For Years, Governor Ignored Pleas by Patients and Advocates to Work Together on Legislation
Outraged Patients and Families Demand Governor to Stop Playing Politics With Peoples Lives; Senate Should Vote Immediately
Albany – Today Governor Cuomo leaked to the media his list of changes he wants made to New York’s comprehensive medical marijuana bill – the Compassionate Care Act – before he’ll support it. The full list of changes – obtained by advocates – includes many demands already addressed in the current legislation. Additionally, bill sponsors have already agreed to make a number of changes to satisfy the governor. But the list includes “poison pills”, like eliminating serious conditions, including Alzheimer’s, ALS, and muscular dystrophy, and preventing cancer patients and those living with HIV/AIDS from using medical marijuana to treat the side effects of their medications and chemotherapy, such as nausea, wasting, and pain associated with those treatments.
The governor wants to eliminate post traumatic stress disorder (PTSD) and traumatic brain injury – conditions which affect veterans at high rates and for which medical marijuana is beneficial. He also wants to eliminate any timelines for implementation and add a sunset clause to the bill, despite the fact that the legislation already gives the governor nearly full control over the entire program.
Negotiations between the Governor’s office, the Senate and Assembly only began at the end of last week — just days before the end of the legislative session on June 19th. Although the bill amendments must be filed today if the bill is to pass this legislative session, the Governor’s office has yet to provide any specific amendment language to the bill sponsors. Instead of providing that language, Cuomo publicly attacked the proposal – making it clear he is not negotiating in good faith.
Patients and families are alarmed by Cuomo’s actions. Over the last two years, Compassionate Care NY – a coalition of patients, caregivers, healthcare providers, and dozens and dozens of endorsing organizations – has held numerous meetings with the Cuomo Administration staff to explain the details of the Compassionate Care Act and solicit input. Despite these efforts, the Executive never suggested amendments, and the Governor consistently refused to meet personally with a single patient or family member from the group.
“I’ve been calling and writing Governor’s Cuomo’s office daily for months and months and months,” said Susan Rusinko, a mother from Auburn living with multiple sclerosis. “Why didn’t he start looking at this legislation when we asked him to two years ago? I’m appalled that, not only has he refused to meet with a single patient or caregiver from the coalition, now, at this late hour, he has issued a series of proposed changes — many of which are already addressed in the bill — and others which would make the program unworkable. This bill has been carefully crafted with strict controls, so it’s hard to understand why the Governor is demanding these changes now unless he was just playing politics.”
“I knew Governor Cuomo was a reluctant supporter of medical marijuana, but I didn’t know he was outright cruel,” said Nancy Rivera a four-time cancer survivor. “What kind of leader denies cancer patients relief from chemotherapy? When I was being treated for cancer, I lost 40 pounds due to wasting, and medical marijuana could have really helped me. I can’t understand why our politicians would be so heartless and deny people like me access to medication that could help, especially when healthcare providers and 88% of New York voters support medical marijuana for seriously ill patients.”
“I was appalled when I heard that Governor Cuomo wanted to eliminated PTSD and traumatic brain injury from the list of eligible conditions,” said Sgt Mark DiPasquale USMC Medically Retired, a veteran from Rochester NY, a OIF Combat Veteran, 2005-2007, and served from 1994-2010. “Our service men and women come home from serving their country with wounds of war and then are denied access to the very treatment that could help them heal. Governor Cuomo should be ashamed of himself for denying veterans this needed medical care.”
"I was completely shocked and utterly disgusted when I heard that Governor Cuomo wanted to eliminate PTSD and traumatic brain injury from the list of eligible conditions,” said Amy Rising, a veteran of the Air Force from Ithaca. "With the VA failing us, Gov. Cuomo has a unique opportunity to provide relief from war ailments. We are being denied access to the very medicine that is the only one addressing the problems that PTSD causes in the endocannibinoid system. With one of the highest active duty suicide rates in the country due to PTSD, Governor Cuomo should be ashamed of himself for not supporting veterans and denying this vital medical care.”
Governor Cuomo has expressed concerns that the bill does not go far enough to prevent diversion, but on Sunday, GOP Attorney General candidate, John Cahill, said he supports the Compassionate Care Act (CCA), noting that “The CCA is crafted to strike the balance between compassion and control.” Attorney General Schneiderman reiterated his support for medical marijuana legislation on Sunday as well. Last week, the Gordon Warnock, head of the State Troopers Police Benevolent Association said his group was comfortable with treating medical marijuana like a prescription medicine, which the CCA does. In fact, under the CCA, medical marijuana would be more tightly regulated than any other prescription medicine, including narcotics such as Oxycontin.
