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Florida medical marijuana patients say lawmakers are ignoring the will of the voters by creating unnecessary red tape

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For a long time, Jacel Delgadillo wasn't sure her son knew who she was.

Five-year-old Bruno Stillo began having seizures as a three-month-old infant and soon after was diagnosed with Dravet syndrome, a rare form of epilepsy. While his family struggled to make sense of his medications, Bruno seized 300 to 400 times a day. The constant epileptic episodes left him unable to walk or talk, and at one point, one of his seizure medications caused drug-induced lupus, his mother says.

"I used to always tell everyone I don't think my son knows I'm his mother," the Miami mom says. "I didn't think he had the capacity. But since we started him on cannabis, he'll sit on my chest and relax, he's alert to what he sees around him, he can use his finger to get to an app on the iPad. He has a seizure about once a week now. But now I can see that he knows who I am."

Bruno got his first home delivery of cannabis low in tetrahydrocannabinol (THC), the chemical that creates a euphoric high, earlier this year from the Winter Garden-based Knox Medical facility after the historic passage of Amendment 2 last November. Seventy-one percent of Florida voters approved the constitutional amendment that expands the state's medical marijuana program to patients with conditions like post-traumatic stress disorder, cancer, glaucoma, epilepsy, HIV, AIDS, ALS, Crohn's disease, Parkinson's disease and multiple sclerosis. Bruno is one of 5,525 patients in Florida registered to receive medical marijuana as of March 14, and state Department of Health spokeswoman Mara Gambineri says the office is receiving, on average, about 100 new patients per day.

Amendment 2 gave lawmakers and the state health department six months to establish new rules for the medical marijuana system, and nine months to start giving patients their identification cards. But looking at the proposals Florida lawmakers have filed so far, including a measure that would ban smoking and edibles, Delgadillo worries the state will limit how her son can take his medicine. Bruno currently takes about a dozen drops of medical marijuana oil by mouth every day, but Delgadillo wants every option on the table if it offers the possibility to make her son feel better.

"Our children are growing, and we don't know which form of cannabis will be the best for them," says Delgadillo, who is also an activist with the medical marijuana advocacy group CannaMoms. "Right now he's taking the oil form, but some adults have to smoke the medication. We need this medicine as a whole and there shouldn't be exceptions on parts of it. This should be something decided between a doctor and patient, not people making regulations. They don't really know what we go through."

Lawmakers say they're keeping patients at the forefront as they draw up rules for this budding industry projected to make $1.6 billion in the next three years, including strict regulations designed to combat recreational use of the drug. But patients and advocates are decrying some of the proposals put forth by Florida legislators, saying they create burdens for sick people and ignore the will of the voters.

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Since Amendment 2 became law on Jan. 3, health department officials and the Florida Legislature have been scrambling to adjust the regulatory framework for medical marijuana that Florida already had to meet the new conditions.

The existing program allowed terminal patients to use full-strength marijuana, and authorized patients suffering from chronic seizures, severe muscle spasms or cancer to receive low-THC medical cannabis. Although the state Legislature approved non-euphoric medical marijuana first in 2014, it took about two more years before patients were able to get access, due to lawsuits and administrative red tape regarding which nurseries were allowed to grow and distribute medical marijuana. The first dispensary opened last July in Tallahassee and more have popped up around Florida since then, though many city and county governments, including the city of Orlando and Orange County, have passed moratoriums on opening dispensaries. Currently, the system allows seven nurseries to grow, package and sell marijuana for the entire state, either by home delivery or through dispensaries.

And here's where an already controversial topic gets more convoluted. Right after Amendment 2 went into effect in early January, it wasn't immediately clear what doctors and patients could legally do under state laws while they waited for the Department of Health to craft new rules. Christian Bax, director of the state Office of Compassionate Use, finally clarified that while health officials created regulations, doctors could decide if they wanted to prescribe marijuana to patients with medical conditions listed in the constitutional amendment after treating them for 90 days. The health department's stance sounded pretty flexible, but some, like Jeff Scott, general counsel for the Florida Medical Association, urged doctors to proceed with caution in legally shaky territory, according to the News Service of Florida.

"The Florida Department of Health, physicians, dispensing organizations and patients remain bound by existing law and rule," says Mara Gambineri, spokeswoman for the state Health Department. "The Department is committed to quickly moving through the rulemaking process to create a regulatory structure for Amendment 2. ... In partnership with law enforcement, enforcement actions initiated by the department against patients, doctors and businesses will be focused on those operating outside the regulatory structure in Florida law."

After that initial hiccup, the state health department's rollout of proposed regulations to the public in early February was contentious, to say the least.

