A personal story about medical marijuana

season 2 Episode 4: some patients find relief in medical marijuana

On this episode, the personal experiences of people finding ways to move beyond chronic pain. 

One of them is Anne Hoffman, a reporter in Philadelphia. Anne says medical marijuana brings her great relief from chronic, debilitating migraine headaches.

The plant is now legal in dozens of states for medicinal use. Some people with chronic pain now rely on it in place of opioid painkillers. But, in the absence of formal medical guidance, many patients, like Anne, are going it on their own, with informal guidance from their peers. Some experts are not convinced though. They caution against potentially harmful side effects.

Anne brings us this intimate look at medical marijuana. 

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TRANSCRIPT

Anna Boiko-Weyrauch: This is Finding Fixes, Season Two, Episode Four. I’m Anna Boiko-Weyrauch. 

In the last episode, you heard about ways to treat chronic pain that don’t necessarily involve opioids. We’re keeping our focus on that topic in this episode too.

You’re going to hear the personal experience of other people who are finding ways to move beyond chronic pain. 

Anne Hoffman is a reporter in Philadelphia. She’s one of those people. Anne says she gets great relief from her own chronic pain from medical marijuana. 

The plant is now legal in dozens of states for medicinal use. Some people with chronic pain now rely on it in place of opioid painkillers. 

In the absence of formal medical guidance, many patients are going it on their own, with informal guidance from their peers. Some experts are not convinced though. They caution against potentially harmful side effects.

In this episode, you’ll hear from researchers on what we currently know about the science on medical marijuana and pain. 

And Anne brings us this intimate look at medical marijuana through her eyes and the eyes of other patients who are enthusiastic about its benefits. 

Here’s Anne. 

Anne Hoffman: Chronic pain, I can tell you in personal terms, can destroy lives.

I have chronic, debilitating migraines. I missed my grandma’s funeral because of a migraine. I’ve missed work, I’ve missed time with loved ones and I’ve missed deadlines.

There's been too little research into the cause and treatment of migraines. Patients will often experiment to see which remedies offer the most relief. For me, that was medical marijuana. Simply put, on medical marijuana, I had fewer migraines and less pain. Medical marijuana also allowed me to care less about my disease. 

But I navigated this path alone. 

The people who led the earliest fight to make medical marijuana legal, safe and available in the US were patients. 

Here’s a national news report from 1995.

Reporter: This is a so-called buyers’ club in San Francisco. Where hundreds of people a day gather to purchase and smoke marijuana as a treatment for various medical conditions. 

Hoffman: Buyers clubs were places where patients could meet and try out homemade marijuana products. Eventually, these patients formed a movement. 

Reporter: Hazel Rogers is 76 years old. 

Hazel Rogers: Well I’ve got glaucoma, breast cancer, arthritis, and a few other things of old age, you know. And marijuana helps all those things. 

Reporter: This man gets chemotherapy for cancer and he says the marijuana relieves side effects. 

Man: In terms of the nausea, it makes it go away. 

Hoffman: AIDS, cancer, glaucoma, Patients with these conditions reported phenomenal effects from using marijuana, and it politicized them. In California, in the 1990s, different groups of patients worked together to help pass the first ever medical marijuana law in the United States. They called it The Compassionate Use Act.

These days, patients are once again leading the way—using medical marijuana to battle another condition—opioid dependence and chronic pain. For this story, we’re focusing on two people. Two patients. Robin Guerrero and her mentor of sorts, a woman named Ronnie. We’re just using her first name.because technically what she’s doing is illegal. 

Let’s start with Robin. 

At her house recently, with her dogs barking in the background, and I noticed this old photo of her and her husband. She looks very different in that photo than she does now.

Robin Guerrero: I look dead in the eyes, don't I? 

Hoffman: I mean you look beautiful, but you look so different than you do now. 

Guerrero: Everyone tells me that! Everybody tells me that even the color of my face in my eyes, everybody tells me about the sparkle in my eyes now. 

Now that's pretty cool. 

Hoffman: These days, Robin is blond. Her face is relaxed and her eyes have an open look. In the photo she has thick brown hair and her face looks tense. She looks like she could disappear into the pink sweatshirt she’s wearing.

Back then, she used opioid patches and benzodiazepine pills like Xanax to treat her chronic pain. Benzodiazepines—which include drugs like Xanax and Valium—treat anxiety. 

