Louann Speese-Stanley spent years advocating for a medical marijuana program in Pennsylvania that could offer relief to her daughter, Diana, and other sick children for whom traditional medications have not worked.
But now that the program is finally up and running, the treatment Speese-Stanley fought so hard to make accessible is still out of reach for her daughter.
Speese-Stanley is a single mother of five in Grantham, a small town in Cumberland County. She cannot work outside the home because she is the full-time caregiver for Diana, 21, who has a severe form of epilepsy. In addition to Diana, two teenage daughters live at home, and the family barely scrapes by.
"I'm very happy we did this," Speese-Stanley, 59, said of advocating for the medical marijuana program, "but I'm very sad for my daughter."
Medical marijuana programs in Pennsylvania and New Jersey have opened up a new realm of possible treatment for patients with chronic pain, cancer and neurological disorders. There is limited clinical research on medical marijuana's effectiveness, in large part because of problems with studying a banned substance. But federal regulators recently approved an epilepsy drug with an active ingredient derived from marijuana, and, anecdotally, patients report that cannabis has helped them manage a range of conditions.
But even as marijuana gains medical and political acceptance in more states, it is still illegal under federal law and not approved by the U.S. Food and Drug Administration, which means it's not covered by insurance. That means patients who want the treatment must pay for it out of pocket, so those who can't afford it — such as Speese-Stanley's daughter — go without.
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"So many patients have been impoverished by their illness — they may be on Social Security and surviving on $15,000 a year. To spend that amount of money for medical marijuana really becomes an unworkable situation," said Ken Wolski, executive director of Coalition for Medical Marijuana New Jersey, a patient advocacy group.
In New Jersey, where medical marijuana has been legal since 2010, a gram of flower, the plant product most people associate with marijuana, costs about $15.
Pennsylvania legalized medical marijuana in processed forms, such as oils, in 2016, and earlier this year opened sales of flower, which costs $10 to $15 for a gram. A month's supply could cost hundreds of dollars.
Growers, processors and dispensary owners say they are aware of the financial challenges their patients face and hope that as the business matures prices will come down.
For now, marijuana prices reflect the high start-up costs of breaking into an industry with more hurdles — due to the federal ban — than traditional businesses, said Mike Whiter, activist and video producer on marijuana topics for Now This, a news site.
State regulation adds to the administrative burden. Every package sold must be labeled with tracking codes, and marketing and any sales or discounts must be approved by state regulators.
Whiter said prices can be higher than what is sold illegally on the street, but so is the quality.
"I think it is somewhat cost prohibitive, but I think safe access makes it somewhat worth it being a little more expensive," he said.
Discounts available at some dispensaries can help – if you qualify.
At Curaleaf in Bellmawr, N.J., discounts range from 20 percent to 40 percent for veterans, children and patients who have proof of receiving Social Security or disability benefits, said president George Schidlovsky.
Restore, in Philadelphia's Fishtown neighborhood, gives a 20 percent discount to veterans and a 15 percent discount to seniors, said Rob Stanley, the dispensary manager. The dispensary hopes to add more discounts soon.
"It's important to us because we want to make sure the people who need the medication get it," he said.
Patients who don't quality for discounts sometimes find their own workarounds.
"I've had to get creative," said Dana Belka, 46, of Collingswood. Instead of paying up to $120 for a quarter-ounce of a top-notch flower, Belka pays $40 for what she calls "ready to roll," the leaves and dregs from a flower batch. In Belka's opinion, the more finely ground leaves are as effective as full buds, but are often marked down.
Because Speese-Stanley can't afford Pennsylvania prices, she buys marijuana from Oregon and California, where the industry has had years to get established.
Her daughter used to take at least five anti-epileptic medications — all paid for by insurance — but they didn't do much to help the seizures she had multiple times a day and left her listless, Speese-Stanley said.
Her seizures have been shorter since Speese-Stanley started administering drops of cannabis oil along Diana's bottom gums in 2013. Diana is more engaged in her environment, smiling and laughing at the comedy shows she likes to watch on television, Speese-Stanley said.
"There was a point last year I said maybe I'm going to stop because it's not affordable and my girls at home said, 'No, Mom, she is the best she's ever been,'" she said. "She's nonverbal and still has seizures, but she can have a quality of life she hasn't had before."
Product price isn't the only barrier.
Medical marijuana cards cost $50 in Pennsylvania. New Jersey recently reduced its fee from $200 to $100, with a discounted rate of $20 for veterans, seniors and patients who qualify for other public assistance programs.
To get a card, patients must first receive a recommendation for medical marijuana from a doctor who is registered with the program and certifies that the patient needs treatment of an approved condition.
If your current doctor is on the list, you're in luck — the appointment may be covered by insurance as part of ongoing treatment. But an appointment with a new doctor specifically for a cannabis referral can cost $100 to $450, and likely will not be covered by insurance.
"It's that on top of everything else and at this point, it's just getting to be so hard," said Min Jung, 42, of West Philadelphia, who does not work because of chronic pain and is finding it increasingly difficult to get opioid prescriptions from her physician, who is not certified to recommend marijuana.
Bonnie Queen, who has Parkinson's disease, faces paying $150 for an upcoming appointment with a psychiatrist who is certified to recommend marijuana for symptoms related to her condition.
"There are people who don't have money and are in terrible shape because Parkinson's messes with your cognition," said Queen, 71, of Wyndmoor, who hopes marijuana will help her sleep. "There are people who could be helped who really don't have the energy or the wherewithal to go through that ridiculous process."