For ill patients, medical marijuana in NY remains out of reach

ALBANY – The 10-year-old girl stood smiling at the governor's side as he signed a medical marijuana bill into law last July.

Amanda Houser was so excited for the event, her mother said, her health problems — a rare form of epilepsy — were nearly forgotten for the day. And the photo from the New York City event of Amanda next to Gov. Andrew Cuomo is one of the more memorable images from his time in office.

But the good feelings from the event have gradually subsided, and ill patients are increasingly frustrated that, nearly a year later, they still can't access medical marijuana in New York.

"She really shined that day, knowing that she might get the medicine," Amanda's mother, Maryanne, of Suffern, Rockland County, said. "She asks: 'When am I going to get it?' She's tired of being different from the other kids."

As New York nears awarding licenses to the companies who will grow and distribute the medical marijuana, critics are concerned the system won't be in place by the state's expected Jan. 1 target. They are also questioning how readily available the drug will be throughout the state.

The answers to those concerns and questions will affect the fortunes of at least three Rochester-area businesses, a local university's research plans and the quality of life of a variety of local patients who are coping with serious illnesses.

In the meantime, some state lawmakers — Democrats and Republicans — are pressing for a bill to allow for emergency access to the drug for patients with most urgent needs, such as children with severe epilepsy. They are seeking to have the bill passed before the legislative session ends June 17.

After the law was approved a year ago, it started an 18-month clock for the state Health Department to have the program underway. This is not recreational marijuana like that available in Colorado. The drug would only be available in non-smokeable forms, such as pills, oils and vapors.

"My biggest concern right now is how long it's going to take for the children with epilepsy and other people with real life-threatening conditions to get any medication," said Assembly Health Committee Chairman Richard Gottfried, D-Manhattan, the longtime champion of legalized medical marijuana.

Sue Nill Kidera, 58, of Pittsford, was diagnosed with colon cancer in 2005. She believes medical marijuana would help her and fellow cancer patients with nausea, appetite and pain.

"It's very frustrating. It's very political here. And I don't think it should have anything to do with politics," she said.

The state expects to award five contracts to private marijuana growers, who will each be permitted to open up to four dispensaries and distribute the drug to patients in New York who have prescriptions form their doctors.

The state Department of Health has defended its process. Cuomo sought to get emergency rules in place to speed up the pace of getting medical marijuana into New York state, but the federal government rejected his request.

"Our top priority is to deliver relief to those in pain and we are doing so as expeditiously as possible under current federal guidelines and within the confines of the Compassionate Care Act, which Assemblyman Gottfried sponsored, supported and passed through his own house," Cuomo spokesman Richard Azzopardi said in a statement.

He continued that, "The last thing that anyone would want is legal complications to arise from importing marijuana products over state lines without federal approval, or for unnecessary delays with the implementation of the current program to come as a result of layering a separate process on top of it."

Earlier this month, the state pushed back a deadline by a week to June 5 to apply for a license to grow and distribute medical marijuana.

It appears dozens, if not hundreds of companies, are interested in growing and distributing the medical marijuana — including at least three companies in the Rochester area and several more in the Hudson Valley.

The state said the delay is the result of a high number of questions about the application process. But the Health Department has refused to discuss its deliberations or provide an estimate of how many applications it has received.

The goal, advocates said, is to have the system up and running by January — a tight time frame because the contracts won't be approved until at least July.

"Ultimately, what meeting the timeline means is that there is not an excessive delay for patient access, and that's what it comes back to," said Mark Doherty, the project manager for Butler Evergreen, which is proposing a distribution center in Wayne County.

Medical marijuana is expected to be a benefit not only for patients, but for the state's economy and its research institutions. The University of Rochester, for example, hopes to partner with distributors to gain knowledge about how the drug can help the ill.

"Several companies are approaching academic institutions for proposed partnerships, and we're interested in that," said Peter Robinson, UR's chief operating officer. "But the partnership is really going to end up most likely as a research relationship."

Medical marijuana in New York could grow over the next five years into a $1 billion a year industry, according to an estimate by GreenWave Advisors, LLC, a Manhattan-based marijuana research firm. The drug will be taxed at 7 percent of gross sales, with proceeds split between the state and the counties where the drug was sold and manufactured.

Applicants are required to pay a $10,000 non-refundable application fee in addition to a registration fee of $200,000 — which would be refunded to the entities not selected.

