By Will Hall
BATON ROUGE – The Louisiana Senate is considering a bill that would expand the list of diseases which would qualify for treatment with medical marijuana in Louisiana.
Unfortunately, the Senate Health and Welfare Committee which moved the bill out of committee without objection April 13 did so largely on the basis of Sen. Fred Mills’ call for good “sense” – which argued against the prevailing body of scientific research that overwhelmingly does not support his position.
Mills, who chairs this committee and authored SB 271, is a pharmacist who owns a pharmacy in Marks, Louisiana.
But despite coming from a medical background, he seemed to eschew the science which should have contributed more heavily to the decision.
It’s fair to say his position can be represented in part by comments from his opening statement in support of his own bill.
Talking about the “memory lane” of how this bill came to the committee in its present form, Mills talked about the various constituents who had some say in the process.
“We would expand on disease states,” Mills said they promised each other.
“We would find an opportunity that we would not open the door for every single solid disease state that didn’t ‘make sense’ – which is not an accurate statement, because everything ‘makes sense’ if a physician and a patient wants to prescribe something,” he continued. “I really think that’s an art within the medical community.
“But that was very important to all of us to expand the disease states,” he said.
Please don’t misunderstand — he shared moving anecdotes about meeting a number of people crying out for some form of remedy and how that motivated him, and compassion is important in this discussion to an extent.
Moreover, there were some compelling personal testimonies from individuals whose bodies are in torment from a number of ailments, and they offered convincing appeals for relief.
Some parents tearfully urged the committee to help them help their children.
There also was a great explanation about the physiology and processes of the brain by Rick Rogers, the associate director of science for Pennington Biomedical, a stakeholder in the discussion because of possible payoffs for patents it holds.
But in the end, even he conceded medical marijuana was only “likely” to be useful at this point, adding it might be “very likely” to be useful.
“Do we know for sure clinically? No, we do not,” Rogers confessed.
The ambiguous status about the effectiveness of medical marijuana was something Jefferson Parish Sheriff Newell Normand emphasized in great detail during his testimony.
He noted there is a proliferation of conditional statements offered by most proponents of expanding medical marijuana, and cited such waffling phrases as “would likely receive benefit,” “might benefit,” “would or might receive therapeutic benefit,” “potential benefits may outweigh health risks,” and, “may alleviate a condition.”
“Why are these terms there?” Normand asked, “Because the science is not there, yet.”
Stephanie Haynes, from Smart Approaches to Marijuana LA (SAM), read a letter from one of the oldest and venerated medical advocacy groups in the nation.
She said, “The American Epilepsy Society states that use of marijuana oils to treat children sick with epilepsy can cause ‘severe dystonic reactions and other movement disorders. Developmental regression, intractable vomiting and worsening seizures that can so severe they have to put the child into a coma to get the seizures to stop.'”
Unfortunately, her credibility was questioned because of an apparent text message someone in the audience sent to a committee member.
Reading from his cell phone, Sen. Jay Luneau referenced a study published by an equally august organization. But, apparently he did not have a chance to read the actual full study or the accompanying comments by the team who published it.
“The American Academy of Neurology in 2015 released a study that says they monitored 137 people over a 12-week study and the number of seizures from epilepsy decreased by an average of 54 percent,” Luneau read. “Now that sounds pretty promising to me.”
“I didn’t get that at all from your testimony,” he added during the discussion. He also, struggled to balance the competing claims.
“It appears to me that what you’re telling us is inaccurate and I’m trying to figure out, “Am I missing something here?” he explained.
Unfortunately, whoever sent the text did Sen. Luneau a disservice, and if this bill does succeed in expanding the disease list, that self-serving person will have done Louisianans a disservice, too.
Here’s what one of the lead authors of the research effort said in a press release about the report.
“I empathize with parents who are looking for answers and will try anything to help their children suffering the devastating effects of intractable epilepsy,” said Orrin Devinsky of the New York University Langone Comprehensicve Epilepsy Center and a Fellow of the American Academy of Neurology.
“But we must let the science, and not anecdotal success stories and high media interest, lead this national discussion,” he cautioned. “Taking CBD in a controlled medical setting is vastly different from going to a state where medical marijuana is legal and experimenting with dosing and CBD strains.”
Furthermore, in the write-up, Devinsky and his co-authors described the study as “open-label” which is a research term akin to “open call.”
The short of it is that research bias is rife in these kinds of “pilot studies” because there is no placebo group — everyone gets the medicine and knows it.
In this case, G.W. Pharmaceuticals, a Pennington competitor, provided the medical marijuana, and the research team invited members of epilepsy groups to participate.
Consequently, the “Halo Effect” was likely in play — basically, this means people look for improvement when they’re searching for a cure for themselves or a loved one, and as the saying goes, “you get what you look for.”
Also, the “data” came from records kept mostly by the desperate parents of the patients – not from trained researchers making objective observations.
Even so, the press release noted a large number of serious negative impacts: “20 patients had serious adverse events related to CBD use – most commonly status epilepticus, or seizures that last too long or too close together. Five patients had to discontinue treatment due to these adverse events.”
The good thing is that Devinsky is now employing the gold standard of research methodology in a new study – a randomized controlled trial where some patients will receive a placebo and others the treatment, and presumably, the observations will be made by objective researchers.
This follow-up research might actually produce relevant data which could contribute to the discussion.
In his closing remarks, Mills again played on the emotions of the committee, summing up his appeal with a humorous homespun tale about an elderly man who outsmarted a group of scientists. Unfortunately, because it was a personal story, it did not lend itself to fact checking (not just for accuracy of the details, but the context, too).
In the end, his disarming approach and appeal for humanity won the day over the evidence, and now the full Senate will be considering the merits of expanding the disease list as proposed in SB 271.
Louisianans can only hope that the whole Senate will take a more considered approach to the science of the matter, weighing the evidence of the research more than the “could be, would be, should be” of one person’s — or even a group’s — subjective opinion of what “makes sense.”
It’s just too important a matter to decide on the basis of personal charm or heartfelt emotion, no matter how compelling.
Dr. Will Hall is director of the Office of Public Policy for Louisiana Baptists.