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JAN 27 - FEB 03, 2015

As Parents Await Help for Their Children, Lewiston Company Has Healing Charlotte's Web and Seeks, Awaits NYS Approvals

By Margaret Shea

January 27, 2015

The momentum to pass New York's Compassionate Care Act (signed into law July 5th, 2014) began in Feb-March of last year, when four Republican Senators from Western New York added their support for the bill: Senator George Maziarz (Newfane), Senator Mark Grisanti (Buffalo), Senator Joe Robach (Rochester) and Senator Tim O'Mara (Elmira).

These pioneering senators garnered praise and thanks from patients, desperate for access to medical marijuana all around the state, for their efforts to end the gridlock in the State Senate caused by anti-medical marijuana conservatives. Until Western New York stood up, the bill, although having passed the Assembly four times, was stuck in the Senate Health Committee, with no hope of ever making it to the Senate floor.

Former State Sen. George Maziarz pushed for legalization.


Maziarz Makes the Leap

Maziarz became one of the first Senate Republicans to publicly announce his support for the Compassionate Care Act along with Grisanti, followed shortly thereafter by Robach, and O'Mara. Maziarz' support, then third-highest ranking member of the Senate Republicans, had huge effect.

O'Mara, a former Chenung County District Attorney, publically stated on his Senate webpage in early March of last year, "This legislation allows for safe, limited access to medical marijuana, for people who suffer from serious, debilitating diseases… Comprehensive medical research and the ever-growing testimony from medical professionals, health care experts, patients and families show that the use of medical marijuana can help ease the pain and suffering of the seriously ill." O'Mara enlisted Gary Mervis, Chairman and Founder of Camp Good Days, to also publicly express his support for the bill. Camp Good Days operates a Recreational Facility on the shores of Keuka Lake in Branchport, in O'Mara's district. It provides summer camping activities and other year-round events for children with cancer, and their families.

Mervis stated, "I've devoted my adult life to the quest to find and develop new and better ways and methods to help ease the fears and treat the pain and suffering of children and adults facing cancer, together with their families and loved ones. We have a responsibility to recognize that in certain cases medical marijuana can make a difference for children with cancer and seriously ill patients of all ages. It can help improve the quality of their lives, which means it can help give them hope. We've reached the point in our medical advancement where we can administer this treatment safely and sensitively and with no unintended consequences whatsoever for society at large."

Children at Camp Good Days & Special Times.


Skelos Turns Around

Thereafter, inspired by his fellow Western New York Republicans, Dean Skelos Co-Majority Leader of the State Senate began to soften his position. Up until then he had been staunchly opposed to the bill. Capital New York reported his change of heart, "I think some people have made their case in terms of the oil, especially with kids that have hundreds of seizures a day." Although at that point (March) he still wouldn't commit to bringing any legislation to the floor.

The following June Maziarz, Grisanti, and Robach signed on as actual Co-Sponsors of the bill.

Patients, healthcare providers and advocates with the statewide Compassionate Care NY coalition praised Sen. Maziarz and called on Senate leadership to finally allow a vote on the measure.

"I want to thank Senator Maziarz for signing on as a Co-sponsor to the Compassionate Care Act," said Wendy Conte of Orchard Park whose daughter, Anna, suffers from a severe seizure disorder. "This bill has strong bipartisan support, and Senator Maziarz has recognized that seriously ill patients across New York need this legislation now. Every day the Senate delays acting is another day that my daughter faces a life threatening seizure. Just last night, she had three severe seizures, and we had to call the paramedics. She made it this time, but we can't keep waiting. It's time for Senate leadership to bring the bill to a vote now."

"We're grateful for Senator Maziarz' support of the Compassionate Care Act," said Gabriel Sayegh, state director of the Drug Policy Alliance. "This legislation is supported by Republicans and Democrats, progressives and conservatives, and the overwhelming majority of New York voters and anyone else who cares about compassion and justice for patients. Clearly, this isn't a partisan issue – it's about people, about relieving suffering. Now it's time for the Senate to stop delaying and pass the Compassionate Care Act."


The Bill makes it to the Floor

Along with Maziarz, Grisanti, Robach, and O'Mara another crucial Republican who added his support was Senator Bill Larkin, (Cornwall-on-Hudson) who holds a seat on the Senate Health Committee. Larkin cast the deciding vote that allowed the Compassionate Care Act to move out of where it was languishing in the Senate Health Committee. He was the lone GOP member of that Committee to vote "yes."

Then, finally, the Bill could make its way to the Senate Floor. "If you were to tell me at the beginning of this [legislative] session that I would be voting yes on this legislation, I would say to you, 'No way,'" Senator Dean Skelos said on the Senate floor June 19. "But when you meet Oliver Miller from my district, 14 years old -- and some of the folks here mentioned that they have 10 or 12 seizures a day, he has hundreds of seizures a day because of a pre-birth stroke. That's worth voting for this legislation."

Fourteen-year-old Oliver Miller suffered a stroke in utero that left him significantly handicapped, and still causes him to have hundreds of debilitating seizures every day. His mother, Missy Miller, says Oliver needs access to medical marijuana, shown to ease seizures in children. For years, Oliver and his mother were on the front lines of the fight to legalize medical marijuana in New York State, and finally on July 5th, 2014 the bill was signed by Governor Cuomo into law. All their hard work paid off.


Now the Law is in Effect

Will it Save Kids in Time?

