on March 2, 2014 - 6:48 PM
ALBANY – Wendy S. Conte, of Orchard Park, returned from Colorado a few weeks ago after renting an apartment there, getting a Colorado driver’s license and setting up residency.
“Officially, I’m a Colorado resident,” she said.
The reason for Conte’s new residency has nothing to do with frequently heard reasons for the New York exodus – evaporating job opportunities, high taxes or weather.
She took up the new residency so that her 8-year-old daughter, Anna, who suffers from lifelong debilitating seizures, can get access to that state’s medical marijuana program.
Parents such as Conte from across New York are turning elsewhere, especially to Colorado, so that their children who suffer from rare disorders can obtain an oil-based marijuana treatment. Their hope is that the treatment offers better relief and fewer side effects than traditional medicines.
While New York continues at a slothlike pace to permit medical marijuana, Colorado is one of 20 states and the District of Columbia that have legalized marijuana for certain medical patients with a doctor’s permission. In Colorado, the waiting list is so long to get access to an unusual strain of marijuana that Conte is biding her time back in Western New York until her daughter’s treatments can start in October.
The marijuana that she wants for her daughter is not smoked and even lacks the compound that gets people high. “We’re on the waiting list, and we’re just waiting for our plants to grow,” Conte said.
Although anecdotal evidence suggests benefits from medical marijuana, some physicians and others say that more research is needed before it can be embraced as a treatment. Critics also say medical marijuana could fall into the black market, lead users to more dangerous drugs and is a slippery slope, as seen in Colorado, to full legalization of the drug for recreational use.
But if New York does not act before this fall to permit children such as her daughter to get access to medical marijuana, Conte says, the plan is for her to move with her children to Colorado while her husband remains in Western New York to sell his business before joining the family.
Conte is not alone, as other New Yorkers have either made the move or are planning similar relocations if Gov. Andrew M. Cuomo does not agree to amend his recent medical marijuana proposal to allow children access to the same type of marijuana that is available in Colorado.
Waiting lists in Colorado
The type of marijuana that has interested many parents is called Charlotte’s Web. It has low tetrahydrocannabinol, or THC, the compound that gets marijuana users high, and high cannabidiol, or CBD, which advocates say can reduce incidents of seizures when taken its liquid, gel or paste form.
The Colorado not-for-profit group that is offering it as treatment has a patient caseload limited by its ability to supply that type of marijuana. It was named after a young girl who last year showed signs of improvement from her seizures after using the drug.
The group offering the treatment, Realm of Caring, has reported long waiting lists and ever-growing interest from parents across the country. The Colorado Springs group serves just 318 patients, 202 of them children. And there is a waiting list of 3,212 patients from all 50 states and 54 countries, according to a spokesman for the group.
Word of the program there has quickly spread through networks of parents with children suffering severe seizures. In all, 100 patients have relocated to Colorado from 40 states and two countries to get access.
Don Burger is among those who heard about Charlotte’s Web and has relocated his family from New York to Colorado.
The 34-year-old owner of a small construction company grew up in Queens and has lived in Lindenhurst, Suffolk County. He moved his family to Colorado in December to get access to the marijuana for his 8-year-old daughter, who at her worst suffered more than 5,000 seizures in a day and spent 14 days in a medically induced coma.
“I couldn’t wait, because if she got bad again, she could die,” Burger said of his decision to start over in Colorado Springs and move into a rented apartment with his daughter, son and wife. His wife gave up her job as a music teacher at a Long Island public school.
Burger and his wife had been through the medical maze, seeing specialist after specialist and trying every assortment of known treatments for seizures. Doctors in New York had recommended more surgery, removing two small sections of his daughter’s brain to try to slow a condition that left her unable to speak and subject to violent seizures that stop her breathing.
That surgery was too drastic of a step, he said, and not reversible. So Burger began looking at alternatives, settling on Colorado and its medical marijuana programs.
Three times a day since the day after Christmas, Burger’s daughter has been getting the marijuana treatment, which is mixed with olive oil to make it more liquid and then placed under her tongue. Treatments, not covered by insurance, cost about $250 per month.
There has been some initial optimism about the treatments, but Burger said in an interview a couple of weeks ago that it will take more time to determine the full effects, as he keeps his daughter on her existing regimen of medications while they introduce medical marijuana.
