Pubdate: Sun, 23 Mar 2014
Source: Douglas County Sentinel (GA)
Copyright: 2014 Douglas County Sentinel, Douglasvcille, GA.
Contact: http://drugsense.org/url/J7vysmDh
Website: http://www.douglascountysentinel.com/
Details: http://www.mapinc.org/media/5444
Author: Ron Daniel

LOCAL FAMILY SUFFERS AFTER MEDICAL MARIJUANA CAUGHT IN 'POLITICAL CROSSFIRE'

Local family suffers after medical marijuana caught in 'political crossfire'

Five-month-old Kason Jiles of Lithia Springs has a medical file more 
than 600 pages thick and takes seven medications for a seizure disorder.

Kason's dad Jonathan watched the final hours of the Georgia 
Legislature on Thursday night on his computer, frustrated that a bill 
that could have helped his son and had so much support fell just short.

House Bill 885, which would have legalized cannabis oil, a 
nonsmokable derivative of marijuana, had overwhelming support in the 
House and Senate. But in the Legislature's final days, Sen. Renee 
Untermann (R-Buford) tried to attach a provision that would have 
expanded autism coverage. Untermann's attachment didn't fly in the House.

Late Thursday, Rep. Allen Peake (R-Macon), the primary sponsor for 
the bill that would have legalized cannabis oil for sick kids, tried 
to get a stripped down version through that would have allowed people 
to bring cannabis oil to Georgia from other states without fear of 
prosecution. The Senate didn't bite and the bill died.

"Essentially, our children got caught in the middle of a political 
crossfire," said Jiles, who got a call from Sen. Mike Dugan 
(R-Carrollton) at about 12:30 am. Friday to let him know he did all 
he could to get the bill passed. "Everybody ended up losing because a 
few people wanted to play games. It's sad that that happens. This is 
something that the vast, vast majority of the Georgia Legislature supported."

Freshman Rep. Micah Gravley (R-Douglasville) was a front-page 
co-sponsor of the medical marijuana legislation and got to know many 
of the families in his district, which covers parts of Douglas and 
Paulding counties, who have been affected by the debilitating seizure 
disorders like the one Kason Jiles has.

Gravley said Friday that he didn't participate in the 2014 Sine Die 
ritual celebrating the end of the session late Thursday night, 
refusing to tear papers and throw them into the air.

"It was tough to kind of throw papers and cheer," said Gravley. "We 
did have great victories, but we've got kids that are dying."

Now that the 2014 session is over, Jonathan Jiles and his family are 
making contingency plans on how to deal with Kason's seizures.

Kason has Ohtahara syndrome, a neurological disease characterized by 
seizures that can number from 10 to 75 a day.

Jonathan Jiles said his son is holding steady, with the seizures not 
getting better, but not getting worse either. Kason is having about 
10-15 seizures a day. He's had as many as 74 in a day and has only 
had one seizure-free day in his entire life.

Kason is about to start what is known as the ketogenic dietc, which 
is a high fat, low carb diet that has been shown to help reduce 
seizures in some children. He'll have to be hospitalized when he 
starts the diet, and Jonathan Jiles sees that as being pretty close 
to a last ditch effort.

He said if the diet and all of the medications, which include five 
different anti-epileptic drugs, don't work, he'll consider moving to 
Colorado where Kason would likely have access to the cannabis oil.

Jiles said the latest information from Colorado is showing that 100 
percent of children taking the cannabis oil are showing some 
reduction in seizures, that 85 percent have seen more than a 50 
percent reduction and that over 50 percent have shown a greater than 
90 percent reduction.

That's compared with studies he cites showing that "if you have tried 
adequate dosing of two anti-epileptic drugs and you do not find 
relief, there's a 1 percent chance you'll find relief on an 
anti-epileptic drug."

Jonathan Jiles is now part of a group called the Child Epilepsy 
Project (CEP). The nonprofit was originally formed with the hope that 
medical marijuana would pass in Georgia. Since efforts to get the 
university system and Children's Healthcare of Atlanta to produce 
cannabis oil had been unsuccessful, the nonprofit planned to help low 
income families fly to Colorado, get the cannabis oil for their 
children and come back to Georgia.

With the Legislature's failure to pass the HB 885, bringing cannabis 
oil to Georgia remains illegal. Jiles said the group will now work to 
help those families establish residency in Colorado, get the cannabis 
oil treatment and help them get on their feet living in a new state.

He said the project estimates it would cost about $20,000 for all of 
the expenses for one family, including everything involved in 
relocating, getting the medicine and giving the bread-winner in the 
family 3-4 months to find work in Colorado.

"The goal is to help families that Georgia failed last night," Jiles 
said Friday.

He said after talking to doctors, the plan is to set up a wait list 
that's structured much like a heart-transplant wait list, where those 
children most in need get to the head of the line. He points out that 
some of the families he's gotten to know while lobbying for 
legalizing cannabis oil in Georgia may not have their kids next year 
because of the severity of the disorders they face.

In the mean time, Gravley said he's ready to go to battle again for 
families like Jiles in 2015.

And Jiles said he's not giving up either.

"We plan on being back next year," said Jiles. "This is not going to 
be the end. We're fighting for this until we have this in Georgia."

For more on the Child Epilepsy Project, visit www.childepilepsyproject.org.
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MAP posted-by: Jay Bergstrom