Rare Community Profiles: From Survivor to Advocate: Ethan Zohn on Cannabis Rescheduling and Cancer Care

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Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.

From Survivor to Advocate: Ethan Zohn on Cannabis Rescheduling and Cancer Care

The conversation surrounding medical cannabis in the healthcare landscape, particularly in the realm of cancer treatment, has been both controversial and intriguing. In a 2015 article published in the Annual Review of Medicine, the authors succinctly summarize the controversy, explaining:

“The evidence for the legitimate medical use of marijuana or cannabinoids is limited to…HIV/AIDS cachexia, nausea/vomiting related to chemotherapy, neuropathic pain, and spasticity in multiple sclerosis. Although cannabinoids show therapeutic promise in other areas, robust clinical evidence is still lacking. The relationship between legalization and prevalence is still unknown…certain public health issues have become increasingly relevant, including unintentional ingestion of marijuana products by children, the relationship between marijuana and opioid use, and whether there will be an increase in health problems related to marijuana use.”

This controversy has come to a head as medical cannabis advocates nationwide encourage the U.S. Drug Enforcement Administration (DEA) to reclassify marijuana from a Schedule I to a Schedule III drug. While the proposal is still in review, recent news suggests that the DEA is choosing to move forward with reclassification.

For Ethan Zohn, a former professional soccer player and the winner of Survivor: Africa, the conversation around medical cannabis is a deeply personal one. Zohn, first diagnosed with a rare cancer called CD 20+ Hodgkin’s lymphoma in 2009, underwent multiple rounds of chemotherapy, radiation and his first stem cell transplant. When the cancer returned 20 months later, Zohn participated in a clinical study that found the cancer drug which saved his life.

Ethan Zohn head shot. Ethan, who talks about cannabis rescheduling after his CD20+ Hodgkin's lymphoma diagnosis, smiles at the camera. He has a slight beard and mustache and wears a white shirt.
Photo courtesy of Ethan Zohn

But amidst this journey, he found himself struggling with not only the stress of a cancer diagnosis, but the side effects relating to treatment. Medical cannabis had a profound impact on his experience and he now believes that more people could benefit if only we could start the conversation.

Ethan’s Story

To Zohn, the word cancer was always formidable and scary. When he was 14 years old, his father was diagnosed with colorectal cancer—Zohn’s only connection to cancer before his own diagnosis decades later. He shares:

“My dad died from his colorectal cancer. Growing up, in 1989 when this happened, cancer equaled death. So when I was diagnosed in my 30s, I instantly thought I was going to die.”

At the time of his diagnosis, Zohn was eight years post-Survivor win, spearheading Grassroot Soccer (a nonprofit adolescent health organization), and training for the New York City Marathon. He felt like he was in the best shape of his life—but he had a crazy full body itch that he just couldn’t scratch. No matter what lotion and anti-itch cream he tried, his skin felt like it was on fire. He saw a doctor, but there was no answer.

Then, after months and months of tests, Zohn learned that he had CD 20+ Hodgkin’s lymphoma, a rare form of blood cancer. Doctors immediately began treating the cancer aggressively: multiple rounds of chemotherapy, 22 blasts of radiation, and a stem cell transplant. For a while, doctors felt like they had the disease under control, but Zohn still dealt with side effects like nausea, insomnia and neuropathic pain. The hospital provided pain medicine. However, Zohn was not himself and fearful of becoming addicted. He began questioning whether cannabis could be helpful in managing his side effects, explaining:

“I was very open with my oncologist and medical team about wanting to try cannabis. As an athlete growing up, I never touched cannabis. There was so much stigma there. But with cancer, I was coming at it from the medical side of things. I didn’t want to get addicted to anything, so I was searching for alternative ways to feel better. My oncologist gave me the green light and told me just not to smoke it. That’s it. At the time, there were issues with legality, so I had to buy from unregulated sources in New York and access was difficult. Worse, no doctors were able to tell me how to use it.”

A Lack of Understanding

This is not an uncommon issue. Although 74% of Americans live in a state where medical cannabis is now legal, and 40% of cancer patients use cannabis for symptom management according to EO Care, the market leader in clinically guided cannabis care, only 30% of medical oncologists feel sufficiently informed to make care recommendations around medical cannabis. Zohn shares that this can be incredibly challenging for patients:

“When you’re dealing with cancer, there are so many decisions to make and you’re left on your own. And that’s when it is the most scary and confusing. I was curled up in my room because I was afraid to die. There are so many patients in this situation. Physicians becoming more informed about medical cannabis has the potential to really transform lives.”

