Joseph Spector

Westchester

Now Maryanne Houser is pressing Cuomo to do more to get medical marijuana to kids who need it.

"In previous years, I could be patient and wait because Amanda's seizures were better controlled. But watching her seize every day since that bill signing has not only been heartbreaking, it has been infuriating," Houser, of Suffern, Rockland County, wrote in a Journal News op-ed today. "There is a medicine that could potentially help Amanda from having these horrible seizures, and it's now legal in our state, but we cannot access any of it until almost a year and half from now."

The bill Cuomo steered through the Legislature in June legalized medical marijuana, but not in smokeable form. The goal is, in part, to get oils and other forms of medical marijuana to children who suffers from certain diseases.

In Amanda's case, she suffers from a rare type of epilepsy, called Dravet syndrome. Her mother said that a medical cannabis oil made with high CBD and a very low amount of THC had had proven success. But she and other can't get it in New York.

Since Cuomo signed the law, at least three epileptic children whose families advocated for medical marijuana in New York have died.

"By not doing everything in his power to expedite this oil, it makes me wonder if this was just something done to make our governor look good politically or if he truly wanted to help all the people in need of this medicine," Houser wrote.

For his part, Cuomo, at the urging of parents, has tried to speed up the distribution of medical marijuana. Because it would take about 18 months for the marijuana to be grown in New York, Cuomo last month asked for a federal waiver to import medical marijuana from other states for children suffering from epilepsy.

Houser called on the public to contact Cuomo's office at 518-474-8390 "to help us demand expedited access."

Here's the op-ed:

On July 7, I had the honor of not only attending the ceremonial bill signing of New York's Compassionate Care Act, which would provide access to medical marijuana. I was also asked to present a short speech along with my daughter, Amanda. The Compassionate Care law is very important to my family because Amanda has been living with a rare epilepsy since she was 5½ months old.

Amanda has Dravet Syndrome. She has tried eight seizure medications (some were introduced more than once) and has also been on the highly restrictive ketogenic diet for just about eight years now. Currently, despite being maxed out on two medications and strict diet, Amanda has varying seizure types every day. Most days she has absences and/or myoclonic seizures, but she will also have tonic/clonic and complex partial seizures. Most of them are short, but some are long, and all cause some form of brain damage.

July 7 was a fantastic day for our family. It was a day of hope, a day that people would hear me tell them a little bit about Amanda so they could understand how important this bill signing was to our family. Amanda did a great job saying her few lines, and she was thrilled to meet Gov. Andrew Cuomo and Dr. Howard Zucker, the acting health commissioner. Amanda knew these men would be instrumental in getting her medical marijuana, which we have been fighting for since we heard about other children with Dravet syndrome experiencing tremendous success using a special medical cannabis oil made with high CBD and a very low amount of THC (the psycho active component).

It's been over 3 months since that day. What most people don't understand is that we are not receiving this high CBD oil yet. In fact, we are not expected to even try this oil until sometime in 2016. In previous years, I could be patient and wait because Amanda's seizures were better controlled. But watching her seize every day since that bill signing has not only been heartbreaking, it has been infuriating. There is a medicine that could potentially help Amanda from having these horrible seizures, and it's now legal in our state, but we cannot access any of it until almost a year and half from now.

This is where I don't understand politics. Gov. Cuomo and Dr. Zucker, who both spoke with Amanda and me and shook my hand at the ceremony, have the power to expedite access to this medicine. But so far, Amanda and hundreds of other New York children still have no medicine. They specifically asked Amanda and me to speak at this bill signing ceremony. They allowed Amanda to stand next to Gov. Cuomo and even assist him signing the ceremonial bill. He gave her one of the pens he used to sign the bill. Amanda's picture with the governor is now part of history. To me, that day was a culmination of many months of advocating, interviews, lobbying coming full circle. By not doing everything in his power to expedite this oil, it makes me wonder if this was just something done to make our governor look good politically or if he truly wanted to help all the people in need of this medicine.

My wish is that everyone reading this would call Gov. Cuomo at 518-474-8390 to help us demand expedited access.

Before the Compassionate Care Act was passed, I taped Amanda trying to ask" "Governor Cuomo, if I was your daughter, and I had seizures, what would you do to help me?" It took Amanda several tries to get this sentence out because she was having many absence seizures during the time I was taping her. (Consequently, after I taped her, she had a grand mal seizure). Every day we wait for this medicine, Amanda and other children are losing ground and, in some cases, risking death. Gov. Cuomo, a ceremonial bill signing is nice, but Amanda needs access to medical marijuana now.