Robert Celt
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Catherine LaFond-Evans is still fighting to add mitochondrial disease to the list of debilitating conditions that can qualify a patient in New York to be certified for medical marijuana.
In the meantime, she's happy her daughter, Brooke, can try it after months of pleading with state officials.
For Brooke, 32, who can stay awake only a handful of a day's 24 hours, some symptoms of mitochondrial disease include severe nausea, severe pains, muscle weakness, muscle spasms, neuropathies, dysautonomia, which affects the nervous system, and significant loss of gastrointestinal function.
On Friday, LaFond-Evans picked up a month's supply of medical marijuana for Brooke – two brands from Chester-based medical marijuana company Etain's dispensary in Albany. One is called Balance – an equal CBD-THC formulation designed to elicit a moderate euphoric sensation and feelings of well-being.
The other is Forte, a high-THC formulation that produces a strong euphoric sensation with feelings of awareness and appetite.
Their cost was $940 for a month's supply. She will be using the oil droplets. For the initial doctor's visit, the cost was $290. Insurance doesn't cover either.
"I do hope she could come down off the opiods to some degree," LaFond-Evans said. "However much time Brooke has left, our goal is to make her more comfortable."
The irony was not lost on her that she had to drive to Albany to pick up something that was manufactured "in our backyard."
For now, the five medical marijuana companies are only allowed four dispensaries each, and there are rules about how close they could be to each other and the manufacturer.
Etain's four dispensaries are in Albany, Syracuse, Yonkers and Kingston. Etain became fully operational with all dispensaries open at the beginning of April when it opened the Yonkers dispensary. A total of 17 of the 20 dispensaries around the state are open.
It will take some time to get the dosage right, but LaFond-Evans hopes eventually medical marijuana could eliminate some of the many other medications Brooke takes, such as anti-nausea medication, anti-spasmodic medications and what she takes for neuropathy, which is the condition that qualified her.
"That's something I've seen with patients. They tend to use less of, at least their pain medications and anti-spasm medications," said Dr. Francisco Gomez, a general neurologist focused on headaches, migraines and multiple sclerosis.
Brooke was referred to Gomez, a doctor certified to recommend medical marijuana in New York.
Since the January roll-out of the program, Gomez has recommended medical marijuana to about 120 patients – 80 to 90 percent were referrals.
Brooke was referred by her physician to Gomez. Patients still have no access to the list of doctors. Neither do the medical marijuana companies. Doctors can look it up through the Medical Marijuana Data Management System, which is located online within the Department's Health Commerce System.
Qualifying
As of April 18, the Department of Health reports 539 physicians are registered for the state Medical Marijuana Program, and 2,875 patients have been certified by their doctors.
According to New York's Compassionate Care Act, patients may be eligible for medical marijuana if they are diagnosed with a specific severe, debilitating or life-threatening condition that is accompanied by an associated or complicating condition. There is a strict list for both the first condition and complicating condition.
Many of her symptoms are among the complicating conditions that qualify patients in New York for medical marijuana who are suffering from one of the recognized diseases.
In late March, Brooke was admitted to Boston Children's Hospital. Doctors found the muscle contractions that move food through the digestive tract hadn't been happening, which is necessary to eliminate waste from the body.
LaFond-Evans said pain medication specialists in Boston also recommended she try medical marijuana.
Georgia, which also has a strict list, includes mitochondrial disease. When they got home from Boston, LaFond-Evans made her usual list of calls and sent letters urging mitochondrial disease to be added to the list.
"It must have worked because today, out of the blue, I received a phone call from staff at the New York state medical marijuana program," she said in early April.
They told her to have Brooke qualified under neuropathy.
"It's frustrating because here she has a disease that trumps just neuropathy. Neuropathy is just one of several serious conditions that stem from mitochondrial disease, so mito should most certainly be on that list," LaFond-Evans said, though she's happy they made that recommendation.