When asked why he feels medical oncologists do not have the knowledge or feel informed enough to make care recommendations, Zohn cited a lack of education and awareness through medical school. He notes:

“Doctors just aren’t educated on cannabis. There might be a few hours on medical cannabis in medical school, but it isn’t a large part of the conversation. Even when visiting doctors who do provide medical cannabis certification, they often only take a two-to-eight-hour course in medical cannabis and are not legally allowed to recommend products. They say to go to dispensaries to see what works for you. This is not just challenging for patients, but expensive. Medical cannabis patients are paying $250 per month to find a treatment. Dispensaries are not hospitals and budtenders are not doctors, and they’re telling people like me what I should be using – and that’s not the right path. Once reclassification happens, I think it will open more access to people who are gravitating towards this form of medicine and will push the medical field in the right direction in terms of physician education.”

Physician education is not the only barrier to physician prescription or awareness of medical cannabis. Zohn emphasizes that reclassification could play an important role in dismantling one of the most formidable barriers—the fear of legal repercussions. Patients might be afraid to ask about cannabis and physicians might be afraid to prescribe or speak about it, worried that their license would be taken away. By declassifying cannabis, individuals would be liberated from these fears, fostering open and honest dialogues with clinicians about its usage.

Since Zohn was unable, at first, to get the necessary information from his physicians, he turned to online sources to learn more about cannabis. He found a woman from the medical community who taught him about cannabis, how to use it, and how to cook it, allowing him to mitigate the impact of his cancer treatment. This woman also explained what medication it could and could not be taken with. This is another consideration that Zohn feels is crucial in the conversation: ensuring that physicians understand where and when cannabis can and should be used. Medicalizing cannabis can provide more oversight. He explains:

“When the doctor prescribed me Percocet, they said one pill every four hours and continually check in on me. Cannabis isn’t prescribed like that. Patients often don’t talk about it, so doctors prescribe medicine without knowing what cannabis they’re taking. One of the big worries for me is contraindication. I’m shocked at how many people don’t disclose that they’re using cannabis when talking to the person that can save their life. I understand that there are concerns about legality and ‘getting in trouble,’ as well as the stigma, which is why I think reclassification can really help make this a safer, better option across the board.”

Access, Recurrence, and Mental Health

The first time Zohn was diagnosed with cancer, he was fearful—but there was so much momentum that it was easier to stay positive. His friends and family surrounded him; his physicians were always around. He heard that he was strong and he’d get past it.

Then, 20 months later, his cancer returned. To say this was deflating would be an understatement. He says:

“As a patient, it’s really hard to articulate what it means to be seriously ill. I panicked. I freaked out. I was angry, frustrated and all I wanted was to survive this thing. But my second experience was exponentially more difficult than the first time around. When the cancer came back, that’s when things got really dark for me. I was dealing with anxiety, fear, and concern as I put myself on a clinical trial with no long-term data. All my friends were starting their lives and I had to press the pause button on mine. I was a young adult: 35 years old, had my whole life to think about. Would I get married? Have kids? Insurance? Job?”

The clinical trial Zohn spoke about was the study for SGN-35 (later named ADCETRIS by Seattle Genetics). It was a new, smart, targeted therapy on the market available for people in Zohn’s situation. He was one of the first 200 people on the trial—and credits the therapy for its profound impact, saying:

“It saved my life. After, I got a 2nd stem cell transplant with my brother Lee as the donor.”

With a laugh, he adds:

“I changed my name to Leethan and am no longer my mom’s favorite son.”

But even though his life was saved and his cancer was in remission, Zohn found himself in a darker mental state than ever before. His mental health became debilitating post-cancer to the point where he couldn’t even leave the house. Doctors prescribed him drug after drug: Zofran, Ambien, Lexapro, Adderall, Ativan, Xanax, erectile dysfunction pills—all those pills, day after day, just to survive, to go to bed, to feel okay.

When Zohn moved to New Hampshire, which is close to Massachusetts, he found himself better able to access medical cannabis. Suddenly, he could take those pills—or he could simply eat a cannabis brownie. If he felt stressed or anxious about scans—a well-known phenomenon called “scanxiety”—he would use cannabis or CBD, something he still does occasionally when the anxiety flares. He explains:

“I didn’t want to take Xanax or Lexapro every day. Nature is the world’s pharmacy. Let’s use it.”

