Delaware medical marijuana patients in limbo

• Medical marijuana was legalized in Delaware five years ago.
• The first dispensing site, called First State Compassion Center, opened in Wilmington in 2015.
• The state is in contract negotiations that could open dispensaries in Kent and Sussex counties by 2017.

Five years after medical marijuana was legalized in Delaware, patients still struggle to gain access to the controversial drug they say is the only way to relieve their debilitating conditions.

Marijuana in the First State and nationwide still operates in a gray area and in defiance of federal law. The result is that patients often pay exorbitant prices, must drive hours every week to buy the drug legally, sometimes have to buy it off drug dealers and often can't use the drug when they need it most.

"There are thousands of people that need this as medicine, and there is too much greed and back-door politics going on here," said Todd Boone, a medical marijuana cardholder.

Here is what they face:

• Boone, of Milton, travels 190 miles round trip every week to the state's only dispensary, in Wilmington. He arrives to find not enough of the particular strain of marijuana he said he needs to combat pain he’s had since crashing his motorcycle in 2008. That frustration led him to sue the state to open dispensaries in Kent and Sussex counties, closer to his home.

• Derek, an Iraq War veteran who asked that his last name not be used, couldn’t find a psychiatrist to sign off on his application for a medical marijuana card. He began using marijuana anyway to help him cope with nightmares brought on by post-traumatic stress, but lost his job because of it. Now he turns to alcohol to help him sleep. If that doesn’t work, he keeps a bottle of NyQuil by the bed.

• Victor Zapata, a 15-year-old with uncontrollable seizures, was approved for a medical marijuana card two weeks ago, but his mother is hesitant to start the medication because she fears a hospital stay could derail his progress. Hospitals in Delaware don't administer marijuana products to patients like Victor for fear that the federal government, which still classifies marijuana as an illegal drug, will slap them with hefty fines or take away licenses and federal funding.

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Delaware’s medical marijuana program continues to evolve since it began in December 2011.

Even though the state planned to open dispensaries in each county years ago, the process moved slowly amid threats from the federal government. The first dispensing site, First State Compassion Center, opened as a pilot in Wilmington in 2015.

Now the state is nearing the end of contract negotiations that could open two more dispensaries in Kent and Sussex counties by 2017.

Lawmakers have also expanded the list of conditions adults and children need to have in order to be eligible for medical marijuana to include cancer, specific types of autism and seizures. Gov. Jack Markell signed a law Wednesday that adds terminal illness to the list.

The number of participating physicians has grown at the same pace. Over 300 have recommended patients for cards, with 1,752 patients being approved to date. The majority live in New Castle County, are over the age of 50 and suffer from chronic pain.

Delaware decriminalized possession of small amounts of the drug for recreational use and legalized it for medical purposes, but the federal government has not budged, even amid changing public opinion and interest in research. The Drug Enforcement Administration in August announced it will keep marijuana illegal for any purpose.

Staunch opponents of marijuana legalization — for both medicinal and recreational use — say the loosening stance on the drug is misguided and dangerous.

“This is not a medicine, and it never has been,” said Carla Lowe, founder of Citizens Against Legalizing Marijuana in California. “People are buying into that message. It is all part of the plan [for legalization], and the dopers are pulling the strings.”

Dr. Matthew Roman, one of Delaware’s only doctors specializing in medical marijuana, sees the issue differently.

“Delaware has a problem with narcotics,” he said while sitting in his Wilmington office behind a picture of a marijuana plant. “The public is coming to me asking for a way out, and when other doctors just throw more medication at them, this is an alternative.”

Buying an ounce on the street

Medical marijuana patients in Delaware find themselves navigating the tricky web of state and federal laws every day.

In 2008, Boone was in a crash in which he flew over the handlebars of his motorcycle, shattering his collarbone and back. The 45-year-old underwent multiple surgeries, but still suffers from unbearable pain, nerve spasms and a brain lesion.

He said he is allergic to opiates that are traditionally used to treat chronic pain, leaving him with little relief on the excruciating days when his body is so stiff he can barely move.

Boone was accepted into the state’s medical marijuana program and now finds himself on weekly trips to New Castle County for his one comfort from the pain.

