According to chronic pain patients Melissa and Irene, switching from opioids to medicinal cannabis has had an immeasurable impact on their quality of life.
Last month the team at Applied Cannabis Research (ACR)—which operates as a division of Southern Cannabis Holdings—announced that Cymra Life Sciences would be partnering with the company to assist in Australia's longest running observational study into the effects of medicinal cannabis on chronic pain patients.
This was tremendously important news, as clinical research like the CA Clinics Observational Study (CACOS) being conducted by ACR is of critical importance to the ongoing maturation of the cannabis industry.
You got to step out of your comfort zone and out of your box a little bit just to make that change. I now see a doctor in Sydney via telehealth and he looks after my prescription with the cannabis oil, and it's been fantastic. He's very professional. I'm so glad that I did it. You have no idea. It's definitely changed the way I'm feeling, the way I think, the way I'm able to do things, the way I'm able to move. Fibromyalgia and Chronic Pain Patient, Melissa Kerr
Although medicinal cannabis is becoming increasingly mainstream, many in the medical community are still sceptical of its use in a healthcare setting, which is why gathering a surplus of clinical data is crucial to establishing the drug's therapeutic legitimacy.
However, when discussing studies like this it can be all too easy for policymakers and medical professionals to simply view the participants as anonymous data points, without considering the incredible impact that medicinal cannabis can have on a patient's quality of life.
To learn more about the tremendous benefits that cannabis can provide, we decided to speak with two patients who are currently taking part in ACR's observational study, in an exclusive interview with The Green Fund.
The first participant we spoke to was Irene, a Multiple Sclerosis (MS) patient who has been using medicinal cannabis since early 2019.
MS is a chronic illness involving the body's central nervous system (CNS), that causes the sufferer's immune system to begin attacking the protective barrier that coats nerve fibres.
This makes it difficult for the brain to send signals to the rest of the body, while also causing a variety of challenging symptoms, including tremors, cognitive difficulties—often referred to as "brain fog"—muscle weakness, and chronic pain.
According to Irene's husband Tom, they spent almost three years trying to get a prescription for medicinal cannabis before the Australian government legalized its use.
"Once it became legal, Irene made me see her neurologist, and we asked if it was all right if we could use medicinal cannabis, and he said yes, but he wouldn't give us a referral. So, we got a referral through the Cannabis Access Clinic [now rebranded as CA Clinics], and we went from there. But we actually went out looking for it to get Irene off the opioid drugs," Tom said.
"We've got a new GP now, and we've given her the information for the Cannabis Access Clinic and that, she actually asked for it. She's had quite a few people ask about medicinal cannabis, and she knew that we were on it, so we've given her all the information that we could, so she can refer other people."
Although they may have hit an initial roadblock with their neurologist, Tom explained that once they got a referral from their original GP it was smooth sailing, as the cannabis clinic offered ample assistance to help Irene complete the application process.
In fact, he says that the biggest drawback is that the drug is not currently covered by the government's Medicare program, which means that every time Irene has to see the doctor for a new prescription she's forced to pay $49, on top of the original $99 initial consultation fee.
"It would be far cheaper to subsidize the cannabis than the opioid drugs. If you're getting cannabis drugs, it'd be a fraction of the cost of what the opioid drugs would be, for the government," Tom said.
"Whenever we go to see the doctor, we have to pay the fee. That should be covered by Medicare. we can't afford private health, so it's going to come out of our own pocket."
And since becoming a medicinal cannabis patient, Irene has been able to discontinue the opioid-based treatment plan—which included powerful drugs such as Lyrica and Palexia— that she was previously reliant on.
This has led to a massive improvement in Irene's quality of life, as she no longer has to deal with the various side effects that can be caused by these medications, such as nausea, dizziness, constipation, excess fluid retention, loss of muscle coordination, fatigue, trembling and in some cases even epileptic fits.
"Since I'm off those drugs, I'm more alert in regard to my environment. And I hardly, really, really rarely, have MS pain. I have no neuropathy pain anymore. Life has changed a lot since I'm on the medicinal cannabis," Irene said.