Her husband, Chris, is also in that old photo.

Guerrero: My husband doesn't look too happy in that picture either. 

Hoffman: Yeah, looks like there's maybe there’s a little strain between you? 

Guerrero: There was a big strain between us! And I'll tell you it was Xanax, and Xanax is what the strain was. 

Hoffman: Robin was taking Xanax, which remember, is a benzodiazepine, along with opioids. The Xanax made her feel calm and the opioids helped her with her chronic pain. But she says the combination wasn’t good or sustainable. 

Ronnie, the other character in this story, is Robin’s friend and medical marijuana mentor. She had a similar experience. Here is how Ronnie describes her life on opioids:

Ronnie: It drives you into a deep dark pit of despair, because you're chasing that pill. And in between, you know, between the times that you're not taking the pill you're waiting for the next pill. It's just, I don't know, a madness. 

Hoffman: These patients say that cannabis didn’t just help make them feel better. Like those buyers’ clubs in the 1990s, patients say the drug helped them find each other. Ronnie says it helped them form a community 

Ronnie: A lot of us, we might not have the same background, but we share a love for the plant. 

Hoffman:These patients met online—through medical marijuana message boards and facebook groups. And they became closer because now...they are all activists. The road from isolated and down to much happier and well, active? They traveled that road, they all say, because of cannabis and the community around it. 

Robin Guerrero—that person who looked dead in the eyes from the picture where we met— lives near the Poconos in Pennsylvania. 

The valley where she lives is surrounded by hills and mountains. Her home is a whirl of activity. 

A sign hangs on the wall of her screened-in porch. It says bless this mess. There are pictures of kids on the wall, vitamin bottles on the counter, and stickers that show off the marijuana leaf. 

But one of the first things Robin told me was that she was never a “pot girl.” In high school, she experimented. But she didn’t like what she calls the head high. 

Then, in 2006, Robin injured her back. What happened next is familiar. 

Guerrero: And the doctor...put me on fentanyl patches. 

Hoffman: Soon, she was taking more and more fentanyl. 70 micrograms of Fentanyl turned into 75. Then 100 micrograms of Fentanyl. 

Guerrero: After the patches came the 120 milligrams of morphine IR for PRN for the breakthrough pain and came the Xanax. 

Hoffman: Morphine IR for PRN—that means Immediate Release Morphine, to be taken as needed. 

Those are megadoses of opioids for chronic pain plus Xanax to calm what her doctor called uncontrollable anxiety. 

She worked in the mental health field and had been attacked by patients at her job twice.

So one Xanax, turned into two, and then five.

Guerrero: I thought that I would either die from, or on, Xanax. I really did. 

Hoffman: That fear makes sense. Deaths of patients who overdosed after combining synthetic opioids and benzodiazepines has steadily increased since 1999.

Despite all the opioids and anxiety medications, she was still a ball of nerves. And then, something major happened. 

Guerrero: The doctors took me off of—with this big opioid epidemic, took me off of all my prescriptions without an out. I didn't know what to do. 

Hoffman: So, she decided to buy Fentanyl on the street. She snorted it inside a McDonald’s bathroom and woke up in a hospital bed. Robin had overdosed. 

Guerrero: A bottom? Yeah it was a bottom. 

Hoffman: Nothing could be worse than this, she thought. 

While all this was happening, Robin was also following the state’s efforts to legalize marijuana, because her son was diagnosed with ADHD. He eventually enrolled in the state’s medical cannabis program as part of his treatment. 

Eventually, she entered the state medical program herself, with a diagnosis of chronic pain and PTSD. she tried smoking marijuana, and again that head high came back. And she didn’t like it. But she got little guidance. She complained on message boards: “Can anyone help me?” She wrote. “I’m in pain, I have anxiety, and smoking joints isn’t cutting it.”

She was about to throw in the towel, and then—

Guerrero: And along comes Ronnie and she said listen this is what this is what works for me. And she told me about microdosing. 

Hoffman: Ronnie is a kind of a cannabis midwife. 

Guerrero: Robin, I've helped her. She was struggling because she didn't know how to consume cannabis. She didn't know how to how to dose it properly.

Hoffman: Ronnie researches, experiments and concocts edibles and tinctures. In Pennsylvania, people with medical marijuana licenses can modify the product—but they can’t sell or even gift those altered products to others. People seek out Ronnie for help, like Robin did. 

