Human faces of suffering key to medical marijuana law

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Diagnosed with metatastic cancer in 2005, Sue Nill Kidera challenges the notion that living with cancer means merely surviving.

“I am the new face of a cancer patient,” Nill Kidera said during a recent panel discussion on medical cannabis. “I not only survived, I thrive. I live a life … I do a lot of things to treat my disease. I take time off. I do things I want to do.”

Nill Kidera, who is preparing for another round of chemotherapy, was among those who advocated for passage of the Compassionate Care Act. Signed in July, the new law allows the use of marijuana for medicinal purposes under strict guidelines.

It’s not what everyone wanted or needed, according to a group of cancer survivors, state legislators, a doctor and advocacy group members who discussed the legislation and the next steps. But the panel discussion also showed how a movement of advocates like Nill Kidera opened eyes in Albany.

Panelists also provided a fascinating look at the history of cannabis. It was used for a variety of medical purposes in ancient China, Greece and Rome but it became known as the “evil root from hell” in the United States thanks to the infamous “Reefer Madness” film and a supposedly temporary government label as a controlled substance that endures.

A bad name

Since the first recorded use as a medical drug in China from 2900 to 2700 B.C., cannabis has been applied to a host of ailments, including glaucoma in Egypt, and sexual disorders in China, Greece and Rome, according to Dr. Luke Peppone of the University of Rochester Medical Center.

Cannabis was brought to the United States with the colonists. The plant was used to make hemp rope and in other industrial applications. In the 1930s, the use of synthetic drugs reduced the demand for medical cannabis. The Marijuana Tax Act, enacted in 1937, effectively outlawed the drug, although it was still OK to prescribe it, Peppone said.

“But a high burden was placed on doctors,” Peppone said.

Marijuana – the name change was a propaganda attempt as part of the prohibition movement – was given a Schedule 1 designation as part of the Controlled Substances Act in the 1970s. President Richard Nixon’s administration rejected a move to remove the designation, and the implications of a drug described as having “little or no medical use” hampers research.

“That automatically stops most research in its place,” Peppone said.

The advocate’s role

Those who value cannabis’ potential use to treat pain, nausea, anxiety and other side effects of chemotherapy and other cancer treatments looked to studies in other countries to make their case, according to Marianne Sargent, advocacy chair of the Breast Cancer Coalition.

Holly Anderson, executive director of the coalition, said the group first looked at possibly supporting legislation in 2004.

“We were concerned about the perception of cannabis and its links to recreational use and abuse,” Anderson said.

The few studies available showed some relief for patients, particularly those suffering from nausea as a result of cancer treatments. Stories of survivors and their family members helped sway the doubters.

“This was a piece of legislation that was important,” Anderson said. “We’ve learned so much and we began pursuing this legislation.”

Among the doubters were state legislators, including state Sen. Ted O’Brien, D-Irondequoit, who says there was initial hesitation on his part because of preconceived notions he brought to the issue, in part because of the smoking aspect. The more he met with advocates, including Nill Kidera, the more he learned, O’Brien said.

State Sen. Joe Robach, R-Greece, said advocacy won the issue, resulting in state legislators approving legislation in June.

“It really put such a human face and touch on this issue,” Robach said. “In government, you have to strike a balance. I also heard — that was very compelling — from parents talking about children who at a young age, the gateway drug was marijuana. There was some give and take. I think that’s normal with any bill. At the end of the day, the right thing happened.”

What the law left out

A patient who has been certified by a healthcare provider to use medical marijuana must register with the state Department of Health. Specifically approved organizations, including hospitals or community health centers, will be able to dispense medical marijuana to the registrants, under supervision.

A host of qualifications are necessary – for the doctor and patient – and right now, several severe debilitating or life-threatening conditions, including cancer, AIDS and Parkinson’s disease, are covered. Others may be added by the commissioner of health over time, or, as some fear, not added.

The commissioner also has control over allowable forms of medical marijuana, such as oils and edibles, and the strain, variety, strength and consumption.

Smoking as a method of consumption is excluded as a certified medical use, although many say smoking cannabis provides the most benefits for the patient. The legislation also covers fees, labeling requirements, advertising, cost and taxation.

Establishing a program is supposed to take no longer than 18 months, but many fear patients do not have the luxury of time.

“The work of implementation of the program has barely begun,” Sargent said.

The legislation, in some ways, is a disappointment because there are some cases of children who suffer from severe, life-threatening seizures who are not eligible, said Dr. Julie Netherland, deputy state director of the Drug Policy Alliance and member of the Compassionate Care NY campaign.

Two have died recently from seizures when the use of medical marijuana could have helped, Netherland said. A continuing effort to lobby for interim emergency access is under way.

“It is absolutely critical that we get medicine for these critically ill children,” Netherland said.

In states where medical marijuana is allowed, there is a corresponding decrease in the number of overdose rates for painkillers, Peppone said. Time will enable researchers to conduct credible studies.

“So much research is needed,” Peppone said.

The speakers agreed that the legislation is only a first step. Speakers urged for more public advocacy with the goal of a strengthened and improved law, which will lead to improved lives of seriously ill people.

Quality of life is a huge issue for cancer patients, Nill Kidera said, and the law needs to help more people find it.

“I was elated when it was going to pass but I was really disappointed when the list was so short of the number of conditions,” she said. “I really hope people are going to step forward and spread the word out there that this is a tightly, tightly regulated piece of legislation. It really is up to us to bring to bear there are many, many other conditions and myriad of other serious illnesses that medical marijuana can address.”