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"The mission of the Epilepsy Foundation is to stop seizures and SUDEP, find a cure and overcome the challenges created by epilepsys through efforts including education, advocacy and research to accelerate ideas into therapies."

 

At the Speak Up Speak Out National conference, a staff person from the Colorado affiliate got up and announced that families are being discouraged from moving to Colorado at this point. Apparently so many families have moved to Colorado for the oil that it is out of production at this time. They have long waiting lists for the oil. The Colorado affiliate also warned that so many people have moved there that Colorado is considering new residency rules for people who move there for the medication.  We will keep everyone updated as we receive more information.

Northern Virginia Families Move to Colorado to Get Medical Marijuana for Children With Epilepsy

(Joanna B Pinneo/ For The Washington Post ) - Jennifer Collins, 14, and her mother, Beth, moved to Colorado Springs in December 2013 to see if medical marijuana would help Jennifer’s epilepsy. Beth Collins measures and fills a syringe with Jennifer’s medicine, a mixture of THCA and olive oil that Jennifer takes three times a day.

For the parents of children with intractable epilepsy, the stream of constant seizures, emergency-room visits and powerful medications can become a demoralizing blur. Beth Collins of Fairfax County said her teenage daughter suffered as many as 300 epileptic seizures per day.

“There were days when I just laid in bed with her and prayed,” Collins said, “and watched her because I wasn’t sure what would happen.”

Now, the seizures have all but stopped. Each day, Collins gives her daughter Jennifer a dose of medical marijuana oil from a syringe, as any parent might administer liquid medicine to a child.

But Collins can’t offer the cannabis extract from her kitchen in Fairfax, where she raised Jennifer for 14 years. Instead, she does so in a small two-bedroom apartment in Colorado Springs. Collins is one of a pair of Northern Virginia mothers and daughters who, after trying various combinations of drugs and treatments for their children, have packed up and moved recently to Colorado to try medical marijuana oil to battle the children’s debilitating seizures. Because Virginia law does not allow for the sale of medical marijuana or its extracts, the families have elected to move 1,700 miles so their children can have a chance at a normal life.

“I feel a lot better,” Jennifer said of the treatment, which is scientifically untested. “I can focus more, I’m doing better on tests in school. My memory’s improved a lot.” Her seizures are “not completely gone,” but her mother said that “we’ve had days where I’ve seen very few, maybe one or two. That’s a major decrease.”

Former South Riding resident Dara Lightle has watched her 9-year-old­ daughter move from not only seizures, but also “unbelievable anger, kicking and screaming at me” to reading for the first time and discarding all other drugs. “We’re grateful to be here” in Colorado, Lightle said, although she considers herself and daughter “medical refugees.”

The Northern Virginia families’ efforts are part of a growing national migration toward the seemingly life-changing marijuana oil. More than 100 families have moved to Colorado Springs in recent months to obtain the oil, and mothers have launched lobbying efforts in many states to legalize medical marijuana for conditions such as epilepsy.

Meanwhile, other Virginia families watch with envy, unable to uproot their families but hopeful that the Old Dominion will consider a change in its marijuana laws, at least for this oil — which has marijuana’s intoxicating ingredient, THC, removed — and this condition. Virginia has long been reluctant to consider legalizing medical marijuana, and previous pushes for legalization in the General Assembly have quickly died.

But now supporters have a new, important ally: recently elected Lt. Gov. Ralph Northam (D), a pediatric neurologist who has treated children with epilepsy for years. He said in an interview that he is going to help craft legislation next year that would allow certain Virginia residents to use medical marijuana for epilepsy, although he acknowledges that scientific research has not caught up with the glowing anecdotal research emerging from Colorado, where medical marijuana has been legal since 2000.

Northam said that a British company, GW Pharmaceuticals, has been approved for a study in the United States using a cannabis extract for patients with Dravet syndrome, a particularly severe form of epilepsy.

“The bottom line is to do something, through the studies or legislatively, to help these families,” the lieutenant governor said. “If we go before the legislature and have these families come in and testify, I really think we could get that passed and get help for these families. I’m going to do a bit more research and we’ll put the language together” for next year’s legislative session.

The Virginia General Assembly may be a tough sell. Del. Robert G. Marshall (R-Prince William), who has pushed a bill repealing Virginia’s already restrictive 1979 law permitting possession of marijuana for medical purposes, said those who support cannabis for epilepsy should go through the established scientific testing process required for other drugs.

“They are taking homemade remedies and asking the legislature to bypass those” testing procedures, he said. “It may curtail seizures in the short term in kids, but to do these experiments on kids, in the absence of science, I question that. Go to the FDA and go through the regular process.”

Parents who have endured years of epilepsy’s consequences — particularly those who have children with Dravet syndrome, which can be fatal at any time — feel that they don’t have time to wait for the FDA’s process. A lack of assistance from the federal government has complicated matters for these families. The Food and Drug Administration, which must approve any legal use of medical marijuana, says it “requires carefully conducted studies in large numbers of patients (hundreds to thousands) to accurately assess the benefits and risks of a potential medication.”

