SNYDER, N.Y. -- Four months into New York State's medical marijuana program, you'll find praise tempered by concern. Promise is countered with worry.
"There's hope where there was none before," said Linda Ryszka, whose children Taylor and Caden both suffer from seizure disorders. "There's still more to do."
2 On Your Side talked with Linda, her husband Dan, Lisa Valle and Christina Kelly. All four are parents of children who are medical marijuana patients.
"It has been amazing," Lisa said. Her daughter Maya has been seizure free since her first dose.
"She's started to vocalize more," Lisa said. "This is the first year that she's actually learning stuff."
The Ryszka's children have shown dramatic improvement. Taylor went from hundreds of seizures a day to going weeks without a single one. Caden was in a constant state of seizure before the medical marijuana.
"His eyes don't shimmer anymore," Dan said. "I'm seeing these children for who they really are. It's like an awakening."
And Christina Kelly's daughter Mariah is able to stop taking some of her powerful and potentially dangerous pharmaceuticals. She's even able to walk more, because she has more strength and energy.
"After (her first dose), she was bright-eyed and bushy-tailed and ready to take on the world," Christina explained.
The four parents feel extremely fortunate that the medicine has helped their children. However, they worry about the future of the program in New York State.
As of this week, the New York State Department of Health says only 556 physicians statewide are registered. The department won't release the names of those doctors, citing state law protecting their privacy.
As a result, many patients have found it nearly impossible to find a doctor who can certify them to receive the medicine.
"There are a ton of patients who cannot find a doctor," Lisa said.
Assemblyman Richard Gottfried, one of the authors of the Compassionate Care Act that legalized medical marijuana in New York State, said the health department is "illegally" withholding that list. He's a Democrat and chairman of the Assembly Health Committee. He's proposed a bill to force the list be made public.
That's just one of the issues Gottfried is trying to tackle with new legislation. He's very critical of the program in its current form.
"Access to patients is really very severely limited, and the program has barely gotten off the ground," Assemblyman Gottfried said.
Gottfried and other lawmakers have proposed bills that would make the following changes:
- Expand the number of growers (currently 5) and dispensaries (currently 20)
- Authorize nurse practitioners and physician assistants to sign off on patients
- Include more conditions for which medical marijuana can be prescribed
- Allow some patients to smoke the medical marijuana
- Force the health department to release the names of registered doctors
"The system we've set up is unlike any part of our economy," Gottfried said. "It's vastly more restrictive than the system we use for providing very dangerous and highly addictive drugs like morphine or hydrocodone. It just makes no sense."
Nicholas Vita, CEO of Columbia Care, and Ari Hoffnung, CEO of Vireo Health of NY, both told 2 On Your Side in separate telephone interviews that they're optimistic more doctors and patients will join the program in the coming months.
Both also said the five growers, known as "registered organizations", are working hard to increase the range of products at their dispensaries and to have those dispensaries open more days per week and hours per day.
When asked about the legislative efforts in Albany, Vita said, "I think it's a wonderful example of the way various stakeholders are coming together to collaborate, to try to address some of the concerns that patients have voiced."
"It is a great sign that just 100 days into the program, elected officials both in the Assembly and in the New York State Senate are looking for ways to improve the program," Hoffnung said.
Perhaps the biggest concern for patients that are already certified is price. One patient in Western New York paid $1,040 for her first monthly supply. However, that was at a small dose. When at the full dose, as recommended by her physician, her daily cost will go up to $130. That translates to more than $47,000 per year, all out of pocket, because insurance does not cover medical marijuana.
"It's a severe financial burden on the family," Assemblyman Gottfried said, noting that the long-term goal is that insurance coverage will apply to cannabis. However, Gottfried acknowledged that will take major legislative efforts in Washington, D.C. and Albany.
Vita and Hoffnung said their companies work with low-income patients who need assistance in paying for their medication. But they acknowledged there are patients who are priced out.
Industry insiders told 2 On Your Side the biggest factor with price is participation, and when more patients are certified and paying for medicine, the overall cost will decrease.
The legislative session ends in mid-June, so the clock is ticking for advocates to convince lawmakers to pass reforms.
"Is this going to pass," 2 On Your Side's Michael Wooten asked Dan.
"I'm hoping it does," he responded. "I don't know. It would be hurting patients if they don't."
When asked, "What is the cost of Delay?", Dan said, "Patients living or dying. Patients suffering unnecessarily."