As far as she knows, Brooke is one of, if not the first, mitochondrial disease patients in New York to try medical marijuana.
Studies done outside of the U.S. – because it's still a Schedule-1 drug – have shown medical marijuana to be helpful with seizures in children, and that it may also help increase gastrointestinal mobility, she said.
The commissioner of health may add other conditions to the list.
Conditions
According to the Department of Health, scientists and physicians at the Department of Health researched the following conditions – Alzheimer's, muscular dystrophy, dystonia, post-traumatic stress disorder and rheumatoid arthritis – and found there is not enough evidence to "support the determination that medical marijuana will provide relief to patients suffering from any additional conditions, including these five."
"However, the commissioner has not stopped his review, and continues to evaluate new scientific evidence," the Health Department said in a statement by email to The Post-Star. "If sufficient scientific evidence becomes available to support the determination that medical marijuana will provide relief to patients suffering from any additional conditions, including these five, the commissioner will act to increase the list of covered conditions. Ms. LaFond-Evans submitted information about mitochondrial disease to DOH for our review."
DOH further said that the department is "continuing to review additional conditions for eligibility, with the goal of helping as many people as possible."
Steve Stallmer, a spokesman for Etain, estimated the company has dispensed medical marijuana to nearly 300 patients now since the company had a little more than 200 at the beginning of the month when the Yonkers dispensary opened.
"We've had a lot of repeat customers," Stallmer said.
He said the number of patients is slightly below what Etain officials projected, but they were careful not to overproduce the product.
There are several bills looking to improve the program in the state Legislature. One, for instance, would allow nurse practitioners and physician assistants to recommend marijuana in addition to doctors, the goal of which would increase the number of medical professionals registered.
"We need more patients, more doctors and we need more public awareness. We need more people to be eligible and additional ailments to be covered," Stallmer said.
News Moderator: Robert Celt 420 MAGAZINE ®
Full Article: Woman Battling Mitochondrial Disease Enters The Unknown With Medical Marijuana
Author: Amanda May Metzger
Contact: The Post Star
Photo Credit: Steve Jacobs
Website: The Post Star
In the meantime, she's happy her daughter, Brooke, can try it after months of pleading with state officials.
For Brooke, 32, who can stay awake only a handful of a day's 24 hours, some symptoms of mitochondrial disease include severe nausea, severe pains, muscle weakness, muscle spasms, neuropathies, dysautonomia, which affects the nervous system, and significant loss of gastrointestinal function.
On Friday, LaFond-Evans picked up a month's supply of medical marijuana for Brooke – two brands from Chester-based medical marijuana company Etain's dispensary in Albany. One is called Balance – an equal CBD-THC formulation designed to elicit a moderate euphoric sensation and feelings of well-being.
The other is Forte, a high-THC formulation that produces a strong euphoric sensation with feelings of awareness and appetite.
Their cost was $940 for a month's supply. She will be using the oil droplets. For the initial doctor's visit, the cost was $290. Insurance doesn't cover either.
"I do hope she could come down off the opiods to some degree," LaFond-Evans said. "However much time Brooke has left, our goal is to make her more comfortable."
The irony was not lost on her that she had to drive to Albany to pick up something that was manufactured "in our backyard."
For now, the five medical marijuana companies are only allowed four dispensaries each, and there are rules about how close they could be to each other and the manufacturer.
Etain's four dispensaries are in Albany, Syracuse, Yonkers and Kingston. Etain became fully operational with all dispensaries open at the beginning of April when it opened the Yonkers dispensary. A total of 17 of the 20 dispensaries around the state are open.
It will take some time to get the dosage right, but LaFond-Evans hopes eventually medical marijuana could eliminate some of the many other medications Brooke takes, such as anti-nausea medication, anti-spasmodic medications and what she takes for neuropathy, which is the condition that qualified her.
"That's something I've seen with patients. They tend to use less of, at least their pain medications and anti-spasm medications," said Dr. Francisco Gomez, a general neurologist focused on headaches, migraines and multiple sclerosis.
