Yesterday, the Buffalo News reported on an agreement with Britain-based GW Pharmaceuticals to pursue clinical trials in New York for Epidiolex, a investigational new marijuana-derived drug that is intended for children with severe seizure disorders. The proposal is limited to research studies only, must go through the lengthy FDA-approval process, and would be focused solely on children under 18 years of age with severe seizure disorders who have not responded to other medications. The research study is not the same thing as a patient access system for medical marijuana – such as the one outlined in the Compassionate Care Act (S.4406B-Savino/A.6357B-Gottfried). The research trials would not allow eligible patients in New York to access medical marijuana under the supervision of their healthcare provider. Rather, only a very small, select group of patients – likely limited to a few dozen - who qualify for the research trial would be allowed access into the study.
Patients, caregivers and physicians – frustrated with Gov. Cuomo’s failure to support real solutions – reacted strongly to the proposed trials.
Wendy Conte of Orchard Park, whose daughter Anna suffers from a severe seizure disorder, said: “I’m tired of politicians who claim they want to help our kids and then propose unworkable solutions. My child almost died last night, and every time she has a seizure, it could be her last. We don’t need a limited research program that will only help the lucky few who can get in enrolled. Epidiolex may not even work for every kid who has a seizure disorder. We want options. And we want a workable system that creates access for all patients needs — not just my daughter but all those living with epilepsy, cancer, MS, HIV/AIDS, and other serious illnesses. If Governor Cuomo wants to help Anna, he would support the Compassionate Care Act.”
Christine Emerson of Rochester, whose daughter suffers from life-threatening seizures, said: “It’s time to stop playing politics with our kids’ lives. My daughter Julia doesn’t need research, she needs a workable medical marijuana system. An Epidiolex trial and the 30 year-old Olivieri proposal will help few, if any, New Yorkers. Why would we head down a failed path that we know is going to leave many sick and suffering New Yorkers behind, when we could pass a well-crafted, well regulated, and comprehensive bill? Time is running out — for my daughter, my friends with cancer, and so many other seriously ill New Yorkers. How many more people have to suffer or die before the Governor and legislature pass the Compassionate Care Act?”
Richard Carlton, MD, of Port Washington, said. “As a caregiver to my wife with Parkinson’s, and as a physician, I am profoundly disappointed to see Governor Cuomo supporting this limited research proposal instead of the Compassionate Care Act. I’m all for more research, but my patients and my wife need a comprehensive medical marijuana program that will give doctors and patients the flexibility they need to treat their illnesses. A research study cannot replace a system of care for patents in need. As an example, the Governor is proposing that a private company supply a preparation of pure cannabidiol (CBD) to treat children with intractable epilepsy. However, physicians experienced in this field know from experience that most children with intractable epilepsy require that a small amount of THC be added to the mix (often in a ratio of 10:1 CBD to THC). The Governor does not have the training to understand the receptor-mediated as well as the non-receptor mediated effects of the various cannabinoids and their ‘entourage’ effects. The Governor should stop attempting to ‘play doctor’, and, instead, should leave it up to licensed health professionals to determine which cannabinoid products, and in which ratios, are best for their individual patients. If Governor Cuomo really wants to help sick New Yorkers, he would support the Compassionate Care Act.”
Sunil Aggarwal, MD, PhD, of New York City, co-chair of NY Physicians for Compassionate Care, which represents more than 600 New York doctors who support medical marijuana, said: “The Governor’s proposal is unworkable as a system to create patient access for New Yorkers in need. It may work as a research program, but we know that research programs are expensive and only help the very few patients lucky enough to be enrolled. The science on the efficacy of medical cannabis is clear. The Governor of New York State, rather than partnering with in-state producers to produce cannabis, would rather contract cannabis production for medical research out to an off-shore European pharmaceutical company. That’s not very sustainable. For research, that is a fine idea. But medical marijuana access for patients in New York should not be left simply to a research program that will put cannabis in the hands of less than one percent of patient population who could benefit. What New York needs is a well-regulated system that allows seriously ill and debilitated patients — people living with cancer, MS, epilepsy, and a range of other conditions — to use medical marijuana under the supervision of their healthcare provider. The Compassionate Care Act is designed to do just that.”
Howard Grossman, MD, Co-chair of NY Physicians for Compassionate Care, said: “More research on medical marijuana is always welcome. But the Governor’s research program simply will not help the thousands of New Yorkers living with serious illnesses and debilitating conditions who need medical marijuana to relieve their suffering. Many patients who need medical marijuana will be too ill to travel to one of the few research sites. Maryland tried to implement a program very similar to the one Governor Cuomo has proposed, and not one patient ever received medical marijuana under that program because of the bureaucratic barriers. In fact, that state ended up passing a comprehensive medical marijuana bill, recognizing that their research program approach, like the one the Governor Cuomo has proposed, was an abysmal failure. New York should not go down that failed path; it should pass the Compassionate Care Act — a tightly regulated and comprehensive bill that would ensure patents who can benefit from medical cannabis have access.”
Donna Romano of Syracuse, who is living with multiple sclerosis, said: “Governor Cuomo says he wants to help patients, but what he’s proposing is a limited research program that would only help a few patients, and only those who are able to travel to one of the few participating hospitals and then who are lucky enough get enrolled in the study. What about the thousands of New Yorkers, like me, who are living with MS, or the thousands of terminally ill cancer patients or others who are too sick travel, or the kids who won’t benefit from Epidiolex? I’m clear on how the Governor can help sick and suffering New Yorkers. He can support the Compassionate Care Act, which is a comprehensive piece of legislation that won’t leave our sickest and most vulnerable citizens behind.”
Nancy Rivera of Troy, a four time cancer survivor, said: “I’m disappointed that Governor Cuomo has proposed another program that will leave patients behind. The legislature has a well written and comprehensive bill before it called the Compassionate Care Act. A research program, like what the Governor proposed, isn’t the same thing as a system for making sure that seriously ill New Yorkers who can benefit from medical marijuana have access to it. Frankly, it sounds to me like a political ploy, not a real solution. If the Governor wants to help cancer patients and others who continue suffer needlessly because they can’t access a medicine that would help them, he should get behind the Compassionate Care Act.”
Dawn Carney of Mt Vernon, who is living with HIV, said: “As a person living with HIV for 20 years, I’m frustrated that Governor Cuomo continues to push for limited medical marijuana research programs rather than supporting a comprehensive solution, like the Compassionate Care Act. Research is fine, but it will leave behind thousands of New Yorkers, like me, who are living with serious, chronic and debilitating diseases. What we need is a workable system that allows all those with seriously illnesses who might benefit from medical marijuana to have access under the supervision of their doctor. The GW trial won’t do that. The Olivieri program won’t do that. The Compassionate Care Act will.”
Momentum for the Compassionate Care Act continues to build. A poll from Quinnipiac University released last week found that a super majority (83%) of New York voters support medical marijuana. The Assembly has passed the bill by wide margins five times – including last week with bipartisan support — and included the Compassionate Care Act in their budget bill earlier this session. Two weeks ago, the Senate Health Committee voted in favor of the Senate version of the bill and advanced it to the Finance Committee. The bill has strong bipartisan support in the Senate, with three Republican co-sponsors (Senators Robach, Grisanti, Maziarz) while Senator John Bonacic, (R-Middletown), Senator Tim O’Mara (R, C – Big Flats, Elmira), and Senator Larkin have all expressed their support.