Health officials had, essentially, adapted the state's limited medical marijuana program to take in the new patients created under Amendment 2. One of the proposed rules stated only patients with cancer, epilepsy, glaucoma, HIV, AIDS, PTSD, ALS, Crohn's disease, Parkinson's disease and multiple sclerosis would qualify for medical marijuana; any other debilitating medical conditions that could qualify would be determined by the Florida Board of Medicine. Advocates argued this was against the spirit of Amendment 2, which left that decision up to individual doctors. The state health department also chose not to expand the number of dispensing organizations in Florida who could produce marijuana or to separate growers from the dispensary process, which Amendment 2 allows.

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At workshops set up by health officials across the state, raucous, standing-room-only crowds ripped into the department's draft rules. Some people wanted the department to end the 90-day waiting period between when doctors first see patients and when they can start recommending medical marijuana. Others, like James Fowler, a St. Cloud patient who spoke at a public meeting in Orlando on Feb. 8, criticized the department for allowing the limited number of dispensing organizations to become monopolies that can control the market and keep prices high.

"You're putting yourselves between my doctor and myself and my medication. That's wrong," Fowler said to health department officials. "They're not going to come down off their prices because we can't afford anything. ... That's gonna force us to go to illegal means and have to go to the illegal dealers that you guys are trying to combat. All you're doing, sir, is promoting the illegal activities of the black market with what you're doing, with your asinine rules and regulations."

Six plans have emerged so far from Florida lawmakers, and while they're mostly similar, the most controversial plan so far has been filed in the House by state Rep. Ray Rodrigues, R-Estero. The Rodrigues plan, HB 1397, bans smoking, vaping or eating marijuana in commercial food products like brownies or gummies, though vaping would be allowed for terminal patients. (Under current Florida law, "smoking" means burning or igniting a substance and inhaling smoke. That definition does not include the use of a vaporizer.) Medical marijuana patients charged with drug-related crimes would have their registrations immediately suspended.

This bill is "out of line" with the constitution and restricts access to medical marijuana even further than the current law, according to Ben Pollara, executive director of Florida for Care and former campaign manager for the effort to legalize medical marijuana in the state.

"Everyone's just asking, 'How do you consume it?'" Pollara says. "It came as total shock to me, in terms of the restrictions, because they go well beyond what the amendment says, beyond what current statue says. ... It's totally out of line with how people feel about this issue."

Pollara also criticized the bill's requirement that medical marijuana be grown, processed and sold by the same dispensing organizations. The measure also proposes adding six more dispensing organization when the state reaches 150,000 medical marijuana patients, five more when there are 200,000 patients, and three more for every 100,000 patients who register. That's not true to the free-market ideal that Republicans who control the state Legislature have preached in other situations, Pollara argues.

"These folks live and breathe the scriptures of the free market," he says. "This House Speaker, in particular, has preached gospel of 'we need more transparency,' that we shouldn't be in the business of picking winners and losers. I don't think this qualifies as a free market."

State Rep. Carlos Guillermo Smith, an Orlando Democrat who recently proposed a measure to decriminalize small amounts of recreational marijuana, says the Rodrigues bill treats marijuana "like anthrax."

"It's unconstitutional," he says. "It's just another demonstration how out-of-touch House Republicans are with Floridians. Marijuana is a plant. Tens of thousands of people die from alcohol poisoning and opioid overdoses. No one has ever died from a marijuana overdose, period. I just don't understand what's the big deal."

On his end, Rodrigues says the charge he received from House Speaker Richard Corcoran was to write the bill in a way that treats marijuana as medicine and protects Floridians. Critics who think his edibles ban includes marijuana oils, tinctures and pills are making a "ridiculous assertion," he adds.

"Most of the bills proposed prohibit smoking, so it's a majority opinion," Rodrigues says. "There's people who would want to cast this bill in as extreme a light as they possibly can."

The decision to ban edibles came after Andrew Freedman, Colorado's former marijuana czar, testified in front of the House Health Quality subcommittee about people overdosing on edibles because it takes more time for them to take effect, and about proper packaging of edibles to keep them away from children. Rodrigues says physicians who are pro-medical marijuana conceded that they don't support smoking as a vehicle for medical marijuana.

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The bill also lowers the barriers to entry for doctors wishing to participate in the program and sets up independent labs to test the product.

"We have treated this like medicine," Rodrigues says. "We're honoring the doctor-patient relationship. We're not taxing it; we're not using this as a revenue source. We're pre-empting local governments so they can't ban growth of marijuana. ... We have a tightly regulated market because that's what the federal government requires so they don't pursue enforcement."

Despite Rodrigues' bill, Pollara says he's still optimistic about this legislative session.

"This bill just came out, so it's not the end," he says. "This is a disappointing beginning, but I'm still hopeful we'll have a good ending to the legislative session and have results that fulfill the will of the people and ultimately, gets some relief to sick and suffering Floridians."

While no other bill has been filed in the House, the most popular proposal in the Senate appears to be the bill filed by Sen. Rob Bradley, R-Fleming Island. SB 406 is similar to the Rodrigues bill in that it allows patients to have a 90-day supply of marijuana (up from a 45-day supply), modestly increases the number of dispensing organizations in a similar way and eliminates the waiting period for patients.

