The Ontario University Student who is pushing for insurance coverage for medical marijuana

Forty-eight. That's the number of medications Jonathan Zaid cycled through with no results until he tried cannabis. Diagnosed in 2007, Zaid is effected by New Daily Persistent Headache (NDPH) where nothing was effective at decreasing the pain. Resulting in lack of sleep, focus and even...

Forty-eight. That's the number of medications Jonathan Zaid cycled through with no results until he tried cannabis.

Diagnosed in 2007, Zaid is effected by New Daily Persistent Headache (NDPH) where nothing was effective at decreasing the pain. Resulting in lack of sleep, focus and even significant impacts socially growing up, Zaid had a difficult first year after diagnosis, a year spent mostly at home due to the pain. NDPH also resulted in sensitivities to sound and difficulty socializing while being in so much pain, leading to a one-on-one specialized program in school. Now 22,  Zaid is a student at the University of Waterloo, and doing much better thanks to the use of cannabis.

Zaid remembers constantly doing  research on his condition, even at 16 years old.  Armed with information,  he first brought up the option of trying cannabis with his team of physicians, but they all dismissed him, he says.

"They said it’s not researched, it's not safe, it’s not indicated for your condition, but at the same time I tried 48 prescription drugs that weren’t indicated for my condition… For pediatrics, cannabis is viewed as a bit more “risky” so I think that had something to do with it, too”.

Change started on his 18th birthday, nearly two years after first beginning to learn about cannabis as a potential medicine. Frustrated by the constant pain her son was in, Zaid’s mom surprised him with a joint. Although the effects weren’t immediate, and Zaid recalls getting high from the effects of THC, there was some decrease in pain. Shortly after, Zaid went off to university and began surrounding himself with cannabis friendly students who assisted in navigating the ins and outs of strain selection.

"They said it’s not researched, it's not safe, it’s not indicated for your condition, but at the same time I tried 48 prescription drugs that weren’t indicated for my condition… For pediatrics, cannabis is viewed as a bit more “risky” so I think that had something to do with it, too”.

Having access to only street dealers, Zaid began using "recreational" cannabis for medical purposes, a story that rings true for many Canadians today. Zaid found consistent access through a dealer quite difficult. He explains, "the inconsistency in availability of strains, especially CBD ones, made it difficult to use as a proper medicine. People don't care about CBD in recreational use."

There were also many challenges to using cannabis medically in a social environment throughout university, particularly during his first year in residence. With a strict ban on drug use in residence, not to mention smoking indoors, there were some obstacles to medicating while living in this environment. At a time when it wasn’t receiving as much attention as it does today, many of his peers couldn’t understand cannabis used for medical purposes. Zaid often felt the stigma of being labeled as a “stoner”.

As he explains, “To this day I still feel like people see me as a 'stoner' because of the fact I use marijuana and I don’t like the connotation it comes with. I use it as a medicine, a pharmaceutical grade medicine”.

Aside from the stigma, which research in Canada has consistently shown is a reality for patients who use medical cannabis, what mattered most was that cannabis was helping. Medical marijuana was allowing him to attend classes and socialize again, when he could get a hold of the right strains for him.

“To this day I still feel like people see me as a 'stoner' because of the fact I use marijuana and I don’t like the connotation it comes with. I use it as a medicine, a pharmaceutical grade medicine”.

With cannabis, Zaid first noticed a substantial difference in his quality of sleep, rather than his pain, and had tried countless other sleep medications. There was only one medication, aside from cannabis, that really helped. This medication was a pharmaceutical drug from the United States, and cost about $15 per pill. Needing one pill a day, and tentatively resulting in over $450 per month, Zaid knew he had to get coverage under his school health plan. Although it came without a Drug Identification Number (DIN), Zaid fought for coverage with Sun Life Financial and won. Leading to the successful addition of cannabis to his insurance plan, this set a precedent for the possibility of coverage without a DIN.

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Jonathan Zaid (far right) at a recent medical marijuana panel during this year's Canadian Students for Sensible Drug Policy Conference in Toronto. Also pictured, from left: Jenna Valleriani, Theresa Kozack, Marc Wayne, Adam Greenblatt, Dr. Daniel Schecter and Dana Larsen

During the transitory period from the MMAR to MMPR in 2014, Zaid started talking to physicians who he found were more willing to have a discussion about cannabis. In March of that year, Zaid visited a physician who suggested he try cannabis to his parents. As a hopeful first step in access, this physician was able to draw on his experiences and prior success with cannabis and other patients under the MMAR. The physician gave him the choice of writing a medical document under the MMPR in April, or the option to access through a dispensary immediately. The physician discussed a $300 fee attached to the medical document, which included ongoing care every 2-3 months and dosage adjustments. Zaid agreed to pay the amount and in April was given the physician’s first MMPR medical document.