He purchases 3 ounces — the maximum allowed by law — every 14 days from the Compassion Center. He then purchases an additional ounce on the street for about $120, or about a third of the price.

Four ounces gives him enough to create a tincture, or a a marijuana oil created by dissolving the drug in alcohol. He takes drops of the solution mixed with grapeseed or avocado oil as a pain reliever.

“This is a natural pain killer,” he said. “The pain is still there, but your body doesn’t respond to it.”

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Between buying the raw marijuana and traveling, he estimates he has spent upwards of $25,000. A dispensary near his home would significantly cut down on that cost.

Even though the state says a dispensary in his home county of Sussex is imminent, he and Trevor Wiberg, who suffers from a rare genetic disease, renewed a lawsuit in August against the state Department of Health and Social Services to force the agency to comply with the Delaware Medical Marijuana Act.

The act said that all three counties must have a Compassion Center by Jan. 1, 2013.

“If the state tomorrow, next week, next month follows the law, the case will be dismissed, happily,” Boone’s attorney, Edward Gill, said.

Paul Hyland, director of Delaware’s medical marijuana program, said that even though negotiations are private, the state is moving along and expects new dispensaries to begin growing product soon.

“These things take time,” Hyland said.

Hospitals remain strict  

The path forward for medical marijuana patients who have to grapple with frequent hospitalizations or admittance into long-term care facilities is not so clear.

Hospitals in Delaware do not allow patients to be given or prescribed marijuana on their grounds. If they did so, they say they would face repercussions from the federal government

While at Nemours/A.I. duPont Hospital for Children, Olga Zapata described that struggle. Her son cannot express his pain even as doctors poke and prod him to figure out the source of a lingering gastrointestinal issue on top of his regular seizures.

Zapata is convinced cannabis oil could reduce the number of Victor’s anti-epileptic medications and keep him out of the hospital, but she fears starting and stopping his treatment for a stint in the hospital would be worse.

So she hasn’t used the medical marijuana card her son was approved for two weeks ago.

“What would be our choices then? The only choice is to go back to those drugs that we are desperately trying to avoid,” Zapata said. “We have permission to do so, so why would the federal government interfere in a state business? I want the hospital to maintain quality of care and the patient comes first.”

Dr. Karyl Rattay, director of Delaware’s Division of Public Health, which oversees the state’s medical marijuana program, empathized with her problem.

“We know that this is a concern for individuals and it’s a concern for us as well,” Rattay said. “That really needs to be addressed at the federal level.”

Several measures have been proposed in Congress to address this matter, but there still is the looming federal mandate. Some states have made changes to increase accessibility.

Connecticut Gov. Dannel Malloy signed a measure into law that includes a provision that allows nurses to administer medical marijuana in licensed centers, while Gov. Paul LePage, of Maine, signed a bill that offers legal protection to hospitals that dispense marijuana that cannot be smoked or vaporized.

Even with the strict federal law, Dr. Jason Silversteen, director of Christiana Care Health System’s Comprehensive Multiple Sclerosis Center, said he would not rule out medical cannabis for a patient based on the possibility he or she might be hospitalized.

Silversteen certifies patients for medical marijuana and currently is treating about 250 multiple sclerosis patients who use the treatment to combat symptoms of nerve pain.

“You have to be federally compliant, but we do our best to bridge people,” he said.

“It’s a current gap in the system simply because this whole process is still evolving,” Silversteen said. “Hopefully one day this gap closes and it’s made more accessible to all.”

Nancy Lemus tried to stave off a hospital visit as long as she could for her son Christopher, but after about a month she broke down.

The 10-year-old lives with cerebral palsy and dystonia, a disorder that causes debilitating spasms and affects the way the body moves.

“It does him no justice to keep him at home and keep patching something that needs to be fixed,” Lemus, of New Castle, said.

Once admitted to A.I. duPont Hosptial for Children he swapped his cannabis oil for narcotics to manage the pain. Heartbroken, Lemus met with Nemours’ ethics board to try and find a solution, but officials insisted that changes needed to occur at the federal level, she said.