Ronnie told Robin to take small, daily doses of—with edible marijuana or marijuana concentrates for six weeks. 

Robin thought she’d never be able to quit her prescriptions.

To help make the switch, Robin started putting pot gummies in her old opioid pill bottles.

Guerrero: It took me six weeks of a commitment to do this. And after six weeks I finally started getting pain relief.

Hoffman: And she also quit Xanax. 

Guerrero: Learning how to microdose the way Ronnie taught me—three months in, I didn't need Xanax anymore. It was a side effect, the anxiety, I don't want to say disappeared but it was controllable. 

Ronnie: What I make right now that that I really enjoy are the gummies because they're easy to dose. 

Hoffman: Here is Ronnie again. 

Ronnie: They're fun to make. They're squishy, they're wiggly, they’re kinda cool. 

Hoffman: The gummies can come in all shapes and sizes. Bears. Pot leaves. Stars. Even lollipops. 

Patients buy different molds on eBay or at a craft store. They say the amount of medicine put in each is what matters.

Ronnie is not a doctor, but she studies complex neurobiology concepts—specifically, the naturally occurring endocannabinoid system—to learn how cannabis works on the human body Ronnie spends time reading medicinal cookbooks from the 1880s. In one, she found a recipe for a popular cannabis tincture. 

Ronnie had chronic pain from a motorcycle accident in the 90s. She was given opioids to deal with the pain. Then in 2003, her twin brother died by suicide.

Ronnie: I went into a deep state of depression and I went to a psychiatrist after being forced by my family members and they—walking out of that first appointment. I walked out with five prescriptions. 

Hoffman: She was on a mix of antidepressants, benzodiazepines and opioids.

She says that mix left her feeling miserable and cloudy. 

She started experimenting with high concentrate cannabis oils. Three years later, she hasn’t taken an opioid since. 

Ronnie: It doesn't always get rid of the pain, but it helps me alleviate and not concentrate on so much and I've noticed that when I use the high—higher concentrates it dulls the pain much better than the morphine ever did. 

Hoffman: For me and my chronic migraines, my path to relying on medical marijuana was also pretty informal. I live in Philadelphia, where it's legal, but dispensaries are not open to the general public. 

The list of conditions here that can qualify you for a medical marijuana card was designed to be restrictive—and migraines are not on the list. My doctor knew nothing about medical marijuana when I brought it up to her a year ago. 

Instead, I got started with advice from other patients, reading medical studies on my own, and, like Ronnie, taking trips to California dispensaries.

As of 2019, Medical marijuana is legal in 33 states and in DC. But medical professionals are slow to embrace it. Coming up, we meet a doctor and a nurse at a health conference where most medical professionals will only whisper the word marijuana. 

I’m at a hotel banquet hall in suburban New Jersey. We’re about 20 minutes outside of Philadelphia, a city that’s been hit so hard by the opioid epidemic that local Starbucks have installed blue lights in their bathrooms to make it harder for people to find veins to shoot heroin. 

The room is packed. The attendees are all medical providers—like nurses, dentists and doctors. They’re here to learn about how marijuana could help ease the opioid epidemic. 

Medical marijuana was legalized here almost ten years ago. 

Still, only one conference goer would talk to me on the record, and only with her first name. 

Her name is Marge, and she is a nurse at a family practice. 

Marge: I’m thrilled that we’re getting, we’re starting to be able to use medical marijuana in New Jersey. Thrilled.

Hoffman: She’s thrilled—That’s because it seems to be helping her patients—especially older ones. She says they’re using it to get off opioids for pain and benzodiazepines used for anxiety. Still, it’s a little taboo. 

Hoffman: So I can't help but notice that you've sort of like, whispered sometimes when we talked about like marijuana and—

(Marge laughs)

Hoffman: Dr. Rajinder Hullon led the training that Marge went to today. He grew up in Malaysia where recreational drug use is a huge no-no. 

Convicted drug traffickers there are automatically sentenced to death. 

Rajinder Hullon: There still is a stigma. I try in my own little ways to remove that stigma as well, you know, as medical professionals we have to keep an open mind. I would like to think that I have changed some views here today for the better. I think that that's one way that will help us to move forward to use marijuana as a pharmaceutical alternative. 

