Mom says epileptic girl, 4, desperately needs medical marijuana but not eligible under Louisiana's new law _lowres

Photo provided by Abby Conques of Meauxtography -- Ella Grace Hall

Four-year-old Ella Grace Hall needs six types of medicine a day to control seizures that her mother says make her mean “like a pit bull” and rob her of a carefree childhood.

It’s grown bad enough that Michele Hall plans to split her family apart and move with Ella Grace from her longtime Vernon Parish home to Colorado, where she believes her daughter can get some relief by taking cannabidiol, one of the compounds in marijuana that people take in oil form.

She won’t be able to get the drug here. While the Louisiana Legislature this year legalized medical marijuana, the measure adopted by lawmakers anointed medical winners and losers.

The narrowly tailored bill will allow people to receive prescriptions for medical marijuana only if they are dealing with specific ailments: cancer patients on chemotherapy, people who suffer from glaucoma or those who live with spastic quadriplegia, a type of cerebral palsy. Families dealing with severe epilepsy, like the Halls, or those with HIV or other debilitating diseases won’t be eligible.

Some, such as Hall, say the legislation doesn’t go far enough. But others, like the Louisiana Psychiatric Medical Association, believe that even the limited bill was premature, arguing there is too little research that shows the benefits patients receive from the drug.

State Sen. Fred Mills, R-New Iberia, the bill’s sponsor and a pharmacist, said the tight restrictions were the only way he could get the proposal through the Louisiana Legislature. He noted that there is the expectation to eventually expand the law, with a provision for the Louisiana State Board of Medical Examiners to petition the House and Senate Health committees 60 days before each legislative session to update the list of eligible medical conditions.

For Hall, waiting a legislative session or two until people suffering from severe epilepsy can access medical marijuana is too long. She’s already talking to doctors in Colorado about bringing her little girl there, discussing possible treatment plans.

“She could fall apart today,” Hall said.

Wait for implementation

Given the elaborate regulatory structure that Louisiana will impose on medical marijuana, the drug won’t be available anytime soon. The law, which was signed by Gov. Bobby Jindal last month, provides more than a year for various agencies just to develop the framework for how medical marijuana will be grown, dispensed and prescribed.

Louisiana has technically had legal medical marijuana since the early 1990s, but there was never a plan in place to grow and distribute the drug. With this new law, the State Board of Medical Examiners will come up with regulations for physicians to prescribe marijuana; the Louisiana Board of Pharmacy has to have rules in place for dispensing it; and the Department of Agriculture and Forestry will decide on a facility — possibly within one or more of the state’s universities — to grow it.

Cecilia Mouton, the doctor who is the executive director of the State Board of Medical Examiners, said the board will later this month review the legislation and get input from its general counsel and staff.

The Epilepsy Foundation of Louisiana called the bill a step in the right direction but also said it plans to continue fighting for “the rights of patients living with seizures and epilepsy to access physician-directed care, including medical marijuana.”

Those with ties to epilepsy are not the only ones who say they will continue to push until medical marijuana becomes more widely available.

MarkAlain Dery, a Tulane University School of Medicine professor and doctor who works with HIV/AIDS patients, said he will continue to advocate for HIV/AIDS to be among the conditions that qualify for use of medical marijuana.

He said medical marijuana can help his patients with their nausea, pain, discomfort and appetite problems.

“I recognize that these are baby steps to eventually getting to where we would like to be able to get medical marijuana available for all people,” Dery said.

However, Dery also said he is frustrated with the lack of research that scientists have been able to perform about the effects of medical marijuana. He said it’s well-documented that medical marijuana can help neurological disorders and seizures and that it also is somewhat documented in alleviating chronic pain.

But Dery said there is much research to be done on how medical marijuana could help other conditions like mental illness, depression, attention deficit disorder and sleep disorders.

The research, or lack thereof, about marijuana has led to much of the controversy. A new study published in the Journal of the American Medical Association reports that there is “moderate quality evidence” to support medical marijuana’s effectiveness in treating chronic pain and spasticity and “low quality evidence” for the treatment’s effectiveness in addressing nausea and vomiting from chemotherapy, weight gain in HIV infections, sleep disorders and Tourette syndrome.

Much of the success of medical marijuana is anecdotal and has inspired people like Hall to flee to Colorado, where medical marijuana has been legal, at varying levels, for 15 years. But not everyone who has gone to Colorado in hopes of miraculous cures has found a happy ending.

