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UPDATE: Babies, Bathwater and Cannabis Oil

"We'll gladly risk this. We're already in prison."

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UPDATE: April 16, 2015

After a long, emotional fight through the 2015 session of the Idaho Legislature where proponents of Senate Bill 1146aa ultimately secured passage of the measure which would provide a legal defense for parents of children who use cannabis oil for relief from severe epileptic seizures, Governor C.L. "Butch" Otter vetoed the bill in the late afternoon hour of April 16, 2015.

The bill had been the subject of some of the most emotional testimony of the recently-wrapped legislative session and, on more than one occasions, the bill appeared to be dead. Yet proponents of the measure kept pushing on, until both the Idaho House and Senate agreed that it should become law.

But Otter, who had sent his top drug czar to testify against the bill during committee hearings, said "There were too many questions and problems and too few answers and solution in this bill to let it become law."

"Of course I sympathize with the heartbreaking dilemma facing some families trying to cope with the debilitating impacts of disease," wrote Otter with his veto. "[The bill] asks us to legalize the limited use of cannabidiol oil, contrary to federal law. And it asks us to look past the potential of misuse and abuse with criminal intent."

UPDATE: April 6, 2015

On Monday, April 6, the Idaho House approved, in a 39-30 vote, the much-debated Senate Bill 1146aa, which provides a legal defense for parents, grandparents and guardians of children who suffer from severe epileptic seizures when they choose to use a non-psychotropic cannabidiol oil for relief.

"You're going to hear a lot about how the sky is falling if we do this," said sponsor Iona Republican Rep. Tom Loertscher when he introduced the measure to the House floor.

And indeed, opponents pushed back hard in a two-plus hour debate, saying that approval was a "slippery slope" toward legalization of marijuana. But the bill, otherwise known as "Alexis' Law," doesn't legalize anything. Instead, it allows parents and guardians of children who suffer from extreme seizures to formally talk with their physicians, almost always neurologists, about the possibility of using the oil for relief. To date, it has been illegal for Idaho doctors to consult with their patients regarding the oil.

Rexburg Republican Rep. Dell Raybould told a heartbreaking story about how his granddaughter had died in his wife's arms after suffering through seizures through most of her five years.

"She suffered these seizures time and time and time again,' said Raybould. "Had this product been available then, we would have done everything in the world to use it."

But Democratic Rep. John Rusche, a physician, said he would vote against the measure.

"We need to know what we're doing here," said Rusche. "And the scientific study on the use of this drug is sadly lacking."

Boise Republican Rep. Lynn Luker called the issue, "the most difficult of the session and I have to vote no."

But Burley Republican Rep. Fred Wood, a former physician, said his yes vote "wasn't difficult for me at all. I'll sleep well tonight when I vote in favor of this."

Ultimately, Rusche was the only Democrat to join 29 Republicans in voting against the bill.

The April 6 vote came less than one week after a stunning reversal from the Idaho House State Affairs Committee, which initially killed the measure in a tie vote but then picked the bill up again and passed it, sending it to the full House. The bill has already passed through the Idaho Senate and now it heads to the desk of Governor C.L. "Butch" Otter who has publicly voiced his opposition to the measure.
UPDATE: April 2, 2015

In a stunning reversal, the Idaho House State Affairs Committee voted 12-4 on Thursday, April 2 to approve a bill that would provide a legal defense for the use of non-psychotropic cannabidiol oil to treat intractable epilepsy and other seizure disorders.

Senate Bill 1146aa was passed by the Senate on March 24 but stalled in the House State Affairs Committee on an 8-8 vote March 30. In a surprising move, the committee decided to revisit the legislation April 2, when several lawmakers switched their votes.

Reps. Ken Andrus, R-Lava Hot Springs; Linden Bateman, R-Idaho Falls; and John McCrostie, D-Garden City, reversed their "nay" positions on the bill and were joined by Rep. Paulette Jordan, D-Plummer, who was absent for the March 30 vote. 

Rep. Brent Crane, R-Nampa, who opposed the measure on March 30, was not present for the April 2 vote.

Though unusual, the practice of returning to a bill after it has been voted on isn't unheard of.

"Any time a bill is held in committee it can be brought back by a member," said House State Affairs Committee Secretary Kasey Winder.

McCrostie, who was the only Democrat on the committee to side with Republicans to hold the bill, requested that it be reconsidered.

Otherwise known as "Alexis' Law," SB 1146aa is named for 10-year-old Alexis Carey, who suffers from an intractable form of epilepsy called Dravet Syndrome. Her mother, Clare, has lobbied the Legislature for several years to pass a bill that would open the way for parents to legally obtain cannabidiol—a low-THC extract of cannabis—which has been shown to lessen seizures in children with similar conditions.

The bill met with stiff opposition from Gov. C.L. "Butch" Otter's drug czar, Idaho Office of Drug Policy Director Elisha Figueroa, who told lawmakers on March 30 that "this is not hemp oil you can buy at the Co-op. This is marijuana, a Schedule One drug, and Idaho will be violating federal law if this passes."