Hoffman: The human body has a natural system that produces its own molecules that are like cannabis. Dr Hullon wants to learn more about it. He says that system could tell us more about how to treat pain and neurological disorders. 

Hullon: I think there's a tremendous potential for marijuana prescribed medicinally. I think that it will lessen the dependence and the focus that we have on opioids, especially for conditions where patients have no other options and then they find that they dead ended on opioids. 

Hoffman: What he means by dead ending on opioids is that opioids can actually make chronic pain symptoms worse. As we learned earlier in this season, taking high doses of opioids over a long period of time can actually make you more sensitive to pain. Dr. Hullon thinks marijuana could offer relief for patients who have hit this wall. 

But he doesn’t have all the information he would like. So, how much do we know about how effective medical marijuana really is to treat chronic pain? 

Reporter: Today a report in the Journal of the American Medical Association—

Hoffman: If you go back to that news report we heard earlier- the one from 1995—

Reporter: NBC’s Robert Bazell tonight—

Hoffman: NBC News reporter Robert Bazell said a lot of the same things I’m telling you today, in 2019. Patients are getting relief from medical marijuana, but there isn’t much in the way of rigorous research. 

Dr. Donald Abrams, a noted AIDS specialist, has tried for two years to do a study of marijuana’s effectiveness as an AIDS treatment. 

Donald Abrams: The government, for reasons that are beyond me, that are obviously political, are not interested—really—in seeing studies that may demonstrate that marijuana has a medical benefit. 

Hoffman: 25 years later, marijuana is still a Schedule I drug, and there are still a lot of barriers to studying it. 

But nother thing that hasn’t changed? Positive patient reports. Anecdotal evidence of medical marijuana’s effectiveness. These days, those anecdotes are becoming more and more important to new, emerging scientific research 

Ziva Cooper: We’re hearing these anecdotes and these experiences from people who are using medical cannabis and a lot of them are reporting phenomenal effects. 

Hoffman: Ziva Cooper is the head of research at UCLA’s Cannabis Initiative. The University has a whole multidisciplinary team looking at marijuana.

Cooper: When we hear repeatedly about these effects, it drives us to ask the questions. And so that's an example of, I guess, the power of the anecdote, or the power of patients’ subjective reports. 

Hoffman: And of course, Cooper wants to do much more research and get a lot more data. The kind of research that she is doing, on cannabis and opioids, is extremely rare.

Cooper: Scarce is an understatement.

Hoffman: Because marijuana is a Schedule I drug, the federal government restricts funding for research. So at the Cannabis Initiative, the staff is actively fundraising. 

And because we don’t have enough studies, there are a lot of gaps in the medical literature about marijuana. Which means that marketers can falsely promise the world 

Margaret Heaney: Right now it's a big mess. 

Hoffman: That is Margaret Heaney, a cannabis researcher who teaches neurobiology at Columbia University Medical Center.

She says Medical Marijuana is quickly becoming a hugely lucrative business. 

And marketers will tell you that medical marijuana will cure just about anything. There are signs all over Philadelphia, where I live, advertising CBD oil—claiming that it cures anxiety, insomnia, pain, and more. 

Margaret Heaney: For public health reasons we just need a better system both of regulation and for determining what it’s going to work for and what it’s not working for. 

Hoffman: CBD is an exciting compound and researchers are actively studying it. But the fact is, marketers are way overselling it. 

But there have been some solid, peer-reviewed, studies that addressed marijuana’s ability to treat chronic pain—the kind of pain that Ronnie, Robin and I have. 

AND In 2017, The National Academy of Sciences put out a report called The Health Effects of Cannabis and Cannabinoids: Cooper was a committee member. 

Cooper: There is substantial evidence that exists supporting the utility of cannabis and cannabinoids, those chemical constituents of the cannabis plant, to help with specifically chronic pain. 

Hoffman: Cooper is saying patients who were treated with cannabis or compounds from the plant are more likely to experience a clinically significant reduction in pain symptoms.

And Cooper is also leading research that looks at possible relationships between opioids and cannabis. 

In a study published in 2018, Cooper and her team found that when people combined cannabis with opioids, they needed a lower dose of the opioid to get pain relief. The research is promising, but still early.

It’s also important to note that medical marijuana in the treatment of chronic pain also has its critics. 

