In legal limbo
FRUSTRATINGLY OUT OF REACH FOR LOCAL FAMILY
A lack of access to medical cannibis for child with autism, epilepsy frustrates family.
Micah Jensen reached across the table and slapped his sister’s wrist. He shimmied out of his chair. Ran up to her face and spit. Grabbed his iPad, the one with the rubber protector, and chucked it at the wall. He lunged head-first onto the sofa and howled.
At least this time, no chairs were thrown. This time, it wasn’t in public. This time, his sister wouldn’t bruise.
The 12-year-old’s autism makes him easily agitated. On top of that, he has epilepsy, and the medicine he takes to reduce his violent seizures heightens his sensitivity to sounds, including certain words, plunging him into an increasingly aggressive cycle.
His family believes the low-THC cannabinoid oil the state recently made legal could offer relief and treat his epilepsy. But Texas’ medical cannabis program wasn’t designed for him.
An estimated 500,000 Texans have epilepsy, but the cannabis law restricts its use to those suffering from the rarer “intractable” form.
The drug went on sale this spring for the estimated 150,000 Texans with intractable epilepsy, but it remains out of reach for Micah and others who want very much to give it a try.
His family is fighting to get the state to rewrite its rules. But the Legislature
“I’d go to the Capitol every day of the week if it would make a difference for Micah and other children.” Bonnie Jensen, whose son doesn’t qualify for medical cannabis “This isn’t a cure-all for everyone at every time. What families want is the opportunity to try it.” Heather Fazio, Texans for Responsible Marijuana Policy
In other states, medical cannabis is approved for epilepsy, autism, multiple sclerosis, cancer, post-traumatic stress disorder and Alzheimer’s disease. And in Texas, only 0.5 percent of THC can legally be present in the medicine. In other states, there is no such cap.
doesn’t go back into session until next year, and they have no guarantees they will get enough political support by then. All the while, Micah is getting bigger, more aggressive.
As his sister gently touched the spot where Micah had slapped her, she thought about what had set him off this time.
It wasn’t the word “clothes,” the first her family learned, by trial and error, not to say in Micah’s presence. It wasn’t “white.” Or “stoplight. Or “sick.”
A new word then. Actually, two: “Dark yellow.”
“Sister is sorry, Micah,” Blaire McBurney, 22, said with a thin smile.
Exhausted from the screaming and thrashing that February morning, his breathing at last steady, Micah returned to his seat at the kitchen table in his League City home. He resumed coloring, filling in the blue background of a fruit basket. “I love you,” McBurney said. “Love you,” Micah muttered back.
She doesn’t know if he means it. Or if he knows what the word means anymore.
He needs something to calm him down, to make him more like his younger self.
When her mother, Bonnie Jensen, remarried, 10-year-old Blaire McBurney wished for a baby brother. She already had an older sister. She wanted a brother she could cheer on at sports games, someone she could teach how to date and help pick out a prom tux.
Micah was born at 5:35 on a Wednesday afternoon.
“He was beautiful,” Jensen said. “He was perfect.”
But when Micah turned 3, he began lining up his toy cars in a row and just staring at them. His limited vocabulary became more limited. He forgot how to go potty.
Jensen, 47, quit her job as an executive assistant to take care of and homeschool him.
In old videos, a young Micah laughs along with other children while playing musical chairs in therapy.
His mother can’t watch without sniffling. It’s hard, seeing what life was like before Aug. 1, 2013.
Early that morning, she felt something shudder in her bed. Beside her, Micah trembled uncontrollably, and she saw his skin turn a deep shade of blue and purple. He gasped for air.
It’s unclear how long Micah’s first epileptic seizure lasted. It’s also unclear whether he had been having small, barely noticeable seizures before then, when he’d stare off to the side and his eyes or hands twitched.
After the epilepsy diagnosis, he used fewer words. He slapped the back of one hand against the palm of the other more often, a go-to sensory stimulation related to his autism. He became more easily agitated, then more violent, especially at hearing certain words.
“It’s not a response he can control,” Jensen said.
The older he gets, the stronger his attacks. Desperate for something that could address both his epilepsy and autism, Jensen researched possible solutions.
Before 2016, she counted herself among the skeptics of medical cannabis. Was it really a potent treatment for severe conditions? Or a means for potheads to get a legal high?
Late-night internet searches led her to stories of patients in other states, where medical cannabis was approved for epilepsy, autism, multiple sclerosis, cancer, post-traumatic stress disorder and Alzheimer’s disease.
