How Do You Define Compassion? Analyzing The Compassionate Care Act

    The only people truly suffering because of these laws are the patients. Additionally, politicians should not be determining what is and isn’t medicine, much less what diseases can be treated with particular medicines.


    By Moriah Barnhart


    Many parents and patients are left confused and frustrated at the delays in implementation of the Compassionate Care Act. We should be clear about the fact that these delays are a result of the original bill. The legislation should have simply redefined and de-scheduled hemp on a State level. Hemp is a non psychoactive plant low in THC, with many uses and absolutely no danger of abuse. Instead, this bill attempts to redefine hemp as “medical cannabis,” and then creates a monopoly that will not be able to serve the entirety of the population awaiting this medicine. The delays in the implementation of this bill are not due to a Judge’s rightful decision to throw the rules out or a lawsuit. I mean… they really wanted to draw out of a hat to choose who would cultivate and provide our children’s medicine?! The Judge’s decision, the lawsuit, and everything else that transpires from now until this is all behind us are the result of an unconstitutional bill that cannot be properly executed.


    I felt like someone slapped me in the face when they added cancer as a qualifying disease for this bill last year. I felt that making it appear as though this bill was written to help suffering babies like mine was a betrayal. I helped to amend this bill and I helped this bill to pass. Not because I didn’t know what it was the moment I laid eyes on it, but because by principle I could not oppose any legislation that even a single parent believed would help their sick child. CannaMoms fight for rights and options in the care of our own critically-ill children, and we fight for everyone else’s rights and options as well. I spoke openly to the parents pushing this bill. I explained to them that this bill was set to monopolize on hemp, which is already legal to import into the United States. I explained that Charlotte’s Web was, in fact, also hemp. I was crucified for that statement. But as the mother of a critically-ill child, nothing speaks louder than lab results and science to me and facts are facts. I also felt obligated to share these facts with other parents, as there is nothing worse than being thrust into the world of suffering babies knowing something must be done to help them.


    So I also told them that upon my arrival to Colorado in late 2013, I was shocked to discover that many of the parents there were actually adding THC into their child’s medicine in order to get better results, even with seizure conditions. This was not what I had seen or heard on any of the national news reports. Eventually, the Realm of Caring even changed their own definition of Charlotte’s Web on their website to state that it was hemp. I had no agenda but to save my own daughter, and to help anyone else we could along the way. Weren’t all parents in my situation held to the same moral standards? I told these parents that if they truly believed hemp oil might help their child, to purchase some imported hemp oil and try it! Lord knows no parent of a suffering child would willfully prolong their suffering, right? But many of these parents, even with this knowledge in hand, continued to push hard for this bill. To be honest, it was a little confusing… but it does become clearer with each passing day. I was then asked not to share this information. I felt like I had been given a gag order, only a small group of parents of critically-ill children had more pull on my actions than a judge ever could. I was even asked not to discuss the need for THC until this bill passed. I was told I would have the support of these parents for full legislation once this Compassionate Care Act passed, but many of them disappeared from the fight as soon as Scott’s signature dried. I took my daughter straight from an 8-month hospitalization to Colorado last year to have access to cannabis, where we were isolated without the love and support of our family and friends during the most difficult battle of our lives. I made two trips with my daughter to California to try to get her the best tested medicine.


    I tried to explain to anyone and everyone who would listen that I shouldn’t have to be fighting for my rights while fighting for my daughter’s life. Most people will never know what it feels like to beg, to truly beg, at the feet of elected officials. This illusion of freedom is a tightly-woven one, but it dissipates in an instant. The second you’re told your child isn’t likely to live through this diagnosis, you realize just how limited your rights and options really are in the care of your own child. My options become choosing between becoming a criminal or a refugee.


    When Florida’s Compassionate Care Act was signed in, I simply asked: what about the rest? What about patients like my daughter, diagnosed with aggressive brain cancer at the age of two? Adding it into the list of qualifying diseases doesn’t suddenly make it a disease that doesn’t require THC. Yes, THC is psychoactive. How many cups of coffee have you had today? You do know caffeine is also a psychoactive drug? Only THC also breaks the blood brain barrier and kills cancer cells, unlike many chemotherapy agents, which is why there are patents on cannabis for aggressive brain cancers. CBD is also great. In fact, I started my daughter on hemp oil before we used any other type of cannabis oil, and CBD has its own great benefits; but science cannot replicate the synergistic effect of whole plant cannabis and it cannot deny the medicinal benefits of THC as well.


