By: Caitie Switalski
Dawn Zuzio’s 5-year-old son, Shawn, has spent more of his life inside the walls of a hospital than out. He suffers from chronic lung disease, autism, a hole in his heart and epileptic seizures every day.
Last summer he was so sick, doctors told his mother to take him home—they couldn’t do any more.
After years of seeing the same doctors and specialists and pacing in the waiting room while her son underwent surgery after surgery, the Ocala mother of eight has had enough.
As a last resort, Zuzio decided to move her family to Colorado in order to get access to new medicine for Shawn – specifically medical marijuana.
Medical refugees are leaving Florida for states where medical marijuana products are readily available, like Colorado.
Families, like the Zuzios, have children who suffer hundreds of seizures a day. Medical cannabis pills, patches and ointments to treat epileptic seizures are expected to be available in Florida starting this summer. But some, like Shawn, can’t wait until then to gain access to these medicines and Zuzio doesn’t believe the state of Florida will deliver.
“I really just don’t see it happening anytime soon,” Zuzio said.
Shawn had his colon removed at Tampa General Hospital a few weeks ago, and has been suffering complications and infections during his recovery. Once he was well enough to travel, Zuzio packed up the family car and started driving.
As they were driving through Kansas, Shawn’s health deteriorated. He was life flighted to Children’s Hospital Colorado, his third hospital in nine weeks, where he is now recovering.
Shawn is receiving treatment to help him breathe and keep him comfortable. He is expected to see a neurologist at the end of the month, who Zuzio is hoping will prescribe him medical marijuana to reduce his seizures.
Other types of patients are also stuck watching and waiting for medical marijuana to become available in the Sunshine State.
Moving means they don’t have to wait.
And, for Florida doctors who have taken the certification course to prescribe medical cannabis, some are left waiting while others are finding ways to circumvent the law.
Nicole Mattison is the outreach director for the Colorado chapter of the Realm of Caring, a nonprofit dedicated to legitimizing cannabis therapy.
She knows of about 10 and 12 families that have left Florida for states that have legalized medicinal marijuana laws. But, those are just the ones she knows about.
Donnie Roper, of Pensacola, Fla. also considered taking her child to Colorado.
Roper’s daughter, Tiffany, is 22. She has suffered from intractable, or uncontrollable, epilepsy since she was 3 years old.
At her worst, Tiffany was hospitalized for three months for life-threatening seizures and placed into a medically induced coma to stope the cycle. After a month in a coma, doctors told Roper they didn’t think she would survive. When she did finally wake up, Tiffany had to relearn how to walk and start the cycle of prescription drug therapies all over again.
With the help of a Vagus Nerve Stimulation device, or VNS, Tiffany’s seizures have been reduced from hundreds a day to three-to-five a week, on a good week. Her mother calls it a “pacemaker for the brain,” but says it doesn’t go far enough to make life normal for her daughter.
Tiffany attends Pensacola State College through the Arc Gateway Program for Adult Learning and Support, or PALS. With it, she gets to learn career skills and do things like dance, play sports and sail for the Special Olympics. But these things can only happen if her seizures are somewhat under control. Otherwise, she is bedridden.
“Is she down a lot of the time? Yes,” Roper said.
Roper believes that medicinal cannabis would greatly improve her daughter’s quality of life for two reasons: There is a chance it could, combined with the VNS, make Tiffany seizure-free. If it doesn’t, Roper still thinks it would help lessen her need for other pharmaceutical drugs that come with severe side effects.
“She’s tried literally every drug out there at least once,” Roper said. “They suppress her. I just wonder what this child would be like not on that stuff.”
Roper first considered moving to Colorado in 2014, but ultimately decided not to leave because the Compassionate Medical Cannabis Act had just been written. She never thought it would take two years to get the medicine to her daughter, she said.
“There’s nothing new for us to try; we’re in a holding pattern,” Roper said.
They thought they would have marijuana to add to their treatment by now.
Currently, Florida laws only allow three specific types of patients access to the emerging medical marijuana industry. June 2016 will mark two years since Gov. Rick Scott signed the Compassionate Medical Cannabis Act into law.
And while many patients in Florida are desperately waiting for this possibly life-changing medicine, other patients aren’t eligible because they aren’t considered terminally-ill.
