WILLIAMSVILLE, N.Y. (WIVB)- Patti and Buc Williams were thrilled when they learned New York State was going to provide life-changing medicine for their son Tommy, who suffers from severe epilepsy.
More than five months since the state’s medical marijuana program officially kicked, off the Lockport parents said there’s a lot that needs improvement.
“We’re lucky that we have product to choose from but we don’t have the right product, we don’t have enough product. The product keeps changing, prices are fluctuating. It still has a lot of work that needs to be done,” Patti said.
Like many families in their situation, they hoped the Compassionate Care Act would be a turning point to dozens of seizures a day. They’d tried everything; alternative treatments, a long list of pharmaceuticals, even moving out-of-state to get access to medical marijuana. Nothing was a permanent fix.
In July of 2014 the Compassionate Care Act was signed into law. The program rolled out 18 months later with an online registry through the Department of Health.
Buc said while the phone wait times are often very long, he’s usually able to get through to someone from the DOH.
“They were friendly and tried to be helpful. But the problem was a lot of them had no idea what was going on. So they’re still learning and figuring it out as they go,” he said.
There are about now 600 physicians in the state who can prescribe medical marijuana in New York state. More than 5,000 patients have been certified to receive the drug.
According to a Department of Health spokesperson, the wait time between finding a certified doctor and registering as a patient has been cut by 50 percent since the program started.
But the Williams’, along with several other families they’ve met through this struggle, told News 4 finding physicians hasn’t gotten any easier.
“Luckily for me, I knew people that had gone before us. Because if I didn’t I would have had no where to go, I wouldn’t have known where to turn,” said West Seneca mom Kristie Maxon, whose son uses medical marijuana.
“The majority of registered physicians do not want to be listed publicly, in part due to safety concerns, because criminals may mistakenly believe that marijuana plants or products are stored at the doctor’s office, or that large amounts of cash are on hand,” said Director of Communications and Public Affairs for the DOH, Jim Plastiras.
There’s currently a secure portal through the Department of Health. It allows all certified medical professionals licensed to treat illness within the medical marijuana program access to one another, but patients are unable to see it.
“It’s just frustrating that certain states can just go to a dispensary and get anything that they need. In New York state we really had to fight for this. We would go to another state to get it if it was legal,” Patti Williams told News 4.
In Erie County, there are two dispensaries for medical marijuana.
One of them, Bloomfield Industries in Williamsville, recently cut it’s hours. While you can schedule appointments any day of the week, it’s now only regularly open three days a week.
Public Health Advocacy groups have said that’s a red flag.
Like these four families, the Drug Policy Alliance feels transparency is a problem within the DOH. Julie Netherland, who works for the Drug Policy Alliance, said they’ve had a hard time getting specific answers to their questions.
The DPA recently published a report detailing concerns from patients and caregivers. Of 255 interviewed, 77 percent who had obtained medicine, said they wouldn’t able to afford it.
At one point, the Williams were facing a $2,000 a month tab for Tommy’s medicine.
The Commissioner of Health approved prices set by the five registered companies that operate the state’s 17 dispensaries.
Because it is not federally approved, medical marijuana is not covered by insurance.
According to the DOH, there is a discount for patients in financial need, but it’s only between 8 and 15 percent.
“Since I’ve started my children on this product the concentration has changed five times,” said Daniel Ryszka of Williamsville.
Ryszka is a pharmacist, and a father of two kids who rely on medial marijuana to treat their symptoms. He feels there’s not enough consistency in what his children are being given.
A DOH official told News 4 all products in the state’s medical marijuana program are tested at a state lab, and that with an agricultural process like this, certain products require more tests and are subject to change.
“It’s like you’re driving with your headlights off. You don’t really know what the response is going to be. You’re just trusting that the child responds appropriately,” Ryszka said.
Parents like Lisa Valle and Kristie Maxon share Ryszka’s and the Williams’ frustrations.
“They’ve become our best friends. We’re all in this together, and we’re a big family. We lean on each other when times are tough. We support each other, and we’re a great resource,” Ryszka told News 4.
Valle and Ryszka have teamed up to help other parents in our area understand the state’s program. Essentially, they’re doing the job they feel the state isn’t; getting answers, and spreading the awareness.
“This is beyond our children. This topic is a worldwide issue that is taking a deaf ear,” said Ryszka.
Valle’s daughter Maya has come leaps and bounds since getting access to medical marijuana. As frustrating at the state’s lack of response to her concerns has been, she remembers what life was like before medical marijuana was even an option.
“It’s like literally putting your child on railroad tracks and hoping a train doesn’t come by today. I mean that’s how scary it is, every single day,” Valle said.
According to the Compassionate Care Act, the state is required to publish a report on the program every two years. The first report is due in mid July.