Four-year-old Harper Goldsby suffers from Ohtahara Syndrome, a rare form of epilepsy that causes him to have four to five clusters of tonic-clonic seizures per day. He is wheelchair bound and eats through a gastrostomy tube that was surgically placed in his stomach.
Medical marijuana bills winding their ways through the House could ease some of the struggles facing the boy, his mother testified this week in the House.
Candace Goldsby testified Wednesday in support of House Bill 930, saying it would create a medical marijuana pilot program allowing Harper to take cannabis to treat his condition, ending his dependency on prescription medications and his suffering from their harmful side effects, she said.
Harper currently takes nine prescriptions daily - three anti-seizure medicines and six others to offset their side effects, Goldsby testified.
Children with this condition have a life expectancy of six months, his mother testified. "He is unique in that sense," she said. "However, his time is running out. ... I've had to resuscitate my son at least weekly for the last two years."
In her testimony, she pleaded with the committee to initiate a program for medical cannabis to help her son and others like him.
"I'm asking for your help here to vote yes. My son does need this; he deserves this," Goldsby said to the House Emerging Issues committee. "He can be living and thriving thanks to medical marijuana."
Three House measures have been proposed this legislative session that would create the Compassionate Use of Medical Cannabis Pilot Program Act, providing a process for medical marijuana to be cultivated and dispensed to assist patients with debilitating conditions. The bills include a sales tax on medical marijuana and would make the Division of Alcohol and Tobacco Control the licensing authority for the program.
The three bills are:
• House Bill 800, which is sponsored by state Rep. Dave Hinson, R-St. Clair, would establish a medical marijuana program with strict regulations of who can grow, sell, recommend and take the drug. This bill lists 11 specific conditions that would be treatable with medical cannabis. A committee passed a substitute of the bill on March 31 with a vote of 10-1, sending it to the floor for consideration.
• House Bill 930, which is sponsored by state Rep. Keith English, I-Florissant, would also create a program, but would allow patients to grow their own marijuana and allow for an unlimited number of firms to compete in the industry. This measure would allow doctors to use their discretion when recommending marijuana to patients. A committee public hearing was held on the bill April 8.
• House Bill 490, which is also sponsored by English, would create a program with specific conditions marijuana could be recommended to treat, but would create a process for citizens to request additional conditions to be added to the list. The bill has been referred to a standing committee but has not been heard.
Who can be recommended?
The committee substitute for House Bill 800 specifies 11 debilitating conditions doctors can recommend marijuana for, including: cancer, glaucoma, HIV, Crohn's disease, Parkinson's disease, Alzheimer's disease, epilepsy, multiple sclerosis, post-traumatic stress disorder and others. House Bill 930 does not list specific conditions; instead, it allows doctors to use their professional discretion in recommending marijuana.
Rep. Elijah Haahr, R-Springfield, who is the chairman of the House Emerging Issues Committee, said he was worried not limiting conditions could lead to doctors overprescribing the drug.
Rep. Dave Muntzel, R-Boonville, said there were four doctors in Colorado who were being prosecuted for writing false recommendations and have lost their license.
English said there are "bad actors" in every industry, and regulation and enforcement is key to stopping them. However, he said he does not see interfering with the relationship between doctors and patients as a solution.
Can patients grow their own marijuana?
House Bill 800 does not allow for patients to cultivate their own marijuana. Registered individuals must go through a dispensary to obtain their medication. English's measure allows for registered patients to grow up to six plants.
Testifying for the bill was Sarah Hollingsworth, an Army veteran who developed ulcerative colitis, a gastrointestinal condition, and neurological issues fighting overseas. She testified that allowing patients to grow their own marijuana is a consequential distinction between the bills. If she were allowed to grow her own cannabis, she would not have to worry about pesticides or other harmful chemicals, she said.
"It's a human right," she said to the committee. "I should be able to pick what kind of medication (I use). If I can grow it myself and I can medicate myself, I can save my life."
Hollingsworth said she does not want to become a "medical marijuana refugee," which is someone who moves from a state that does not allow medicinal cannabis to one where it is legal. At one point, she was prescribed 13 different prescription medications for her condition, which made her lose an unhealthy amount of weight, she said. She traveled to Oregon for medical marijuana treatment, which was successful after finding the right strand, she said. If Missouri does not create a medical program soon, she said she would move to a state that has implemented one.
"Right now, in order for me to function and work and keep a job," she said, "I would have to break Missouri law. I would have to commit a felony."
Rep. Ron Hicks, R-St. Peters, said at first he wasn't in support of allowing patients to cultivate their own cannabis, but after hearing that his longtime friend's mother smoked marijuana to relieve symptoms of cancer, he changed his mind. He said marijuana helped with her condition, but because of the negative stereotypes of the drug she was embarrassed to admit to others she used it. Hicks called her and others in that position "closet smokers."
"There's a lot of people out there that would like to be able to use (medical marijuana) and still not have a single soul on this earth know that they are doing it because of the perception that people make on them," Hicks said.
Rep. Anne Zerr, R-St. Charles, said she believes if patients are allowed to grow their own cannabis the bill will be criticized by some who would see it as "one step closer to recreational."
The market for medical cannabis
House Bill 800 allows for 30 medical cannabis cultivation centers and 30 dispensaries across the state. House Bill 930 allows for free entry of firms into the market, allowing for competition among producers and dispensaries.
John Payne, who testified in support of the bill and is the executive director and treasurer of the nonprofit organization Show-Me Cannabis, said a free market approach is necessary and would regulate the industry by allowing competition. He said he believes House Bill 930 is a better approach than Hinson's legislation. Payne said he thinks it would be better to regulate the behavior of the firms rather than the number of firms.
"I think (House Bill 800) arbitrarily just caps the number of firms at 30," Payne said. "I don't think we want to start the industry out as some type of oligopoly."
Both bills are expected to have a cost from the general revenue fund of more than $1 million in fiscal year 2016. The committee substitute for House Bill 800 will also affect other state funds by more than $2.7 million for 2016. Costs are expected to increase in the next two years for both bills. House Bill 800 is expected to cost almost $15 million in the following two years, while House Bill 930 is expected to cost almost $38 million in the same period.
Haahr said he thinks the approach to this legislation could affect how any future marijuana legislation is handled.
"I think the dilemma that many on this committee, many in the House and Senate have, is that if we're going to make a move to allow medical marijuana in the state we don't want to overstep and kill the chances of any legislation moving forward," Haahr said.