David Robinson, April 13, 2016
Story Highlights
Andrew Greenspan of Nyack started medical marijuana in February, and reports life-changing results
The Journal News/lohud.com obtained exclusive access behind the closely guarded doors of a marijuana dispensary
State and federal reform efforts seek to close legal and insurance problems in medical marijuana program
500 N.Y. doctors, out of 90,000 have registered to participate; 2,500 patients are certified out of 200,000
Some of New York’s top doctors spent countless hours last year examining Andrew Greenspan.
His constant pain and dangerously high fevers had them baffled. At one point, they quarantined him in fear of tropical diseases.
A team of neurologists finally cracked the medical mystery: Greenspan, then 23, had a rare mix of autism, spinal injuries and other illnesses with bleak treatment options.
When a risky spinal surgery failed last year, he launched an uncertain regimen of painkillers and other drugs, while dreading his next emergency room trip.
As the breaking point loomed, Greenspan qualified to buy medical marijuana at a White Plains dispensary earlier this year. His health dramatically improved just a couple of months after starting the drugs. His pain has become manageable, and his appetite has returned.
“It’s just been life-changing, and it was like a second chance after going through all these doctors and hospitals and them saying, ‘We’re going to fix you,’ and a lot of promises that weren’t actually met,” he said.
What follows is Greenspan’s medical odyssey from ineffective drug cocktails and failed surgeries to hope after taking controversial marijuana-based drugs. His dramatic turnaround, and those of many of the 2,500 other critically ill New Yorkers using the drugs, underscores why efforts mount to improve access to the program.
Part of his story involved The Journal News/lohud.com obtaining exclusive access behind the closely guarded doors of a marijuana dispensary in downtown White Plains. During visits to the Vireo Health of New York business, officials discussed new details about the drugs for the first time.
Dr. Stephen Dahmer, chief medical officer at Vireo, sat beside Greenspan as they discussed concerns about affordability and expanding the short list of 10 illnesses eligible for marijuana. Dahmer described the program as fundamentally flawed because marijuana remains illegal under federal law, even amid growing examples of its potentially life-saving benefits.
“Any other medicine that has this positive of an effect would be seen in a different light,” he said.
Greenspan also spoke at his family’s South Nyack home overlooking the Hudson River. He has started looking for a job. His mother, Wendy, described that as unthinkable before he joined the exclusive ranks of patients certified to buy marijuana-based drugs in New York.
“I cannot even express how ill he has been and just how awful a road that he’s been on, but, since he started marijuana, he is in such better health that it’s like a miracle,” she said, her voice quivering.
Still, some doctors remain skeptical of medical marijuana's legal and health risks. Their concerns, and others aired during hearings after New York's law was enacted in 2014, influenced the state Department of Health's regulations that limit access to a short list of eligible diseases, including cancer, epilepsy and neuropathy, a form of nerve-damage that is among Greenspan’s illnesses.
Lawmakers nationally are debating the expansion of marijuana-eligible illnesses, but New York is considered among the most restrictive. Alzheimer's disease, post-traumatic stress disorder and autism are some of the conditions not currently on the list that are being debated by politicians, doctors and patient advocacy groups.
“I’ve had parents knock on our (dispensary) door asking about autism and the potential for treatment for that, and some of the heads of support groups for autism, and I had to turn them away,” Dahmer said. "It’s not one of the 10 disorders, and that is the line I have to go back to because that is the way the law is written."
Cost still a barrier
Affordability has emerged as another crucial hurdle because health insurance doesn’t cover the drugs, which cost up to $1,000 per month as sold in non-smokeable oils, tinctures (a solution) and pills under state law, The Journal News/lohud.com has found.
Wendy Greenspan, a nursing professor at Rockland Community College, said her son’s marijuana costs about $500 per month, and is likely to increase based on usage. Meanwhile, the family is thousands of dollars in medical debt.
“Everything is coming out of our retirement, and it's tough, but it has to be done because your child is sick.”Wendy Greenspan, patient's mother
“If you’re going to legalize it, do right by people because you’re legalizing it to help people and not making it hard to get for people who are already paying for other health care,” she said. “I really hope when the dust settles that everyone realizes this medicine is really working.”
Many of the access problems stem from the fact that marijuana remains illegal under federal law, even though 23 states, including New York, allow its sale for medicinal use. National debate over reforms often overlaps with the push to legalize recreational marijuana use, which is allowed in four of the states.
In New York, enrollment has grown slow and steady since its medical marijuana program launched in January. By early April, 500 doctors, out of 90,000, have registered, and 2,500 patients have been certified, or about 1 percent of 200,000 eligible.
Meanwhile, health care workers have accessed a private state Health Department database of marijuana doctors to refer potential patients, though the list remains hidden from the public.
After consulting with Andrew Greenspan on the marijuana-based drugs, Dahmer talked about his frustrations with the program, especially the lack of health insurance coverage.
“That’s one of the hardest things for me is seeing patients come through every day that this is benefiting their condition and then stopping at the ATM and opening up their wallet already on top of the high medical costs,” he said.
Officials at several of New York's five marijuana companies, which have spent millions of dollars to open manufacturing plants and dispensary sites, have vowed to reduce prices as enrollment grows, regardless of insurance reforms. Meanwhile, medical marijuana costs hundreds of dollars more in New York than many other states with less restrictive programs, depending on the type of drugs and patient.
