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4A NEBRASKALEGISLATURE OMAHA WORLD-HERALD …...hemp oil. The bill would permit the use of...
Transcript of 4A NEBRASKALEGISLATURE OMAHA WORLD-HERALD …...hemp oil. The bill would permit the use of...
it is legal.Legislative Bill 390 would
allow the University of Nebras-ka Medical Center to treat 50 orso children with the extract andtrack how they respond. But it isnot the legislation that Buddenand other parents have urgedsenators to pass.
They prefer a proposal thatwould allow cannabis to treat anarray of diseases and conditions,including epilepsy. The parentshave argued that the UNMCpilot study, while important,wouldn’t do enough to help chil-dren or adults whose lives hangin the balance.
“We may not even get toenroll her in the study,” Buddensaid. “We don’t know if her nextbig seizure will be life-impact-ing, so when is it going to be herchance to get help?”
Meanwhile, the neurologistwho would direct the UNMCstudy expressed concern thatthe desperation felt by someepilepsy patients and theirfamilies has driven expecta-tions to unrealistic levels. Inother words, when it comes tomarijuana, hope has produced adegree of hype.
“I don’t believe this to be amiracle cure, and I don’t believethis to be a silver bullet,” Dr.Deepak Madhavan said. “I viewthis as a novel treatment for pa-tients that have tried and failedall other forms of treatment.”
Advocates and patients havegrown skeptical and frustrat-ed with the cautious approachcounseled by many medical andpharmaceutical professionals.They point to patient testimo-nials, supported in some casesby emerging clinical research,from the 23 states that havelegalized medical cannabis.
Advocates fear that the studylegislation will give Nebraskalawmakers a politically safer op-tion than LB 643, which has beentitled the Cannabis Compassionand Care Act. While the Judicia-ry Committee easily advancedthe study legislation, membershave yet to vote on the cannabisact because of various concerns,including its fiscal impact.
Still, advocates urge the pas-sage of both bills.
Meanwhile, others areworking to defeat the proposals,though neither would allow rec-reational use of marijuana.
Nebraska Attorney GeneralDoug Peterson particularlydislikes the broader measure,saying it would make whatremains a federally classifiedillegal drug easier for youths toobtain and abuse. His office hasbeen lobbying senators to voteagainst the legislation.
Gov. Pete Ricketts hasconsistently said he opposesstate-by-state legalization ofmedical marijuana. The drug, hesaid, should go through the samefederal testing and regulationas any other medicine beforepatients have broad access to it.
Though the study bill wouldprovide for a limited, re-search-based approach, Rick-etts opposes it as well, said hisspokesman, Taylor Gage.
“While the governor ap-preciates thoughtful medicalresearch, proponents of medicalmarijuana already have a pro-cess to follow,” Gage said in anemail. “Those seeking approv-al for its medical use shoulduse the existing approval anddevelopment process set up bythe U.S. Food and Drug Admin-istration.”
The study bill would allow en-rolled epilepsy patients to takea medicine derived from plantstrains with trace levels of THC,the component that producesthe high for which marijuana isfamous. The non-psychoactivecomponent is cannabidiol, orCBD, frequently referred to ashemp oil. The bill would permitthe use of cannabidiol contain-ing less than three-tenths of 1percent of THC. In comparison,marijuana sold on the street cancontain THC levels of 10 percentor higher.
In a dozen states, includingIowa, it is legal to use cannabidi-ol, with varying levels of THC.The list includes states that limitaccess to the medicine for thoseenrolled in a study.
In Colorado, where medicalmarijuana is legal, Lisa Krollmixes one-half milliliter of CBDoil with flavored water and givesit to her 5-year-old daughtertwice a day. Kroll, an Omahanative, spoke on the conditionthat she be identified only by hermaiden name.
The daughter’s epilepsyemerged about two years agoand worsened to the point thatshe was having seizures daily.Kroll tried multiple drugs, dietsand other treatments, but herdaughter’s seizures continued.Kroll quit her job to care forthe girl, her husband had tochange jobs, and the couplespent $35,000 out of pocket fortreatments in one year.
Last May they started usingthe oil, which Kroll said costsabout $100 per month. Results
came gradually, but her daugh-ter has not suffered a seizuresince Sept. 30. Now her parentsplan to enroll her in kindergar-ten — something that wouldhave been impossible before.
“It’s changed our lives tre-mendously,” Kroll said. “Therewere two years we didn’t seeher real smile. Once the seizuresended, we saw that smile andthat giggle come back.”
Kroll said she wants Nebraskato adopt the broader medicalmarijuana law so other familiesin crisis could see if the drugmight help them. It also wouldmake it possible for her to bringher daughter to Nebraska tovisit relatives, and legally bringthe medicine with them.
The most well-known of theCBD products is Charlotte’sWeb, named for a young epi-lepsy patient in Colorado whoonce suffered from hundreds ofmassive seizures weekly.
“People don’t understand ...this is life or death,” Paige Figi,the girl’s mother, said in Marchwhile testifying before the Ne-braska Legislature’s JudiciaryCommittee.
