As parents of disabled and deceased children told heart-rending stories Monday, Sen. Kirsten E. Gillibrand had to stop and compose herself.
The emotional pain that the families of brain-impaired children recounted would not be necessary, she told a news conference at Dent Neurologic Institute in Amherst, if medical marijuana were available like other regular prescription drugs.
But because the federal government still looks upon the substance as a harmful and illegal drug akin to heroin and LSD, even where it’s legal, Gillibrand said, more children with neurological disorders will continue struggling with damaging daily seizures.
“These laws are ignorant of the health benefits of medical marijuana,” she said. “It’s really a case of ideology getting in the way of medical science.”
The Democratic senator from New York is now working on a bipartisan basis with several colleagues to first ask the Department of Justice to change its view of marijuana as a harmful drug, especially in light of New York and 22 other states legalizing various forms to treat epilepsy and other neurological disorders.
Gillibrand said Monday that she will push for a new bill already enjoying bipartisan support that would amend federal law and allow states to set their own medical marijuana policies.
The law would not legalize marijuana, she emphasized, but would “respect” the states that establish their own medical marijuana programs, and prevent federal law enforcement from prosecuting patients, doctors and caregivers.
“These families are not just afraid of prosecution,” she said, “they’re really afraid of Children’s Services knocking on their doors to take their children away.”
As the parents of neurologically disabled children attending Monday’s event told their stories, Gillibrand said the federal government should recognize the value of cannabis in easing seizures. It is time, she added, to allow affected families to travel to states like Colorado and return with marijuana oils that doctors say help relieve symptoms and help children thrive.
One of those parents, Lisa Valle of Grand Island, attended the event with her daughter, Maya. The 7-year-old was born with a genetic neurological disorder marked by frequent debilitating seizures. As Maya fussed a bit from her wheelchair, her mother estimated she has suffered more than 1,000 seizures since Gov. Andrew M. Cuomo signed a law last July making some forms of marijuana legal in New York for medical purposes.
If she could benefit from oils derived from cannabis, Valle said, the frequency of seizures would diminish and Maya’s quality of life would vastly improve.
“It’s inhumane for Maya’s seizures to be ignored any longer,” she said, adding that marijuana remains a far safer alternative than some legal anti-epileptic drugs.
Other speakers included Buc Williams of Lockport who attended with his son, Tommy, and Wendy Conte of Orchard Park, whose daughter, Anna, died last July from her chronic neurological condition just days after Cuomo signed New York’s new law. Her family had even taken steps to move to Colorado, where marijuana is legal, to seek the oil derivatives that she said would have helped Anna.
She is convinced, she said, that obtaining marijuana oils to relieve her daughter’s seizures would have helped save her life had they been available.
Children such as her daughter, she said, “are casualties of a failed system.”
“Even though our Anna was not able to benefit,” Conte said, “I strongly believe this will help other families from experiencing the worst kind of loss – the loss of a child.”
Gillibrand’s effort is so far supported by other senators such as Democrats Corey Booker of New Jersey and Barbara Boxer of California, as well as Republicans Rand Paul of Kentucky and Dean Heller of Nevada.
It also received support on Monday from Dr. Laszlo L. Mechtler, the Dent Neurologic Institute’s medical director.
“Doctors must have the authority and respect in order to be true advocates for our patients,” he told reporters.
Gillibrand, meanwhile, said she is “optimistic” about the chances of success for her bill.
“We need to modernize our laws,” she said. “There are too many stories like the ones from those standing here today.”