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it is legal. Legislative Bill 390 would allow the University of Nebras- ka Medical Center to treat 50 or so children with the extract and track how they respond. But it is not the legislation that Budden and other parents have urged senators to pass. They prefer a proposal that would allow cannabis to treat an array of diseases and conditions, including epilepsy. The parents have argued that the UNMC pilot study, while important, wouldn’t do enough to help chil- dren or adults whose lives hang in the balance. “We may not even get to enroll her in the study,” Budden said. “We don’t know if her next big seizure will be life-impact- ing, so when is it going to be her chance to get help?” Meanwhile, the neurologist who would direct the UNMC study expressed concern that the desperation felt by some epilepsy patients and their families has driven expecta- tions to unrealistic levels. In other words, when it comes to marijuana, hope has produced a degree of hype. “I don’t believe this to be a miracle cure, and I don’t believe this to be a silver bullet,” Dr. Deepak Madhavan said. “I view this as a novel treatment for pa- tients that have tried and failed all other forms of treatment.” Advocates and patients have grown skeptical and frustrat- ed with the cautious approach counseled by many medical and pharmaceutical professionals. They point to patient testimo- nials, supported in some cases by emerging clinical research, from the 23 states that have legalized medical cannabis. Advocates fear that the study legislation will give Nebraska lawmakers a politically safer op- tion than LB 643, which has been titled the Cannabis Compassion and Care Act. While the Judicia- ry Committee easily advanced the study legislation, members have yet to vote on the cannabis act because of various concerns, including its fiscal impact. Still, advocates urge the pas- sage of both bills. Meanwhile, others are working to defeat the proposals, though neither would allow rec- reational use of marijuana. Nebraska Attorney General Doug Peterson particularly dislikes the broader measure, saying it would make what remains a federally classified illegal drug easier for youths to obtain and abuse. His office has been lobbying senators to vote against the legislation. Gov. Pete Ricketts has consistently said he opposes state-by-state legalization of medical marijuana. The drug, he said, should go through the same federal testing and regulation as any other medicine before patients have broad access to it. Though the study bill would provide for a limited, re- search-based approach, Rick- etts opposes it as well, said his spokesman, Taylor Gage. “While the governor ap- preciates thoughtful medical research, proponents of medical marijuana already have a pro- cess to follow,” Gage said in an email. “Those seeking approv- al for its medical use should use the existing approval and development process set up by the U.S. Food and Drug Admin- istration.” The study bill would allow en- rolled epilepsy patients to take a medicine derived from plant strains with trace levels of THC, the component that produces the high for which marijuana is famous. The non-psychoactive component is cannabidiol, or CBD, frequently referred to as hemp oil. The bill would permit the use of cannabidiol contain- ing less than three-tenths of 1 percent of THC. In comparison, marijuana sold on the street can contain THC levels of 10 percent or higher. In a dozen states, including Iowa, it is legal to use cannabidi- ol, with varying levels of THC. The list includes states that limit access to the medicine for those enrolled in a study. In Colorado, where medical marijuana is legal, Lisa Kroll mixes one-half milliliter of CBD oil with flavored water and gives it to her 5-year-old daughter twice a day. Kroll, an Omaha native, spoke on the condition that she be identified only by her maiden name. The daughter’s epilepsy emerged about two years ago and worsened to the point that she was having seizures daily. Kroll tried multiple drugs, diets and other treatments, but her daughter’s seizures continued. Kroll quit her job to care for the girl, her husband had to change jobs, and the couple spent $35,000 out of pocket for treatments in one year. Last May they started using the oil, which Kroll said costs about $100 per month. Results came gradually, but her daugh- ter has not suffered a seizure since Sept. 30. Now her parents plan to enroll her in kindergar- ten — something that would have been impossible before. “It’s changed our lives tre- mendously,” Kroll said. “There were two years we didn’t see her real smile. Once the seizures ended, we saw that smile and that giggle come back.” Kroll said she wants Nebraska to adopt the broader medical marijuana law so other families in crisis could see if the drug might help them. It also would make it possible for her to bring her daughter to Nebraska to visit relatives, and legally bring the medicine with them. The most well-known of the CBD products is Charlotte’s Web, named for a young epi- lepsy patient in Colorado who once suffered from hundreds of massive seizures weekly. “People don’t understand ... this is life or death,” Paige Figi, the girl’s mother, said in March while testifying before the Ne- braska Legislature’s Judiciary Committee. Critics of Nebraska’s study bill have raised concerns about the number of children who would be allowed to participate. The