Janie Maedler, a medical marijuana advocate who pushed for pediatric patients to be able to use cannabis oil in Delaware, said she is fortunate her daughter Rylie, 10, didn’t have to be hospitalized overnight for a procedure last year.

Rylie started experiencing seizures in 2013 after a surgery to remove a benign tumor in the left side of her face. The oil was found to calm her seizures.

Last September, Rylie had to go in for an electroencephalogram to catch abnormalities related to the brain’s electrical activity. But she couldn't use her cannabis oil.

“It was torture. As soon as they unhooked her wires they told me you absolutely cannot (give her the oils) until your car is off the property,” Maedler, of Rehoboth Beach, said.

But she said the hospital is willing to work with parents on a solution.

Chris Manning, a spokesman for Nemours, said that physicians who are affiliated with the hospital can certify patients have a particular condition that makes them eligible for medical marijuana cards, but the hospital will not administer, prescribe or dispense medical marijuana on-site unless a patient is enrolled in a federally approved research study.

“The legalization of marijuana for medical purposes at the state level has proved challenging for hospitals and providers around the country,” Manning said. The hospital system “continues to monitor developments at the state and federal level to ensure compliance with the laws.”

‘On the edge’

More physicians are willing to certify patients for medical marijuana, Rattay said, adding that she personally has conducted presentations with the medical community to educate them on the program.

“When I talk to physicians about medical marijuana, I almost always talk about the opioid crisis we are dealing with,” she said, pointing to limited research that demonstrated a decrease in opiate dependence in states with medical marijuana programs.

Roman, a doctor whom patients often turn to when their primary physician is unwilling to approve them for the program, said he hopes other doctors will also become comfortable with the process.

Psychiatrist Dr. Marc Turgeon recently joined Roman’s office on North King Street in Wilmington, which is marked out front by a green door and a sign for Nature’s Way Medicine that is covered in marijuana-themed stickers.

More psychiatrists getting on board would help people like Derek, who suffer from post-traumatic stress disorder and want to use medical marijuana.

PTSD is the only qualifying condition that requires a psychiatrist's sign-off, and there is a shortage of the specialists in Delaware. This, coupled with the fact that the VA falls under federal law, leaves many veterans stuck.

“The veterans are a huge source of patients that we have to turn away,” said Maggie Fauver, Mid-Atlantic Regional director of Canna Care Docs, which helps patients prepare to apply for medical marijuana cards. “We don’t have a psychiatrist on staff.”

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Derek’s nightmares began before he left the U.S. Army six years ago.

The Dover resident, who didn’t want his last name to be used because he is applying for jobs, said he made an appointment with the Wilmington VA as soon as he was discharged.

“The very first thing the VA did was hand me a bottle of antipsychotics. The volume of pills and the varieties of pills continued to change,” Derek recalled. “It got rid of the nightmares, but I would wake up in the morning soaked in piss.”

So, instead, he drank. He said he had recreationally smoked marijuana, but a friend eventually suggested he try it to help with his nightmares.

“I started to notice that I felt happier. I felt like a different person,” Derek said.

But he couldn’t find a psychiatrist to certify him for a medical marijuana card so he continued to use illegally, costing him his job.

He almost took his life on three occasions and credits his miniature dachshund Chewy with keeping him alive.

“I’m just like on the edge here,” he said.

Contact Jessica Masulli Reyes at (302) 324-2777, jmreyes@delawareonline.com or Twitter @jessicamasulli. Contact Jen Rini at (302) 324-2386, jrini@delawareonline.com or Twitter @JenRini.

Who can get medical marijuana in Delaware

Delawareans must apply for a medical marijuana card in order to purchase at a dispensary. A doctor must first certify that they have certain qualifying conditions to be eligible for medical marijuana treatment. 

Children and adults

• Terminal illness
• Intractable epilepsy
• A medical condition that causes debilitating pain, seizures, intractable nausea or muscle spasms

Adults only

• Cancer
• HIV
• AIDS
• ALS / Lou Gehrig's Disease
• PTSD
• Autism with self-injurious or aggressive behavior
• Alzheimer’s disease that causes anxious or agitated behavior
• Severe cirrhosis with likely need of a liver transplant