Chronic pain and depressed patients do not qualify for medical cannabis under the Compassionate Medical Cannabis Act of 2014.
Connie Yurkus, 51, of Largo, Fla. is a disabled Air Force veteran.
Yurkus said she has been living with chronic pain and brain damage from altitude sickness as a result of working in an Air Force altitude chamber and re-exposure to high altitudes, as well as bone rot since 1986 – when she was 21.
Her bone rot condition means Yurkus has aging, brittle bones that fracture and break often. One little bump into a table and she could crack an elbow or leg.
Under current Florida law, she is not eligible for medical cannabis.
“They’re not going to include me, because I’m not dying,” Yurkus said.
She said she began smoking marijuana regularly for pain relief in 1996, but prefers cannabis oil now.
Yurkus started using oil last year after her friends in Michigan mailed some to her. She said it controls her bone discomfort better than smoking.
Federal law allows for the shipping of cannabis oil across state lines according to the Agricultural Act of 2014 as long as the product is grown under the conditions of the law.
Because the oil works to control her pain, Yurkus is able to do what she loves, which is raising hundreds of varieties of orchid flowers. Yurkus feels like the oil has given her control over her life back, and said people who stigmatize medical cannabis judge unfairly.
“There’s no high whatsoever,” Yurkus said of the oil. “There’s no euphoria or something like that – it’s just pain relief.”
She feels like the state of Florida’s legislation has let her down.
Yurkus considered moving from Largo to Colorado, but decided against it because she is not physically able to travel or live in colder weather with her bone condition.
“The oil isn’t going to cure me, but when the doctors ask me what my pain level is, a lot of the time it’s zero,” Yurkus said. “I haven’t been able to say that in 20 years.”
Dr. Ben Renfroe expressed hesitation about the success of the state’s looming medical cannabis industry.
Renfroe, a pediatric neurologist, treats children with cerebral palsy in Gulf Breeze, Fla. He is one of more than 90 doctors who completed the Low-THC Cannabis Continuing Medical Education to get certified to prescribe cannabis, because he believes there is, “an inevitability that we’ll need to work with it.”
Renfroe has concerns about the research and vetting of medical cannabis and is irritated that they are not approved by the U.S. Food and Drug Administration.
Despite his reservations, he will begin prescribing them once they become available in Florida. Only because, he said, the children he treats have run out of other pharmaceutical options to try, or the side effects are too severe.
“This is not a cure; this is simply something else,” Renfroe said.
Renfroe worries there won’t be enough of a market for Florida’s nascent medical marijuana industry, in part, because of lack of insurance coverage.
“I don’t have any patients that can afford that,” Renfroe said of the medical cannabis options soon to be available in Florida.
Colorado Realm of Caring’s Mattison said the low-THC and high cannabidiol oils can be pricey for patients who have to pay out of pocket.
“I personally pay $250 every six months for our daughter’s [Charlotte’s Web],” Mattison said.
It can be even more expensive for adult patients who require higher dosages.
Florida Blue is the Sunshine State’s largest health insurance provider. Spokesman Paul Kluding said that without any FDA approval, medical marijuana products won’t be covered here.
“Obviously nothing has been approved as of yet,” Kluding said.
Colorado patients do not have health insurance coverage for the medicine either, but Mattison said the state is investigating the possibility of getting the oil covered by insurance companies as a nutritional supplement.
Dr. George Kamajian, who specializes in family medicine in Largo, agrees with Renfroe about the affordability of cannabis oil.
“I think it’ll take a long time to be efficient,” he said. “I’m frustrated it’s not generally legal – period.”
Currently, his patients seek alternatives to standard therapy or they smoke pot illegally.
Kamajian worries the high cost to patients and the social stigma could block many Floridians from taking advantage of the drugs.
Meanwhile, Florida lawmakers, doctors and patients are left waiting for Florida’s fledgling marijuana industry to take root, but not everybody can afford to wait. For patients like Shawn, there might not be a tomorrow.
Zuzio said her son is too fragile, his condition to critical, to wait for medical marijuana to become available in Florida.
“I refuse to bury my son in this state.”
Read more: Decoding Florida’s Medical Marijuana Laws