New York State is finally set to legalize a medical-marijuana program that will ease the suffering of patients who have waited more than 20 years for relief. But critics say that many more New Yorkers will be left suffering due to restrictive changes made to the legislation in the 11th hour by Gov. Andrew Cuomo—including the fact that it allows only non-smokable forms of the drug. In addition, several of the changes gave the governor and his executive branch extensive control over the program.
Cheers were heard at the Capitol when, after more than two hours of emotionally charged debate, the Senate finally passed the Compassionate Care Act last Friday by a vote of 49-10. The same bill had already passed the Assembly early that morning.
The bill that Cuomo expects to sign into law next week, however, bears little resemblance to the legislation that has been repeatedly introduced in both houses for two decades–legislation that was already often decried as too conservative.
“I’m delighted that the bill has, after all these years, passed both houses and is set to be signed into law,” says Assemblyman Richard Gottfried, longtime chair of the Assembly Health Committee and sponsor of the bill. “It will bring real relief to tens of thousands of seriously ill people.” But, he continues, “several of the restrictions in the bill that were insisted on by the governor are a problem and I hope we will be able to moderate or change them, either by amending the legislation or shaping the implementing regulations.”
“The compromises that were made changed the content of the legislation pretty significantly,” says Gabriel Sayegh, New York state director for the Drug Policy Alliance. “The bill will still have an important impact on the lives of New Yorkers, and that’s a good thing, but it’s certainly not the bill that we were hoping to see.” Sayegh cites a host of concerns: the extensive role assumed by the governor’s office; the lack of implementation requirements; the extended limitation on conditions that are eligible for treatment; and a general feeling that an individual’s health care should not be so extensively legislated.
“I think it’s important that the regulations respect the relationship and choices made by patients and their health-care providers,” says Gottfried. “There is real potential in the legislation for the state to try to micro-manage the practice of medicine. . . . Being pro-choice is not limited to reproductive health care.”
“There is almost nowhere in the medical system that we have now where the drugs that physicians have available to them are legislatively proscribed and defined in terms of who it is that they can prescribe those drugs for,” says Sayegh. “It’s a significant intrusion into the doctor-patient relationship.”
As an example, he points to post-traumatic stress disorder, a condition that was removed from eligibility for medical-marijuana treatment. “We know that there are a great deal of veterans in New York state who are dealing with PTSD and who, along with their care providers, are interested [in] having marijuana as one of their tools to deal with that condition. And they’re not going to be able to do that now and that’s an issue.”
Sayegh acknowledges that it is not only veterans in New York state who are dealing with conditions like PTSD. Casey Rayn, a 32-year Capital Region native, has been coping with PTSD since enduring abuse as a child.
“I was diagnosed at the age of 16,” she says, almost four years after an episode at school landed her at Brattleboro Retreat, a mental-health center in Vermont. She was prescribed a panoply of different medications as doctors tried to diagnose and mitigate her symptoms over the next few years. “Polypharmacy–the prescription or dispensation of unnecessarily numerous or complex medicines,” she says. “That’s what we call it in nursing school. I was a zombie for so long . . .”
One of the oft-cited reasons that medical marijuana is so helpful to those coping with these conditions is the deleterious effects that many of the most commonly prescribed drugs have on the day-to-day lives of those who take them.
“I’m so foggy on Xanax,” says Rayn. “I can’t function. I have panic attacks when I don’t have any and I’m starting to feel antsy. You can’t fight it. You need it. But it makes you feel as though you’re walking around in a cloud. I can’t focus on school. . . . I can’t study. And, I mean, here I’ve read studies where marijuana stimulates the brains of Alzheimer’s patients!”
Rayn, currently a nursing student, quit taking Xanax a year ago and is angry that the new law still prohibits her from using the drug to relieve her symptoms. “I have been dealing with this and researching this for so long, I’m a huge advocate.” With marijuana, she says, “you don’t go there; you don’t reach that threshold. And you don’t become addicted the way that you do with those other drugs.”