“She does not get high at all. The only side effect I’ve really noticed is she’s gained an appetite. That’s a good thing,” Burger said.
After initial Charlotte’s Web treatments, Burger said his daughter appeared more alert and started saying some words. “She said ‘apple’ the other day,” he said. “She’s saying ‘hi’ and going to preschool.”
Cuomo plan is like ’80 law
Medical marijuana, in some form, is coming to New York. The issue is how comprehensive a program, and how quickly. It is an issue that advocates are hoping to get inserted into the state budget that Cuomo and lawmakers hope to pass before April 1.
The governor, after opposing medical marijuana for three years, said this year that he is open to the idea, but only on a limited basis that relies on getting marijuana either from a federal program or through drugs confiscated by police.
Police agencies say that is a bad idea because unknown compounds sometimes are found in pot sold on the streets.
The Cuomo plan is based on a 1980 medical marijuana law approved in New York but never implemented over the decades. Some lawmakers, as well as parents of the children suffering seizures, say the Cuomo plan is too limited, will not offer the special types of marijuana to treat seizures and will be available only to a minority of patients.
“That doesn’t help us,” Conte said of the Cuomo plan that will not help parents get the type of marijuana their children need.
Cancer patients, meanwhile, have said they want a broader marijuana measure, as pending in the State Legislature, to help with a variety of problems, including appetite loss during chemotherapy. Those who suffer chronic pain from various health conditions say marijuana would be a less addictive, less dangerous and cheaper alternative to traditional painkillers.
Meanwhile, an increasing number of past Senate opponents have been warming to the medical marijuana idea as they meet people who have cancer, AIDS or chronic pain, as well as the parents of children who suffer from the rare and debilitating seizures, sources at the Capitol said.
Medical marijuana was debated in a closed-door meeting last week among Republicans who partly control the Senate and have been the blocking force to a medical marijuana law.
While that debate goes on in Albany, parents in the Buffalo area and across the state weigh the options of staying or leaving.
“Time is of the essence. I don’t want to have to wait another day, let alone another year,” said Mary Tallarico, who lives in the Town of Niagara and whose 9-year-old son, Antonio, has Lennox-Gastaut syndrome, a severe form of epilepsy that can cause hundreds of potentially life-threatening seizures in a single day.
“I don’t want to get to the point where we have to feel like we have to leave the state,” she said. “This is where we live. … This is home. We don’t want that to have to be an option.”
For years, her son has been on traditional drug therapies for his seizures, many of which have their own dangerous side effects and, she said, do not control his health issues effectively.
Now doctors are telling patients and their families about the options in Colorado.
A neurologist suggested to Mark “Buc” Williams of Lockport that he get his 8-year-old son, Tommy, to Colorado to try the medical marijuana being offered there. Like Conte, he has signed on to the waiting list for access to the drug later this fall.
“The biggest problem is, people think an 8-year-old is going to smoke a joint, which they don’t,” Williams said. “They can’t get high off it, and there is no street value to the product.”
But it is illegal in New York, although members of one upstate family, speaking on condition of anonymity, said they have obtained the drug and brought it home to give to their child.
Williams said his family does not want to move. He and his wife have jobs, family and friends. But if New York does not act soon, he said, he will likely move – perhaps just himself and his son – to Colorado this fall to get him the treatment.
“It’s pretty basic. We just want our children to live and have a better quality of life, and we’re out of options,” Williams said.
Capitol meetings set today
Williams, who owns an audio and video production company, in February was close to deciding to move quickly to Colorado to get medical marijuana treatments for his son, based on the advice of doctors. But like Conte, he said it would be October before he could expect the drug to become available at the Colorado Springs not-for-profit that makes it available.
In the meantime, Williams and the other parents say they are going to make one more pitch for Albany to act.
Sen. George D. Maziarz, R-Newfane, has set up meetings at the Capitol today with Williams and other parents and Republican senators either opposed or on the fence on the medical marijuana issue.
The parents will lobby lawmakers to pass a more sweeping measure than the Cuomo program, for which there are few details.
“It seems that one of the biggest arguments is that this is a gateway drug,” Williams said. “How is it a gateway drug when it’s basically going to terminally ill people or people in terrible pain? We’re not asking for it to be recreational.”