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In Illinois, a cancer diagnosis doesn't guarantee access to medical marijuana

Doctors statewide have been reluctant to prescribe cannabis—even to patients battling serious illnesses.

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CLAY HICKSON
  • Clay Hickson

When medical cannabis was legalized in Illinois last November, I thought I was a shoo-in for the program. I'd been undergoing treatment for stage-three Hodgkin's lymphoma for six months, and had already been offered a prescription for the THC supplement Marinol by my physician. I also had symptoms that were supposed to be helped by medical marijuana use: nausea, loss of appetite, and neuropathy. But it wasn't so simple; my quest for the elusive green card has so far taken three physicians, five months, and $450. And I still don't
have one.

It turns out I'm not alone. According to the Illinois Department of Public Health, only 16.7 percent of patients, or 5,000 out of the nearly 30,000 who have started an application for the medical cannabis pilot program, have been approved. Physician approval is a common hurdle. The Healing Clinic, a full-service advocacy center for medical marijuana patients with locations in Chicago and Highland Park, surveyed 400 Illinois doctors and found that 82 percent of them are not approving patients. The main reason doctors cited was a lack of research in support of the treatment, but some also expressed fear of repercussions from the medical board regarding their medical licenses.

When I approached my own doctors (two separate oncologists at Northwestern Memorial Hospital) asking for certification, the response was simply: "We are not certifying patients for medical cannabis at this time." The hospital's official policy allows doctors to make their own decisions when it comes to qualifying patients, but they must first "provide informational materials and discuss the facts and uncertainty around medical marijuana." Medical marijuana is also prohibited at Northwestern facilities, and "cannot be obtained, consumed, stored, or administered in our hospitals."

I asked UIC Medical Center and Thorek Memorial Hospital in Buena Park about their stances regarding medical cannabis, and the question was met with confusion about whether an official policy was even in place; representatives from both responded by saying they weren't certain their hospital gives cards out. A spokesperson from Advocate Illinois Masonic Medical Center responded with a vague official statement: "Our goal is to assist patients on their path back to health. Physicians work with each patient to determine the best treatment plan in order to achieve this."

Nancy Chacon was also denied certification by her doctor at Northwestern, despite having two qualifying ailments: fibromyalgia and Crohn's disease. "Pretty much from the first appointment, [my physician] was suggesting that I try cannabis because I was on Percocet," Chacon says. "She said, 'You should take medical cannabis, but I won't be prescribing it for you. Yes, this would be good for you, get it from anyone else.' " So at age 38, Chacon found herself trying street drugs for the first time, literally meeting strangers in alleys to buy weed to try to ease her pain.

"All this is doing is encouraging patients to be criminals," she says. "I don't want to start doing criminal activities at 38, 39." Illegal cannabis was just a supplement to the opiates and steroids prescribed by Chacon's doctors until November 2015, when she experienced a complete adrenal shutdown—the condition causes low blood pressure, fatigue, loss of appetite, vomiting, and sharp muscle and joint pain—and had to come off steroids. Her pain was worse than it had ever been, and still her doctor wouldn't approve her for medical cannabis; she says those were days that she was closest to having suicidal thoughts, contemplating whether it was even worth continuing a life of such pain. But in the throes of crisis, she discovered Good Intentions, a registration service for medical marijuana cards that led her to the physicians at the Healing Clinic.

“My doctor said, ‘You should take medical cannabis, but I won't be prescribing it for you.’ All this is doing is encouraging patients to be criminals.”

—Nancy Chacon, who suffers two conditions, fibromyalgia and Crohn's disease, that qualify her to get a medical marijuana card ­

Wesley Tyler was diagnosed with multiple sclerosis in 2014, and has regularly experienced numbness and tingling in his hands and feet as well as trouble with his vision because of an inflammation in his brain that pushes on his optical nerve. Through his own research, he decided to seek out medical marijuana to ease his pain. "My physician is very old-fashioned, and I actually dreaded the thought of asking him," Tyler says. "Doing Internet searches, I found many places around Chicago claiming to assist in getting through the application process. Most of them turned out to be extremely expensive just to get in the door." He eventually attended an open house at the Healing Clinic with his family, the first place he found with actual physicians instead of just advocates approving patients.

So far the Healing Clinic has assisted more than 1,000 qualifying patients in Illinois who were turned away by their primary care physicians, according to the center's principal advocate Feliza Castro. Patients must have one of the qualifying conditions and provide their medical records, then schedule both a physical exam and cannabis certification appointment with one of the facility's part-time physicians. But this resource comes with its own hurdles. It can still take three to six months to receive a card, and because most insurance doesn't cover any charges at the clinic, the patient is responsible for all fees. Cachon spent three months completely off medication while waiting for her card, a period she describes as the hardest and most painful time of her life. She spent nearly $500 on the entire process, not to mention the added $400 to $500 the medication costs her monthly.

For others, the journey to a card has been even more difficult. Mike Mortensen's five-year-old daughter, Chloe, was born with chromosomal deletion syndrome—a loss of parts of chromosomes in the copying of DNA that causes severe birth defects and significant intellectual and physical disability. As a result she was unable to walk or talk, suffered from seizures, and had self-destructive tendencies. Multiple doctors, including specialists at the Ann and Robert H. Lurie Children's Hospital of Chicago, denied Chloe approval because of a lack of research regarding the effectiveness of such treatment for the condition. The Mortensen family was about to pick up and move to California, where it's easier to obtain medical marijuana. But once they discovered the Healing Clinic, Chloe became one of 33 patients in Illinois under the age of 18 to receive a card, with her father acting as her caregiver.

Still, the results seem worth it even to those who've had to wait. Chloe "was a child who didn't play with toys," Mortensen says. "Now that she's on [medical cannabis], she actually sits down, plays with toys, sits and watches movies. Her seizures have pretty much stopped." Chloe's dispensary, Greenhouse, in Deerfield, has even reached out to cultivators to create a special cannabis gummy bear just for Chloe.

"I remember doing guided meditation [before starting medical cannabis] and doing a body check, and it was to the point where I was like, 'Everything hurts,' " Chacon says. "I did the same body check after entering the program, and I had this lightbulb moment: 'I'm not in pain.' I started crying. It was honest-to-god the first time for me in 20 years that I can say that I have moments where I don't have pain."

And the benefits go beyond the physical. Tyler says he's been dealing with mental and emotional issues since receiving his diagnosis; medical cannabis has helped him there too. "Not only does it relieve me of my pain, but it also lifts my mood and helps me escape the tunnel vision that is depression," Tyler says.

As a prospective patient myself, those outcomes seem worth all the time and money that go into the process of getting a card. But I'm facing my own set of psychological hurdles. For me, doctors offices have become traumatizing places; after receiving so much bad news from past medical tests, merely entering another medical facility is emotionally draining. And the application for a place like the Healing Clinic forces patients to dive deep into their medical histories, listing every hospitalization and verifying every test result; let me tell you, it's not pleasant to relive the worst days of your life.

Then, of course, there's the fear that, if I am approved and hopefully start seeing improvements in my health, it could all be taken away. Because Illinois's is just a pilot program, it's possible that, when the advisory board next meets, it could deem the test unsuccessful and amend the status of legal medical marijuana in the state—it seems especially possible with the current low rate of patient approval.

But it's a risk that I and other Illinois residents suffering from cancer, multiple sclerosis, or one of the other 37 state-approved qualifying conditions are willing to take. Whether Illinois doctors will be willing to take that same risk is another story. v


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