Knowing the fee was a common practice, “I didn’t expect it to be that much, but I did expect ongoing care”. When the physician left his practice three weeks later, ultimately leaving the country indefinitely, Zaid was frustrated by the lack of access to care which he had paid for. Continuously phoning the physicians office as he was left without any referral options, they told Jonathan he would have to find another doctor. “I was really unhappy and I stated 'I want my $300 back. I paid for care I wasn't receiving and would have to pay another doctor to get the same thing that was already promised to me'". The physician's office never paid Zaid back.

Unsatisfied with the circumstances, Zaid contacted the College of Physicians and Surgeons of Ontario (CPSO) and explained the situation, and the CPSO agreed he should not have been charged. Furthermore, they suggested contacting the Ontario Ministry of Health and Long Term Care (OMHLTC). Launching investigations with both organizations, they each reached a similar conclusion by the fall: medical documents are essentially prescriptions in the sense that patients cannot be charged for them, and the OMHLTC awarded Zaid his $300 back. Additionally, the OMHLTC made the physician office return those funds to them. When I asked Zaid if anyone who had been charged since April 2014 could be reimbursed, he described a relatively easy process, “to get a refund, you just need a receipt and a copy of the medical document”. For Ontario patients, for example, you can contact the Ontario Ministry of Health and Long Term Care, as Zaid did.

"It was like buying concert tickets, I couldn’t do it, I couldn’t be online everyday at 3pm to order my medicine, I needed to sign up with another producer”.

Zaid originally registered with one of the pioneering Licensed Producers (LP) in Canada. The product quality was great, having purchased a particular CBD strain, which worked remarkably. Since he had only purchased a small amount to try it, he later decided to put in a larger order of the same strain. Once he received his medicine, he noticed the smell and look was different, “it was awful, it had smelled unlike the previous batch or any other strain I had smelled before… I called them and said, ‘What’s going on? You sent me something that is not the same product’".

Receiving a call back from the CEO, he explained they had used a clone and it was a hybrid rather than a full strain, something Zaid detected from the effects as well. “That really taught me the importance of standardization”, Jonathan explains, “I felt like I was lied to. If it’s not the exact same product then they should have to rename it as it has different medical effects- it shouldn't be marketed as the same product”. Compounding the problem was minimum orders. Being required to a minimum of 10 grams, Zaid found it became quite costly to experiment with a range of strains that were often hit or miss (as he wasn't offered much guidance under the MMPR).

In the meantime, around June 2014, he also was in the process of filing a Restricted Drug Use Form through the Health Services at the University of Waterloo, which allows students to access drugs that aren’t typically covered by the formulary. He wanted coverage for his medical marijuana in spite of it not having a DIN. He recalled,  "They came back to me and said they weren’t going to approve marijuana because it didn’t have a DIN." Having experienced a similar claim before, Jonathan said "you already approved coverage for my sleep medication, which similarly has no DIN."

The Director of Health Services took the issue seriously, and wanted to bring this to the Health and Dental Plan Committee to discuss the case.  Zaid thought this was a good opportunity to present his evidence, and was invited to the meeting as well. After hearing nothing for quite some time, a representative eventually informed Zaid that the committee had met without him and that a decision had been made that medical marijuana would not be covered under the plan.

"I was not going to accept that it wasn't covered and I said that I wanted to present my evidence as previously agreed upon. I think they realized they did something wrong at that point so they agreed to call another meeting with me present."

One of Jonathan’s main goals with CFAMM is to open discussions with individual patients in order to create CFAMM’s full policy. Through CFAMM, he also hopes to create some type of dispute resolution process between patients and LPs.

When the committee finally convened in September, Jonathan was given the opportunity to present his case. Equipped with medical records, various letters of support (including multiple physicians, as well as Licensed Producers), research, and results from his own sleep study that demonstrated significant improvements since using cannabis, Jonathan conveyed multiple reasons why medical marijuana should be covered under the student extended health plan.