Brooke was referred to Gomez, a doctor certified to recommend medical marijuana in New York.
Since the January roll-out of the program, Gomez has recommended medical marijuana to about 120 patients – 80 to 90 percent were referrals.
Brooke was referred by her physician to Gomez. Patients still have no access to the list of doctors. Neither do the medical marijuana companies. Doctors can look it up through the Medical Marijuana Data Management System, which is located online within the Department's Health Commerce System.
Qualifying
As of April 18, the Department of Health reports 539 physicians are registered for the state Medical Marijuana Program, and 2,875 patients have been certified by their doctors.
According to New York's Compassionate Care Act, patients may be eligible for medical marijuana if they are diagnosed with a specific severe, debilitating or life-threatening condition that is accompanied by an associated or complicating condition. There is a strict list for both the first condition and complicating condition.
Many of her symptoms are among the complicating conditions that qualify patients in New York for medical marijuana who are suffering from one of the recognized diseases.
In late March, Brooke was admitted to Boston Children's Hospital. Doctors found the muscle contractions that move food through the digestive tract hadn't been happening, which is necessary to eliminate waste from the body.
LaFond-Evans said pain medication specialists in Boston also recommended she try medical marijuana.
Georgia, which also has a strict list, includes mitochondrial disease. When they got home from Boston, LaFond-Evans made her usual list of calls and sent letters urging mitochondrial disease to be added to the list.
"It must have worked because today, out of the blue, I received a phone call from staff at the New York state medical marijuana program," she said in early April.
They told her to have Brooke qualified under neuropathy.
"It's frustrating because here she has a disease that trumps just neuropathy. Neuropathy is just one of several serious conditions that stem from mitochondrial disease, so mito should most certainly be on that list," LaFond-Evans said, though she's happy they made that recommendation.
As far as she knows, Brooke is one of, if not the first, mitochondrial disease patients in New York to try medical marijuana.
Studies done outside of the U.S. – because it's still a Schedule-1 drug – have shown medical marijuana to be helpful with seizures in children, and that it may also help increase gastrointestinal mobility, she said.
The commissioner of health may add other conditions to the list.
Conditions
According to the Department of Health, scientists and physicians at the Department of Health researched the following conditions – Alzheimer's, muscular dystrophy, dystonia, post-traumatic stress disorder and rheumatoid arthritis – and found there is not enough evidence to "support the determination that medical marijuana will provide relief to patients suffering from any additional conditions, including these five."
"However, the commissioner has not stopped his review, and continues to evaluate new scientific evidence," the Health Department said in a statement by email to The Post-Star. "If sufficient scientific evidence becomes available to support the determination that medical marijuana will provide relief to patients suffering from any additional conditions, including these five, the commissioner will act to increase the list of covered conditions. Ms. LaFond-Evans submitted information about mitochondrial disease to DOH for our review."
DOH further said that the department is "continuing to review additional conditions for eligibility, with the goal of helping as many people as possible."
Steve Stallmer, a spokesman for Etain, estimated the company has dispensed medical marijuana to nearly 300 patients now since the company had a little more than 200 at the beginning of the month when the Yonkers dispensary opened.
"We've had a lot of repeat customers," Stallmer said.
He said the number of patients is slightly below what Etain officials projected, but they were careful not to overproduce the product.
There are several bills looking to improve the program in the state Legislature. One, for instance, would allow nurse practitioners and physician assistants to recommend marijuana in addition to doctors, the goal of which would increase the number of medical professionals registered.
"We need more patients, more doctors and we need more public awareness. We need more people to be eligible and additional ailments to be covered," Stallmer said.
News Moderator: Robert Celt 420 MAGAZINE ®
Full Article: Woman Battling Mitochondrial Disease Enters The Unknown With Medical Marijuana
Author: Amanda May Metzger
Contact: The Post Star
Photo Credit: Steve Jacobs
Website: The Post Star
