Metro-East News

Patients who need medical marijuana face daunting obstacles in Illinois

In less than two months, if all falls into place as expected, the first batches of Illinois-grown medical cannabis will be arriving at dispensary shelves in Sauget, Collinsville and dozens of other towns around the state.

But tens of thousands of Illinois patients who potentially could qualify for the medical marijuana cards they need to obtain the medicine will be out of luck — either because they can’t find physicians to sign off on the cards, or because they can’t afford pricey cannabis-based products in light of the fact that health insurance companies such as Aetna and Blue Cross and Blue Shield of Illinois refuse to cover it.

All across Illinois, patients who suffer from cancer, AIDS, ALS, Crohn’s disease and many other ailments are hitting a wall when it comes to obtaining access to medical marijuana. Ironically, the very law that was supposed to help patients obtain medical marijuana legally will, because of its high costs and restrictons, force them to obtain it from illegal dealers, according to some industry experts interviewed.

For sick children’s parents, such as Kimberly Locke, of Mattoon, access to the cards is even more difficult than for adults because the pilot program requires that two physicians sign off on a child’s card.

Locke’s daughter suffers from severe seizures caused by epilepsy. The girl needs a type of cannabis oil that has no psycho-active ingredients.

Locke said she visited two different physicians and heard the same thing from each: “‘We don’t know what cannabis oil will do in the long run,’” she said. “That’s what my doctor keeps saying. But my point is with (her daughter suffering) 20 to 30 seizures an hour, we do know what that does to a brain in the long run. She will die. It will kill her.”

Illinois parents of kids who need medical cannabis have only a few choices: either move to a state such as Colorado, where it is easier to obtain physician approvals, or talk to other parents of sick kids to find out who signed off on their cards.

“Right now the only choice we parents have is to talk to each other and to see who’s getting approval for that syndrome, and what doctors will sign for what syndrome, and what docor will sign for that one,” Locke said. “And have that doctor be their doctor just to get one medicine. A lot of parents are signing their kids up with three different pediatricians and then getting them to sign most of the cards.”

Meanwhile, other Illinois residents in need of medical marijuana are girding themselves for big price shocks when they walk into their local dispensaries when they open later this year. Price surveys in other states, such as Colorado and Washington, where medical and recreational cannabis are legal, indicate that prices can range widely, from $250 to $400 an ounce — none of it covered by health insurance.

Sharon Rose, who suffers from a painful neuro-muscular condition called dystonia, is wondering how she will be able to pay for the medical marijuana when the first dispensary opens in November in Rockford, the northwestern Illinois town near where she lives.

“It will be a huge expense,” said Rose, who was just approved for disability under Social Security.

Rose can’t work full-time and has seen her earning power drastically reduced. “For me, for a month, it’s a lot different number than for someone, as myself, who used to work full-time and bring in a lot of money...It will be big shock,” she said.

Another issue is the ignorance of many physicians regarding their responsibilities to patients and the risks they face in signing the cards.

“The doctors have such a misunderstanding,” Rose said. One physician wrongly said to her, “‘I thought we had to take a class in order to learn what we need to do in order to sign off on this paperwork,’” she said. “And I said, ‘No, your name goes into a blind system...your name is not exposed. It’s just you letting me know this is OK with you. You’re not involved. You’re not at risk.’ They don’t have any information.”

Another physician she heard interviewed on the radio said, “‘The doctors are just so afraid because the feds are going to pull their licenses,’” she said. “And they’re saying this, and I’m shaking my head, ‘No, no, no.’”

In contrast, opponents of medical cannabis see Illinois’ pilot program as not restrictive enough, making it a launchpad for a host of potential problems — addiction, overdoses, bad side effects — that have been downplayed by industry advocates.

Calvina Fay, the executive director of Drug Free America, said she has no problem with medical marijuana that is sold via prescription and that has been rigorously tested via clinical trials.

Trouble is, the medical cannabis expected to go on sale in Illinois dispensaries later this autumn has not been subjected to careful testing, Fay said.

“There’s no legitimate research out there that shows that the entire marijuana plant is an effective and safe medicine,” Fay said. “There is absolutely no research that shows that...There is no established safe level to use it. There is no established effective dosage. There is no established method to use.”

Health providers not enthused

Belleville’s major hospitals hew close to policies that steer physicians and patients away from medical marijuana, at least for now. Nancy Weston, Belleville Memorial Hospital’s vice president of patient care services, noted that marijuana is illegal under federal law, while both the hospital and pharmacy are licensed by the federal government.

“Risk of violations could lead to loss of hospital reimbursement and financial penalties,” wrote Weston, who added that a survey of metro-east hospitals in the fourth quarter of 2014 found “that all hospitals surveyed were not going to allow the use of medical marijuana at that time.”

The same story is being told at St. Elizabeth’s Hospital in Belleville, whose pharmacies are not licensed medical marijuana dispensaries.

“We are leaving the decision of medical marijuana up to individual providers. The decision is a private medical matter between the patient and his/her health care provider,” said Dr. Loren Hughes, the president of HSHS Medical Group, which oversees St. Elizabeth’s.

The Southern Illinois Healthcare Foundation, or SIHF, which runs the metro-east’s largest system of medical clinics, especially for low-income residents, would not close the door completely on medical marijuana for its clients. But neither would the foundation commit to supporting the pilot program.

