Chloe Isaac of Westminster takes a pharmacopeia of medication every day. There's the liquid Xanax, and the Valium twice per diem. There's the three kinds of anticonvulsants and liquid Ativan for when she has a particularly bad day. She must get her blood tested once a week to ensure the risky blend of drugs is not damaging her liver, her kidneys or causing her to go blind.
Chloe is 23 months old.
According to her mother, Courtney Moser, Chloe suffers from Aicardi syndrome, a rare disorder that hijacks her nervous system with seizures as often as 200 times a day, even while she is sleeping. Moser and Chloe's father, Kevin Isaac, spoke with the Carroll County Times in March about how they hoped to access a medication that had reduced the number of seizures in other children with similar disorder and reduced their dependency on addictive medications: medical marijuana
At that time, however, the push for a legal medical marijuana system in Maryland seemed to have stalled. Maryland's first medical marijuana law had been passed in 2013, but it restricted the program to academic medical centers, such as Johns Hopkins.
Even before the ink was dry on that law, those academic medical centers were indicating they did not feel comfortable participating, according to Sharon Bloom, acting executive director of the Natalie M. LaPrade Medical Marijuana Commission, the group appointed by the governor to develop the program's regulations.
Moser and Isaac began looking at a possible relocation to Colorado, where marijuana is available both as a medicine and for recreational use.
Over the spring and summer however, the couple decided against uprooting their family from Carroll County and Moser said she is hopeful that something will change with regard to the state's medical marijuana regulations.
A New Hope
Things have now changed in Maryland, following the passage of House Bill 881 and Senate Bill 923 in the 2014 legislative session; the bills were signed into law on April 14.
According to Bloom, the new legislation shifted the focus of Maryland's medical marijuana program away from academic medical centers and onto individual physicians. Since the law was passed in April, the state's Medical Marijuana Commission has been working to develop the regulations based on the law that will allow the program to begin operating and getting marijuana into the hands of patients like Chloe.
"New legislation was introduced that would change the approach ... to allow physicians certified by the commission to recommend medical marijuana to patients that fit described conditions that are in the legislation," Bloom said. "The commission would also license 15 growers and also [an as yet undetermined number of] dispensaries. That's where we stand now."
The academic medical centers are still covered in the law and may participate if they choose to do so, according to Bloom, but the heart of the program will now be the patient-doctor relationship. Doctors will apply to the commission for approval to recommend marijuana for the treatment of one of eight conditions or illnesses specified in the regulations crafted by the commission: Cachexia, anorexia, wasting syndrome, severe pain, severe nausea, seizures or persistent muscle spasms, glaucoma, Post Traumatic Stress Disorder and "any other disease, condition, or treatment thereof which may be approved by the commission."
Patients and their caregivers — family members or other people approved to assist patients in acquiring and ingesting their marijuana — will carry identification cards, as will the employees of the businesses that will grow and dispense medical marijuana.
That's the way the system is supposed to work, at least according to the draft regulations the commission posted on its website Aug. 14 in order to solicit public comment.
But according to some of the legislators who sponsored the 2014 law, the regulations as currently presented by the commission are not workable in practice and there is doubt the commission will have a final set of regulations ready by the Sept. 15 deadline in the law.
Del. Cheryl Glenn, D-District 45, not only sponsored the 2014 medical marijuana legislation, the Natalie M. LaPrade Medical Marijuana Commission is named after her late mother, who lost her battle with cancer. After reading the draft regulations, Glenn attended an Aug. 26 meeting of the commission to testify about what she saw as some major problems with the draft, and the work of the commission.
"I was very concerned to say the least. I don't see as much progress as I expected," Glenn said. "Understanding what our timeline is for patients being able to actually access medical marijuana ... . I felt we were being very conservative as legislators. We were hoping at least in 18 months, we would be able to see the first patient actually be able to access medical marijuana."
Glenn said she is now no longer certain when, or even if patients will be able to access medical marijuana.
Many aspects of the draft regulations are too vague or too burdensome, Glenn said, and could prevent patients from receiving the care they need. Those aspects, she said, include complicated rules for patients, the exclusion of persons with a history of substance abuse — even marijuana — and a restriction on the operation of a dispensary within 500 feet of any playground, day care, church or school. Those restrictions, Glenn said, could make it impossible for many patients to receive medical marijuana even once it is available.
In public testimony before the commission on Aug. 26, Glenn said she doubted her own mother, the commission's namesake, could have obtained marijuana under the rules as currently written.
Glenn also expressed concern that rules requiring physicians to complete training courses in marijuana before being approved by the commission could delay the implementation of the program, since no such training programs are available yet for physicians who might wish to enroll.
That's a concern Glenn shares with her colleague, Del. Dan Morhaim, D-District 11, another sponsor of the medical marijuana legislation and a physician. Morhaim testified before the commission on Aug. 26 that he believed the requirement for doctor training programs should be removed from the regulations for being overly burdensome.
Morhaim also raised what he feels is an issue that could kill the medical marijuana program before it even starts, the requirement that physicians write recommendations for patients that state how much marijuana they should take and how frequently, something he said comes very close to writing a prescription for marijuana.
