Despite law, Iowans lack way to get medical marijuana

Iowa will hit a milestone next week in the years-long debate over medical uses of marijuana, but some of the people who fought for the change are ambivalent.

The state is to start accepting registrations by Friday for official cards allowing people to possess a special marijuana extract — the result of a law Gov. Terry Branstad signed in May to decriminalize possession of the extract for people with severe epilepsy.

Kim Novy of Altoona has two daughters who could qualify. She believes the marijuana oil could greatly reduce her twins' life-threatening seizures. But she's in no hurry to fill out the new state paperwork. "What's the point, really?" she asked recently.

The new cards will alert police that the carriers have a legal right to possess the extract, also known as cannabis oil, which has little of the chemical that makes recreational marijuana users high. But the program offers no legal way to obtain the medicine.

"You know, if we could use it, I'd be the first one in line," Novy said of the program.

Novy was one of the activists who brought their disabled children to the Statehouse last winter and spring to help persuade reluctant legislators and Branstad to legalize the oil. Even sympathetic legislators told them at first that there was little hope for success. But the families' persistence helped push the bill through. Kim, her husband, Matt, and their 13-year-old daughters, Lauren and Lindsey, stood in the crowd behind the governor as he signed it into law.

RELATED: UI expert believes marijuana extract could help reduce seizures in some patients

The Novys don't regret serving as backdrops for the governor, even though the law is of little practical use to them.

"It was a good first step, but that's all it was," Matt Novy said.

They've heard the governor and some leading legislators say the law should be given time to work before it is expanded. "A lot of them are thinking that way, but their minds will get changed again," he added.

Lauren and Lindsey Novy have Dravet syndrome, a severe form of epilepsy that causes up to several hundred seizures per day. Many of the seizures are fairly minor. But some make the girls fall to the ground and stop breathing. The girls are intellectually equivalent to 4-year-olds, and they attend special-education classes, their mother said.

Lauren sat by her mother's side at their kitchen table recently as Kim Novy described what seizures are like. Then the teenager began to quiver, and her eyes rolled. "See, she's having one right now," Novy said. Lauren held her hands up near her shoulders and looked away blankly as the seizure continued for a minute or so.

The squall passed, and Lauren's eyes regained focus. The girl leaned over and kissed Kim's cheek. "I love you," she said. Kim smiled. "I love you, too," she replied.

The Novys keep a large oxygen bottle nearby for the times when seizures don't pass so peacefully. They keep another oxygen bottle upstairs in the girls' bedroom. Lauren and Lindsey sleep with sensors attached to their toes and hooked into an alarm system. The alarm sounds if seizures cause their heart rates or blood-oxygen levels to drop too far.

That can happen several times a night. The parents rush into the room and revive the girls, sometimes with oxygen.

Some kids with Dravet syndrome or other severe types of epilepsy suffer even more. "My kids can walk. They can talk to me," Kim Novy said. "I get to hear, 'I love you.' There are mothers who would give anything to hear that."

The Novy girls are now on three anti-seizure medications, and in the past they have been on up to five at once. All are powerful drugs that can have side effects, including fatigue and irritability. The Novys don't expect miracles from the marijuana oil, but they want to try it.

"I'm very optimistic. What do we have to lose?" Kim Novy asked.

The Novys and the other activists who pushed for last year's law said they appreciate the measure, even as they push legislators for an expansion. They want Iowa to join 23 states that national advocates say have usable medical marijuana programs.

Besides a distribution system, the Iowa advocates want marijuana to be available for other people's ailments, such as cancer, Crohn's disease and post-traumatic stress disorder.

"The stories that you hear just make you cry," said Maria LaFrance of Des Moines, who wants to obtain the oil to treat her 13-year-old son's epilepsy. The sight of her son and other suffering children helped win approval of last spring's bill, LaFrance said, but many adults with chronic conditions should also have the right to try marijuana.

LaFrance helped lead a Statehouse lobbying day last week that included a range of people. One of them was John Custis, a Vietnam War veteran from Anamosa. Custis said he came to the Capitol on behalf of other veterans suffering the psychological aftershocks of war.

"They're not going to lobby for themselves," he said. "They're going to kill themselves instead."

Gov. Terry Branstad and Republican leaders of the House have expressed reluctance to reopen the debate. They have said they don't want Iowa to become like California and Colorado, where medical marijuana programs have led to widespread distribution of the drug.

House Speaker Kraig Paulsen told reporters earlier this month that last spring's bill was intended to "decriminalize" possession of the marijuana extract by people who would use it to treat epilepsy. He said the law is functioning as intended.

"I don't anticipate us running a bill related to legalizing marijuana, medicinal or otherwise," the Hiawatha Republican said. "That's not what the General Assembly committed to doing."

Supporters of change take heart from recent votes by the Iowa Board of Pharmacy and by a special study committee of legislators, which both endorsed steps beyond what the Legislature passed last spring.

Sally Gaer plans to fill out the registration paperwork as soon as it's available. Gaer's 24-year-old daughter, Margaret, has Dravet syndrome. Gaer wants to have a cannabis card in case federal officials and other states change their laws to make it easier for Iowans with epilepsy to purchase the oil and bring it back home.

Gaer said activists will focus this session on rank-and-file members of the Iowa House. If enough Republican legislators want a debate, there will be a debate, said Gaer, whose husband, Steve, is the Republican mayor of West Des Moines.

Gaer said she also hopes legislators look into why state administrators couldn't start taking applications sooner. "I need somebody to explain to me why it took so long. I don't understand," she said.

Jill Myers-Geadelmann, a state health department administrator helping oversee the program, said officials had to work through a formal rule-making process, and decide details of how the cards would be designed and distributed. She said the process took as long as administrators told legislators it would.

How the system will work:

By Friday, epilepsy patients or their caregivers should be able to download applications for medical-marijuana permits from the Iowa Department of Public Health website, www.idph.state.ia.us/MCARCP/.

The applicants will fill out their part of the paperwork, then give it to an Iowa neurologist, who must attest support for use of cannabis oil. The neurologist will then send the application packet to the health department.

Jill Myers-Geadelmann, a health department administrator helping oversee the program, said her staff hopes to process applications within two weeks of receiving them. Her agency will then send them to the Department of Transportation, which is in charge of issuing the cards.

Successful applicants or their caregivers will be able to pick up their cards at DOT offices. There will be no fee.

The cards won't give patients any right to purchase cannabis oil in other states, but they will notify Iowa police that the cardholders have the right to possess the medicine.

Myers-Geadelmann said about two dozen people have already asked to be notified as soon as the registration system opens. She's heard from patient advocates that up to 30,000 Iowans could have intractable forms of the disease, but she's unsure how many of them will sign up for the cards.