by Jeff Bender
While politicians haggle over fines, taxes, THC levels, canopy space, licensing fees and excises, thousands of chronically ill Mississippi patients and their families who thought they’d get medical marijuana months in advance of the will of voters feel lost.
The legislature has failed to approve a medical marijuana program for years, despite there being a big wave to do so, so Voters took matters into hand.
the state The Supreme Court overturned An overwhelming vote of the people on the technology.
Governor Tate Reeves and lawmakers promised to fix this subsequent haste. They got into an argument and they didn’t.
Meanwhile, the pain, nausea, seizures, and pharmaceutical side effects of Mississippi patients do not subside.
Alison Pepkin has dealt with severe pain and nausea and has “taken all kinds of medication you can take” since she was 11 and was misdiagnosed with ulcerative colitis.
At age 14, Pipkin of DeSoto County was diagnosed with Crohn’s disease and had her colon removed. The surgery was expected to take six hours, but it took 12 because Pepkin’s colon had fused into other organs. She had to have a colostomy bag for three months until another surgery.
Pipkin now describes 24 long, grueling journeys through multiple surgeries and pharmaceutical drugs — steroids, biologics, opioids, pain pumps, even methadone — and their side effects. She had to get special permission to start taking one drug years ago due to her age. Two medicines you are taking now carry warnings not to combine them; One costs thousands of dollars a week without insurance. But she did so because they are keeping her illness in remission. She no longer takes narcotic pain relievers.
Pipkin has researched and seen reports of cannabis helping Crohn’s patients. She tried black market marijuana in high school and it helped her nausea and chronic pain. You won’t use it now for fear of losing your insurance and because it’s illegal in Mississippi.
“It did help with symptoms, even if it wasn’t a cure-all,” Pepkin said. “It’s better than drugs. I don’t understand how they can prescribe all these drugs to a 14-year-old girl…but they can’t prescribe a plant that is not addictive.
“I feel like they (the politicians) have absolutely no sympathy for humanity,” Pepkin said. “If I were the wisest of people, I would want them to be the happiest and healthiest of them all to help society.”
Pipkin wants to continue her college education. She is considering receiving a scholarship offer from Arkansas State University. Arkansas voters legalized medical marijuana in 2016.
Shane Polk’s years of service in the 82nd Airborne Division, including a tour during Desert Storm, took their toll on his body.
He’s suffered traumatic brain injuries, shattered vertebrae, and so many other injuries that he’s jumped out of planes and blown things up, and he has to think a little bit about calculating all the surgeries he’s had. And for the past 25 years, his “life has revolved around seizures.”
Polk, 52, of Biloxi has grand mal seizures and notes dry, “One wrong fit for me, and I’m dead.” He also suffered from small strokes and migraine headaches.
At one point, your pee had 20 to 30 seizures a week, sometimes three or four seizures on a bad day. He was taking several medications a day and they didn’t seem to help. He stopped taking opioids because he had “getted to where they don’t help” and didn’t want to become addicted.
Polk said he was feeling “over-medicated” and miserable, taking a handful of prescriptions a day about four years ago when he heard on TV that cannabis could help with seizures and other ailments. He had a friend in Colorado—who legalized medical and recreational marijuana—and went on an extended visit.
“I tried cannabis, and it worked,” Polk said.
Polk has stopped taking most of the medications he was taking, his seizures are down to one every four or five months and his pain is lessening.
“It’s not a panacea, but I’d say I’m 80% better,” Polk said. “I’m doing just fine for the shape I’m in.”
But Polk is forced to turn to the black market for marijuana in Mississippi.
“I don’t want to and I shouldn’t,” Polk said. “It’s almost embarrassing – you want to hide that you’re using it. It’s a risk, but I also either hit my head or don’t wake up from the next seizure…I’m using this medication, and I want the doctor to be in charge. I want it to be regulated and monitored.”
“Who makes these decisions – the governor – what if your son or grandson is suffering? I feel like we are being pushed aside by politics. People are suffering and there is no need for that.”
Jane Tate is one of about 3,000 people in Mississippi dealing with sickle cell disease, which affects red blood cells in the body, obstructing the flow of oxygen, and, says Tate, “causing unbearable pain I wouldn’t wish on anyone.”
Tate dealt with blood transfusions, pain medication, and “sickle cell crises” that can last anywhere from a few hours to weeks at a time, causing terrible pain.
Tate, a Byram accountant and president of the Mississippi Sickle Cell Foundation, is 49 – which she proudly presents because “many of our patients don’t live to be 49.” The average life expectancy in the United States for a person with sickle cell disease is 47.
Tate says research has demonstrated the benefits of medical cannabis for sickle cell patients, and she believes it could help many people reduce or eliminate opioid use for pain.
She was frustrated by the delay in approving medical marijuana in Mississippi.
