Parents of perhaps thousands of children with unrelenting epileptic seizures are holding their breath today as a bill that would decriminalize light-strain medical marijuana comes under attack from a drug-policy official with no background in medicine, science or agronomy.
Kevin A. Sabet, director of the University of Florida's Drug Policy Institute, has a Ph.D. in public policy from Oxford University and a propensity for arguing against decriminalization of any part of the marijuana plant that isn't already in a clinical trial or with a pharmaceutical company.
Sabet has prepared what he calls his "One Page Fact Sheet on CBD For Florida Lawmakers" (It's in the attachment below). In it, he concludes that SB 843, Reps. Matt Gaetz and Katie Edwards' bill now before the House Criminal Justice Subcommittee, "would be meaningless" if passed. (See the latest draft in the attachment below.)
"This is absurd," said Seth Hyman, father of 8-year-old epileptic Rebecca Hyman. "Every time my daughter goes into a seizure, I wonder if this is the time she won't come back to us. TheFlorida Legislature is all the hope we cling to. I hope they (legislators) aren't going to take what this guy says as expert opinion."
This is what Sabet says on his "fact sheet":
-- "Children with epilepsy are eligible to receive a purified CBD product (Epidiolex) through a special FDA Investigational New Drug (IND) program"
And here's what's wrong with what he says:
These children are not eligible to receive anything. At least not in Florida. There is no such program in this state. Dr. Ian Miller at Miami Children's Hospital has applied to run clinical trials, but he hasn't heard back. Even if he gets approval, there's no telling how many children will be authorized to take the drug.
Two states, and only two states, have orphan drug programs. Florida is not one of them. Marijuana is classified by the federal government as a schedule 1 drug -- meaning it cannot legally be sent through the mail across state lines. So our sick children would never be able to join, say, the Missouri orphan drug program. Nor could they get a CBD-like product (part of the marijuana, but something that doesn't produce a "high") mailed from Colorado.
Also, each program is licensed for only 125 patients. Let's say Miami Children's Hospital runs its clinical trials and later is granted orphan-drug status for 125 patients, just as the other programs. What happens to the hundreds of children who can't sign up because the program is full?
More important, what happens to children who take Epidiolex and it doesn't work for them? Remember, this is a GW Pharmaceuticals drug. It's made by extracting only one chemical from the weed. But children in Colorado taking the Charlotte's Web strain are getting more than 400 natural chemicals. Who's to say onlyEpidiolex -- not one or more of the 400 chemicals omitted from the pharmaceutical product -- is the only right one?
Sabet's suggestion is lame at best -- that "the Legislature pass a resolution urging an expansion of the IND program."
I can't speak for others on the Criminal Justice Subcommittee, but fortunately, Gaetz, R-Shalimar, and Edwards, D-Plantation, are unfazed.In fact, if anything, they show more resolve than before to succeed.
Asked whether Sabet's comments were offputting, Gaetz said, "He's going to be like any other advocate. It depends on his qualifications and expertise whether he'll have anything to add to this discussion. But I'm going to proceed along the path of least resistance, not the path of most resistance, to get this drug in the hands of those who need it so desperately. We owe them nothing less."
Edwards said all Sabet has done "is make me more determined. This man isn't even a medical doctor. He's like a cheerleader for Big Pharma. He tells us what 'experts' say we need to make the right cannabidiol (CBD) compound, but when I asked him to produce the experts and we'll be happy to listen to them, he doesn't tell us who they are.
"These families have suffered enough," she said. "I'll be darned if I'm going to let somebody like this bring our efforts to a halt."
You have to ask yourselves, where has Sabet been? Even CNNs Dr. Sanjay Gupta sings the praises of nonpsychoactive CBD, recognizing it is highly effective for many severe and chronic health problems, from shrinking malignant tumors to improving overall insulin sensitivity.
Sabet served in the White House under Presidents Clinton and George W. Bush, and most recently as senior drug policy adviser for President Obamas drug czar.
More important, this co-founder and director of SAM (Smart Approaches to Marijuana) -- nicknamed "the pot-haters club," once scribbled a mean-spirited litte note to the Boston Globe saying: Medical marijuana is a big fat headache that serves no one but people who want to get high.
Sabet is a hard man to take seriously. I've seen speckled trout with more feeling, and frankly, it surprises me the University of Florida -- which down the road might have brought in millions from cultivation, research and development -- actually employed him and now must watch him try to suck the life out of perhaps the most groundbreaking piece of legislation to come along in Florida in many years.
Irvin Rosenfeld, 61, is a uniquely qualified supporter of HB 843. The Fort Lauderdale stockbroker is one of only two remaining patients of the federal government who is prescribed marijuana cigarettes. Yes, prescribed. The government sends him 300 every month and has done so for the last 31 years. They come from plants grown on a University of Mississippi farm, they are low in the euphoric plant strain, and without them he couldn't function.
"I was diagnosed with a rare disease at age 18," he told me. "I have bone tumors all over my body. At age 29 the government started me on marijuana. I couldn't live with the pain without them."
Rosenfeld said he thinks he gives hope to families with intractable epilepsy -- epilepsy that drugs can't cure. They know he has a terrible illness, but they see him living a full life. "I think, I hope, it helps," he said.
"What I'd really like to do is debate this guy Sabet. I'd like to hear him tell me how bad marijuana is for me. This is what he does, you know. I mean, how cold is this fact sheet -- going out of his way to find things to discourage help and hope."
Seth Hyman said he has a question for Sabet and even the Florida Legislature: "Why should our children suffer?" he asks. "Are the children of Florida worth any less than the children of Colorado? Our daughter has between 10 and 50 seizures a day. I don't know how many more her little body can take."
Sabet told Gaetz and Edwards the Legislature should"press the FDA to expand research sites" and "carefully examine the need in Florida." These are the worse kind of insults because they hurt so many people. As Hyman and Rosenfeld both say, this medicine has been proved to work in other states, no more research is needed.
The families holding out their arms to the Florida Legislature remind me their children have a less than 90 percent chance of living past the age of 20. They are dying. They don't need more research, they need relief, whatever it takes and quickly.
Asked what their preference would be if they could have one, they told me this: for federal and state governments to allow the importation of oil from other states.
"This is going to be a good bill if it doesn't get changed too much," Hyman said. "But there is no perfect bill. This just happens to be all the hope we have right now."
Reach Nancy Smith at email@example.com or at 228-282-2423.