Seth Hyman wakes up each day on edge. He ends it the same way.
“We are always on edge—24/7,” said Hyman.
The reason: His 8-year-old daughter Rebecca is considered medically complex, which means she has a lot of medical issues. She’s nonverbal. She can’t walk. She is fully dependent on others at all times of the day.
Still, Hyman said, Rebecca is mobile in the sense that she likes to do things like play with her special toys.
“Even with all her disabilities and challenges, she is the greatest little inspiration in our life,” Hyman said. “She is full of so much love and joy and willingness to do things, even with her disabilities.”
The most significant struggle she faces, he said, is seizures, which started about four years ago.
Some are minor; others are more serious. The Hymans don’t bother counting each seizure because there are so many every day. They believe medical marijuana could help Rebecca.
About 1,000 miles north of Hyman’s Weston, Fla., home, Jill Haas can relate.
Sitting in her Lexington, Ky., home, Haas saw the benefits of medical marijuana when a family she knew in nearby Indiana moved to Colorado to get treatment for their daughter, who was medically very similar to her daughter Sylvia.
“They saw a reduction in seizures almost immediately when they started giving the marijuana oil,” said Haas. “Throughout the next months, they started seeing these changes in their daughter. … She used to have 30, 40 seizures a day and she was down to one or two a week.
“Suddenly I was realizing this is a child that used to be exactly like my daughter and now, since starting this treatment, she’s making big gains and making big progress. We’re still not making any progress.”
Haas contemplated moving from Kentucky to Colorado, which legalized marijuana for both medical and recreational use. But she and her family just moved to Kentucky from Oregon a few years ago to be closer to family. So she got involved in the effort to pass medical marijuana legislation in the Bluegrass State. Hyman is backing similar legislation in Florida.
Their voices are having an impact.
Help for Children
“Our watershed moment in Florida was when we brought parents from Colorado to our state to testify before our legislature,” said Rep. Matt Gaetz, who sponsored medical marijuana legislation in the Sunshine State. “They talked about the transformation of their children in front of Florida parents who suffer daily when they watch their children agonize through incredibly damaging seizures.”
Gaetz’s legislation is one of four bills Florida legislators considered, but his would affect only the cannabis that has 0.8 percent of THC, the active ingredient in cannabis that gives user a high, and 10 percent or more of cannabidiol. This substance, often referred to as CBD, comes in an oil form and is administered in droplets.
Kentucky legislators approved a bill to legalize those strains of marijuana, and Florida lawmakers were considering similar legislation. Legislation in six of the 19 states that considered medical marijuana this year focused on the use of cannabidiol, according to ProCon.org, which provides resources on both sides of controversial issues.
But use of the plant for these children has its limits, said Ben Pollara, campaign manager for United for Care, an advocacy group pushing for a constitutional amendment for the use of marijuana for broader medical purposes in Florida.
“There are hundreds of thousands of Floridians who suffer from debilitating diseases and medical conditions who are suffering, who are in pain, many of whom are terminal, who are looking to medical marijuana for relief and for treatment of those symptoms,” Pollara said.
The ‘Science’ of Treatment
But not everyone is convinced.
David Evans, special adviser to the Drug Free America Foundation, warns that legalization of cannabis for any purposes—even the oil for children—sets a “very dangerous precedent.”
“It’s not done on the basis of science,” he said. “It’s not done on the basis of effectiveness.”
Evans is particularly concerned about the broad legalization of marijuana for medical treatment. He believes there is no scientific evidence, no clinical trials, which support its use.
“I’m certainly sympathetic to anybody that has a sick child,” Evans said. “But we have to follow good medical procedures. We’ve learned over hundreds of years of experience that if we don’t follow proper research procedures, people get hurt. They get medicine that is either not helpful to them or it’s harmful to them.”
Florida Rep. Gayle Harrell cast the lone dissenting vote when the Florida House Subcommittee on Criminal Justice approved the cannabidiol bill in March. She, too, questioned the intelligence of approving marijuana for medical use without clinical trials or research to protect patients.
“I really think we need to address this using science,” Harrell said at the hearing. She suggested a pilot program to study and test the effectiveness of the low THC/high CBD strain.
The problem with testing, advocates for legalization say, is that it takes time.
“The people who are desperate for medical marijuana now cannot wait for this research,” Pollara said. “They’re going to be dead by the time it happens. Clinical trials at the FDA level take years and years and years. Because of the legal status of medical marijuana, they’re very difficult to conduct. There are not a lot of active studies going on in this stuff.”
Most of the research on the efficacy of medical marijuana is taking place overseas. States were engaged in these types of studies as late as the mid-1980s, according to Paul Armentano, deputy director of NORML, a nonprofit organization based in Washington, D.C., working to reform marijuana laws.
