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State Therapeutic Cannabis Advisory Council lacks citizen representative; the appointee did not join meetings

Last modified: 9/25/2015 5:38:52 PM
Chris Lopez was leaning against a deck off her Canterbury home four years ago when the railing gave way. She fell 15 feet, broke her back and became paralyzed from the waist down.

The 49-year-old has found cannabis helps ease her pain, and she is anxiously awaiting for a proposed medical marijuana dispensary to open in Merrimack.

“Without relief from cannabis, it makes my life miserable,” said Lopez, who currently purchases marijuana to manage her symptoms. “It means I continue to be a criminal in order to receive my medicine, or stay in pain until it opens.”

It’s been two years since New Hampshire became the 19th state to legalize the use of medical marijuana, and officials now say the first cannabis dispensaries will be up and running in early 2016.

But Lopez is skeptical, and frustrated the wait has been so long.

While she, and other patients, come to Concord to raise those kinds of concerns at legislative hearings, patients don’t have a formal voice on a key state advisory council that is overseeing implementation of the medical marijuana law.

“I’m baffled,” Lopez said. “If there’s no voice for the patients, then what voices are going to be heard?”

The state’s 16-member Therapeutic Cannabis Advisory Council is supposed to help develop rules around the use of medical marijuana, and one of the group’s primary tasks is to collect information from patients and gauge their satisfaction with the program.

But the one council member who qualifies to use medical marijuana, and is supposed to represent the state’s patient community on the advisory board, hasn’t come to a single meeting since Gov. Maggie Hassan named her to the oversight group in 2013, according to meeting minutes.

The absence means that no one serving on the advisory council – set to meet this afternoon for the first time since January – speaks on behalf of the community of patients who qualify to use medical marijuana.

Despite inquiries from patient advocates and members of the council, Hassan’s office hasn’t replaced the representative.

“It’s an important role that is just not being filled right now,” said Dennis Acton, CEO of the Patient Caregiver Alliance, a support group focused on therapeutic cannabis. “Ultimately the discussion drifts away from a focus on patients, it becomes more of the regulation. You tend to lose track of what this is all about, which is helping sick people. There’s no one there to push that back to the forefront.”

The council’s patient representative, Concord resident Lisa Kilar, said she decided to step down from the role about a year ago, after she was hospitalized and couldn’t attend several meetings.

“A spokesperson for patients needs to be at the meetings all the time,” Kilar said. “With my work schedule, I knew I couldn’t be totally dedicated to the council. The patient needs to be totally dedicated to it.”

It’s not clear whether Kilar formally communicated her intention to step down from the council to the governor’s office, which is responsible for a large volume of appointments across state government. Replacing a member requires a formal process.

Hassan’s spokesman, William Hinkle, said the office shares the council’s attendance concerns.

“We’ve reached out to the patient and are going to continue to look into the matter and work with the council to do what we can, whether it be a new appointee or an alternate,” he said.

Concerns about attendance surfaced at a meeting in mid-2014, when Chairman Rep. James MacKay told the council he had asked Hassan’s office about Kilar’s status, “but had not received a response about any new appointments,” according to minutes from the June meeting.

“The best we can do is tell the governor’s office the person isn’t showing up,” MacKay, a Concord Democrat, said recently. “As far as I know, that’s been conveyed.”

It will likely come up again at the meeting today.

Richard Vincent, a Loudon resident who runs a support group in Concord for people with multiple sclerosis and plans to get a card authorizing his use of medical marijuana, says he has volunteered to be the council’s patient representative and will again put forward his name today.

And Matt Simon, New England political director for the Marijuana Policy Project, plans to ask whether a new patient representative can be appointed to the council.

“We have asked repeatedly can this person be replaced,” Simon said. “Patients are concerned about all of this. They want to be able to apply for this program, they want to be able to get ID cards to protect them from arrest, they want to know how much products are going to cost, whether or not they can afford them.”

The council

The Therapeutic Cannabis Advisory Council was created at the same time the state opted to legalize medical marijuana in 2013. The council membership consists of lawmakers, state officials, representatives from the health care field, members of the public and others. It is supposed to help the state Department of Health and Human Services develop rules governing therapeutic cannabis and gather information, including patient satisfaction, the ability of patients to get timely access to medical marijuana, and the effectiveness of the program.

After five years, the council is required to issue a formal opinion on whether the medical marijuana program should be continued or repealed.

The group will meet in Concord at 1 p.m. and has a lot of ground to cover. Since January, when the council last met, the state selected three organizations to grow medical marijuana and run dispensaries in four regions across New Hampshire. HHS has held several public information sessions in cities and towns – including Manchester, Plymouth and Lebanon – set to host the dispensaries and grow sites, and the state is setting up a way for patients to pre-apply for the identification cards they need to access therapeutic cannabis.

Under the existing statute, terminal patients or the seriously ill are allowed to use medical marijuana to ease their pain and other symptoms. Cancer, glaucoma, ALS, muscular dystrophy and traumatic brain injury, among others, are all qualifying conditions. And the Legislature opted to expand the list this year, by including epilepsy, lupus and Parkinson’s disease.

Tuftonboro police Chief Andrew Shagoury, who represents the New Hampshire Association of Chiefs of Police on the council, says the group should be meeting more often to talk about best practices, and education. He’s frustrated that several rule changes HHS recently proposed, related to oversight of dispensaries and patient/caregiver registries, never went before the council.

“We are supposed to be assisting with adopting and revising rules,” Shagoury said. “If I hadn’t said something, we wouldn’t be having this meeting.”

In the meantime, Acton said, patients are trying to get some answers, like when will ID cards be issued and will primary care doctors take part in the program.

But, he said, there is a sense of satisfaction that the process is moving forward and dispensaries are set to open this winter. “It’s finally starting to happen,” he said.

While Lopez’s spinal cord injury put her in a wheelchair and kept her from returning to work in the hospitality industry, she moved to Manchester and now answers phones and emails part-time for a nonprofit. Marijuana helps reduce the pain Lopez experiences during muscle spasms, she said.

“This is something that needs to happen for patients to get relief and a lifestyle where they can feel productive and good about themselves,” Lopez said. “We’ve waited too long.”



(Allie Morris can be reached at 369-3307 or at amorris@
cmonitor.com.)


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