"I know people, they know I take the cannabis, and they say, 'If I could afford it, I would get it too.' It depends on how much you have to pay. You get 50-milliliter bottles for $230. And I'm taking between three and four mils a day. Sometimes if I do get the pain during the day, I'll just take a bit more."
Unfortunately, a bottle of cannabis oil will only last her about 14 to 17 days, which means that it carries a significant financial burden for Irene and Tom, who consider themselves "a bit lucky" that they have enough income—with the help of their pensions—to be able to afford it.
Additionally, Irene has stated that she would "never consider the black market", as she believes that patients should be closely monitored while being treated with medicinal cannabis.
"And the other thing too is, depending on what you have, what disease or whatever condition you have, it changes the type of cannabis that you're given. Irene's cannabis is specifically designed for people with Multiple Sclerosis. But if you have someone that needs treatment for epilepsy or anything like that, that's a different grading or strength of cannabis altogether. So, each disease or medical condition is different. If you go to the black market, then it can be very dangerous," Tom said.
"She's more alert and aware of her surroundings and that. But when she was on the Lyrica and the Palexia, her mind was very foggy. But she's much better off the LYRICA and the PALEXIA. It's so much better being on the medicinal cannabis. And we definitely agree, it should be more widely available to everyone who has medical conditions."
"It should be available, and it should be under the government's PBS listing. And if they got rid of all the people that were on the opioid drugs, the government would actually save money because the opioid drugs are quite expensive. More expensive than the cannabis. And Irene was on two types of opioid drugs, and she's gotten rid of them, and now she's only on the cannabis," he said.
Fighting the Opioid Fog
The next patient we interviewed was Melissa Kerr, who suffers from chronic pain and Fibromyalgia, which she says is, "one of those weird conditions, which is very misunderstood and very hard to get recognized when you do have it."
Many patients who suffer from Fibromyalgia even find it difficult to receive a proper diagnosis, as the condition can mask many other disorders.
I definitely think doctors need to be more understanding of their patients who are not getting anywhere with standard treatment. They need to be more open minded to the research for certain conditions. Not just give it to everybody that asks for it, they need to qualify of course. But I just think the awareness needs to be out there more, and their ability to actually either prescribe it or refer people needs to be opened up a lot more than what it is. Fibromyalgia and Chronic Pain Patient, Melissa Kerr
This can lead to a situation where patients end up spending years bouncing back and forth between different specialists, before finally receiving appropriate treatment.
"It affects your nervous system and the way that your body processes and signals pain. So, it's kind of classed as a neurological disorder by some, but it can also be classed as a psychosomatic disorder by others," Melissa said.
"It can cause you to be incredibly sensitive to any kind of physical stimuli, light sound, vibration, touch. Also affects your gut, making you sensitive to food. Stress makes the condition worse. And it essentially makes you really aggravated by everything that a normal person wouldn't even find discomfort in."
"So, something like a fan, I can't stand the wind blowing from the fan. I can't stand even one of my little cats walking over certain parts of my body, it shoots pain like someone's sticking a needle into me. And that's not normal. That shouldn't happen. There's a process that's going wrong in how your body is interpreting those signals to be so extreme compared to what the normal person would feel."
Understandably, this had a huge impact on Melissa's quality of life, as simple tasks like going to the supermarket began to take an onerous toll on her. Even hugging her children used to cause Melissa pain, forcing her into a position where, "you just have to push through it."
Luckily, a family member in Canada—where cannabis has been legal for recreational and medicinal use since 2018—had already been using CBD oil to treat their rheumatoid arthritis for some time, and recommended she consider trying cannabis to help manage her symptoms.
Melissa's local pharmacist was similarly supportive of the idea, and even provided her with the application form need to apply to the government's Special Access Scheme (SAS).
However, this also put Melissa in a difficult situation, as she was unsure if her GP would be willing sign off on the treatment, due to the healthcare community's ongoing scepticism towards the therapeutic applications of cannabis.