Critics of Nebraska’s studybill have raised concerns aboutthe number of children whowould be allowed to participate.The national Epilepsy Founda-tion estimated that about 17,000Nebraskans live with the dis-order, although the foundationcould not provide an estimateof the number of children. TheState Department of Health andHuman Services said it doesn’ttrack the number either.
Shelley Gillen of Bellevue,who recently walked the Capitolhallways with photos of thebloody facial injuries her sonhas suffered in falls, said shebelieves there are several thou-sand children with intractableepilepsy in Nebraska. She pre-dicted demand to get children inthe study would be considerable.
“We don’t even know if he’dget one of the golden tickets tobe in the study,” she said.
The bill calls for a team to as-sess potential study participants,who would be referred to UNMCby their treating physicians. Theestimated $250,000 annual costof the project was based uponenrolling 50 participants, butthe bill does not cap the numberallowed in the study, said Sen.Sue Crawford of Bellevue, whointroduced the legislation.
Crawford, who set out to helpchildren with epilepsy in 2013,admitted that she feels stung bythe criticism of her bill. Thoughshe said she doesn’t supportthe broader cannabis bill, shedoesn’t view it as an either-orchoice for her fellow senators.
Madhavan, who directsUNMC’s comprehensiveepilepsy program and treatspatients in his practice, said thepopulation of children who haveexhausted all medical optionswithout improvement is small,although he did not have a specif-ic number. While he wanted tocounter those who would “my-thologize” cannabidiol, he alsosaid the study would be a worthyendeavor.
“In the interest of being theirphysician and advocate I want totry anything I can to make thembetter,” he said. “If cannabidiolmakes them better, great. If itdoesn’t, at least we’ve tried it.”
Because the federal govern-ment classifies marijuana as acontrolled substance with nomedicinal benefits, scientificresearch on the drug is high-ly restricted. Many medicalprofessionals have said the drugshould be reclassified so re-search can more easily be done.
The American Academy ofPediatrics, a mainstream associ-ation of 62,000 child doctors, re-cently went a step further whenit said cannabinoids should be anoption for children with debili-tating or life-limiting diseaseswho cannot wait for the lengthy
research process to play out.The Nebraska Medical Associ-
ation and the Nebraska Sheriff’sAssociation both support thestudy bill but oppose the broad-er cannabis proposal.
The Epilepsy Foundation saysthe anecdotal reports of parentswho say cannabidiol has helpedtheir children can’t be ignored.So the group supports passageof state medical cannabis laws,in large part because it wants tosee cannabidiol regulated, saidBeatriz Duque Long, the founda-tion’s spokeswoman.
It’s time for more regulation,higher standards of quality con-trol in cannabis medicine andmore engagement by medicalprofessionals, said Dr. MargaretGedde of Colorado, who advisesparents on how to treat theirchildren with cannabidiol.
Many parents in her state aretreating children on their own,which she said is potentiallydangerous because the wrongdose of cannabidiol or THC canworsen seizures.
Late last year Gedde releasedthe results of an “observationalstudy” of 107 patients. It foundthat 71 percent reported at leasta 50 percent reduction in sei-zures, and 11 percent said theyno longer had any seizures afterusing cannabis extract. Thepatients used a range of prod-ucts that included high CBD oiland drugs with slightly higherpercentages of THC.
Another paper, released bythe American Epilepsy Societyand based on a survey of 58children in Colorado who weretaking cannabis extracts, foundthat only 31 percent reported atleast a 50 percent reduction inseizures.
In Nebraska, some parentsdealing with epilepsy say theywon’t independently give the oilto their kids in violation of statelaw. They fear that child pro-tective services could removethe children from their homes ifthey were found to have canna-bis in their systems.
Budden said her daughter istaking a conventional pharma-ceutical drug used as an emer-gency anti-seizure agent. Themother said she worries aboutthe long-term side effects ofall the medicines that Alice hasbeen on in her young life.
Budden and her husbandwould most likely move to Iowaif Nebraska chooses not to enacta medical cannabis law.
It’s not what they want, shesaid, but considering that onein 150 patients with intractableepilepsy dies suddenly fromseizure disorders, they feel theyare running out of options.
“We’re trying to do it the rightway,” she said.
Contact the writer:402-473-9587, [email protected]
Cannabis:UNMC doctor doesn’tbelieve marijuana is a ‘miracle cure’Continued from Page 1
Alice Budden, above,works on pronouncingher “K” sound withthe help of Dr. OlgaDelgado, a speech-language pathologist,at ProCare3 inPapillion. The vibratingtongue depressorhighlights the partof the tongue to usewhile preventing thefront of the tonguefrom forming a “T”sound. At left, Alicewith her mother, BeckyBudden. Buddenand other parents ofchildren with epilepsyare urging Nebraskalegislators to pass abill that would allowthe use of cannabisto treat epilepsy aswell as an array ofother diseases andconditions.
“Wemay not even get to enroll her in the study. We don’t know if her next big
seizure will be life-impacting, so when is it going to be her chance to get help?”
Becky Budden, mother of Alice, 4
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