But Pollara aligns himself more closely with the bill filed by Sen. Jeff Brandes, R-St. Petersburg, which would scrap the current system and give Florida's medical marijuana market a libertarian makeover. SB 614 would ax the state's "cartel system" that allows seven dispensing organizations to dictate the supply and prices by allowing nurseries, processors and dispensaries to operate separately, Brandes says. The bill also allows smaller businesses that aren't multimillion-dollar companies to participate, he adds.

"I think the 71 percent of Floridians who voted for medical marijuana weren't voting for businesses," he says. "There were voting for patients. I think my bill is a voice for free markets because it will allow multiple growers, multiple dispensaries, and a number of processors. It changes the whole concept from being vertically integrated, which is where most of the bills are, to horizontally integrated, which means if you're a good grower, then grow, but you don't have to do everything else."

The Brandes proposal would allow local governments to ban dispensaries within their borders, but prohibits similar measures taken against home deliveries. The senator's bill would also let patients smoke medical marijuana, a stark contrast against the House plan.

"[Rodrigues] banned edibles, smokables and vaporizing," Brandes says. "The joke in our office is the only thing he allows is suppositories."

The House bill could lead to lawsuits, according to Brandes, and is more likely to be ruled unconstitutional under the guidelines in Amendment 2.

"I think it's important that the Legislature understand what the public wants here and what the public intended when they voted for this," he says. "We had the ultimate poll when we put it on the ballot. Now we have to ask, 'Well, did you vote for what would be considered some of the most restrictive laws in the country, or did you vote for something other than that?' And I think they voted to put patients first."

Meanwhile, Bruno is learning to crawl.

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The 5-year-old boy is now starting to learn basic motor skills with a physical therapist and, to the excitement of his family, has started making noises and playing with toys without hurting himself. Delgadillo never thought she would see her son walk on a treadmill or hear his baby babble, but for the first time, it feels like Bruno is just another kid. In a way, it validates these past years of fighting with insurance companies for treatment to keep Bruno alive and of trying to convince the public to vote for the medical marijuana her son needs.

"Having to convince people was really sad for me," she says. "I never imagined myself being involved in politics. I thought if a child got sick, a doctor would decide what the child needs."

Although Bruno lives in Miami, his medical marijuana provider is Knox Medical, a company based out of Orange County started by Knox Nursery, a 23-acre facility in Winter Garden. In a few weeks, Knox will open the first medical marijuana dispensary in Central Florida at 1901 N. Orange Ave., next to White Wolf Cafe in Ivanhoe Village, says Adam Sharon, a spokesperson for the company. The Orlando dispensary is able to open despite a local moratorium because it's only selling cannabis of the low-THC variety. The company plans to open a dispensary in Gainesville soon and will also debut locations in Lake Worth, Tallahassee and Jacksonville.

"A lot of effort has gone into it," Sharon says. "We're working with some of the top architects, designers and builders in the state. You see stories in other places about pot shops on every corner, but that's not what's coming to Florida at all. It's a top-quality medicine that's being rolled out for the state in a very calibrated, drawn-out process. It's a brave new world."

Sharon says after more than three years of twists and turns, and in the face of what looks to be more rules, Knox Medical chooses to operate in the now and proceed to provide medical marijuana to patients as the law allows.

"We can't control what may or may not happen, but we can proceed with providing medicine to the community and making it more available," he says. "When the people who live along North Orange Avenue in the Ivanhoe district learn more about medical marijuana, it's going to be part of the fabric of the community. Every day, people are going to see parents, teachers, veterans, children and their neighbors coming in and out of these dispensaries. I do feel like we'll almost have a collective 'aha' moment of what dispensaries are, and that will help guide lawmakers and cities to say we can live with this."

For Delgadillo, making sure her son has the best medical marijuana treatment means opening up the market and allowing for different forms of ingestion, depending on what's suitable for the patient. She has a friend in chemotherapy who will sometimes smoke a joint to ease her pain, and knows a mother who feeds half an edible gummy to her autistic son to help keep him calm. Delgadillo thinks that opening the market to more growers and dispensaries would also significantly lower the prices of medical marijuana. She's had to pay out-of-pocket for Bruno's marijuana patient card, for his doctor's visits and for the low-THC cannabis he needs.

"It's very challenging, especially since insurance doesn't cover any of it," she says. "My son doesn't walk, he's very heavy right now and I have a herniated disc so I can't carry him. We're trying to do fundraisers to raise money for a wheelchair van, so it's something I know I have to pay for. It's hard."

Ultimately, Delgadillo wants the state to stop treating her and her child like recreational marijuana users trying to game the system.

"If someone wanted to do it for recreation, it's cheaper on the black market than all the money we spend on getting registered and paying for medicine," she says. "I really think it should be between a doctor and patient. This is not going to be a CVS or candy in a supermarket where anyone can take it. They're treating it as something that's going to kill someone. It's not."

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