A 2013 study of one well-known form of medical marijuana called Charlotte’s Web showed great results, with all 11 patients reporting a reduction in the frequency of weekly seizures. Five of the 11 children were seizure-free after taking Charlotte’s Web for three months.

But a 2014 study of epilepsy patients at Children’s Hospital Colorado, many of whom moved to Colorado for access to medical marijuana, found far less encouraging results. Fewer than half of the 58 patients studied reported any improvement in seizures from taking oral cannabis extracts.

“Although there are anecdotal reports suggesting potential benefit, no definitive studies demonstrate clear efficacy for the use of (oral cannabis extracts) or its derivatives for epilepsy,” reads the study that was presented to the American Epilepsy Society.

Those advocating both for and against medical marijuana have called for more research. The Obama administration removed some bureaucratic obstacles in late June, which could spur some more research. However, a bill to reclassify marijuana that would have made it easier to research its medical effectiveness died this week in the House of Representatives.

The medical marijuana most patients seek is different from the drug that people buy on the street. The plant grown for medical purposes does not get people stoned because it has a large amount of CBD — the component believed to be an effective medical treatment — and a low concentration of tetrahydrocannabinol, or THC, which is what gets recreational users high.

Rather than smoking medical marijuana, users take it in an oil form. Mills, the local bill’s sponsor, said he anticipates that most people would orally take the marijuana, likely as a drop or spray “or any form other than the raw inhaled plant.”

Critics skeptical

The paucity of research gives some critics pause about Louisiana’s entry into this still-developing medical arena. In a letter to the Legislature, Louisiana Psychiatric Medical Association President Dr. Dean Robinson said the studies that have been performed are not scientifically sound.

Robinson argued the pools of test subjects are small and many of the people tested are already regular users of marijuana.

Robinson wrote: “There is a high abuse potential of marijuana. 4.3 million Americans have symptoms of a cannabis use disorder — more than any other illicit drug. There is extremely high vulnerability for youth where the use and abuse of marijuana interferes with role accomplishments, interferes with neurologic development and induces changes that can be permanent.”

Stephanie Haynes, who works with Citizens for 1 Greater New Orleans and the Greater New Orleans Drug Demand Reduction Coalition, also supports increased research about the effects of marijuana. But she says legalizing what she calls “medical pot” will give false hope to people who are sick.

Haynes and the LPMA also have taken issue with the bill’s wording, which says Louisiana doctors can prescribe medical marijuana.

However, marijuana is still considered a Schedule I narcotic, which doctors cannot prescribe without breaking federal law.

Some states have found a way around this by allowing physicians to recommend medical marijuana rather than prescribe it.

Families hopeful

Hall admits she was skeptical when she first heard about marijuana being used for medicinal purposes. She changed her mind after reading about how well it has worked for people with conditions like the one Ella Grace has.

She plans to move to Colorado by late October unless she can meet with Gov. Jindal before then and persuade him to change the law to immediately include epilepsy. She said she has been calling his office, begging for 10 minutes with the governor.

“If he is in Ohio, I will fly to Ohio,” Hall said. “I will ride in a car with him. I will fix him lunch.”

Another mother, Terry Crews, believes medical marijuana could offer her 27-year-old daughter, Kelli, a better quality of life. Kelli, who lives with her parents in Leesville, has a rare genetic disorder called Kleefstra syndrome and started taking seizure medications when she was 7 months old.

Unlike Hall, Crews said she does not have the option of moving to a state like Colorado. Her daughter has 24/7 in-home care, which Crews would lose if she moved to another state.

Kelli has had surgery after surgery and tried more medications than Crews can count. They often leave her daughter, who can no longer walk or speak, lifeless and lethargic.

“Seizure meds, long story short, can just be a total nightmare,” Crews said, noting that her daughter’s bones have become brittle and she has had surgery on both hips. “She can’t walk at all. She has no hip bones on either side. And that was from seizure meds.”

Crews said access to CBD oil could stop her daughter’s seizures, stop the side effects from the pharmaceutical drugs she’s taking and possibly prevent her from needing a future brain surgery.

If Louisiana ever allows the oil for seizure disorders, she envisions a day when her daughter is no longer constantly tired from the medicine’s side effects and still suffering from seizures. Instead, Crews wants to see her daughter laugh and cut up the way she used to. She believes medical marijuana is the key.

“I would like to see my girl back,” she said.