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Another Voice: Medical marijuana program has failed my son

By Buc Williams

My family and I spent months lobbying for the passage of New York’s medical marijuana program. My son Tommy has one of the rarest and severest forms of epilepsy known as LGS (Lennox Gastaut Syndrome), and we have very good reasons to believe that medical marijuana can help him as it has helped children with similar conditions in states where it’s legal.

We talked with the media, drove from Lockport to Albany to meet with elected officials and made countless phone calls and numerous visits to our local representatives – all to try to get help for Tommy and the thousands of other New Yorkers who could benefit from medical marijuana.

We were disappointed that the bill that Gov. Andrew Cuomo signed was a gutted version of the one we advocated for, but I never imagined that it would turn out completely inaccessible to families like mine. After waiting 18 months for the program to roll out, we were one of the lucky families able to find a physician to certify that our son qualified for the program. This was a critical step since patients can’t participate in the program unless they go to a doctor who has taken a training course and registered with the state.

I also thought we were lucky because we happen to live relatively close to two of the only 20 dispensaries for the entire state.

That’s where our luck ran out. Neither of the two dispensaries near us carried the kind of medical marijuana Tommy needs – a high CBD strain that has no psychoactive effects but is very effective in controlling seizures. There are only five producers for the entire state, and each is allowed to produce only five strains or brands. This means patients are likely to be able to access only a few strains even though there are literally dozens of different therapeutic strains for sale in other medical marijuana states.

Because neither of the dispensaries near us had what we needed, my wife had to drive 400 miles round trip to Johnson City to get the strain we needed. To add insult to injury, when she arrived, she learned that the monthly cost for Tommy’s medication would come to $2,000! Our insurance and Medicaid will not cover any of the cost. This exorbitant price makes no sense at all. A very similar product in Colorado costs one-tenth of what it does in New York. Prices for medical marijuana in New York – unlike in any other state – are set by the health commissioner. In our case – and I’m sure for the vast majority of New Yorkers – that price is simply out of reach.

So our months of work to pass this law have resulted in a program that we and a whole lot of other New Yorkers cannot even use. Making a medication that can relieve suffering and is potentially lifesaving inaccessible is not compassionate; it’s the definition of cruelty.

Buc Williams and his family live in Lockport.