Medical marijuana to control NY boy's seizures costs family $50 a day

(WHAM) - It costs a few dollars when bought illegally on the streets. Yet families seeking the relief of medical marijuana for a sick child or loved one are being charges tens of thousands of dollars per year.

"We're not having fun with this. We're trying to save our son's life," said Steven Ognibene.

His son, Vincent, is almost 12 years old. Vincent has autism and lives his life in constant motion. "If he's not swinging, he has to be walking or bouncing. He has to be in constant motion," said his mom Corrinna.

When 13WHAM News first met the family last year, Vinnie suffered from severe epileptic seizures as often as 400 times a day. What began when he was 18 months old grew as he did- the seizures becoming more violent and more dangerous.

"He's lost front teeth because he's hit so many times. He's broken arms. Everything is a danger to him," Corrinna said.

Since May, Vinnie has been taking medical marijuana. He gets a syringe full of oil injected under his tongue three to four times a day. "I would say there's been a 25 to 30 percent decrease in the seizures," said his father. "We really hoped he would have no seizures."

Steve Ognibene is a doctor who certifies some of his colon patients for cannabis. He suspects increasing Vinnie's dosage would bring even better results. There's just one problem.

"It would probably be about $50 a day," Ognibene told 13WHAM's Jane Flasch. "It's kind of cost prohibitive to get up to that dose."

Numbers provided from the New York State Department of Health suggest the program has struggled even as patients have struggled to pay for the drugs they need.

In the first year (through January 2017), 12,993 patients were certified to receive medical marijuana. Three quarters of them - 10,250 - purchased the first dose.

Yet only half of the first-time purchasers became repeat customers. Cost is a key issue.

Medical marijuana is not covered by insurance and must be paid for in cash. Doses start at about $150 a month but can go much, much higher.

That's because New York puts more restrictions on providers - than any other state. The five companies that were selected to provide the drug must grow the plants, product the products, package and dispense them.

The state also allows only extracted oils to be used in liquid form or filled into a capsule. The oil takes 20 times more plants to produce than if the buds were harvested and smoked, which the state does not allow.

By contrast, in Colorado, where marijuana is legal for recreation, one dispenser tells 13WHAM the price is half of what the same product would be sold for in New York as potentially life-saving medicine.

"It makes us very frustrated when you see people who want to use it recreationally, paying tens of dollars, and we're paying hundreds of dollars," said Dr. Ognibene.

As a result of the slow rollout and repeat business, three of the five providers say they have yet to make a profit. The other two did not respond to inquiries. On provider who spoke on background said all of the patients certified so far could be handled by just one provider.

The DOH's call to expand the program does not address cost of the drug, though the prices are regulated by the state. Etain, which operated in Albany, has instituted a program to offer discounts to frequent buyers. PharmaCanna has reportedly said it will drop prices by 25 percent.

Bills in the state legislature would allow for the drug to be smoked and allow companies to contract out manufacturing and packaging, which would drop prices. Yet neither is likely to pass into law.

It has the Ognibene's trying to find a way to afford the $18,200 a year they estimate they would need to find relief for Vincent.

"It's very disturbing when its your child and you can't help it, you can't do anything to stop it," said Dr. Ognibene.

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