision on whether or not to veto the legislation by Friday, August 16th

Dr. Sanjay Gupta’s documentary “Weed” on CNN had aired last Sunday.  In his article “Why I changed my mind on Weed”, CNN’s medical correspondent found that the Drug Enforcement agency’s listing of marijuana as a schedule 1 substance, meaning that it is on the list of the most dangerous drugs with no medical value and having a high potential for abuse, to be false.

In traveling around the world and interviewing medical experts, growers and patients, he was stunned by the misinformation that has been passed as scientific evidence in the U.S. for 70 years.

In his documentary, he highlights the case of Charlotte Figi a 6 year-old patient in Colorado, a state that has made medical marijuana legal.  Charlotte, who also suffers from Dravet Syndrome, started having seizures soon after birth and by the time she was 3, she had about 300 seizures a week and had been under a pharmaceutical regimen of 7 different medications.  After receiving medical marijuana the seizures were reduced to 2 or 3 per month. 

On Friday, August 16th, Governor Christie exercised a conditional veto signaling he would sign the bill if the Legislature made two changes:  that edible forms of marijuana would be available to minors only and that both a pediatrician and a psychiatrist would have to sign off on the prescription.

Brian Wilson was again a guest of Jake Tapper on “The Lead” to discuss what Christie’s conditional veto meant.  According to Wilson, Christie’s decision maintains “one of the most unsafe medical marijuana programs in the country and inserts government between the parents and the doctors.” 

Prior to the New Jersey law, patients had to have a pediatrician and a psychiatrist and a doctor on the medical marijuana registry issue a card to a patient.

Wilson said “The psychiatrist is a major hurdle; you are talking about sick kids who aren’t even capable of talking.”  “To keep in the psychiatric requirement is just telling parents who are suffering with these horrible diseases with children, I’m going to make it more difficult for you to get treatment for your child.”

While Wilson is happy with the decision to lift the number of marijuana strains and making edible forms of marijuana available to minors, what about all the adults?  The adults would have no other option but to smoke marijuana.

The Wilson’s had lobbied the New Jersey state legislators and they quickly passed the legislation to make it easier for kids to access the medical marijuana system, only to have the legislation sit on Christie’s desk for two months.

Every delay has been excruciating for the Wilson’s and other families wanting access to the medical marijuana that has given children in Colorado and California a more peaceful, productive life.

When Brian Wilson confronted Governor Christie with “Please don’t let my daughter die, Governor, please don’t let my daughter die.”  Christie’s reply was “These are complicated issues; I know you think it’s simple and it’s not.”  Well Christie’s conditional veto has now made it more complicated and every delay is basically letting sick children die.

By:  Patricia Baeten

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