One doctor who is not convinced that it’s a good idea? Dr. Anna Lembke. She is a psychiatrist and the Medical Director of Addiction Medicine at the Stanford Medical School. 

Anna Lembke: Many of my patients get psychotic or get paranoid symptoms. I even had one patient who ended up in the hospital because of cannabis induced psychosis which he had started using to relieve his pain. 

Hoffman: Dr. Lembke is not thrilled with the side effects. 

In addition to possible psychosis, there are other potential harms associated with marijuana use in general. It’s not good for adolescents and pregnant women. 

You can become addicted to it, though researchers consider it less addictive than tobacco and alcohol. 

But for Dr. Lembke, another big issue with medical marijuana and chronic pain, isn’t really about marijuana at all.

She says, the biggest problem with chronic pain in general is that doctors overmedicate it, as we’ve heard in past episodes. For years, doctors over-focussed on pain, according to Dr. Lembke. But that focus can trap patients in a cycle of taking more and more pain medication and not experiencing less pain.

So Dr. Lembke’s preferred approach is less about taking something and more about doing something.

Lembke: I'm always recommending physical therapy, acupuncture, massage trigger point injections, and any amount of exercise that they're able to do. 

Hoffman: But one thing she says drugs like medical marijuana can do is provide patients a window into what their lives could be like without the persistent gnaw of chronic pain.

I want to close this story by talking about one more patient.

George Armstrong: My name is George Armstrong. I’m a father of two, and a grandfather of three. And, I’m a cannabis activist. 

Hoffman: George was in a horrific car accident in the 90s. He was left with chronic ankle pain and post traumatic stress disorder.

Armstrong: I had the opiates to deal with the chronic pain, and I ended up being on them for five years. But in 2012, they started adding benzos and muscle relaxers, anxiety meds, depression medications. 

Hoffman: All the medications, he says, with all of their side effects, made it impossible for him to work He says he was quickly in a very bad place.. 

Armstrong: I stayed on them for—and you have to forgive me—I don't have an exact timeline because my head at the time was in such a bad place. 

Hoffman: He transitioned on his own to recreational marijuana use. He got his medical marijuana card in 2017.

Armstrong: Yeah, a lot of people that knew me five years ago have definitely noticed a difference. 

Hoffman: I can attest to that. George was one of the first people I ever interviewed about medical marijuana for local Philadelphia public radio station, WHYY. During our first phone interview, I got the sense that George was intense, even angry. 

George told me on that first phone call that he hated having to buy his medicine on the black market. It filled him with resentment. “After all this time,” he would think to himself, “I’ve finally found a drug that helps me feel better, and I have to buy it illegally?” But he says getting his medical marijuana card changed all of that. When he came to my house for another interview, he seemed calm, full of gratitude. 

Armstrong: Even if I still have to deal with all these terrible conditions I can now deal with it. 

Hoffman: I am also a different person pre and post medical marijuana. About a year ago, I used the drug enough to cause some changes. My migraines got a lot better. My fiance told me I seemed more present. People who I hadn’t seen since the worst of my chronic illness didn’t recognize me. My face was more relaxed, they said. My eyes didn’t have their trademark dark circles. 

And the thing about chronic pain is that when it’s really bad, it can steal your sense of positive momentum. If my chronic pain told me, “you will always feel this bad, your life will amount to nothing,” medical marijuana seemed to say, “So what? You’re alive. And that’s pretty cool.” Medical marijuana gave me a window into what my life could be without chronic pain. It taught me to detach from my own suffering. 

It gave me hope. 

For Finding Fixes, I’m Anne Hoffman in Philadelphia.

Boiko-Weyrauch: Next time on Finding Fixes.

Boiko-Weyrauch: Finding Fixes is a project of Investigate West, a nonprofit journalism organization working in the public interest. 

Financial support comes from the Philadelphia Foundation, Moccasin Lake Foundation, and listeners like you. Please support this podcast and make a tax-deductible donation at FindingFixes.com. 

While you’re there, you can drop us a note or you can send us an email at fixes@findingfixes.com.

This episode was reported by Anne Hoffman, produced by Nicolle Galteland, edited by Alisa Barba, Kyle Norris and me, Anna Boiko-Weyrauch. Music by Jake Weholt. Production help from Deirdre Kennedy. 

Special thanks to everyone we talked to in this episode and thank you so much for listening.