Syracuse, N.Y. - Donna Romano would like to swallow marijuana oil to treat her multiple sclerosis and seizure disorder.

Romano could buy it if she lived in Colorado where the drug is legal and available in many different forms. But that's not an option in New York where marijuana is still illegal and possession of small amounts is a low-level violation subject to a fine. So the 58-year-old Syracuse grandmother gets marijuana from a "friend of a friend of a friend." She's been smoking it for the past three years to stop uncontrollable leg spasms that make it difficult to sleep and ease other MS symptoms.

Romano says she and others with chronic illnesses want marijuana so they can function, not to get high. She said many people with pain are looking for alternatives to prescription painkillers.

"People don't want to be lying on the couch, drooling from Oxycodone," she said. "We want a medication that can help us live our lives. I have grandkids. I want to be active with them. Is there something so wrong about that?"

Efforts to legalize marijuana in New York have gained momentum since Gov. Andrew Cuomo announced a proposal earlier this month to make pot available on a limited basis to people who are seriously ill. Critics of Cuomo's proposal say there's limited scientific proof pot safely and effectively treats all the ailments for which people take it. They also say other approved prescription drugs often work better. But proponents of medical marijuana say there's plenty of evidence it works and is safe.

How many New Yorkers will use medical marijuana is anyone's guess



It is impossible to accurately estimate how many sick New Yorkers may use the drug if it is legalized, said Julie Netherland of the Drug Policy Alliance, a group pushing for legalization in New York.

Julie Netherland of the Drug Policy Alliance

A bill in the state Legislature

that would legalize medical marijuana says "thousands" of New Yorkers would benefit from the drug. In states where medical marijuana is legal, the number of patients using it varies widely because some state's policies are more restrictive than others. On average, .77 percent of the population in states where it is legal use or are registered to use medical marijuana, according to ProCon.org, a nonprofit research group.

If applied to New York state, that percentage translates into 150,689 patients statewide, 5,702 of them in Central New York. That crude estimate could be way off the mark. Under Cuomo's approach, the numbers might be much lower. His plan calls for up to 20 hospitals statewide to provide marijuana to patients with cancer, glaucoma and other diseases who are in life-threatening situations. Critics of Cuomo's plan say it would exclude many patients, including children with severe seizure disorders.

What does the scientific evidence show?



There is very little scientific evidence that shows how marijuana works as a medicine, according to Margaret Haney, a professor of neurobiology in psychiatry at Columbia University who has been studying marijuana for 15 years.



Margaret Haney, Columbia University professor and marijuana researcher

The evidence clearly shows marijuana can improve appetite and decrease nausea in people with HIV and cancer undergoing chemotherapy, she said. That evidence convinced the Food and Drug Administration in 1985 to approve Marinol, a pill that contains the synthetic version of THC, the active ingredient in marijuana.

There's also evidence suggesting marijuana can provide mild pain relief, according to Haney.

But there's little or no scientific evidence to support many of the other medical applications of marijuana that are being touted, such as a treatment for seizures in children, Haney said. A lot more research is necessary, she said.

"A lot of people are using it and thinking it's going to help with everything," she said. "I'm not anti-marijuana. I think it has tremendous potential. But marijuana is the only drug that has completely skipped over all the procedures we have in place to determine if something is a medication or not."

When it comes to marijuana, many people do not consider the importance of the placebo effect, she said. The placebo effect happens when you decide a medicine will make you better and your belief makes it so, even if the medicine is nothing more than a sugar pill. Placebos have been shown to work in about 30 percent of patients.

"If you are told a plant you smoke will help, we know that if often does help," Haney said. "There's a blind acceptance of the potential for marijuana without understanding how carefully we have to control for the expectation it will work."

Research shows marijuana use can have negative effects on the developing brains of teenagers, Haney said.

"Is marijuana worse than alcohol? Probably not," Haney said. "I think alcohol is tremendously problematic behaviorally, but that horse is out of the barn. But marijuana is not utterly benign, which is the way it's often portrayed."

It's the job of the Food and Drug Administration, not politicians and voters, to decide whether a drug is appropriate to use as a medication, she said.

What's the harm?

Dr. Gene Tinelli, an addiction psychiatrist from Jamesville and long-time advocate of legalizing marijuana, agrees that there has not been enough research done on medical marijuana. He said the federal government is to blame for much of that because it does not provide marijuana, grown by the federal government in Mississippi, to many researchers.

"To do research well requires a source of marijuana that is reliable," he said.

Dr. Gene Tinelli, addiction psychiatrist

But he said there is some research showing marijuana may be helpful in treating MS, inflammatory bowel disease, migraine headaches, fibromyalgia and other conditions. He said marijuana is so safe there's no harm in making it available to patients.

"Show me one person who has died from a marijuana overdose. There's none," Tinelli said.

Dr. Judy Setla, medical director of Hospice of Central New York, opposes the idea of legalizing medical marijuana in New York state. If it is legalized, she fears doctors will be besieged by patients seeking certification to get medical marijuana they can use recreationally, a situation that happened in California after it became the first state to legalize medical marijuana in 1996.

"I have no interest in having marijuana become something that I as a physician have to regulate," she said. Setla said doctors already spend too much time regulating patients' prescription painkillers.

Setla said she has no problem with the state decriminalizing or legalizing marijuana, but does have a problem with the state treating marijuana as a medicine.

"This is not a wonder drug from the perspective of those of us who treat pain," Setla said.

Dr. Judy Setla, hospice medical director

Marinol, the synthetic version of marijuana, is not the top choice of doctors looking for drugs to treat nausea and loss of appetite in chemo patients, she said. Many patients do not like it because it can create feelings of euphoria, she said. There are much better drugs available to treat those problems, according to Setla. "I prescribe it a few times a year when everything else fails," she said.

The long-standing policy of the Medical Society of the State of New York is that medical marijuana should be available to people who are dying, said Dr. Sam Unterricht, president of the doctors' group. He said the group would like to see a lot more research.

Annette Simiele, associate director of Multiple Sclerosis of Central New York, a group that supports MS patients, said many of her clients use marijuana by vaporizing it, eating it in food or smoking it.

"Clients tell us, 'Cannabis (marijuana) gives us instant relief without all the side effects of other drugs,'" Simiele said. "Unfortunately they are driven to the street to get it. They shouldn't have to run the risk of arrest and prosecution because they are seeking relief from an illness."

One patient's wish

Romano would like to get marijuana oil tailored to her symptoms. "I don't want to smoke it," she said.

Donna Romano would like to be able to take marijuana oil for her multiple sclerosis symptoms.

Romano has had a seizure disorder for 24 years and MS for 16 years.

MS is a disease that involves an immune system attack against the central nervous system. MS can cause blurred vision, loss of balance, poor coordination, slurred speech, tremors, numbness, extreme fatigue and other problems. There are drugs available to slow down the course of MS, but no cure.

Romano turned to marijuana after taking steroids and many other prescription medications for years. Romano said some of those drugs were not effective and have harmful side effects. She decided to try marijuana after hearing from other MS patients how the drug helps them.

"I was getting tired of the stiffness in my leg muscles, the burning in my feet, the pain in my neck and the other symptoms," she said. Romano says marijuana has helped ease those problems.

"I just want to make sure people know we are not drug addicts, looking to get high," she said. "We want to use a medication that will ease our symptoms so we can live our life. That's the bottom line."

Related stories:

Parents give marijuana oil to children with seizure disorders

Hospitals would distribute marijuana under Cuomo's plan



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You can contact health writer James T. Mulder at jmulder@syracuse.com or (315) 470-2245. Follow him on Twitter @JamesTMulder.