"My biggest problem with actioning it was my confidence in my GP in actually signing it. So, I waited a year and stayed on my medications. I thought about asking the doctor, but I didn't think I had the right relationship with him to actually come forward and say, 'Hey, I'd like you to send me to this guy because I think he can treat me better,'" Melissa said.
"That was a worry, because I thought if I see him and he disapproves of it, I'm in a small town, if he doesn't want to see me anymore then I've got to travel, and that's really inconvenient to me because I don't drive and I was going to be stuck. So, I really waited and waited on that. And I regret that I did. I regret that I was scared to ask."
"Because I asked, and he signed it. He wasn't all that supportive, but he signed it. That was really the only setback I had to getting onto it, was just my confidence in asking my one and only local GP that's convenient to me for the permission to get the referral. So yeah, don't really have the option to doctor shop here so I was pretty scared."
Tragically, Melissa's experience is all too common for many Australians living in rural or regional areas, as patients fear that asking for a cannabis prescription may inadvertently alienate their local GP.
Unsurprisingly, the Lambert Initiative for Cannabinoid Therapeutics at Sydney University estimates that as many as 100,000 people nationwide may currently be treating an illness with cannabis obtained from the black market, as it is still viewed as being significantly easier—and often substantially cheaper—than acquiring the drug through legal channels.
As a result, Melissa spent years having to take Gabapentin and Lyrica—two common treatments for Fibromyalgia—along with a host of other medications, including antidepressants, beta blockers, Baclofen, and even Amitriptyline.
"I've tried everything. A lot of that, the side effects of that is you just don't think clearly. You feel like you're in a thick of a fog and you can't even nut out a situation like a math question. You're just gone. And that was not a pleasant experience. I feel awake now. I feel like I could be a functioning member of society," Melissa said.
"I'm not able to drive with the medication, so I'm stuck at home. But I could do something now. Whereas in the past I was stuck at home and also unable to do anything. So that's a big plus for me. I can think clearly, I'm not clouded by side effects and bogged down by…they call it fibro fog, but I think its medication fog from what they treat you with from the pharmaceuticals. It's definitely dialled the whole frequency down of all my symptoms, including the frequency I get migraines."
"So, their frequency of the lights is less, the vibrations is less, the whole system feels like it's just been dampened, if that makes sense, and relaxed. And for years I was saying to people, "I have not been able to relax for such a long time." To actually feel like I'm in a peaceful state of mind, hasn't happened for a very long time. And I've achieved that, and that is 100% due to the treatment that I'm on now."
Thankfully, the situation is gradually beginning to improve, and in July 2020 the Therapeutic Goods Administration (TGA) recorded 5,564 approvals for medicinal cannabis in Australia, representing a 20% increase on the previous month.
Although for patients like Melissa, the change still isn't happening fast enough. She says that her quality of life has improved immensely since discontinuing her former regime of opioids and anti-epileptic medication, which made her reliant on "pills to wake up, go to sleep, function, try and reduce pain, then to deal with the constipation from those pain pills, blah blah blah; I'd had enough."
"I still have the nerve pain sensitivity with touch though, that's something that it hasn't eased, but that's going to stay with me for life. I don't think there's anything that can cut that sensation out with fibro, because you still have the trigger of the contact. So, it might be turned down, the pain, but it's still there. It hasn't gone," she said.
"But the other symptoms that I had are definitely eased to the point where I can say: 'Thank God I've done this.' It's been a big relief. And some of the pain reduction medication, I did notice it would reduce certain pain, but not that sensitivity in the nerves. That was still there, and that's never changed. But also it affected your peripherals. I found I couldn't concentrate. I was all fogged and muddled on anti-epileptic."
"It's not good, and it doesn't need to happen. It really doesn't. If you've tried the pharmaceutical way and you're still not feeling better and you're afraid to ask them, that's a really sad situation. You really need to be proactive about your own health and just advocate for yourself. I wish I'd had that extra year of feeling better already behind me. So yeah, go for it. That's all I can say."
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