Some online posts claimed cannabis stopped epileptic seizures altogether. She found research documents from abroad, explaining how the drug could even improve language abilities among autism patients. It all pointed to one conclusion:
Micah had to try medical cannabis.
There was just one problem. He lived in Texas.
Two hours before the words “dark yellow” set Micah off that February morning, McBurney held his hand as they bounced to the beat of Whitney Houston’s “I Wanna Dance With Somebody.” Micah smiled broadly.
Jensen watched from the kitchen table, stirring her tea. The dance party gave her a break from reading exercises with her son.
After Micah’s moods became more volatile, the house on Moody Avenue became Jensen’s world.
It’s where the sound of Spanish guitar regularly fills the air. Where pieces from her teapot collection are on display above the fridge, far from reach. Where she spends hours and hours with Micah while McBurney attends the University of Houston-Clear Lake and Dale Jensen teaches high school math.
Twice a month, she leaves home for local gatherings of Mothers Advocating Medical Marijuana for Autism. Together, they discuss ways to expand Texas’ program.
Gov. Greg Abbott signed the Texas Compassionate Use Act in 2015 to have the Department of Public Safety license at least three medical cannabis dispensaries.
Though marijuana-policy advocates and experts praised the program as a historic first step for the conservative state, they were quick to note just how restrictive it is compared to other states’ programs.
For instance, the drug would be allowed only for patients who got a prescription from a doctor registered with the program along with a secondary doctor’s approval.
Those who qualify but live west or south of San Antonio may have issues reaching the 30 registered neurologists in the program. None have offices in those regions.
Another obstacle is the THC limit. Under the Texas program, only 0.5 percent of THC can legally be present in the medicine. In other states, there is no such cap. It’s up to the doctor and patient to determine how much THC is needed.
There’s no telling whether the limited amount of THC would be enough to treat Micah’s epilepsy and autism. Regardless, he’s barred from finding out.
His neurologist, Dr. Joshua Rotenberg, notes that Micah’s current seizure medicine does help stop his convulsive seizures. So even if partial seizures remain, and his autismrelated aggression worsens, the prescribed medication is, in effect, helping treat his epilepsy.
Micah’s current medicine would need to stop working, and a subsequent pharmaceutical must also fail him before Rotenberg can consider prescribing him medical cannabis as a registered doctor in the Texas program.
Unless, of course, the program was no longer limited to treating intractable epilepsy.
That’s why, on Dec. 12, 2016, Jensen was at the Capitol to strategize with other parents in preparation for the 85th state legislative session.
On their agenda: legislation to allow for more conditions under the program and lifting the THC limit.
The last time Jensen had done something close to political advocacy was when she went to hear Ron Paul speak at the University of Houston in 2012. Before that, her parents took her to a Reagan-Bush rally as a child.
The other mothers in Austin all seemed to know each other, having been on the campaign trail when the program was drafted and enacted.
One of the original group members, Terri Carriker, 56, could recite medical cannabis case studies off the top of her head. She smiled at Micah. Her own daughter, Catherine, has intractable epilepsy.
Heather Fazio, spokeswoman for Texans for Responsible Marijuana Policy, said it’s still not clear how well medical cannabis oil can help a variety of patients. Clinical trials are still forbidden in the U.S. because of the Drug Enforcement Administration’s Schedule I classification of marijuana, likening it to heroin and ecstasy.
Yet case studies from legalized states anecdotally point to medicinal benefits, with significantly less harmful side effects than some pharmaceuticals.
For Fazio and others, including Micah and Catherine’s neurologists, it’s a matter of giving more patients access to an alternative treatment.
“This isn’t a cure-all for everyone at every time,” Fazio said. “What families want is the opportunity to try it.”
By May 2017, Jensen and Carriker rested their hopes on House Bill 2107, which had more than 70 co-authors, including at least 30 Republicans. It never came to fruition. Advocates blamed a technicality. Jensen returned home from the Capitol empty-handed.
Carriker’s daughter would get access, but she was deter-
Gov. Greg Abbott signed the Texas Compassionate Use Act in 2015 to have the Department of Public Safety license at least three medical cannabis dispensaries. It is restrictive compared with other states’ programs.
mined to keep fighting for others.
On a recent February afternoon, Catherine Carriker paid no attention to Arthur, the cartoon aardvark, as he played with his friends on TV. Instead, the 15-year-old sat on the couch in her Austin home and flipped through the pages of a book using only her right hand. It was her favorite, Dr. Seuss’ “One Fish Two Fish Red Fish Blue Fish.”
