Advocates: Too Few Patients Can Access Medicine Through the Overly Restrictive, Expensive Program
Slate of Bills Would Remove Barriers to Participating in the Program and Expand Patient Access
Albany – Today, dozens of advocates gathered in Albany to urge legislators to support a slate of bills that would amend the Compassionate Care Act, New York’s medical marijuana law. The law, which was passed in June of 2014, took eighteen months to implement and has been criticized for being one of the most restrictive and burdensome programs in the country. Launched in January of this year, to date, only 494 of the state’s 79,000 physicians have agreed to participate and only 2,390 patients have been certified by their doctors to enroll in the program. This lackluster start is likely due to a number of barriers and restrictions in the program that make it both difficult and unappealing for physicians and patients to participate.
“The current law is simply too narrow, with too few registered organizations serving too few patients who need relief,” said Assembly Health Committee Chair Richard N. Gottfried, sponsor of the original legislation. “The changes the Executive made to the legislation and to the program severely limited the program and have made it harder than it should be for patients to access critical medical care. These bills would bring the law more into line with the original bill – broadening the list of eligible conditions, expanding the number of dispensaries, and removing arbitrary restrictions on delivery methods such as smoking.”
The program now allows only ten qualifying medical conditions for which medical marijuana can be recommended, even though medical marijuana can benefit a number of other conditions. Bill A9562 (Gottfried) /S6999 (Savino) would expand the program by adding the following medical conditions: Alzheimer's disease, traumatic brain injury, dystonia, muscular dystrophy, wasting syndrome, post-traumatic stress disorder, rheumatoid arthritis and lupus. Bill A9514 (Gottfried) would add severe chronic pain as a qualifying condition. Research has shown that medical marijuana is not only an effective pain treatment, but that it can also reduce the use of opioids as well as the number of opioid-related overdose deaths.
“I’m living proof that cannabis can help reduce opioid use,” said Jason Pinsky of Brooklyn, New York. “Following spine surgery, I was prescribed over 1000 mg of oxycontin per day. With cannabis, I was able to get off opioids completely, and it changed my life. New York needs to add severe chronic pain to the list of qualifying conditions so that other people can get the relief they deserve.”
Bill A9510 (Gottfried) /S6998 (Savino) would allow nurse practitioners and physicians assistants to certify patients to use medical marijuana the way that physicians currently do. This should help resolve one of the biggest problems to emerge since the launch of the program – the difficulty patients face finding participating doctors.
"My son Oliver requires constant care for his seizures,” said Missy Miller of Atlantic Beach. “Traveling with him to the dispensary will require a nurse to be with us and searching for a dispensary that has the pediatric product that he needs anywhere near us has thus far been futile. And I consider myself lucky that my son's physician was able to certify him. I have heard from so many families on Long Island whose doctors won't take the training course. If they would allow PA's and NP's to do the recommendations, there would be many more patient registrations."
“I’ve been looking for a doctor to help me access the program since January,” said Donna Romano of Syracuse, a veteran and grandmother who has multiple sclerosis. “I fought tooth and nail for this program, and now I can’t even participate because there isn’t a doctor nearby willing to assist me. Adding nurse practitioners and physician assistants would help patients like me get access.”
Under the law, only five producers are licensed to grow medical marijuana in New York, and each can only operate 4 dispensaries. This means that for a state of almost 20 million people and 54,000 square miles, there are only 20 dispensaries allowed of which only 17 dispensaries have opened, to date. Patients, many of whom are very sick and disabled, must travel hours in some cases to get to a dispensary. Bills introduced in Albany would add more producers and dispensaries.
“There are only two dispensaries open in all of New York City right now,” said Reginald Brown of VOCAL-NY, a person living with HIV/AIDS. “There is no dispensary in Brooklyn where I live. It’s absurd to think that two or three dispensaries can serve a city of more than eight million people. I urge the legislature to add more options and to lift these other needless restrictions that are making it hard for people like me to get the medicine we need.”
Making matters worse, under the regulations, each producer is only allowed to manufacture five “brands” or types of medical marijuana and faces strict limits on the forms of medical marijuana they can produce and sell. Currently, some patients have to travel long distances to find the product they need or may not be able to find it all. Few other states with medical marijuana programs place these kinds of restrictions on the kinds of products that patients can access. Bill A9517 (Gottfried) would eliminate these restrictions and allow producers to manufacture and sell a wider range of types and forms of medical marijuana, including whole plant medicine, to meet patient needs.
“The current restrictions on the variety and types of medical marijuana available are ridiculous,” said Susan Rusinko of Auburn, who lives with multiple sclerosis. “I’ve been to other medical marijuana states, and there are dozens of therapeutic strains available in multiple different forms. Patients like me need variety and flexibility so that with our doctors we can figure out what works best to treat our symptoms. And we should have access to the whole cannabis plant, not just extracts and expensive pills.”
Perhaps the biggest problem facing New York’s nascent program is affordability. With the burdensome regulations and the restrictions on who can participate, prices have been high, ranging from $150 to $2000 a month, depending on the product and the condition being treated. Unlike any other state, in New York, the Health Commissioner approves the price of medical marijuana based on the production costs submitted by producers. Prices for similar products in New York are up to ten times higher than those in Colorado according to some reports. Insurance will not cover the costs.
“I live on a fixed income through social security disability,” said Nancy Rivera of Troy, four-time cancer survivor. “I can’t imagine how I would ever be able to afford medical marijuana at these prices. It’s blatantly unfair that relief is out of reach for so many patients just because they aren’t wealthy.”
Although advocates have long argued for the state to establish a charity care pool or to create incentives for discount programs, the Cuomo Administration has declined to do so, leaving medication out of reach for most New Yorkers. While none of the proposed bills address cost directly, adding medical conditions would expand the market and likely drive prices down, and easing up on the forms of medical marijuana available, should allow for lower cost products to come to market.
“New York can do better,” said Kassandra Frederique of the Drug Policy Alliance. “Right now we have an overly restrictive program that is leaving too many people behind – people who can’t travel long distances, people with painful conditions that aren’t currently covered, people who can’t find a doctor to help them, and people who aren’t wealthy enough to afford the exorbitant costs of the medication. We applaud Assemblyman Gottfried and Senators Savino and Rivera for taking the lead on trying to remedy these problems and urge their colleagues in Albany to move quickly to pass these bills.”