national Epilepsy Founda- tion estimated that about 17,000 Nebraskans live with the dis- order, although the foundation could not provide an estimate of the number of children. The State Department of Health and Human Services said it doesn’t track the number either. Shelley Gillen of Bellevue, who recently walked the Capitol hallways with photos of the bloody facial injuries her son has suffered in falls, said she believes there are several thou- sand children with intractable epilepsy in Nebraska. She pre- dicted demand to get children in the study would be considerable. “We don’t even know if he’d get one of the golden tickets to be in the study,” she said. The bill calls for a team to as- sess potential study participants, who would be referred to UNMC by their treating physicians. The estimated $250,000 annual cost of the project was based upon enrolling 50 participants, but the bill does not cap the number allowed in the study, said Sen. Sue Crawford of Bellevue, who introduced the legislation. Crawford, who set out to help children with epilepsy in 2013, admitted that she feels stung by the criticism of her bill. Though she said she doesn’t support the broader cannabis bill, she doesn’t view it as an either-or choice for her fellow senators. Madhavan, who directs UNMC’s comprehensive epilepsy program and treats patients in his practice, said the population of children who have exhausted all medical options without improvement is small, although he did not have a specif- ic number. While he wanted to counter those who would “my- thologize” cannabidiol, he also said the study would be a worthy endeavor. “In the interest of being their physician and advocate I want to try anything I can to make them better,” he said. “If cannabidiol makes them better, great. If it doesn’t, at least we’ve tried it.” Because the federal govern- ment classifies marijuana as a controlled substance with no medicinal benefits, scientific research on the drug is high- ly restricted. Many medical professionals have said the drug should be reclassified so re- search can more easily be done. The American Academy of Pediatrics, a mainstream associ- ation of 62,000 child doctors, re- cently went a step further when it said cannabinoids should be an option for children with debili- tating or life-limiting diseases who cannot wait for the lengthy research process to play out. The Nebraska Medical Associ- ation and the Nebraska Sheriff’s Association both support the study bill but oppose the broad- er cannabis proposal. The Epilepsy Foundation says the anecdotal reports of parents who say cannabidiol has helped their children can’t be ignored. So the group supports passage of state medical cannabis laws, in large part because it wants to see cannabidiol regulated, said Beatriz Duque Long, the founda- tion’s spokeswoman. It’s time for more regulation, higher standards of quality con- trol in cannabis medicine and more engagement by medical professionals, said Dr. Margaret Gedde of Colorado, who advises parents on how to treat their children with cannabidiol. Many parents in her state are treating children on their own, which she said is potentially dangerous because the wrong dose of cannabidiol or THC can worsen seizures. Late last year Gedde released the results of an “observational study” of 107 patients. It found that 71 percent reported at least a 50 percent reduction in sei- zures, and 11 percent said they no longer had any seizures after using cannabis extract. The patients used a range of prod- ucts that included high CBD oil and drugs with slightly higher percentages of THC. Another paper, released by the American Epilepsy Society and based on a survey of 58 children in Colorado who were taking cannabis extracts, found that only 31 percent reported at least a 50 percent reduction in seizures. In Nebraska, some parents dealing with epilepsy say they won’t independently give the oil to their kids in violation of state law. They fear that child pro- tective services could remove the children from their homes if they were found to have canna- bis in their systems. Budden said her daughter is taking a conventional pharma- ceutical drug used as an emer- gency anti-seizure agent. The mother said she worries about the long-term side effects of all the medicines that Alice has been on in her young life. Budden and her husband would most likely move to Iowa if Nebraska chooses not to enact a medical cannabis law. It’s not what they want, she said, but considering that one in 150 patients with intractable epilepsy dies suddenly from seizure disorders, they feel they are running out of options. “We’re trying to do it the right way,” she said. Contact the writer: 402-473-9587, [email protected] Cannabis: UNMC doctor doesn’t believe marijuana is a ‘miracle cure’ Continued from Page 1 Alice Budden, above, works on pronouncing her “K” sound with the help of Dr. Olga Delgado, a speech- language pathologist, at ProCare3 in Papillion. The vibrating tongue depressor highlights the part of the tongue to use while preventing the front of the tongue from forming a “T” sound. At left, Alice with her mother, Becky Budden. Budden and other parents of children with epilepsy are urging Nebraska legislators to pass a bill that would allow the use of cannabis to treat epilepsy as well as an array of other diseases and conditions. “We may not even get to enroll her in the study. 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