Even something as simple as a dentist appointment is a challenge when your child has epilepsy.
Sally Gaer has dedicated her life to caring for her daughter Margaret. She has researched, joined forums and talked to parents from across the country about what works best for their kids with Dravet Syndrome. That's how she learned about medical marijuana, and met the moms trying to legalize it in Iowa.
"Then i saw Maria la France on TV and I'm like 'I've got to find this woman because she was fighting the fight in Iowa in 2013," Gaer said.
But in 2013, Republicans in the Iowa legislature said legalizing it, even medically, would never happen.
"Doing anything let alone this one would be at the top one or two stupidest things that has ever been passed by this organization in my opinion", said Rep. Clel Baudler at the time.
Mothers with heartbreaking stories lobbied for countless hours, and got the legislature to agree to a compassionate answer in 2014. Those with epilepsy could possess it in the state, but they'd have to go outside of Iowa to get it.
"It really put Iowans in a very difficult place," says Threase Harms, a lobbyist for the Epilepsy Foundatoin and the Multiple Sclerosis Society. "Because you had to obtain this from another state illegally then bring it across state lines, breaking interstate commerce laws."
She organized the advocates in their fight, but after two more years, the emotional appeal wasn't working anymore. Nothing changed. Until 2017.
"It didn't really dawn on us until this legislative session that that was a piece we were missing", Harms says.
Harms and her team shifted their strategy, focusing now on the science behind it all.
"It was just a missing piece in helping policy makers understand that this is a very controlled grow," Harms says. "Helping them understand its pharmcological in how they track the cannabis from seed to sale."
Iowans who grow marijuana in other states, like Colorado, joined Harms at the statehouse, teaching legislators how the cannabis plant is turned into medicine. It wasn't until there was a week left in the session that a comprehensive bill dropped in the Senate. It was everything Harms and Gaer wanted.
It passed the Senate with overwhelming, bipartisan support. But House Republicans didn't like it. They were running out of time to come up with a compromise.
"It was emotionally, physically and mentally exhausting during that last 24 hours because we had so much at stake," Harms says.
After a grueling overnight debate, the House passed a different bill, one that would create growing facilities and dispensaries in the state.
House File 524 establishes an advisory board composed of medical professionals, law enforcement and patients to oversee the process.
The bill gives access to patients whom an Iowa-licensed physician has diagnosed with Parkinson's disease, cancer, multiple sclerosis, seizures, AIDS and HIV, Crohn's disease or Amyotrophic Lateral Sclerosis, as well as terminally ill patients with less than a year to live who have untreatable pain.
The bill would also limit the type of medical marijuana available to that with less than three percent THC, the psychoactive component of medical marijuana.
While this bill means epileptic patients no longer have to break laws to get their hands on the medicine, Harms says the THC provision means some patients are being left behind.
"This is probably not going to help every person who has a condition listed in that bill," Harms says. "That's why I think we'll be back, because we are far from done in helping the people who could benefit from this."
Governor Branstad has until May 22 to sign the bill into law or veto it.
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