In retrospect, Zohn also believes that issues with medical cannabis access played a role in his declining mental health. He remembers how, at the beginning of his journey, he had to find cannabis on the streets of New York City, saying:

“Having patients do this is not helpful for anybody’s medical state. It’s shocking to me that cannabis has been banned for so long. If you’re a medical patient, you might have to go to work but be afraid of going high. So you’re taking Percocet or end up sneaking around, and that’s not healthy either. Patients feel like they have no avenue to get help and nowhere to go. In the future, I hope that cannabis will be covered by health insurance to promote access. If you’re going to pay for Tylenol with codeine for someone with a migraine, why not cannabis? It’ll probably save insurers money in the long run because it’ll reduce the need to take medicine for the side effects of the other medicine. Reclassification will make it easier for people to accept that this is a drug with medical efficacy and to have those conversations to reduce the stigma.”

An Advocate Emerges

The crux of Zohn’s argument lies in the transformative power of cannabis rescheduling, allowing medical cannabis to shed its stigma and seamlessly integrate into mainstream healthcare practices. This, he argues, would not only offer new avenues of hope for patients grappling with cancer-related pain but would provide clinicians with a vital tool. He shares:

“Being in the cancer community, there’s an entire movement of healing through storytelling. I’m sharing my story to help normalize medical cannabis and reduce the stigma. I became the first publicly ‘medicated’ person to run the Boston Marathon, a big moment to raise awareness of the benefits for cancer patients.”

When it comes to the stigma, and why there is still so much complexity and controversy over medical cannabis, Zohn believes the stigma is somewhat generational. He shares:

“Growing up, we were told that cannabis is bad, that it’s a gateway drug, and that you’d die if you did it. I do see the younger generation, and the AYA cancer group, as more open about cannabis use. These kids are speaking with their doctors more openly and I think that’s an anecdotal sign that the stigma is being reduced. I also think that the way we use language can help change the stigma. For me, it’s a medicine. I consider it medicinal.”

Clinically-guided cannabis care has helped to begin these conversations and is working to reduce the stigma. In sharing his journey, Zohn discovered EO Care, which is led by recognized healthcare, cannabis regulatory, and technology leaders and innovators. Zohn sees EO Care, which provides personalized, physician-guided care, as a way to overcome a broken system. He says:

“I love what EO is doing with clinical guidance in medical cannabis. I suffered a lot and wasted a lot of money. Dealing with confusion and medical anxiety wasn’t what I wanted to go through while dealing with cancer. EO Care fills the gaps with the medical cannabis doctor who can really guide patients through CBD vs. THC, when to try, whether you should use a patch or inhaler or capsule, what dosage to use, and more. This process guides people through medical cannabis use. We could scale that nationally after reclassification, it would help so many people. And to people who are using cannabis and looking for guidance, disclose to your oncologist but find an organization like EO Care that can help guide you.”

Advancing Research

Zohn also advocates for cannabis rescheduling in the belief that it would unlock the floodgates to clinical research and substantiate its medical benefits with scientific evidence, allowing cannabis to emerge as a legitimate subject of study. Through this, researchers could explore and validate its potential applications in pain management and symptom alleviation. Says Zohn:

“With reclassification, access would not just be a gamechanger for patients, but for research institutions and hospitals. I want to know what exactly is going on with symptom mitigation or if there are any parts of cannabis that can cure cancer. There are some lab studies where certain cannabinoids affect cancer cells. It’s in a petri dish, but still—we’re just starting. This is the first pitch of the first inning of a nine-inning game. Every month, we’re discovering something new. I genuinely believe that reclassification would move this path forward.”

Managing Your Cancer

At the end of the day, Zohn encourages people to find what helps them on their cancer journey. As he reflects on his own experiences, he says:

“I tried everything. I met with a Haitian woman in Brooklyn who spit on me. I did past life regression, meditation, visualization, reiki, diet, exercise, I even did laughing yoga. Cannabis has been the most helpful for me and gave me another tool in my arsenal. So I am really hoping that the DEA chooses to reschedule cannabis to a Schedule III drug.”

Photo courtesy of Ethan Zohn

Outside of cannabis use, Zohn encourages people to reach out to their loved ones and community when going through their cancer journey. He shares:

“For me, going through cancer was a really isolating experience. Talk to people. Oftentimes your caregivers are going through the same feelings—fear, happiness, sadness, confusion—but if you aren’t talking about it, you’re leaving yourself in a silo. Having conversations with people going through something similar can also be helpful. Imerman Angels offers 1:1 peer support for cancer patients, so reach out. Don’t keep yourself in a bubble.”

In championing cannabis rescheduling and better care for cancer patients, Zohn has emerged as beacon of hope—a testament to the transformative potential of advocacy rooted in personal experience. As he continues to lend his voice to the cause, Zohn invites us to envision a future where cannabis is not just an alternative but an integral component of compassionate cancer care.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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