Supporters of the bill, including parents and pediatricians, argued during an emotional, marathon public hearing March 30 that cannabidiol offers substantive relief from the symptoms of life-threatening seizure disorders.

Speaking of her 11-year-old daughter Marley, who experiences between two and 100 seizures per day, Natalie Stevens said on March 30 that, "‘Seizure’ means Marley can never be out of my sight; it means that she has scars from biting her tongue all the time; it means that her breathing stops, it means missing school and missing work; it means sleepless nights and agonizing days. Seizures are our prison. We’ll gladly risk this. We’re already in prison. We would rather be arrested and have an affirmative defense."

SB 1146aa now heads to the full House for consideration. According to Winder, that could happen as early as Monday, April 6. 
UPDATE: April 1, 2015

In a surprise move, the Idaho House State Affairs Committee agreed to reconsider a controversial cannabidiol oil bill that died only two days earlier. In effect, when committee members reconvene April 2, they could reverse themselves and approve the measure which could provide an "affirmative defense" for parents who use the oil as relief for the children who suffer severe epileptic seizures.

The bill's future was put into peril March 31 when, after hours of every emotional testimony, the committee deadlocked 8-8, thus putting the bill back into a drawer.

But now, Plummer Democratic Rep. Paulette Jordan, who was absent from the vote, says she supports the bill, and Garden City Democratic Rep. John McCrostie, who initially voted against the bill, now says the measure should be reconsidered.

Committee Chairman Rep. Tom Loertscher cautioned his fellow lawmakers that there would not be any more public testimony on Thursday, just some discussion among committee members and an ultimate vote.

ORIGINAL STORY: March 31, 2015

The only thing more dramatic than the testimony heard March 30 by the Idaho House State Affairs Committee was the committee's vote. The hearing, to consider whether to grant parents an "affirmative defense" to use cannabidiol oil to help reduce the severity or number of their children's epileptic seizures, lasted nine hours—long after most of the rest of the Legislature had gone home for the evening.

After a physically and emotionally exhausting two-part hearing, in which parents held back tears while pleading for their children's comfort, the committee deadlocked 8-8, effectively killing the bill. Garden City Democratic Rep. John McCrostie joined seven Republican legislators in voting against Senate Bill 1146aa. Plummer Democratic Rep. Paulette Jordan was not present for the vote.

"It's a tie," said Committee Chair Rep. Tom Loertscher, R-Iona, who voted with four Republicans and three Democrats in favor of the bill, sponsored by Boise Republican Sen. Curt McKenzie.

Members of the public who had endured the marathon, sat stunned after spending the day imploring lawmakers to help their children.

"I'll try to contain my emotions," said Holli Bunderson, whose son suffered his first seizure when he was 10 months old. He has since had a tumor and a cyst removed from his brain and been diagnosed with autism and limbic rage syndrome, which triggers violent seizures that wrack his 7-year-old body.

Dr. David Bettis, a pediatric neurologist who works with many of the Idaho families coping with their children's severe epilepsy, cautioned lawmakers, "not to throw the babies out of with the bathwater."

"I would urge you not to overemphasize the bathwater," he said. "Let's keep in mind that these children deserve this kind of help. Yes, I struggle with the illegal transport of the drug as much as anyone, but that's the part of the bathwater. We can work that out."

Natalie Stevens said she was prepared to testify before the House committee because she was an expert.

"I'm an expert on my daughter," Stevens said. Her daughter is 11-year-old Marley, who suffers between two and 100 seizures every day.

"You've heard the word 'seizure' over and over today," said Stevens, "but when you hear it over and over, you forget what that entails. 'Seizure' means Marley can never be out of my sight. It means that she has scars from biting her tongue all the time. It means that her breathing stops. It means missing school and missing work. It means sleepless nights and agonizing days.

"Seizures are our prison," she added "We'll gladly risk this. We're already in prison. We would rather be arrested and have an affirmative defense."

Opponents of the bill brought out the big guns, figuratively, with Idaho police, sheriffs, prosecutors and Elisha Figueroa, director of the Idaho Office of Drug Policy, pushing hard against SB 1146aa.

"Yes, this is heart wrenching, but I want to be clear: this is not hemp oil you can buy at the Co-op. This is marijuana, a Schedule One drug, and Idaho will be violating federal law if this passes," said Figueroa, who was appointed as drug czar by Gov. C.L. "Butch" Otter.

"We have a very real criminal element in this state that is looking for a shield for their activity, and this law does just that," he added.

Figueroa urged the committee to instead support Senate Bill 1156, which would direct the Idaho Department of Health and Welfare to administer a special program including trials and oversight of the pharmaceutical drug Epidiolex.

The Epidiolex trial would include approximately 25 to 30 people, but at least one estimate during the March 30 State Affairs Committee hearing indicated that there approximately 1,200 Idaho children suffering from severe seizures.