    Is the Compassionate Care Act truly compassionate? Compassion doesn’t discriminate. These awful diseases don’t discriminate, and neither does medicine. The truth is, they feed these babies drugs like morphine like candy. Morphine comes from the opium plant and all it does is get you high! It’s also deadly! But I have not seen or heard one person opposing the legalization of cannabis voice concerns about drugs like morphine. From aspirin to codeine, most drugs are extracts or synthesized components of plants. Many of my daughter’s chemotherapy drugs came from plants. Only those plants are highly toxic and don’t decipher healthy from cancerous cells, killing everything in their reach. When given in incremental doses, the high from cannabis can be avoided. Actually, CBD counteracts the psychoactivity of THC. But remember, many of our man made FDA-approved drugs serve no purpose other than to get you high. These drugs kill thousands every year. The science behind why cannabis isn’t deadly is enlightening, I just wonder how one of the safest and certainly most medicinal plants on the face of the Earth is one of the only plants an entire country set out on a witch hunt for (I don’t actually wonder, because I know exactly why). The U.S. Government patented cannabis as a neuroprotectant and antioxidant, with Bill Clinton’s signature on the patent application two decades ago. They have continued to grow cannabis at the University of Mississippi while funding research in Israel for several decades. In fact, most of the studies I turned to before making my decision to try cannabis and many of the scientists I spoke to came from Israel. “A concerned mother does better research than the FBI.” I am not a conspiracy theorist, but these are not coincidences.


    Within a week of beginning cannabis-based medicines, my daughter was no longer at risk for a feeding tube. She was taken off of several antiemetic medications for nausea and vomiting, appetite stimulants, and narcotic pain medicines (none of which ever worked very well, but all with a 3-page list of horrific and potentially deadly side effects). Nothing can change what you witness with your own eyes, especially when it matches up with the science. More importantly, she continues to see tumor shrinkage at her MRI last month… 8 months off chemo! I was not a cannabis activist before I watched my daughter dying and being resuscitated. I was not an activist of any kind before I witnessed her endure hours of fear and pain every day… constant vomiting and weight loss… paralysis and brain damage. Before I watched my daughter’s perfect toddler life turn into a waking nightmare… before she went from a happy, trusting, dancing baby to a terrified cancer patient in the blink of an eye… before I laid in her hospital bed for months watching her breathe to make sure she was still alive… before they told me they could give her no pain medicine after drilling into her skull because their narcotics were respiratory suppressants (which cannabis is not)… I was not an advocate for cannabis as medicine.


    Until I learned the hard way that doctors and scientists are not Gods, that they don’t have all the answers, and that all of the chemo agents they give these babies cause later cancers… that most medications for cancer, seizures, and many critical illnesses cause severe and permanent damage to these babies’ brains and organs… that childhood cancer gets only 4% of the federal cancer research funding and that only 2 new chemotherapy agents had been approved for children in the last several decades…. I was not an advocate for much of anything in particular. But I never lacked compassion. Had I known of the suffering, I would not have turned away. Today, I am aware of the suffering. And I know how to help. One of my greatest regrets is that cannabis was a last resort instead of a first choice. I could have spared my daughter many months of unnecessary suffering. I am a common sense advocate fighting for common sense legislation. There is a reason the parents of critically ill children, the patients, and their loved ones are all fighting the same fight. Cannabis is the safest, most compassionate, and effective medicine for many devastating illnesses in patients of all ages. Let’s stop trying to monopolize on it and just get it in the ground already. Florida has acknowledged the medicinal benefits of cannabis for decades, and yesterday we saw the first jury-tried medical necessity case come back with an historic “not guilty”! Under medical necessity in the State of Florida, if a patient can verify their need and has a right to use cannabis as medicine, where are they supposed to get it from? Up the street? We need safe access and regulations in place immediately.


    The people get it, and we need our elected officials to make sure our will is done. The supposed fear of abuse by some can no longer justify the denial of its medicinal benefits to millions of suffering. Criminals and drug addicts do not abide by laws. The only people truly suffering because of these laws are the patients. Additionally, politicians should not be determining what is and isn’t medicine, much less what diseases can be treated with particular medicines. This should be at the discretion of someone who has the education to back that decision. Healthcare should be between a physician and a patient. Politicians are vocal about having a deep mistrust of Florida’s doctors, and believe they will prescribe medication to patients who don’t need it. This needs to be addressed directly, without using patients as pawns. FDA-approved narcotics kill. Cannabis does not. There are thousands of studies showcasing the vast array of medicinal benefits of this plant. For those who are concerned about FDA-approval, or the lack thereof, please consider that the FDA will approve a pharmaceutical medication in a matter of weeks, only to recall it the following year once enough injuries and deaths are attributed to it. We have all seen this time and time again. As an aside, the FDA doesn’t actually have a say in the medicinal benefits of plants. Should we be more scared of something that is or is not FDA-approved? Follow the money.


    Moriah Barnhart is an advocate for the use of cannabis and marijuana for medicinal purposes. She helps run a national support group called CannaMoms that helps mothers and paretns help find treatment for their sick children. You can visit the site here.