In a statement issued to the News-Democrat, the foundation emphasized that it “is committed to providing quality medical care to all of our patients. SIHF does not have a formal medical marijuana policy at this time; however, we are currently reviewing all policy considerations to ensure we comply with both state and federal laws, and continue to serve our patients.”

Two major medical outfits in Southern Illinois — Southern Illinois Healthcare and Southern Illinois University — have already announced they won’t allow their physicians to sign off on medical marijuana cards for their patients, on the grounds the federal government still considers all forms of marijuana to be illegal.

Patients in the Quad Cities area of northeastern Illinois received a similar dose of bad news when two of that region’s biggest healthcare providers — Genesis Health Group and UnityPoint Health-Trinity — announced they won’t allow their physicians to sign off on patient medical marijuana cards either.

The U.S. Department of Veterans Affairs, which runs the nation’s largest system of hospitals, also won’t allow its physicians to sign off on the cards in any of the 23 states where medical marijuana is legal.

$350-plus to start

The procedural hurdles and high costs embedded in Illinois’ medical marijuana pilot program will have the ironic effect of driving otherwise law-abiding citizens toward illegal street dealers, said Michael Mayes, CEO of Quantum 9, which owns dispensaries and cultivation centers in Colorado.

Patients in Illinois must pay a $100 application fee. Other charges, including a photo, fingerprinting fees and a physician consultation could tack on another $150 to the application process. Once they get their cards, they must pay an annual fee of $100 to keep them.

To complicate matters, Illinois patients can only get their cards signed by physicians who have established a “relationship” with them, Mayes said.

“So if your primary care physician doesn’t prescribe medical cannabis, then right off the bat you have to establish a new bona fide relationship with a new physician,” Mayes said.

What’s more, a background check and fingerprinting are “incredibly difficult for patients that have debilitating illnesses that are homebound,” Mayes said.

The way Illinois’ pilot program is set up “makes for a very ripe black market, or what we say in the business is an illicit market,” Mayes said. “Really, what it is, is, ‘Hey, I can’t afford the dispensary, I can’t afford to get a patient card for $100 or $150, so I’m just going to buy it from a drug dealer, where I can actually afford it.’”

The Illinois Department of Financial and Professional Regulation has announced the first dispensary to meet registration requirements is called Harbory and is located in Marion.

The Marion dispensary, after completing a registration process that includes an inspection, may now open for business when medical marijuana becomes available for sale.

About 3,700 people have applied for medical marijuana cards, a 40 percent increase over the number four months ago, according to recently posted numbers by the Illinois Department of Public Health. The department has issued 3,000 approval letters. Only 10 of those are for children.

Before the Illinois pilot program was approved, estimates of how many people would obtain the cards ranged between 10,000 and 100,000, according to Jared Taylor, who would like to buy medical marijuana to treat the pain he suffers from osteoarthritis, a joint disease that affects cartilage.

The fact that only 3,000 Illinois residents have marijuana cards so late into the program’s history indicates the state’s rules for obtaining them are too restrictive, said Taylor, who lives in suburban Chicago.

Taylor noted that nearly 13 million people live in Illinois, but only about .02 percent have qualified for the medical marijuana.

“This whole program, as of right now, has been a massive failure,” Taylor said.

Because osteoarthritis is not on the list of 37 approved illnesses and conditions that qualify patients for medical cannabis cards, Taylor won’t be able to buy the product from state dispensaries.

To make the program a success, Taylor said, the state needs to take a series of steps to increase accessibility — from cutting the $100 application fee to $25, to discarding the finger-printing rule, to allowing patients to grow their medicine.

The most important improvement that can made for the program is to make it permanent, Taylor said.

“Growers, patients, they just don’t know,” he said. “Is this going to be around? Am I going to wake up Jan. 1, 2018, and the 2.5 ounces that I had, is that going to make me eligible to be arrested by the state police?”

Tanya Griffin, who will oversee the The Green Solution medical cannabis dispensary being built in Sauget, said patients must educate their physicians on the efficacy of medical marijuana because “physicians are reluctant to make a recommendation that doesn’t fall within traditional medicine.”

Griffin noted that the physicians are only being asked to make a recommendation when they sign off on the cards. That’s a far cry from actually signing a drug prescription for a powerful painkiller, such as Oxycontin.

“I think there is going to be a learning curve here, and unfortunately, the individuals that are suffering are the chronically ill patients,” Griffin said, emphasizing that time is not on the side of terminally ill patients who need cannabis to deal with the unpleasant side effects of cancer drugs. “These are patients who need to get the product sooner than later. It’s really an unjust situation.”

For Illinois patients, the important factor in gaining access to legal medical marijuana will be through education, especially of physicians who are new to medical marijuana, according to Bresha Brewer, executive director of the newly created Medical Cannabis Alliance of Illinois, a trade association representing cultivation centers and dispensary firms.

“I think it’s just educating physicians and medical groups on the benefits, and reminding them there are other states that allow for medical cannabis,” Brewer said. Also he said, they should be reminded that “the federal government has not come in to shut down any of those programs or disciplined those physicians as long as they were compliant with state law.”

Contact reporter Mike Fitzgerald at or 618-239-2533.