The committee agreed to take this information back to Sun Life, meeting multiple times without Zaid and also attending and presenting this information at a conference on Student Health Services to start a dialogue about medical marijuana at the post-secondary level. He believes they carefully and thoughtfully considered his case, eventually approving medical marijuana and a Volcano Medic Vaporizer in December. They essentially flagged his account for medical marijuana, notifying him that he would have to pay for the medication upfront, then later submit the receipts for reimbursement.

“From all the research I’ve conducted, this sets a precedent in that others will no longer have to spend seven months jumping through all the hoops," says Zaid, "The committee now knows there’s the ability to cover it regardless of the fact it does not have a DIN. Any student that needs coverage can submit a Restricted Drug Use Form for medical marijuana and it shouldn't be a problem. A student from the University of Waterloo, who already is a medical marijuana patient, inquired about the process so hopefully the committee will respect the precedent for their case ”. This was all part of a very lengthy process. From April until December, Zaid was met with various obstacles in having cannabis treated like any other medicine.

Zaid is advocating for medical marijuana patients outside of the university, as part of an organization he founded, “Canadians for Fair Access to Medical Marijuana” (CFAMM). He wants to make known that coverage is possible for medical cannabis as well as Volcano Medic devices, the only Health Canada approved medical cannabis inhalation device.

Zaid was also meeting challenges personally in dosage and titration. He has had to experiment a lot with his dosage, but now finds vaporizing 2-3 grams of up to 5 different strains effectively manages his various symptoms throughout the day.  Starting with high CBD strains, he slowly introduces THC as the day progresses, allowing him to stay focused on tasks, such as school.

Self-titration is still what Zaid considers an “ongoing process”. This really touched on what I would consider a big problem in strain selection across various LPs: when patients find what works for them, which is a process in itself, they may not always have access to the same strain depending on the producer they’ve registered with.

In June of 2014, he also met with a sleep specialist and psychiatrist, expressing concerns over his current LP. He felt he didn’t have consistent access to the strains he needed.

"It was like buying concert tickets, I couldn’t do it, I couldn’t be online everyday at 3pm to order my medicine, I needed to sign up with another producer”.

Placed on a four week waiting list for his new LP, Zaid called back about 3 weeks later to find out his spot had not moved and he would have to wait another month, which turned into a waiting game that lasted from June to September. In the interim to fill the gaps, Zaid utilized dispensaries, where he admits the first place he tried really lacked a medical component, including consistent access to strain selection. After moving on to what he felt was a more reputable dispensary, he found the quality was a bit better but too expensive at an uninsured $8 per gram. Another big issue for Zaid was the lack of testing, citing concern for safety and strains mistakenly labeled as “CBD strains” without actual being tested for CBD content. Zaid decided he needed to focus on accessing pharmaceutical grade strains through LPs.

“I didn’t know what to do with these accomplishments… I was just one person and I had no PR team, or real media coverage and saw that these issues were persistent and not going away"

Strain selection and consistency is why he registered with an additional LP in September, noting that their main strain was a relative of a strain that helped his headaches the most.  Zaid prefers their 1:1 THC to CBD strain which has helped tremendously during the day, providing pain relief without the high. With a lower base price, he found their compassionate pricing fair. Currently now registered with three Licensed Producers, his next goal is to present evidence to insurance stakeholders about the relative cost-benefit of implementing medical cannabis coverage, a drug much cheaper than traditional pharmaceuticals from an insurance perspective. “They’re used to looking at drugs that at times cost hundreds of dollars a day, so when they see something that costs $30, and will replace 5 prescriptions potentially, it's a cost-saving for the insurance company.”

Playing off a well-know debate between pick-up and mail order pharmacies—Zaid believes that consistency and standardization is the key to mail order success. A patient should be able to sample a strain once from a LP and then be guaranteed consistent supply of the strain with the same chemical profile every time. Although acknowledging it takes a bit of trial and error, being able to rely on a consistent, standardized strain selection is what he believes sets his new LPs apart from others. “There's no real need for me to go into a dispensary anymore because every time I receive my medicine it smells, looks, and works the exact same. There's no more playing the lottery with my health when it comes to strain selection."

After the dust had settled, Zaid wasn't sure what to do with the information. “I didn’t know what to do with these accomplishments… I was just one person and I had no PR team, or real media coverage and saw that these issues were persistent and not going away… doctors were still charging people, and I didn’t think a simple press release was going to get rid of all the problems. I knew that more work had to be put into it.