Even though medical marijuana is showing promising early signs, Wendy Greenspan described the stigma and cost barriers hindering access to the drug as another example of a fundamentally unfair and broken medical system, especially for those touched by autism.
“How do you go from oxycodone (painkillers) that cost $2 per pill because of insurance, and go to marijuana, which is legalized and not covered and you have to pay cash?” she asked. “Something is just not right.”
She estimated her son's medical bills at nearly $1 million, though a majority was covered by health insurance despite thousands of dollars in specialty care coming out of pocket.
"Everything is coming out of our retirement, and it's tough, but it has to be done because your child is sick," she said.
Behind the doors
Vireo’s dispensary feels like a mix of pharmacy and doctor’s office. Frosted glass prevents passersby from looking inside the corner storefront on East Post Road. A small Vireo Health decal on the front door is the only sign.
The nondescript design is no mistake, however, and stems from some New York lawmakers' focus on preventing abuse of the marijuana industry.
State law prohibits marijuana signage and requires strict security measures. Vireo has a locked entrance checkpoint staffed by a guard who photocopies visitors’ marijuana ID cards or driver’s licenses. Cameras hang from ceilings throughout the building.
The rules focus on keeping drugs away from non-patients, a top priority of many New York politicians, including Gov. Andrew Cuomo, and apply to all 20 dispensary sites. Besides White Plains, the only other site in the Lower Hudson Valley is in downtown Yonkers.
Greenspan cleared security at Vireo on a recent afternoon and walked into a patient consultation room. The sparsely decorated space uses calming green and white tones with a simple round table, four chairs and a framed leafy plant picture on the wall.
He sat with a Vireo pharmacist and chatted about buying marijuana-oil refills at the sleek computer kiosks at the dispensary's entrance, where two other patients waited for cashiers and pharmacists.
As Greenspan talked of how marijuana's pain-relieving benefits led to his first bike ride in more than a year, the shadows of people outside on the sidewalk darkened the consulting room's frosted window.
Dahmer smiled at hearing of Greenspan's improved health, but he noted the treatment remained in the early stages.
"How long can this continue, and that’s an even more important question of why we need specific dosing to continue these results, and for me it’s really the long haul that’s important," Dahmer said.
While some business owners and residents had opposed the White Plains dispensary site, patients came and went on a recent afternoon unnoticed, joining rush-hour crowds emptying out of the nearby Social Security office and other high-rise buildings.
Giving autism a voice
Doctors didn’t formally diagnose Greenspan as autistic until his late teens, but Wendy Greenspan always suspected something wasn’t quite right.
“The potential benefit from the autistic side is something that is very cool to see where this could lead, and if medical marijuana could have a positive ripple effect in the autistic community, that could be life-changing for thousands of people.”Mark Greenspan, patient's father
“He was always very successful and graduated high school with a Regents diploma, and really, after that, he just never really developed like the other kids," she said. "When he went to college he just fell through the cracks and wasn’t able to assimilate with the other kids."
A nurse for 30 years, she blames herself for missing the warning signs. She also gets angry when recalling how doctors misdiagnosed her son’s autism and separate but related illnesses, including neuropathy and spinal injuries from skateboarding.
"It makes me absolutely crazy to think about what happened to him," she said.
Her son spent three months in the hospital last year. He had an electronic pain-relief device implanted in his spine — similar to a pacemaker — but had it removed when it proved ineffective. Ultimately, doctors prescribed dozens of medications in what the family described as a trial-and-error pharmaceutical cocktail. The pill bottles fill a cardboard box in the family's closet.
Andrew has been having good results using medical marijuana for pain control.
Since starting medical marijuana, he said the early benefits include relieving some of his autistic symptoms, such as social anxiety. Even something as seemingly small as him making eye contact brings his father, Mark, joy.
“The potential benefit from the autistic side is something that is very cool to see where this could lead, and if medical marijuana could have a positive ripple effect in the autistic community, that could be life-changing for thousands of people,” his father said.
Dahmer expanded on the efforts to continue growing marijuana’s medicinal uses despite federal legal hurdles.
“These are the hoops and the hurdles of a young program," he said, "But you could imagine what it’s like if I can’t take a medicine that is truly helping my disease because of state-specific laws, and it’s hard for me, as a family doctor, to hear that, but we’re working within the system to do the best that we can."
State and federal lawmakers are debating a variety of reforms to the system. Cost, transparency and expanded access are among the critical issues in New York and nationally, and Dahmer said the efforts hinge on fledgling clinical studies on marijuana returning positive results.
"There is increasing amounts of science, related especially to the 10 disorders and the illnesses behind that (in New York's program), and we need more evidence and we need more science, and one of the big bottlenecks in New York are physicians that are available to recommend this," he said.
The state Department of Health is also awaiting medical research as it considers adding more eligible illnesses.
The department is reviewing several diseases, and others may be added as medical research expands, an agency official said. The current review involves Alzheimer’s disease, post-traumatic stress disorder, muscular dystrophy, rheumatoid arthritis and dystonia, a muscle disorder.
Dahmer noted that expanding doctor participation and the list of eligible illnesses hinge on continued marijuana research.
"Physicians are going to come on board when evidence increases; so we need data to create that evidence and studies to help move forward," he said.
http://www.lohud.com/story/news/investigations/2016/04/13/medical-marijuana-patient/82110856/
No comments:
Post a Comment
All comments welcome but advertising your own service or product will unfortunately result in your comment not being published.