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“I don’t love [the bill],” says Adam Scavone, co-founder and director of New York Cannabis Alliance. “This was essentially Sen. [Diane] Savino compromising her way to victory. I think the urge to be restrictive won out over common sense. We got a bill done, but it left a lot of patients out in the cold and sets up a problematic system from the start with only five registered organizations having a monopoly across the state and only 20 dispensaries being possible in the first couple of years. It’s not enough.”
The fact that the law now allows for only five tightly regulated and registered manufacturers who are, in turn, allowed to work exclusively with only four distributors has also been consistently noted as a cause for concern, as are the virtually nonexistent statutes for implementation of the bill, particularly as far as timelines are concerned. Critics are worried that both changes will make it more difficult for patients to access the new drug.
“You can always expand a program,” explains Savino, who introduced and fought to pass the legislation in the Senate. “It’s much harder to retract it.” Referring to the limited number of manufacturers and dispensaries, she says that the number could be expanded at any time during the 18-month rollout.
“I’ve carried the bill for two years and it has changed five times since I’ve picked it up, so it doesn’t even remotely reflect the original bill,” she adds, saying that those changes were a result of research and work done by advocates and legislators to assure that the new drug would not only provide relief, but also function as a successful industry in New York state.
“Obviously,” she continues, “the final say-so is with the governor who, quite frankly, has to implement the bill, and so his input is critical. If he wants to go slower, that’s fine. But ultimately, what we have here is a statute . . . that meets the goals that we set out: tightly controlled and tightly regulated legislation that provides relief to patients who need it.”
“The governor said that the vertical integration component creates a more enclosed system,” acknowledges Gottfried, referring to Cuomo’s assertion that the system will provide much-needed oversight. “Offhand, I can’t think of any area of the economy where we mandate vertical integration, and I don’t think it makes sense and that it will make production and distribution very difficult.”
Gottfried, Sayegh and Scavone are all concerned that the lack of a statutorily mandated timeline also will stall the process and deprive New Yorkers of the care that they need right now.
“I’m very concerned,” says Gottfried. “That there will be considerable delay in getting the system up and running in New York . . . in the area of medical marijuana, there are patients whose health and life will be seriously jeopardized by that delay.” The most compelling cases, he says, are the small number of children with Dravet Syndrome, a very serious form of epilepsy. “Those children could get almost 100-percent relief from a certain strain of marijuana. To ask a 2-year-old to wait two years while, in some cases, experiencing up to 100 seizures a day, is inexcusable.”
Gottfried goes on to say that one solution to that problem could have been to allow the use of distributors already operating in other states, although whether or not the federal government would allow that is uncertain. Prior iterations of the New York bill would have allowed that as an option to explore but, says Gottfried, that provision also “fell out of the bill” on Thursday.
The amount of power that the last-minute rewrite placed into the hands of the executive branch represents one other large issue with critics.
“They removed statutory timelines,” says Sayegh. “They removed a lot of the statutory guidelines requiring how the system would be implemented, and they transferred that authority to the governor’s office–so that they have essentially a singular authority for implementation of the program.”
“The ability of the governor to essentially shut down the program entirely is, I think, and extraordinary and unusual power to give to the governor,” says Gottfried. “And it is not very defined in the bill. Between that and the sunset provision, we may have difficulty encouraging qualified companies to invest in New York. Medical marijuana is a very expensive, highly technical industrial production.”
“I could come up with a much longer list [of concerns],” says Scavone. “But, big picture, as far as I’m concerned, is that this gets this off of the legislative radar and moves it over to the Department of Health, where we can hash it out under the security of departmental rule-making and such. And it allows us to go back to legislators with our main agenda . . . comprehensive cannabis policy reform.” Referring to the tens of thousands of people who are arrested for possession every year in New York City, often with devastating or violent results, he says, “We have long said that getting patients out of the crossfire is essential and we were dedicated to that. We are now looking forward to serious, comprehensive reform. That’s the silver lining to this not-so-hot piece of legislation.”
UPDATE: In an earlier version of this story, we somehow misplaced the “a” that preceded “panoply” in paragraph 10. We found and restored it.