Catherine was the fourth of the Carriker children, and a dream come true for eldest Grace, who desperately wanted a sister after years with two young brothers.
Baby Catherine had her first convulsive seizure when she was 3½.
Doctors inserted a gastronomy tube in her belly when she was 5, after a seizure medication caused her liver to fail.
Later, surgeons removed significant portions of her brain’s right side and cut connections between the its left and right. She was having at least 10 major seizures a day. Doctors feared she could die.
The surgeries worked to a fault. The number of seizures were reduced, but Catherine was left forgetting she had left limbs.
So while Arthur grabbed his lunch tray with two hands, Catherine flipped through her book with just one.
“Want to read, Princess?” Carriker asked.
Though Catherine can’t make out the words, struggling to verbalize one at a time on chatty days, she always reaches for colorful picture books. She hugs them, skims their pages and presents them to family and therapists so they can read to her.
Sitting cross-legged beside her youngest, Carriker straightened Catherine’s white T-shirt. Moments earlier, she had lifted it to pour Catherine’s afternoon dose of felbamate into her tube. It’s one of the seizure medications she hopes medical cannabis can replace.
One of the side effects of felbamate is bone marrow disease, which can be fatal. The drug was almost taken off the market.
In the kitchen, a stack of multicolored index cards lists the more than 20 seizure medications that failed to work over the years.
It wasn’t until 2013 that the Carrikers found a drug to believe in, when Catherine tested a version of medical cannabis.
One morning, soon after, Catherine watched an episode of “Daniel Tiger’s Neighborhood” in which the characters sang, “You gotta try new food because it might taste good, so good.” Later that day Grace offered Catherine some food at a festival. Catherine took a moment to stare at the dish she had never tried before.
“So good,” she said in a singsong voice, imitating the song.
Catherine’s family had never heard her connect something from the past with the present.
On the couch, Carriker lightly tapped Catherine’s left hand. She looked at it, then used it to grab one edge of the book in her lap. Carriker grabbed the other and read aloud.
She got to Catherine’s favorite page. It showed two dogs trying to call each other in the night using a tin-can telephone.
“Hello! I called you up to say hello,” Carriker read. “I said hello. Can you hear me, Joe?”
In a few months, Catherine should receive her medical cannabis prescription, and her family will get to see whether it makes the difference they’re hoping for.
Carriker knows so many others are waiting for their turn. People like Bonnie Jensen. Jensen stirred chicken broth into the Instant Pot full of greens while McBurney and Micah rested from their dance party. Dinner would be ready by the time Dale returned from school.
It was McBurney’s day off from classes. She graduates in May with a degree in behavioral science. She wants to shape policy to help teens and adults with special needs in Texas.
“Hey,” she said, tapping Micah’s shoulder as he worked on his coloring book. “Who’s your favorite person?”
“Micah,” he replied, without looking up. McBurney pouted. “OK. Who’s your second favorite?” “Mommy.” “What?!” Jensen couldn’t stifle a chuckle.
Micah frowned, deep in thought. He tried again. “Sister?” “Good,” McBurney said. Should anything happen to Bonnie and Dale Jensen, McBurney will be Micah’s primary caretaker.
She takes him on walks to a nearby nature center to improve his motor skills. She helps him brush his teeth. She supervises him when he plays outside, making sure he doesn’t hurt himself when he rips bark off a tree.
Micah once grabbed a fistful of her hair and rammed her head against the car window. But he also cuddles with her on the couch, watching funny videos on YouTube.
The veggie soup done, Jensen printed out documents from the home desktop.
She slipped the papers into a file folder, research documents on the medical benefits of cannabis. She would bring them along to a get-out-thevote rally in Galveston for the Texas primaries. There was talk that Gov. Abbott would be attending, and she hoped to get a moment to chat with him.
She was devastated when efforts to expand the state’s medical cannabis program stalled in 2017. She’s frustrated that on top of the difficulties involved in raising her son, she has to fight for him to get access to medicine.
But the frustration doesn’t deter her.
“I’d go to the Capitol every day of the week if it would make a difference for Micah and other children,” she said.
Her hope now lies in the next legislative session and efforts to persuade politicians to change the state’s law.
Whatever happens, she knows she can’t give up. She won’t give up.
“Will you be good to your sister?” Jensen said, ruffling Micah’s hair. “Where?” he asked. “Mommy’s going to be with Ms. Debbi and Ms. Elizabeth.”
“You be back when?” Micah asked.
“When it’s darker out,” she replied. “I love you.”
Micah paused before wrapping his arms tightly around her.
Her sweater muffled his reply.