Two years ago, doctors found a brain tumor in Michelle Caminos’ 2-year-old son that persisted despite surgeries, radiation and chemo.

The Waterville higher-education consultant was desperate when she asked the neurosurgeon about cannabis. He told her it would be “almost irresponsible to not try it,” she said. She reached out to the Maine caregiver community and quickly found a nurse practitioner and a specialist, Dr. Dustin Sulak, with experience in pediatric cancer. Within six months, all evidence of the disease is gone, she said.

“Without the caregiver community, none of this would be possible, I don’t even know if my son would be here,” Caminos said.

New rules under consideration by the state Department of Health and Human Services would eliminate parts of the Maine medical marijuana program that made it possible for Caminos to seek treatment for her son, she said. The rules would eliminate telemedicine, reduce how many plants and patients caregivers can have, allow patient inspections and eliminate legal protections for caregivers.

They also would drive up the cost of her son’s medicine, she said. Without caregiver help, his medical bill would be $10,000 a month.

“These rules are discriminatory, Draconian and unnecessary,” she said. “They would have a chilling effect on access to life-saving medicine.”

Caminos was one of about three dozen medical marijuana caregivers, patients and community leaders who spoke against the rule changes during a public hearing before a Maine Center for Disease Control and Prevention panel at the Augusta Civic Center Wednesday morning. About 100 people attended the hearing, appauding as people stood up to share their short but often moving stories of how the medical marijuana program has helped them.

Susan Meehan talked about moving from Connecticut to Augusta in 2013 to use the state’s medical marijuana program to treat her daughter’s severe epilepsy. Robin Crawley called herself a “poster child” for medical marijuana as she described trading in doctor-prescribed opiates for cannabis to treat her chronic pain. For Shelby Oates, medical marijuana helped her aunt die with dignity.

Most of the people who spoke at the three-hour hearing said the rules would hurt both caregivers and their patients and damage the medical marijuana program, which is often hailed as one of the nation’s best. Some agreed that some rules need to be tightened, and that not every caregiver pays their full share of sales tax or abides by the state’s plant limits, but urged the state not to cripple an entire program because of a few bad actors.

The Maine Center for Disease Control and Prevention will review public comments, including written ones submitted before a June 26 deadline, and possibly tweak the proposal before sending it to Ricker Hamilton, acting commissioner of the Department of Health and Human Services, and Attorney General Janet Mills for approval. The department expects to act on the rules by the end of the year.

REACTION TO RULES

The department has not offered any reason for the rule changes, nor has it explained to caregivers or patients how officials there believe it will impact them. Some of the changes are merely updating the program rules to include new laws, like allowing caregivers to hire one worker, but others appear to signal dramatic changes to how the program will operate.

The new rules would ban caregivers from leasing cultivation space to other caregivers, limit the amount of marijuana they can sell to a patient to 2.5 ounces every 15 days, just like dispensaries, and make them report how many patients they treat annually, which some caregivers say would target those caregivers who get around an existing five-patient cap by repeatedly swapping out short-term patients.

The new rules also would require medical providers who certify patients to have a bona fide doctor-patient relationship, which could prohibit a doctor from certifying a patient over the phone or outside of a doctor’s office. While that may crack down on doctors or caregivers certifying at events or festivals, it could prove a real hardship for the homebound patients of nurse practitioner Pat Philbrook.

Since last fall, this 22-year nursing veteran has been traveling the state certifying and treating homebound patients for cannabis use. She told the state CDC panel that 75 percent of her patients had never had a medical marijuana certification until she visited them because they couldn’t afford it, couldn’t drive long distances or didn’t even have a car.

“I feel these proposed rules discriminate against patients who can’t drive, can’t drive long distances or don’t have the money,” she said. “They will increase the burdens on caregivers, costing them more financially to stay in business, and that will eventually be passed on to the patients that I treat all over the state.”

Caregiver Dawson Julia argued against the mandatory inspections of caregivers and patients included in the proposed rule change. Surprise inspections make it impossible to have a lawyer present, could disrupt the plant’s light cycle and harm the crop, and, if done without a proper suit or decontamination between inspections, can lead to cross contamination of crops, he said.

The speakers also shared their fears of being thrown in jail for failing to comply with even the smallest of these new rules, and recounted past encounters with law enforcement who treated them like drug traffickers – kicking in doors, pointing guns at their heads – for the failure to follow one state rule. The remedy for regulatory failure should be regulatory action, or a fine, not jail time, they argued.

“If you have a business that has four entirely non-violent people, never been criminals, and law enforcement comes to the tune of four officers, that’s substantial alarm,” Julia said. “This personally happened to my business, and it did damage to my business.”

Penelope Overton can be contacted at 791-6463 or at:

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