Lisa and Laurence Cole were ecstatic when voters passed the medical marijuana law in 2012.
The young Leicester couple had heard the remarkable story about 5-year-old Charlotte Figi, who was having 300 grand mal seizures a week before her family moved to Colorado, where she was successfully treated with a strain of marijuana that has no psychoactivity.
According to reports, a twice-daily dose of cannabis oil in her food reduced the number of seizures to two to three a month. The girl, who previously experienced poor quality of life, is now thriving.
The Coles are hopeful that once the state’s medical marijuana operation is up and running, the life of their 5-year-old daughter, Madison, who has dozens of seizures each day, will also greatly improve. Since she was 16 months old, the parents have tried 11 different pharmaceutical options — some with significant side effects — as well as a ketogenic high-fat, low-carbohydrate diet that depresses seizure activity. None has proven successful.
Their daughter is developmentally delayed and nonverbal. And the uncontrollable seizures, Mrs. Cole said, have put Madison at a higher risk of death.
“The thing is, if we can get all the seizure activity under control the other things will come along. It might be at a slower pace, but that’s fine,” she said. “We just want to give her the opportunity to have the best quality of life as possible.”
Medical marijuana dispensaries were originally scheduled to open this summer. Now, it could be November or early next year before they are in operation.
The delay in opening dispensaries, and the state’s recent approval of only one in Worcester County, have left the Coles frustrated. They will have to travel nearly an hour each way to the dispensary approved in Milford, perhaps longer depending on traffic, or to one approved in Ayer in neighboring Middlesex County.
“I’m shocked how much time has gone by and we still don’t have access to something that could change her life dramatically,” said Mrs. Cole, a stay-at-home mother to Madison, her twin sister, Kelsie, and her 2-year-old sister Avery. “And I was very disappointed when I heard Milford will have the only dispensary in Worcester County, because not only is the ride going to be challenging, because on longer car rides my daughter tends to have seizures. I may be forced to pull over a few times to tend to her.”
Michael Dundas, spokesman for Milford Medicinals, said the group plans to offer at least one and probably two of the types of marijuana — rich in cannabidiol, or CBD, and low in tetrahydrocannabinol, or THC, the component that’s psychoactive — used to treat children who have seizures. He said the company is also fine-tuning its plan to provide home delivery service to patients who don’t have easy access to a dispensary.
Good Chemistry, a Colorado-based group that applied to operate a dispensary at 9 Harrison St. in Worcester, was turned down by the state because it misrepresented its local support. It had initially received provisional approval.
Karen van Unen, executive director of the state’s medical marijuana program, has said 97 percent of the state’s population will live within 30 miles of a dispensary. However, many residents in Worcester County, such as the Coles of Leicester, are farther than 30 miles from an approved dispensary location.
Matthew J. Allen, executive director of Massachusetts Patient Advocacy Alliance, which drafted the medical marijuana initiative, said the absence of a dispensary in Worcester leaves a gap in service for patients.
“I think certainly some trips would be up to 45 minutes each way or more. That does not represent ease of access for patients,” he said. “The lack of dispensaries in many areas of the state, including Worcester, will be a big barrier for patient access. And it points to the need for the caregiver system to be fixed.”
Under the medical marijuana law, patients with certificates from doctors are allowed to grow up to a 60-day supply or have a designated caregiver cultivate it for them. Caregivers are only allowed to provide medical marijuana for one patient.
Mr. Allen said the intent when the ballot initiative was written was for this to be a viable system during the time patients are waiting for dispensaries to open. He said it’s not viable cost-wise for a caregiver to grow for one patient. Rhode Island and Maine, he said, allow caregivers to cultivate for up to five patients.
“Most of the patients I’ve spoken to continue to go to the black market because the caregiver system is not viable with the 1-to-1 ratio,” he said. “There are just more patients in the state than there are caregivers.”
DPH spokeswoman Anne Roach said in addition to the 11 approved dispensaries, the application process for five applicants the department has identified as eligible to apply for dispensaries in counties that currently do not have a dispensary will begin July 9, with selections in October. The law allows the state to increase the number of dispensaries next year if the number approved this year is insufficient to meet patient needs.
“We plan to launch another statewide application process in 2015 to meet additional patient access needs. Applicants could apply for Worcester County during this round,” she said.
Contact Elaine Thompson at [email protected]
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