So I decided to start CFAMM to, first of all, proliferate the message of what had happened, but also to get patients to advocate for themselves." CFAMM is communicating up with the industry association [CMCIA], LPs, government, and other stakeholders to advocate for fair access. "I know cost is the biggest concern to the average medical marijuana patient, but at the same time we focus on the price that the LP charges, rather than the price that the patient actually pays. What we need to focus on is the final price and say to patients, ‘Its okay for a company to charge around $8 per gram because they need to make some money to survive as a business and in order to be able to provide medication.  The key is that patients shouldn’t be paying the full $8 per gram, as medical marijuana should be covered and tax-free’.

CFAMM is a national organization, but still in its infancy. Zaid is the one doing the legwork, and as such, says there is a stronger focus in Ontario currently, where he has navigated these obstacles himself. Already getting many requests for help with insurance coverage from patients and groups across Canada as well as hearing from people trying to navigate the MMPR. He identifies a wide range of patients reaching out to him, with about 40 patients joining his organization. Zaid was just asked to join the patient advisory board of the Licensed Producer Bedrocan, but underscores that CFAMM and himself are not tied to one organization, and continues to meet with a range of Licensed Producers regularly to advocate on behalf of patients' rights.

One of Jonathan’s main goals with CFAMM is to open discussions with individual patients in order to create CFAMM's full policy. Through CFAMM, he also hopes to create some type of dispute resolution process between patients and LPs. This would be one way to help develop solutions for patients who often feel unheard expressing their concerns with LPs. Zaid also hopes to reduce the stigma surrounding medical marijuana through education and advocacy.

What is the biggest challenge Zaid has faced through this rollercoaster of access? “Probably the point when I finally got a doctor to listen to me, got the prescription, had it sent in and then still not being able to access medicine”. Zaid would like to see access happen almost immediately after getting a medical document. He also would like to see a database for patients which would allow them to switch producers with ease, without having to return to their doctors, like how traditional pharmacies can transfer prescriptions. Jonathan wants patients to have some form of federal identification, as photocopied medical documents are often not enough for law enforcement and other authorities unfamiliar with the MMPR.

“There aren’t many of us… right now there’s only about 15,000 patients registered with the MMPR, so the average police officer won't encounter medical marijuana identification that often. They’re not necessarily educated about it, so we need to involve law enforcement in these discussions because they need to support us too. I think there is a lot of policy issues right now with medicating at work, at school, in public, and while driving. Since we don’t yet know all of these answers, we need to continually work with law enforcement so we're on the same page”.

Meeting Zaid for the first time at the Canadian Students for Sensible Drug Policy (CSSDP) conference, I, along with others in the audience and panel, were equally compelled by his story – a reflection of what access should look like for the MMPR. Listening to Zaid, and as a sociologist, I realized that we can’t uncouple his success from his social position - he is young, educated, ambitious and very well-spoken. Having the “social capital” – which refers to capital extending beyond economics that may be social, cultural, or symbolic –  can be equally important in the way Zaid was able to navigate these complex bureaucratic systems with patience and success.

The reality is that some patients may not have the experience, skills, or ability to advocate for themselves, which is why CFAMM may end up being an integral part of fair access for patients. As we watch this unfold, I wonder if same success will be extended to people with health issues traditionally viewed as less ‘legitimate’ for cannabis use – particularly things like anxiety, depression, and insomnia. Whether one acknowledges it or not, there is a hierarchy of legitimacy that exists within this structure. Will these patients be able to get coverage? Additionally, if we speculate that over half of current patients have access to the MMPR because of fee-based clinics, what will access look like if we removed many of these clinics from the equation? This is all part of an ongoing dialogue we need to continue having as the MMPR continues to develop in Canada.

For more information, you can visit Canadians for Fair Access to Medical Marijuana’s website at http://cfamm.ca/ follow them on twitter at @CFAMMcan, or like them on Facebook. You can reach out to CFAMM if you’ve paid for a medical document since April 1st, 2014, or would like assistance with the MMPR.

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1 comment

  1. ernie yacub Reply

    excellent article, thanks also for Nova Scotia: Board Rules in Favour of Insurance Coverage for Medical Marijuana

    so many more people would be able to buy cannabis if it was covered by insurance and the insurance companies would benefit from paying out less for prescription meds.

    duh! eh.