The Medical Marijuana Mess – A Family Trying To Help Their Daughter’s Epilepsy

A family discusses how difficult it has been to gain access to medical marijuana, which has helped their daughter’s epilepsy

Patrick and Beth Collins share how they tried to manage their daughter’s epilepsy symptoms with conventional drugs before they moved on to medical marijuana.

Beth Collins of Fairfax, one of two Northern Virginia mothers who have moved to Colorado to obtain medical marijuana oil for her daughter with epilepsy, is continuing the effort by mothers across the country to make the oil available for the thousands of families with children who have multiple seizures every day. After being featured in an article in The Post in April, Collins reached out to the Office of National Drug Control Policy to lobby for a shift in the federal scheduling of marijuana from its current classification of “no accepted medical use.” On Monday she, her husband Patrick Collins and Shannon Moore of Frederick, who successfully advocated for medical marijuana in Maryland, had a conference call with high-level officials with the Food and Drug Administration, the National Institute on Drug Abuse, and the ONDCP.

Collins was one of a group of parents of children with epilepsy who last month sent intensely personal, very moving letters pleading with Attorney General Eric Holder to consider reclassifying marijuana. All of those letters are posted in the document viewer below. There are photos, before-and-after EEG readings, and a lot of children in dire need of quick help from the government’s vast bureauracy. It is important, difficult reading.

In addition, Collins is submitting testimony for a House subcommittee meeting on Friday which is called, “Mixed Signals: the Administration’s Policy on Marijuana, Part Four – the Health Effects and Science.” Rep. Gerald Connolly (D) of Fairfax is the ranking Democrat on the government operations subcommittee, and he plans to call for swift action to reclassify marijuana out of Schedule I (where it is joined by heroin and LSD) to “allow for legitimate medicinal uses and promote rigorous scientific analysis.”

Elsewhere in Congress, Collins also spoke last week with staff members for Virginia senators Mark Warner and Tim Kaine, and another Virginia congressman, Rep. Morgan Griffith, in April introduced a bill which would reclassify marijuana to Schedule II. And on Tuesday, Griffith was one of 29 House members who sent a letter to the Secretary of Health and Human Services asking that the process for enabling scientists to do medical research on marijuana be less burdensome.

Also this week, the British company which has begun FDA-approved testing of its cannabidiol-based product Epidiolex on children with epilepsy issued preliminary findings after 12 weeks and found “a high proportion [of the children] show a reduction in seizure frequency of greater than 50 percent and a portion of these patients were reported to be seizure-free at the end of 12 weeks of treatment.”
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Among those scheduled to testify in the Congressional hearing Friday is Doug Throckmorton, a deputy director for the FDA, who also participated in the call with Collins on Monday. The FDA and NIDA are the two agencies that would evaluate whether a controlled substance’s classification should be changed. At present, it is difficult for researchers to obtain permission for testing on a Schedule 1 drug and Connolly said 90 percent of the testing approved by NIDA is to examine the harmful effects of cannabis, not the helpful.

Collins said Throckmorton listened but did not indicate any particular willingness to change the government’s long-held position on marijuana. “We told our stories, gave him our position on rescheduling,” Collins said. She said Throckmorton said the FDA wants “systematic collection of data and formal study in clinical trials. He said they wanted to make it easier to do clinical trials with doctors and investigational new drug studies.”

But Throckmorton also told the group that using the entire cannabis plant is “very problematic,” Collins said. He raised the issue that there are “many components to the plant, and it’s difficult to maintain consistency” in developing extracts. And though cannabidiol, or CBD, is showing great success with epilepsy patients, others such as Collins’ daughter require a different extract, called THCa, which uses the THC ingredient typically removed from CBD oils, though in a way that doesn’t get the user high. Cancer patients also want a THC-based version of cannabis oil. “I did not feel they support rescheduling the whole plant,” Collins said of the FDA.

A spokesman for the ONDCP confirmed the conference call, but could not discuss the contents of the conversations.

Collins said the process of waiting for FDA and NIDA review, and then review by the Drug Enforcement Administration, “is going to take time I don’t feel these children have.” Lydia Schaeffer, a 7-year-old girl whose mother pushed furiously in Wisconsin for approval of medical marijuana earlier this year, died last month.”There’s such a disconnect between state law and federal law,” Collins said. “How long are we going on like that?” She said there had already been thousands of research studies done on marijuana, and questioned the need for more.

Collins pointed out that though she has seen great results with cannabis oil after moving from Fairfax to Colorado Springs in December, she and her daughter aren’t thrilled to be living apart from the other half of their family, emotionally or financially. “I don’t know how much longer we can keep this up,” Collins said. “My daughter has to decide between being healthy and being happy. She doesn’t want to be here.”

Collins and the other mothers and fathers have formed a group, Parents Coalition for Rescheduling Medical Cannabis, and are working with Americans for Safe Access and the Epilepsy Foundation to find more pressure points. They are hoping to meet with and convince Attorney General Holder to reschedule marijuana, which the attorney general has the authority to do without the layers of bureaucratic hurdles. “We’re building momentum,” Collins said, “but it needs to happen quickly.”