At the first sound of distress, Mark “Buc” Williams of Lockport can leap out of his chair like a lightning bolt when his son Tommy has a seizure.
There isn’t anything he and his wife Patrice wouldn’t do to help their son, so they spent several years lobbying for the New York Compassionate Care Act legalizing medical marijuana that could control Tommy’s life-threatening epilepsy. The act was passed in 2014, but implementation has been slow and the product remains cost prohibitive.
The leafy herb available from Some Guy around every corner for a small price is not for sale in state medical marijuana dispensaries. Instead, a 25 mL bottle of oral solution with 62.5 mg of the ingredient delta-9-tetrahydrocannabinol (THC) costs $337. An ounce of medium grade pot sells for less than half that.
One thing hasn’t changed with pot: Only cash is accepted at New York’s state dispensaries. Medical marijuana is not covered by health insurance.
Parents like Sarah Newton of Lancaster say medical marijuana is essential because anti-seizure medications have “horrendous” side effects. Her daughter Olivia was on 28 prescription drugs for epilepsy. Newton said the drug Onfi made Olivia scream from ringing in her ears. Olivia died of a seizure at age 3, just days before medical marijuana legislation was signed.
“We are fighting for our child’s lives, and I don’t think people understand that,” Newton said.
But the drug that she, the Williamses and other Western New York parents fought for remains unattainable due to a complex set of regulations that have created price, supply, distance and time barriers for patients and caregivers.
Since passing the Compassionate Care Act, the state took more than a year to open dispensaries and only five strains of marijuana will be available in liquid products.
With their certified caregiver and patient identification cards in hand, the Williamses contacted area dispensaries on Feb. 3 to locate the medical marijuana products prescribed for Tommy. They said the dispensaries in Williamsville and Amherst did not have the correct products and were waiting for the necessary plants to mature. They finally located the correct product at a dispensary outside Binghamton, and Patrice Williams drove four hours to make the purchase.
After entering through multiple security doors, Patrice met with pharmacists and received Tommy’s starter prescription for $337. Staff informed her that when Tommy reached his proper dosage level, the drug would cost $2,000 a month.
“I don’t know any working family that has an extra $1,000 a month,” Buc Williams said. “It’s the only medicine I’ve ever heard of where the state sets the price. It’s not an open market where there’s competition.”
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Access to medical marijuana in states where it is legal can be complicated by the drug remaining illegal at the federal level, according to Julie Netherland of the Drug Policy Alliance in New York City. President Obama’s administration has indicated it will not interfere with state efforts to make the drug available, she said, as long as it is well regulated.
Despite this, and the fact that it is prescribed by a practitioner as a treatment for disease, medical marijuana is not covered by health insurance programs in New York.
Newton finds this baffling after her daughter received the anti-seizure medication Sabril with the possible side effect of permanent vision loss. Health insurance covered it at a cost of $6,200 a month.
The lobbying group New York Physicians for Compassionate Care says on its website that “a growing body of scientific evidence, including gold-standard randomized, double-blinded, placebo-controlled trials, has made clear that medical marijuana is safe and effective in controlling chronic pain, alleviating nausea and vomiting associated with chemotherapy, treating wasting syndrome associated with HIV/AIDS, controlling muscle spasms due to multiple sclerosis, and managing epilepsy.”
Requests to the state Department of Health for an interview for this article, and a list of registered providers, were acknowledged but no response was provided.
The Office of National Drug Control Policy states that marijuana can affect heart and respiratory functions, and is linked to mental health problems and lower IQ — all debated by users and health professionals.
Nabiximols, a pharmaceutical drug with properties of marijuana, is used in other countries to treat cancer pain and muscle spasms, but is not approved in the U.S. The American Cancer Society says some research indicates cannabinoids, drugs processed from marijuana, may slow growth and reduce the spread of some types of cancer in animals.
The Epilepsy Association of Western New York is in support of expediting the availability of medical marijuana for the treatment of debilitating seizures in children.
Epileptic seizures are an overwhelming loss of breath and bodily control that terrify patients and caregivers alike.
Tommy Williams had his first seizures at 4 months old, when he developed an allergic reaction to a routine DTaP vaccination. He initially experienced 100 seizures a day and was diagnosed with Lennox-Gastaut Syndrome, a form of epilepsy that causes brain damage.
At 10 years old, Tommy cannot walk or talk and is fed through a gastrointestinal tube. Medications have reduced his daily seizures to about a dozen. An implant provides an electrical pulse in order to stabilize his brain’s electrical activity.
The Williamses learned marijuana could reduce the seizures even more. As New York debated legalization in 2014, Buc and Tommy saw prescribing physicians in Colorado, where the drug was already legal. They were advised that combining marijuana strains with high levels of cannabidiol (CBD) and delta-9-tetrahydrocannabinol (THC) could stop the seizures.
The family explored the possibility of Buc and Tommy relocating to Colorado to receive the treatment, while Patrice would continue to work locally. Because Patrice’s health insurance wouldn’t cover out-of-state residents, relocation was scrapped. The family continued to lobby state legislators and petitioned for an emergency waiver that would allow early access to the drug due to Tommy’s terminal condition. Their requests were denied, and purchasing the drug out-of-state is illegal for New Yorkers.
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All of the numbers reflecting the state’s medical marijuana program are lower than advocates hoped, except the cost. On the official launch date, Jan. 7, 2016, only eight of New York’s 20 planned dispensaries opened, Netherland said. The number is now 16. Some dispensaries open only one day a week. Only five strains of marijuana will be available in products. Only liquid products are available in New York.
“People thought it would be a smooth process,” said Cheryl Best, a clinical social worker at the Epilepsy Association of Western New York, who helps coordinate services for epilepsy patients. “People are having a hard time finding the doctors as well as the product.”
Training sessions to certify prescribing practitioners in New York began in mid-October 2015, according to Netherland, but identifying the practitioners has been difficult. Only physicians can access the list through a secure website maintained by the state Department of Health.
“This has created huge problems for patients who have no way of finding doctors who can help them,” Netherland said.
The Williamses are still waiting for Western New York’s two dispensaries to grow the marijuana they need. But time may be the resource families with seriously ill children have in shortest supply.
“It’s not much of a compassionate care act,” Buc Williams said. “We’re right back to where we started.”