It recently gave approval to GW Pharmaceuticals for testing of the cannabis extract-based drug Epidiolex for both Dravet and Lennox-Gastaut syndromes, two severe forms of epilepsy, and the company hopes to work with doctors and patients to perform clinical trials in the United States this year.

Officials with the FDA, the Drug Enforcement Administration, the National Institute on Drug Abuse, and the Office of National Drug Control Policy all declined to discuss the government’s position on marijuana oil or relaxing restrictions on marijuana for research purposes.

But even in the epilepsy community, there is a debate about whether using the extract is appropriate. In February, the Epilepsy Foundation released a position paper calling for an end to DEA restrictions on clinical trials and research and asking the agency to allow greater access to medical marijuana oil for the 1 million Americans who have uncontrolled epileptic seizures.

“People with uncontrolled seizures live with the continual risk of serious injuries and loss of life,” Epilepsy Foundation leaders Philip M. Gattone and Warren Lammert wrote. “If an epilepsy patient and their doctor feel that marijuana is the best treatment option then they need to have safe, legal access to medical marijuana and they need that access now.”

A week after the Epilepsy Foundation released the statement, the American Epilepsy Society issued a contrasting view cautioning that “we must remember that these are only anecdotal reports, and robust scientific evidence for the use of marijuana is lacking . . . use of marijuana for epilepsy may not be advisable due to this lack of information on safety and efficacy.”

Experts, state legislatures and the federal government continue to wrangle with the issue, but parents say they are left with a single, desperate option: Move to Colorado. In many cases, they have connected with Realm of Caring, a group started by a family who developed the “Charlotte’s Web” low-THC plant and the oil, which is rich in cannabidiol, or CBD, according to Heather Barnes-Jackson, the group’s executive director. The plant is named for Charlotte Figi, who began taking the CBD oil (also called “Realm Oil”) at 5 as a last resort and saw a drastic reduction in her violent grand mal seizures. Research has showed that CBD has anti-inflammatory, neuro-protectant and antioxidant properties through its interactions with the brain and the body, Barnes-Jackson said.

In Colorado Springs, 206 people are using the Charlotte’s Web extract, Barnes-Jackson said. They include her son, who has “catastrophic” epilepsy.

And now the Virginia families are joining a growing group of families setting in Colorado. Indeed, the parents came from nearly identical backgrounds: dubious of medical marijuana, frustrated by the ineffectiveness of FDA-approved drugs and feeling that they had no other options.

“My child is not going to smoke pot,” Lightle said she remembers thinking. But she also endured such stress from her daughter’s deterioration that she got panic attacks. “I’m a mother, realizing I couldn’t protect my child,” she said. “It really shows how hard this is on a parent, too.”

Lightle’s daughter Madeline began having seizures at 6, including during 80 percent of her sleep. Strict diets worked for a time, then became ineffective, as did each new medication. Her vision got worse because of the seizure medication, doctors told her. Doctors even suggested a hemispherectomy, in which a large part of the brain is removed.

So Dara and Madeline Lightle left South Riding in October.

“By the grace of God,” Lightle said, “we were able to wean her off all pharmaceuticals by the end of December. She’s had three seizures in the past 13 weeks. Before, she would have multiple seizures, five in a day.” On Facebook, she posted before-and-after electroencephalograms of Madeline that are drastically different.

But moving from home has taken its toll on Jennifer Collins, who was an eighth-grader at Robinson Secondary School. She wrote a letter to Virginia legislators that her mother recently delivered: “My family is totally split up and it’s killing me,” she wrote. She asked the legislators to imagine “your little girl going off to Colorado with her mom because she has no other medical options but you have to stay here so you can afford all of it . . . wouldn’t that be hard on your family?”

Meanwhile, in Ashburn, Cady Coe is preparing to move her three children to Fort Collins, Colo., this summer. Her youngest, 9-year-old Charlie, has tried 17 types of medications and numerous diets.

“He has not had a day seizure-free since he was 3,” she said. “He weighed more at age 3 than at age 9.”

But not everyone can move. Lisa Smith, a Northern Virginia native now living on the Northern Neck with her husband and three children, said her 13-year-old daughter, Haley, has Dravet syndrome and suffers 100 seizures per week. As a toddler, Haley was treated by Northam, and the pair reconnected when Northam was on the campaign trail.

Lisa Smith said Northam was encouraging when she spoke to him about medical marijuana, and now she is lobbying the General Assembly as part of Virginia Parents for Medical Marijuana. But moving to Colorado is not an option.

“It’s not really the time you pick up and go,” Smith said. “I have a whole support system here, a whole lot of medical professionals she’s involved with.” Relocating is “very drastic. We would if we had to. If it’s never going to happen in Virginia, we would move.”

Collins also has been involved in lobbying, and she returned to Virginia last month to participate in an epilepsy walk in the District with like-minded parents. She is not thrilled about staying in Colorado indefinitely. She wants medical marijuana in Virginia.

“I want to do it legally,” she said. “I shouldn’t have to break the law to give medicine to my child. And it shouldn’t be dictated by my Zip code.”