Family with epileptic son backs cannabis bill
Published 11:27 pm Wednesday, February 25, 2015
Frustration boiled inside Jacob Bingham’s eyes. Moments earlier the 8-year-old from Troup was joyfully fixated on an episode of a favorite cartoon, “Backyardigans,” but his therapist’s request to identify a fork among other everyday items had him riled.
Jacob peeked at the television, which had been turned away from his sight, and then back to his task.
It’s a fork, a utensil used to eat, something his parents hope he will need to differentiate later in life, if he reaches adulthood. Learning, performing simple life skills and keeping his brain active are why the Binghams bring their son to Tyler for pediatric learning therapy five days a week.
This has been Jacob’s routine for the past four years. His parents see the progress, but they also see where his mind and body are regressing because of a rare genetic disorder — Dravet Syndrome.
Jacob’s condition is why he and his family were in Austin on Wednesday visiting legislators alongside his doctor and lobbyists with Compassionate Access for Epilepsy in support of two bills that would allow cannabis-based oils for treating severe eplileptics. The Binghams plan to testify in support of the bills during committee discussions.
Jacob’s twin brother, Jarod, an articulate, high achiever in school, sat quietly in the corner as his brother moaned in displeasure. Jarod, the elder by four minutes, stands eight inches taller and weighs about 40 pounds more than Jacob.
Jarod loves classic Fords and plans to be an engineer, but in the moment cheered on his brother to find the fork.
Jacob knows “fork.” That knowledge gleamed in his eyes but something inside his brain prevented connection.
“He wants to get up and go and function but he can’t function,” Jacob’s mother Marcy Bingham said. “He’s a loving, happy child otherwise and we want him to have as normal and quality a life as possible.”
Dravet Syndrome causes intractable seizures. Each seizure damages his brain. Jacob averages around 10 grand mal seizures each day. Grand mal seizures feature a loss of consciousness and violent muscle contractions.
Sufferers are 24 times more likely to die from sudden unexpected death in epileptics (SUDEP) and 20 percent of sufferers never reach adulthood. Their physical functionality and cognition continue to decline because of brain atrophy.
The grim reality to Jacob’s condition weighs on his mother, a registered nurse. But a known treatment for his condition gives her hope. She just can’t access it in Texas.
Cannabidiol heavy oils derived from cannabis have shown immense promise for Dravet patients. It’s one reason families are flocking to states like Colorado.
But moving would upend an already disrupted life, Mrs. Bingham said.
Dirk Bingham, Jacob’s father, said his son has tried every pharmaceutical option and that the legislation is his only option that would allow him to stay in Texas.
“We just want access,” Dirk Bingham, Jacob’s father, said. “We’ve tried everything else. This is it and right now we can’t use it.”
LEGISLATION
Republican legislators are wading into the premise of medical marijuana.
Sen. Kevin Eltife, R-Tyler, and Rep. Stephanie Klick, R-Fort Worth, filed the Texas Compassionate Use Act to make medical marijuana a treatment option for people with forms of intractable epilepsy. It would allow the use of cannabidiol heavy oils, which have been effective for patients suffering with Jacob’s condition.
It would not in any way legalize recreational use of marijuana.
The Bingham’s doctor, actually helped Sen. Eltife draft the bill with Jacob in mind, Mrs. Bingham said.
Eltife doesn’t want the bill to get muddled in the debate over pot legalization. He views CBD as medicine and his bill as a chance to help children suffering needlessly.
“Our legislation is focused on the patients, who are mostly children, who deal with these horrible seizures on a daily basis,” Eltife said. “As a parent, I can’t imagine knowing there is a safe treatment for my severely sick child but not being able to access that treatment.”
Intractable epilepsy afflicts an estimated 149,000 people in Texas. Patients with intractable epilepsy can suffer hundreds of severe seizures each week.
Intractable epileptics are at a higher risk for a shortened life span, excessive bodily injury, neurophyscological and mental health impairment, and social disability.
Senate Bill 339 and House Bill 892 would regulate the growth and dispensation of cannabidiol oils. Patients with intractable epilepsy have seen dramatic reductions in seizures through the use of CBD oil without exhibiting adverse reactions that occur with pharmaceutical drugs.
As filed, the bills require the oil to not contain more than 0.5 percent tetrahydrocannabinols (THC) and not less than 10 percent CBD by weight. This level of THC, the psychoactive component of the cannabis plant, is not sufficient to get the consumer high, even in large doses.
The drug would be regulated by the Department of Public Safety and dispensed by licensed non-profits, according to the bill. The department also will enforce compliance with the compassionate-use registry.
The bill would require two doctors agree the drug would benefit the patient.
The Texas Epilepsy Foundation supports the bills.
But other powerful lobby groups, including the Texas Medical Association and the .
The Texas Medical Association, one of the most powerful medical lobbies in the state, does not support the use of medical marijuana because the drug has not been properly studied.
Neurologist Sara Austin said the association’s stance is the same one that emerged during a recent Texas Neurological Society. She spoke on both group’s behalf and said cannabis is gaining momentum and that doctors always want access to better treatment options.
Cannabis’ placement as a Schedule 1 drug limits research, she said. The designation means cannabis is only harmful and has no therapeutic value and therefore should not be researched, she said.
“As a neurologist, it’s on our radar and it may be helpful but I wouldn’t prescribe something that hasn’t been studied for safety and efficacy,” she said. “Allowing children to take it without following scientific research wouldn’t be the right thing to do.”
Even medical marijuana advocates have been critical of the CBD-only bill, because of its narrow application.
The Bingham’s want any help the two CBD bills might give them. Mrs. Bingham believes there should be more options for patients with other conditions but she also doesn’t want to scuttle any chance her son might get relief in Texas.
The District of Columbia and 23 other states, including Colorado, Illinois, New Mexico, Arizona and California allow the medical use of cannabis.
Colorado’s medical marijuana laws allow eight qualifying conditions, including cancer, glaucoma, HIV/AIDS, muscle spasms, seizures and severe pain.
Other states conditions lists vary but include drugs for Alzheimer’s, multiple sclerosis, PTSD and migraines.
A high-CBD concentrated strain of cannabis, Charlotte’s Web, is named after Charlotte Figi, a 6-year-old Dravet patient, who suffered hundreds of seizures each week before she began taking daily doses of the oil.
Charlotte was immobile, on a feeding tube and under do not resuscitate order before treatment began. Since she began treatment, the frequency and severity of seizures have subsided and she has shown dramatic physical and cognitive improvement.
Media coverage of the girl’s story and progress led major shifts in public opinion about marijuana. Mrs. Bingham hopes Jacob and other children continue to change perceptions of medicinal marijuana in Texas.
The legal aspect of their situation is problematic, Mrs. Bingham said. She knows the drug can help their son but the Binghams would face a felony and Child Protective Services removing both children if the drug is found in Jacob’s system.
The Bingham’s are hopeful one of the bills becomes law and that it allows parents with suffering children to access drugs from other states while Texas sets up its dispensary system.
But Jacob can’t wait too long, they said.
Jacob has been on a ventilator. His seizures have caused injuries. Some days he can walk with Jarod’s help. Some days he’s wheelchair bound.
Mrs. Bingham refuses to put Jacob on a do-not-resuscitate list, though doctors have urged her to, in case of a major seizure. She sees too much life in her child to do that, she said.
She believes the medicine will turn Jacob’s prognosis around. She believes it would improve his quality of life by returning his physical and cognitive abilities.
Mrs. Bingham believes it could move his mind and happiness beyond the joy of finding a fork.
