Pubdate: Thu, 13 Nov 2014
Source: Orlando Sentinel (FL)
Copyright: 2014 Orlando Sentinel
Contact:  http://www.orlandosentinel.com/
Details: http://www.mapinc.org/media/325
Note: Rarely prints out-of-state LTEs.
Author: Scott Powers
Page: A1

FAMILIES DESPAIR AS LEGAL FIGHT SNAGS 'CHARLOTTE'S WEB' MEDICAL MARIJUANA

Although Amendment 2 failed, Florida still has a limited 
medical-marijuana program in the works - but it is tied up in a legal 
dispute while families wait in limbo.

The treatment would be an oil, commonly called "Charlotte's Web," 
made from a noneuphoric strain of marijuana to treat relentless, 
intractable seizures in children.

The state Department of Health in August established rules for making 
the product available, planning to have everything in place by Sept. 
30 so it could award growers' licenses in time for an early 2015 crop.

However, several big, potential cannabis growers expressed strong 
disagreement over how the state planned to select and license 
companies, and filed formal protests.

A ruling on the issue, from Judge W. David Watkins of the Florida 
Division of Administrative Hearings, has been expected for weeks and 
is due no later than Tuesday. He could order the state to rewrite the 
rules, adding months to the timetable.

The delay is frustrating for some of the thousands of families in 
Florida, such as the Holls of Longwood, who want the chance to try 
the oil. Their adult daughter Megan has violent seizures that 
arrested her mental development as a 2-year-old.

"Any one of the seizures that Megan continues to have, as we continue 
to wait, could be fatal," said her father, Rob Holl. "Every time I 
check on her at night or wake her in the morning, I walk into her 
room hoping that that seizure hasn't happened."

The Hymans of Weston, whose 9-year-old daughter, Rebecca, can have 
dozens of seizures a day, also are waiting.

"The pain and suffering continues, and my daughter's situation is 
worsening, with no foreseeable remedy options in the near future," 
said Rebecca's father, Seth Hyman. "My wife is a wreck."

Holley Moseley of Gulf Breeze is part of an organization called The 
Realm of Caring Florida that seeks to educate people about the oil 
and has become the center of a network of families awaiting the drug. 
She estimated 125,000 people in Florida have intractable epilepsy, 
meaning nothing controls their seizures.

"It's tough," Moseley said, adding that she had heard from two 
families in the previous day whose children were rushed to the 
emergency room because of terrible seizures. And her own daughter, 
Rayann, 11, "checked out of school today because of increased seizure 
activity."

"So I'm torn," she continued. "Even though I want it to be here 
today, at the same time I want it to be done correctly so we have a 
safe product. Throughout this process we've been holding on through 
faith, and it has gotten us this far."

Her group is holding a public education forum in Orlando at 10 a.m. 
Saturday, co-hosted by the Epilepsy Association of Central Florida, 
at Concorde Career Institute, 3444 McCrory Place. The mother of the 
first Charlotte's Web patient, Paige Figi of Colorado Springs, is a 
guest speaker. Reservations may be sought through  or The new Florida law, approved last spring as Senate Bill 1030, also 
allows the oil to be used by other patients with neurological 
disorders such as Parkinson's disease, as well as by some cancer patients.

The fight in Tallahassee centers primarily on how companies might get 
licenses to grow, process and sell the oil. The law requires that 
only plant nurseries with 30 years' experience and registered to 
handle at least 400,000 plants can apply. That narrows the field to 
about 40 companies eligible for five regional licenses.

The Department of Health decided to award those licenses through a 
lottery. Several growers challenged, saying those with the best 
proposals should get the licenses. The growers also challenged other 
rules, including where the product oil might be sold.

Once all of the government rules are worked out and licensed 
companies are selected, the marijuana still must be grown and 
processed into the oil in Florida. Kerry Herndon of Kerry's Nursery 
in Apopka estimated that might be done in as little as 14 weeks.

But to do it the way experienced growers would prefer - developing 
several generations of the crop through cuttings to control quality - 
could take at least six months, he said.
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MAP posted-by: Jay Bergstrom