The fallout that's come from state lawmakers Kevin Eltife's and Stephanie Klick's introduction of legislation that would legalize low-THC cannabis oil for use by Texans with intractable epilepsy is a prime example of what happens when you fight the symptom rather than the disease. The two Republicans' bills are tailored specifically to help a small subset of those who could benefit from medical marijuana, a subset that happens to feature a precocious 9-year-old with doting, conservative parents as its face.
Adhering to those limits and thinking that might be just enough to squeeze legislation past two bodies more concerned with keeping government as small as possible except when it comes to bedrooms, medicine cabinets and protecting rural Texans from evil cities, Eltife and Klick built something that even the Bortells can't support in its current form.
If the bill doesn't change, Dean Bortell (Alexis' dad) says, his daughter will be faced with leaving the state that she loves -- for Colorado, which has legalized the treatment Alexis needs -- at the end of the school year.
"Alexis likes Colorado as far as the view goes, she likes the mountains, but everything that she knows, including her family, is in Texas," Bortell says. "She does not want to leave."
The family is doing what it can to make that happen, lobbying Eltife and Klick to fix the bill for Alexis and everyone else in Texas. Bortell says four things need to happen for the bill to adequately address the problem it's purportedly trying to fix.
First, the amount of THC in the cannabis oil that would be legalized needs to be determined by physicians, not a legislative restriction, he says.
"Texas claims to hate Obamacare as a government and yet we're about to pass our own version of Obamacare where the government mandates not only the medicine, but the dosing," Bortell says. "We need to leave the dosing decision up to the doctors. They can stay oils, we're not saying they have to allow plants and smoking, not at all, we're not saying that at all. The bill can be saved with oils, but leave the dosing to the professionals."
The bill would also take too long to give anyone who qualified for the cannabis oil any relief, Bortell says. Texans wouldn't have access until 2018, were the current version of the law to pass. By 2018, Alexis will have potentially suffered the effects of 300 more epileptic seizures. If the state wants to wait, according to Bortell, it should have a reciprocity agreement with states that have legalized cannabis oil in the meantime.
The definition of intractable in the law troubles Bortell as well.
"There is some ambiguity in the law," he says. "It says that intractable epilepsy is defined as failing two medicines, but then two lines down from that it says you must have no other FDA-approved alternatives available to you. So, does that mean that I have to let them do brain surgery on my daughter or put a brain implant into her brain -- the VNS simulator -- before she's eligible for cannabis treatment? That needs to be cleared up."
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Last, the Bortells would like to see more conditions included in those eligible for treatment.
"I by no means advocate big government, but there needs to be some governing body of medical professionals not tied by appointment or by honorary appointment to any pharmaceutical company. The need to sit on a committee and regular intervals to review petitions to add conditions to the list of qualifying conditions."
Do those things, Dean Bortell says, and his family will be able to stay and Alexis will have access to medicine that doctors believe she needs. Otherwise, she, Dean and the rest of the Bortells will continue their fight from Colorado.
"We haven't come this far to give up," Bortell says. "I hope [the legislators] reach out to us and we're allowed to help them fix these bills into something that will actually help more than the number of people that it appears the bills are going to help as written."