Coronavirus, my chronic illness, and the alternative

With decreased access to medicine, will people start making their own? (Photo: Wiki)

For years, my friends have pushed me to get a medical marijuana card. I’ve taken medication for my epilepsy since I was 13, and it hasn’t always been pretty. Depression, anxiety, and irritability were all symptoms I endured from my medications during my last year riddled with puberty. So why wouldn’t I try some CBD (with a little THC, of course) when COVID-19 is bringing back these emotions naturally? 

The possibility of needing any form of healthcare unrelated to coronavirus right now is daunting. As someone directly impacted by pharmaceutical companies and the nefarious American healthcare system, knowing that the threat of having just one seizure makes me one of the “lucky ones” (pardon my sarcasm, but it’s deeply felt) horrifies me. So right before quarantine when I found out my medications were on back-order, I knew I was not the only one bound to suffer. A woman with lupus reported last month that “she received an online message from her health care provider stating that it will no longer refill her vital hydroxychloroquine prescription because that drug is being used to treat the ‘critically ill with COVID-19.’” If her condition got worse, her provider told her, she was to contact her doctor to discuss alternative treatments to medicine she had been taking for ten years. Discovering proxy medicine is not unique to her situation, especially as the United States’s two largest medicine importers, India and China, have announced imposing restrictions on the export of over two dozen drugs and drug ingredients amidst the virus.

Just over three million Americans have epilepsy while one million of those have uncontrolled seizures, leading people – especially parents – to find alternative solutions. My easiest option, medical marijuana as an antiepileptic, isn’t a cure-all. In 2013, one family paid $600 towards a cannabis collective to access medical marijuana from London but continued to run into problems with dosage, accessibility back in California (where it had been legal for almost 20 years), and its effectiveness. The father, whose 14-year-old had up to 100 seizures daily, called the process “anything but simple,” when a parent from the collective who was also a neurologist developed a method to make medical cannabis at home.  

Dreadfully awful at science, I knew I could not start up my own Breaking Bad lab with online recipes that might not even work for me, even if finding weed would take three hours during a state-mandated stay-at-home order in comparison to the three days it takes to get my prescription from the pharmacy. But the concept of cannabis collectives sounded fantastic. After much research, I could only find dispensaries in New Orleans – the for-profit version of collectives – which are considered essential businesses during the COVID-19 pandemic. This is great for those who know their dosage of Epidiolex, the prescription for people with neurological disorders like myself, but prices for the drug without a generic version can cost $32,500 yearly without insurance.  

Continuing to embark on my anarchistic the-FDA-doesn’t-even-care-right-now wave, I delved into finding DIY medicine proxies for other chronic illnesses when I came upon Four Thieves Vinegar. Believing in free medicine for everyone, the leaderless organization created a $30 “EpiPencil” at-home recipe to replace the $700 EpiPen and are “developing a desktop lab and a recipe book meant to equip patients to cook up a range of medicines, including a homemade version of the expensive hepatitis C drug, on their kitchen counters.” Looking past the facade of societal views of health and medicine, these revolutionary alternatives may play a pivotal role in how consumers perceive Big Pharma. 

Without a cure to the coronavirus and expectations that one won’t come for another year, more people are becoming less trustful of our healthcare system across the board. Thousands of people being hospitalized for COVID-19 daily begs the question: what will happen in case of an emergency? Will hospitals have room for me? This makes now a significant time to think about medicinal replacements – and I’m not talking herbal remedies. The larger collectives become, the more power they have in helping people with daily necessities. Of course, this may all change when a cure comes along. In a world unlike any we’ve ever seen, however, creating new opportunities will be powerful in reshaping our society. 

Today, the significance of social responsibility has never been greater and a collective effort is crucial to the health and safety of ourselves and others. Staying inside, singing two “Happy Birthday”s while washing your hands and wearing N95 masks during essential excursions is important, but healthcare change can come from more than this. We can hold ourselves, as a collective, socially responsible for helping one another find alternative cures that don’t require a prescription or government approval, because this is not about the government. This is about making sure that every day, all Americans with chronic conditions, disabilities, or illnesses can get the medication they need to live life without boundaries. And hey, maybe that includes a little recreational fun.