Interested companies "are taking a long-term view because the capital requirements are pretty exorbitant," said GreenWave founder Matt Karnes. "And what's unique about New York is that the grower has to manufacture his own product. So not only do you have to have the expertise to cultivate, but then you have to purchase the equipment to infuse the product and to develop the products that are in conformity with the law."

For families of sick children, the medicine can't arrive soon enough. In western New York, three children died over the past year as their families advocated for the drug to become available.

Other families have faced the decision of whether to wait for medical marijuana to be available in New York or go to other states and quietly bring it back home. Some have moved to other states, such as Colorado or California, that have legalized medical marijuana.

Some parents said they have had concerns about illegally using medical marijuana in New York, fearing they could be prosecuted, wouldn't have a steady supply or would lack the expertise to administer it without a doctor's care.

"If it's going to take a little more time for me to get quality medicine for my kid — not something someone made in their garage or somebody's kitchen — and that they can guarantee the supply, then I'm willing to wait," said Christine Emerson, a pediatric nurse practitioner in Chili whose daughter, 8-year-old Julia, suffers from epilepsy.

Some parents have criticized Cuomo and state officials for not being more aggressive in making medical marijuana readily available. Some states have gone forward with emergency regulations without seeking federal consent.

After being elected in 2011, Cuomo initially opposed medical marijuana, fearing it would become too widely available as a recreational drug.

But as state lawmakers moved last year to pass a broader medical marijuana bill, Cuomo reached a compromise with the Legislature that limited access to the most seriously ill patients in non-smokeable forms.

"If they truly wanted to find a way to get relief to some of the patients who are most needy, they could find a way to do it," said Kate Hintz of North Salem, Westchester County, whose daughter, Morgan, 4, suffers from Dravet syndrome, a rare form of epilepsy.

As his 8-year-old daughter, Donella, battled brain cancer last year, Nathan Nocera of Niagara Falls said he obtained cannabis oil that he started to administer to her at a Buffalo hospital last summer.

He said the medicine was helping her, but he contended that doctors and Child Protective Services ordered him to stop giving it to her. He did, and she died in December.

Nocera said he's miffed about why New York hasn't found a way to get the medicine to ill patients.

"If she was able to keep on using the cannabis oil and have access to it, we'd be talking a different story right now. She would have had a chance to improve," he said.

Some medical marijuana opponents continue to raise concerns about making the drug legal in New York. State Conservative Party chairman Mike Long said the legalization could ultimately lead to a loosening of laws on marijuana use, which he would be opposed to.

"I think it only leads to more problems," Long said. "I think the state or society loses control over who has possession of it. There are always people gaming the system."

Medical-marijuana advocates are urging the state to ensure that the licensees are geographically balanced so there is access for patients in rural and urban areas. Also, the drug isn't expected to be reimbursable under insurance policies, so the price and the potential for financial assistance for patients is another important factor, they said.

"In terms of getting this medicine to the pediatric patients it is extremely urgent. We've had a number of children die from their conditions," said Dr. Luke Peppone, a UR researcher who is advising Butler Evergreen.

"We don't want people leaving our state because they can't get a medicine here," he continued. "It's important to our cancer patients, who, as a researcher, I believe it can help them with their suffering."

JSPECTOR@Gannett.com

Joseph Spector is the Gannett Albany Bureau chief.

Program details

Here's are some details on the medical marijuana program in New York that is expected to be up and running by Jan. 1:

Who can get it: Medical marijuana will be available to patients with cancer, HIV/AIDS, Lou Gehrig's disease, Parkinson's disease, multiple sclerosis, significant damage to the nervous tissue of the spinal cord, epilepsy, inflammatory bowel disease, neuropathies, Huntington's disease and other conditions added by the state Department of Health.

Who can prescribe it: Only doctors certified by the state Department of Health would be able to prescribe marijuana.

Who would grow it: It would be grown in New York in five locations and dispensed at 20 outlets. Applicants for the five locations are required to pay a $10,000 non-refundable application fee in addition to a $200,000 registration fee —which would refunded to the entities not selected.

What form it would take: Only non-smokeable forms of marijuana and cannabis will be allowed.

What taxes will be applied: The drug will be taxed at 7 percent of gross sales, with proceeds split between the state and the counties where the drug was sold and manufactured.

How long it will last: The program will expire after seven years, though the governor could suspend the program at any time on the advice of State Police or the Department of Health.