"If you write a prescription for marijuana, it's against federal law and you will lose your license [to prescribe controlled substances]," Morhaim said. Other states with medical marijuana programs have had doctors write recommendations for the use of marijuana, stopping short of specifying dosage or frequency to avoid friction with federal authorities.
Most concerning to Morhaim, however, is that he believes the commission has not been transparent in its deliberations, nor has it been particularly open to public feedback.
According to Morhaim, the Aug. 26 meeting of the commission was the first of the six meetings held since the new medical marijuana legislation was passed where unscripted public comment was allowed. In all previous meetings, public comments had to be submitted in writing to the commission in advance of the meeting.
"They could have had public input earlier and should have," Morhaim said. "The purpose of the draft regulations is, in fact, to seek public comment."
In interviews, both Glenn and Morhaim stressed how much they appreciated the work of the commission and the individual commissioners, many of whom are volunteers, but nevertheless indicated their concern that patients might continue to suffer without changes to the draft regulations.
"I commend all of them for taking on the role to serve, but I am concerned that maybe there are some people that did not want to see the bill pass in the first place. I think those concerns have somehow found their way into the regulation," Glenn said. "We're not accepting that. The state legislators will not lay down to this ... if our commission can't get the job done, we have to take another look at the legislation."
A simple misunderstanding?
According to some members of the commission however, many of the more grave concerns raised by Morhaim and Glenn are simply not as significant as they might seem.
Eric Sterling is an attorney admitted to the U.S. Supreme Court and a member of the commission who said while it is true that writing a prescription for marijuana is illegal under federal law, he believes the changes in the way the U.S. Department of Justice has responded to medical marijuana programs in other states indicate that it's not the problem it might have been 10 years ago.
"The federal government has come a long way ... They have now issued statements to financial institutions that they will not be prosecuted under the money laundering statutes for accepting money from those growing and selling marijuana, even for recreation, not just medical," he said. "Let's be clear, everybody that is engaged in this is in violation of federal law ... saying, this piece is more illegal under federal law than that piece is illegal under federal law is not a particularly persuasive kind of argument."
Sterling and Bloom both said they understand Morhaim's concern about requiring physicians take training before recommending marijuana, but they believe there will be training courses available from third parties in the near future.
"We think that asking physicians to give us evidence of some kind, or say that they have been educated is important. Much of this has not been taught in medical schools," Sterling said. "We do think that either making a statement saying 'I have sufficient training,' or taking some kind of training ... is probably in the interest of protecting patient safety."
As for Morhaim's concerns that the commission should have allowed more unscripted public comment before Aug. 26, Sterling confirmed Morhaim's characterization of how the commission had been operating, but did not elaborate.
"Yes, that was the approach that the commission had taken, that was the course that the chair had laid out," Sterling said. "I cannot quarrel with his opinion about that. I mean ... I don't have more to say about that."
Bloom said all the letters from Morhaim and others, and the comments from the Aug. 26 meeting have not gone unheeded and the commission is working through them one by one. She said having allowed open comments prior to the release of the Aug. 14 draft regulations would have been counterproductive.
"Why didn't we have public, open hearings? Actually until there is something for everyone to read and look at, the meetings would have been all over the place," Bloom said. "I though the input from the public was excellent."
Bloom is generally optimistic and said that while the regulatory process is difficult and it might look opaque, she is confident that they commission will have a working product by Sept. 15.
"We are working on getting something out by that deadline, and will continue even past that deadline until we have the right product that is the best that we can produce," she said. She expects a revised draft set of regulations will be ready by the time the commission next meets in Annapolis on Sept. 9.
As to just how soon marijuana plants could be blooming in a green house near you, or when the first patient might take the first legal does of medical marijuana in the state, Bloom as agnostic. The regulatory process within the Department of Health and Mental Hygiene can take four to six months, according to the agency's website and then there are all the steps necessary to get the program up an running once the regulations are finalized.
"We have to give people enough time to complete the applications [for growing or dispensing]. Then we have to give the proper time to vet all the applications. Talking to other states, they said you need to give yourselves a lot of time," Bloom said. "Once the licenses are awarded to the growers, I don't know how long it will take them to get up and running to grow their first product."
Waiting and Hoping
The opportunity to get a first dose of legal marijuana cannot come soon enough for many potential patients, including Chloe. Moser said she has been told Chloe is at risk for Sudden Unexpected Death in Epilepsy, also known as SUDEP, a phenomenon that is the leading cause of death in people with uncontrolled epilepsy, according to the website of the Epilepsy Foundation. Every seizure Chloe suffers is loaded with anxiety for her parents, and the seizures are relentless.
"That's what we live with every day," Moser said. "I had a doctor tell me I should just move on and start having other children."
But giving up on Chloe is not something Moser is willing to do and giving up on their home and moving away is not something she is willing to do. She is not giving up, and so she will wait, and hope.
"I am definitely optimistic," Moser said.
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Reach staff writer Jon Kelvey at 410-857-3317 or email@example.com.