It has been widely reported that Governor Cuomo played hardball in his negotiations with the Assembly and Senate, notably with Diane Savino of the Independent Democratic Conference the original sponsor of the bill. Particularly, the original bill proposed by Savino had a (1) year date of enactment provision after the bill's signing. Cuomo has been reported as saying he did not feel the law could be effectively implemented in such a short period of time and succeeded at having the final bill provide for an (18) month date of enactment after signing. Or so it's been reported.

However, a careful read of the law shows it states "Section 3369-B. Effective Date. Registration identification cards, or registrations of Registered Organizations shall be issued or become effective no later than 18 months from signing or until such time as the Commissioner (of Health) or the Superintendent of State Police certify that this title can be implemented in accordance with public health and safety interests whichever events come later.

This is significant distinction. Children like Anna Conte of Orchard Park are in a daily fight for their lives while waiting for their legal prescriptions of marijuana to stop life threatening seizures. Yet the reality is, this law may NOT go into effect by January 2016 if the Commissioner of Health and/or the Superintendent of State Police do not certify that it can be implemented yet. What???? It can take as long as 7+ months to grow and harvest some strains of medicinal marijuana and process it into prescription form. Yet here we are in January 2015 and the application process for Registered Organizations to become certified by the State has not even begun. Realistically, how is this going to come together in NY so fast? Registered Organizations needs to be up and running - at least as far as their growing operations are concerned - as soon as possible. The clock is ticking.

Senators Chuck Schumer and Kirsten Gillibrand ask Federal Government: "Help Sick Children Now with Charlotte's Web!"

On September 29th, 2014 Kirsten Gillibrand published the following announcement on her US Senate Website (abridged)


Gary Smith, CEO of Modern Corp, is a member of Lewiston Greenhouse, LLC, which has the license to grow Charlotte’s Web. The company needs state approval to become one of five authorized medical marijuana growers.


Schumer, Gillibrand Urge DOJ to Grant New York A Medical Marijuana Waiver:

Waiver Would Allow Sick Children Suffering from Epilepsy and Seizures Access to Critically Needed Cannabis Oil With A Doctor's Prescription Before New York State Law Goes Into Effect

September 29, 2014

Washington, D.C. - U.S. Senators Charles Schumer and Kirsten Gillibrand today urged the U.S. Department of Justice (DOJ) to grant New Yorkers immediate access to a strain of medical marijuana mostly commonly known as "Charlotte's Web" before legalization is implemented in the state. The waiver requested by the Senators in a letter to U.S. Attorney General Eric Holder would allow cannabidiol, from the cannabis plant, known as cannabis oil, to be transported across state lines from Colorado into New York State. The request originally came to the Senators from New York families with young children suffering from diseases where cannabis oil proved to be effective in reducing pain and controlling symptoms.

New York's marijuana law was passed in July and will allow limited access to medical marijuana. It is estimated that it will take up to 18 months for the law to be fully implemented and for medical marijuana to be produced in-state. If granted the waiver, critically ill seizure sufferers would have access to medical marijuana far more quickly.

"For the many children suffering from certain types of epilepsy and seizure disorders, who are in great pain, prescription-based marijuana can be the only option; it is only fair to provide them access," said Senator Schumer. "We urge the Department of Justice, using adequate safeguards to keep it out of the black market, to provide this waiver so that some of the most vulnerable New Yorkers can have a measure of relief from their suffering."

"This is a common sense step for families with children suffering acute pain while awaiting the legalization of medical marijuana to go into effect," said Senator Gillibrand. "I hope the Attorney General will use his authority to help ease the pain of these families and their children who shouldn't have to wait any longer for an effective medicine."


Critics of Cuomo's Sunset Provision and the Risks for RO's

As the Reporter wrote last week, Western New York's hometown RO applicant Lewiston Greenhouse, LLC, bought the rights to the Charlotte's Web strain of medicinal marijuana from its developers the Stanley brothers in Colorado. Founded in part by the Modern Corporation, Lewiston Greenhouse has the Charlotte's Web strain rights for all of New York State, and is betting their hopes on being granted an RO license. Their plan is to transition their 12 acre commercial greenhouse from tomatoes to medicinal marijuana following the Stanley brothers' model, with more greenhouses to be built as demand arises.

However, there are many risks involved in their investment. First, Cuomo pushed to have the final law read that it "sunsets" in 7 years. In other words, if things aren't going well the law will automatically be repealed in 7 years if a renewal of the law isn't passed before then. Senator Diane Savino argued heavily against a sunset provision stating it will hinder companies from investing in the state. What big company wants to invest in an industry that could be required by statute to fold in 7 years? Other risks to an RO applicant as provided in the Act:

• "Every sale of marihuana shall be at the price determined by the Commissioner."

• "The Commissioner is authorized to set the per dose price of each form or medical marihuana sold by a registered organization."

• "The Superintendent of State Police, or the Commissioner can make a recommendation for the revoke of a registered agent's license on the basis of Public Health or Safety concerns."

These prices are not anywhere close to being determined, and the definition of what fits a Public Health or Safety concern is not fleshed out. As these final aspects of the Compassionate Care Act were being negotiated Cuomo stated to the New York Times, "There are certainly significant medical benefits that can be garnered; at the same time, it's a difficult issue because there are also risks that have to be averted," mentioning safety and law enforcement concerns. "We believe this bill strikes the right balance."

Lewiston Greenhouse has an uphill battle because of these risks, and the degree of uncertainty of how everything will play out, but they are moving full steam ahead because of the urgent need for Charlotte's Web in NY.







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