The Governor’s office also proposed a series of changes to the bill that would create barriers for patients and put bureaucrats in charge of healthcare decisions. For instance, Cuomo would require that physicians recommending medical marijuana must be pre-approved by the Department of Health (DOH) and give DOH the ability to over-ride the recommendations of physicians participating in the program in regards to dosing and mode of administration.
Sunil Aggarwal, MD, PhD, Co-chair of NY Physicians for Compassionate Care, a group representing more then 600 New York physicians said: “Governor Cuomo is proposing unprecedented interference in the doctor-patient relationship and erecting so many barriers to participation in the medical marijuana program that few, if any, physicians will take part. There is no other medication for which DOH is allowed to come in and abridge the authority and particulars of a physician’s recommendation to his or her patient.”
Among the Governor’s other recommendations was restricting the number of manufacturers to five and the number of dispensaries to twenty for the entire state.
“Is the Governor kidding?” asked Brian Kuprian of Little Falls, who broke his back in two places following an industrial accident and now suffers from severe intractable pain. “What is the likelihood that one of the few distribution centers for the entire state of New York is anywhere near Little Falls? Am I supposed to travel across the state with my severe back pain to get the medicine I need? It’s like Governor Cuomo is dangling hope in front of us only to snatch it away when we need it most.”
The Governor also proposed a ban on smoking medical marijuana, even though longitudinal studies have shown that there is no increased risk of lung cancer and smoking is the most economical and most effective mode of administration for some patients. The Governor’s own medical marijuana research program relies on smokable marijuana as does the federal governments’ compassionate use program. The Compassionate Care Act prohibits smoking for patients under 21, bans smoking in public, allows landlords and employers to restrict smoking by medical marijuana patients, but allows some patients to smoke medical marijuana in the privacy of their own home, unless their physician advises against it.
“The Compassionate Care Act appropriately leaves the decision about how medical marijuana should be administered up to healthcare providers,” said Holly Anderson of the Breast Cancer Coalition of Rochester. “For some patients, smoking is the fastest way to get relief and the easiest way for them to titrate their dose so that they are not getting more medicine they need. And, unfortunately, vaporizers are expensive and out of reach for many patients. The bill sponsors have taken several steps to address the concerns about smoking, but by eliminating smoking entirely, Governor Cuomo is proposing that we leave many patients behind – like those who are low income, and many breast cancer patients. That’s just not fair. We are not sure who advised the Governor about his "concerns" but he clearly did not speak to patients and/or those who love and support them. After repeatedly requesting input from the Governor since January, the fact that the Governor is finally presenting his concerns during the last week of the legislative session is unacceptable, infuriating and, frankly, disgusting. The citizens of New York understand what's happening here and we will not stand for it."
Several other healthcare and public health groups – including, the New York State Breast Cancer Network, GMHC, Housing Works, Capitol Region Area Action Against Breast Cancer, Multiple Sclerosis Resources of Central New York, BOOM!Health, and Southern Tier AIDS Program -- have written letters to legislative leaders asking them to leave the decision about the mode of administration up to the recommending physician because of their concerns about the long-term health effects of vaporizers and/or needlessly excluding low income patients.
The Compassionate Care Act has passed the Senate Health Committee and been discharged to the Rules Committee, the final committee before it goes to the floor for a vote. The bill has passed the Assembly by a wide margin five times. The bill sponsors, Assemblyman Gottfried and Senator Savino, have amended the bill four times this session to address the concerns of the Governor and their colleagues in the legislature. The bill has broad bipartisan support, and the bill has enough votes to pass the Senate if brought to the floor for a vote.
“We had hoped that Governor Cuomo was negotiating in good faith,” said Missy Miller of Atlantic Beach, a mother of a child with a severe seizure disorder. “After getting this close to passing the bill, I am BEYOND distraught to learn that he appears to be just playing politics with my son’s life and the lives of so many other seriously ill New Yorkers. This isn’t politics for me and my family! It literally is a matter of life and death – each seizure my son, Oliver, has could be his last. I implore Governor Cuomo to have some mercy and support the Compassionate Care Act. If he does not allow this to pass this year, he is signing my son's death certificate! Figure it out BEFORE it is too late for my son! PLEASE listen to your constituents!"
“Anyone familiar with medical marijuana systems in the U.S. knows that the Compassionate Care Act is among the most tightly-controlled and regulated proposals ever considered,” said gabriel sayegh state director of the Drug Policy Alliance. “Some of the concerns raised by the governor are already addressed in the legislation, and the bill sponsors have agreed to address even more, so why isn’t the Governor negotiating in good faith with the bill sponsors? New Yorkers are suffering – rather than playing politics, the governor should work with the legislature to pass the CCA and provide relief to patients and their families.”