“Our politicians need to do what is right by the people who put them in their positions,” Tate said. “…It’s sad to say, but frankly, I don’t have much faith that they’ll get it done quickly. That’s why Initiative 65 was created from the start, because for many years our legislators haven’t done anything. This will take some time, even if they get through it.” Patients will probably look at another two years before they find relief. It’s a shame this state is slowing down on a lot of issues. I don’t have confidence now that that’s going to happen. I just don’t.”
Jenna Lee Robinson was seven years old when she was diagnosed with myoclonic epilepsy. She had a seizure in her elementary school, about five months after Hurricane Katrina destroyed Robinson Biloxi’s home and the family moved to Debreville.
Paul Robinson said Jenna, the youngest of his three daughters and wife Tony, “took the diagnosis better than her parents.”
“I connected with life,” Robinson said.
Gina loved to dance – “she had an absolute passion for it, loved to sing and act.” The family owns a dance studio on the coast, Gina danced and taught. In her teens, she started her own successful business, presenting characters for parties and events. At the age of sixteen, a talent company in New Orleans offered her an acting, singing, and modeling contract.
But Gina’s epilepsy was causing a lot of problems, and she had to decline the contract to focus on her health. At 17, doctors told Gina Robinsons’ epilepsy was “resistant.”
“That means there was nothing left on the pharmacy shelf, and they tried everything and it didn’t work,” Robinson said. At her worst, Gina had 100 seizures a day, “focal” or “absence” seizures that lasted about 20 seconds each. When the drug appears to be working, Robinson said, her epilepsy will progress and “her brain finds a way to get around the drug, causing sudden seizures.” Medicines often had terrible side effects, and many required tapering to stop them even when they caused problems.
But Jenna never let her epilepsy get off her – she was “dancing it,” as her father said. Despite being unable to get into regular school, Jenna excelled in the home school program, and by 17 she was already in her fifth college course, and planning to pursue a business degree.
With pharmaceuticals not working, Robinson said he brought up the idea of medical marijuana with Gina after learning of several promising clinical trials. But Jenna refused.
“The DARE (Youth Against Illicit Drugs) program has done its job,” Robinson said. “She doesn’t want to do anything about it, I don’t smoke steroids,” Robinson said. But after she explained that there were inhalers, transdermal patches, nasal sprays, and other combinations of the drug, “we convinced her we’d open that door after she’d finished her big party.”
“We were hoping we could manage it so we could get to a better place,” Robinson said. “We’d go on a long vacation to California or Colorado, we’d even discuss how to make housing there—we have business here to maintain—and we were going to find a doctor who’s great in the field and do it according to them.”
But Jenna died sometime in the early morning of April 4, 2016. Her death is listed as Sudden Unexplained Death in Patients with Epilepsy, or SUDEP. Her father still rides an emotional rollercoaster as he describes the happy memories of his talented, spirited daughter and recounts her death. Jenna’s legacy lives on in the Jenna Robinson Charities, which was founded by family and friends to support research into SUDEP, Epilepsy, and a scholarship fund.
Paul Robinson became an advocate for the Mississippi Initiative 65, which voters approved to create a medical marijuana program. He believes the drug could have helped his daughter, and is upset about the judicial and political stifle, and the governor did not summon lawmakers to a special session in 2021 to approve a program as he promised.
“I think Governor Reeves is a good guy, but I think he keeps jumping on the right track,” Robinson said. “It looked as if the House and the Senate were there, in agreement. People spoke very clearly, and it’s as decisive a vote as you can get. Governor Reeves always says he’s a numbers guy. Well, I don’t think he thinks about how many people need these. Relief. I don’t think he understands what it means to have someone suffer, without a good pharmaceutical product that provides the relief they need. I think if he was in that position one day he wouldn’t have been so trivial.”
Angie Calhoun of Phuket, founder of the Mississippi Alliance for Cannabis Patients, was one of the leaders of the citizen-led campaign for medical marijuana. Her son, Austin, suffered from seizures and other problems for years and eventually passed out of the condition when he became an adult so he could be treated with medical marijuana.
Calhoun said she believes “patients have been put on the back burner” amid the political debate over medical marijuana in Mississippi.
“So far, we’ve been running through the competition,” Calhoun said. We passed Initiative 65 with an overwhelming support, but later the Supreme Court overturned that. Two legislators (Senator Kevin Blackwell and Representative Lee Yancey) stepped up and wrote a wonderful bill – it gives patients what they need without a lot of regulations and obstacles, but it also implements a really well structured safe program. But we were left in limbo.
“This should be a matter of love and compassion,” Calhoun said. “…we don’t need patients to suffer any more. Anyone who has ever suffered or had a love with severe pain and bouts of chronic illness understands that.”
“I’m begging and asking lawmakers to come in within the first or second day of their session and pass the Mississippi Medical Cannabis Act, and I’m begging the governor to hear the legislature, listen to the voters, open his heart and get him signed into law.”
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