But there are some studies in the United States. University of California medical researchers found smoking marijuana could provide some relief from pain for patients with AIDS and HIV. The Center for Medicinal Cannabis Research found in studies over a dozen years that pot offered broad benefits in selected pain syndromes caused by injury or diseases of the nervous system, and possibly for painful muscle spasticity due to multiple sclerosis, according to a report presented to the California legislature in 2010.
Similar trials also are getting ready to restart in Arizona. The Obama administration in March paved the way for a researcher at the University of Arizona to examine whether the drug can be used to help veterans cope with post-traumatic stress disorder. The Food and Drug Administration approved the study three years ago, but researchers were stymied by federal requirements that the only marijuana that could be used in such experiments must come from one government-run farm in Mississippi. That’s because the National Institute on Drug Abuse, which runs the farm, has been hostile to research that examines possible benefits, according to an article in Governing.
Treatment with Marijuana
But the lack of FDA-sanctioned studies hasn’t stopped nearly half the states as they’ve approved marijuana for medicinal purposes over the past two decades. California was the first state to legalize medical marijuana in 1996. Since then, 19 other states and the District of Columbia have provided for such use.
Most of those laws cover more than just the cannabidiol. They allow the possession of specific limited amounts of processed marijuana, ranging from 1 ounce usable in Alaska, Montana and Nevada, to 24 ounces usable in Oregon and Washington, according to ProCon.org. Two states—Connecticut and Massachusetts—set the limit by length of supply, one month and 60 days. The laws also stipulate the number of immature and mature plants a person can have in his or her possession.
States that have approved medical marijuana allow it to treat a range of ailments, including, cancer, chronic pain, epilepsy, glaucoma, HIV/AIDS, multiple sclerosis, severe nausea and seizures.
But Evans said marijuana is not always helpful for these conditions and, in fact, can be harmful. He points out that the National Multiple Sclerosis Society deems medical marijuana harmful to people with the disease.
In fact, the society, on its website, cites recent trials that led it to come to its conclusion that more research is needed to better understand the benefits and potential risks for patients using the drug to deal with MS. The Glaucoma Research Foundation deems marijuana a poor choice in treatment of the disease because of the side effects generated by long-term use of marijuana, according to its website.
Evans and others who oppose medical marijuana legalization also point out that it would be easy for people who don’t need the drug medically to access it.
“Most of the people who are getting it are getting it for recreational use,” Evans contends. “The way these bills are written, it’s very easy to get marijuana for almost any condition.”
That’s one reason Gaetz, while supporting the CBD bill, is opposed to the proposed Florida constitutional amendment that would approve marijuana for broader medical use.
“We’re concerned that no state has really cracked the code on how to limit abuse and recreational use of those strains,” he said of the plants with the higher THC content. “My proposal (is) to legalize forms of noneuphoric marijuana, (which) has a very low likelihood of abuse because there’s no real street value to that substance.
“Not all medical marijuana is created equally,” Gaetz said.
“Use of marijuana by people who are not truly ill is a concern and, also, I don’t want to have a pot shop on every corner and in every strip mall.”
He’s also concerned that medical marijuana could prompt unscrupulous doctors to open shop simply to dispense the drug, similar to the pill mills that set up for prescribing Oxycontin.
Support for Medical Marijuana
While advocates and policymakers see the differences in limiting medical marijuana to specific strains, voters across the country strongly support medical marijuana for a broad range of ailments.
A Fox News Poll last May found 85 percent of those surveyed nationally favored allowing people to use marijuana for medical purposes. Several Quinnipiac polls in February showed strong support for medical marijuana in various states—88 percent in New York, 87 percent in Ohio and 85 percent in Pennsylvania. In Florida, where voters will consider a constitutional amendment in November, the support was 82 percent.
“You’re not going to find a region of this country or a demographic where you’re not going to find support for legalization of medical marijuana,” Armentano of NORML said.
Pollara hopes the polls hold in Florida. He said approval there could address some concerns opponents have about efficacy of the drug.
“The more marijuana is accessible as a medicine and the more the legal status changes as a result of laws like the one we’re trying to pass, the more research will be conducted,” he said.
As for parents Haas and Hyman, they’ll take what they can get from state laws that might offer some relief for their children.
“I’m not the FDA, but knowing all these parents, hearing their journeys, seeing the results in their children, that’s evidence for me,” Haas said. “I think that’s evidence that can’t be ignored, especially when you’re looking at treating patients like my daughter, whose quality of life is so severely affected by her condition.”
Hyman knows details must be addressed to set out the parameters even if the law is passed in Florida. He also supports the broad medical marijuana amendment because he sees potential limits with the cannabidiol legislation.
“Because these types of bills are so limited and restrictive,” he said, “there are many other children out there who need more who won’t be able to get more from this.”