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Preface: While Wisconsin’s Jacki Rickert Medical Cannabis Act (JRMCA) – a comprehensive bill legalizing the medicinal use of cannabis for a broad range of conditions from chronic pain to cancer – was blocked in committee by pediatric nurse and Senator Leah Vukmir (R), the state’s AB 726 – a bill to redefine and legalize cannabidiol as a “CBD extract oil with no psychoactive effects” to treat epilepsy – was given fast-track treatment and a hearing within 10 days of introduction.
As an activist who often advocates for pediatric epilepsy cannabis access because of my own professional nursing experience with intractable epilepsy, one would have thought I’d be ecstatic about the passage of a CBD bill to allow epilepsy patients access to “Charlotte’s Web” extract oil. However, as an advocate who networks with people across the globe, I also know that CBD without enough THC is often ineffective for many seizure patients.
I was torn between supporting the efforts of the Wisconsin mothers pushing the CBD bill on one hand and advocating for all those who deserve access to cannabis medicine on the other. I reached out to an amazing group of parent advocates in Pennsylvania and asked them what they would ask of me, a cannabis advocate. They unanimously told me to do what I knew in my heart was right: to tell the truth and to stand up for every man, woman, and child’s right to cannabis medicine.
I could not in good conscience support a bill that would help so few while leaving behind so many others. With the words of the Pennsylvania parents in my heart, I headed to the Wisconsin State Capitol to speak truth to the healing power of cannabis.
After nearly 4 hours of heart-wrenching testimony from parents of epileptic children, it was time for the cannabis advocates to speak.
Admittedly, it was not my greatest moment as the events of the day and emotion overtook me and I was reduced to tears of frustration and desperation. After reviewing the hearing footage (my testimony starts at 3hrs 55min), I realized I managed to make some of the points I was there to make, but not nearly as well as I had hoped…So I am sharing my written testimony here for all to see:
“First, I want to thank patients for their courage in speaking out for their right to utilize cannabis as medicine. Admitting that you support cannabis medicine or need it takes bravery and isn’t easy to do. The courage displayed in this room is inspiring.
When Charlotte’s father Matt told me he was from Wisconsin, I thought- “of course it would be a Wisconsinite that looks beyond the stigma attached to cannabis and into the FACTS to save his daughter’s life. It would be a Badger that would have the courage to push the envelope and do what is RIGHT to save a life.” That is what Wisconsinites do. We look at facts, not spin.
As a cannabis patient advocate for the past 4 years and as a nurse working in the fields of psychiatry, developmental disability, Public Health/school nursing and the treatment of intractable epilepsy for the past 11 years, I can tell you there are hundreds of other stories much like the children you saw here today and like Charlotte’s. Some children succeed on high CBD oil like Charlotte has, while others succeed on oil with higher THC.
Studies have proven that cannabis safely and effectively treats seizures with minimal side effect. That FACT is apparent, but the picture being painted by limited and vague CBD-only bills betrays the science behind cannabis medicine. Many more people are being treated for seizures OUTSIDE of Realm of Caring and are finding that CBD alone is not effective. In fact there are cases of CBD without THC exacerbating seizure disorders especially during times of illness, stress, medication, and hormonal changes. Most are finding that as the child grows, so does their need for THC. If this bill were to pass, those people would be left out -especially adults who have shown to need more THC to control their seizures than this bill allows.
In Canada, where Charlotte’s Web doesn’t exist because only Realm of Caring possesses it, patients are seeing just as much success using extracts made from widely available strains such as Tora Bora, Harlequin and Cannatonic. Patients are also using high dose THC oils and suppositories as “rescue” medication to stop seizures and prevent status epilepticus instead of the traditional and deadly benzodiazepines Diazepam, Lorazepam, and Midazolam.
Passing this bill as it is could leave many people behind. People like the patient I spend 12 hours/day taking care of as a private duty skilled nurse. She is 29 years old with lissencephaly, a “smooth brain,” so not even surgery is an option for her. Most with her condition die in adolescence from aspiration related to seizures, but she still lives because she has 24/7 1:1 skilled nursing care in her home.
I spend everyday at her side for the “next seizure” that could be “the one” that kills her. Multiple seizure medications cannot seem to stop the onslaught of epileptic attacks. In fact, some medications have only worsened her condition. Others medications have stolen her from us as she quit talking and interacting because of the side effects. We are only now getting “her” back after years on Banzel, but as the Onfi efficacy wears off we lose her again.
I fear that due to the limited scope of this bill it will not help her. Many seizure patients treated with cannabis require a greater need for THC as adults, especially women. If CBD oil were ineffective for her, my patient would have no choice but to live without access to cannabis because her father is disabled and moving is not an option. If she were to be moved to another state that allows THC, she’d lose all care and benefits which would in itself endanger her life. She deserves options and access to all compounds available in cannabis including THC.
Unfortunately there are also stories like that of Londyn Rose Houston, a beautiful baby girl who died last month from a rare form of leukemia that has been proven to safely and effectively treated with high THC cannabis oil. THC also kills cancer cells and it’s a fact. It is so proven that even Realm of Caring serves a child for the same cancer that killed Londyn. That child is being supplied oil from Realm of Caring with much higher THC than this bill allows for. That child is thriving.
What about the WI children with cancer? Do their lives not matter?
As an Undergreen Railroad conductor, we are contacted everyday by families ready to leave Wisconsin to treat themselves or their children with whole plant cannabis and since this bill was introduced, even MORE Wisconsin families have contacted us. The limited nature of this bill does not give cannabis patients hope but instead makes it look like Wisconsin is choosing to ignore the science and the truth and instead “pick and choose” who is allowed to live and who will be allowed to die.
Charlotte Figi’s story is amazing. For every successful CBD story like Charlotte’s, there are similar success stories with cannabis oil containing higher amounts of THC that worked when CBD only didn’t. There’s hope in all these stories but this bill, as it is written, could spell tragedy for many.
Cannabis is medicine and it should be treated as such with meaningful laws based in science and not a CNN special or a single company’s experience. Cannabis medicine has been around in published studies for decades including a study from as far back as 1947 that showed cannabis’s promise in treating epilepsy. It was not with CBD extract either. It was with a whole plant application containing all compounds including THC. Cannabis medicine and THC is well established as safe yet ignored as this bill relies on the fallacious belief that THC is detrimental. The opposite is true and it is often NECESSARY to not only treat seizures but also to treat dozens if not hundreds of other medical conditions.
Conditions like cancer, pain and many mental health issues can safely be treated with extracts containing BOTH CBD and THC. Just expanding the CBD bill’s qualifying health conditions could save lives.
Experts from Project CBD who have studied CBD medicine and its application for nearly a decade are also against CBD bills.
Respected cannabis expert Martin Lee of Project CBD is quoted as saying:
“Successful CBD-rich treatment regimens have extended the lives of advanced cancer patients and others suffering from a wide range of diseases. Most remarkable of all is the dramatic improvement in numerous cases of pediatric epilepsy attributable to CBD-rich oil extracts, which stop seizures when nothing else is effective. But CBD-rich remedies with little THC don’t always work. Parents of epileptic children have found that adding some THC helps with seizure control in many instances. For some epileptics, THC-dominant strains are more effective than CBD-rich products.
Physicians and patients are finding that different ratios of CBD and THC are optimal for different conditions and individuals. A CBD-rich strain or product with little THC is not necessarily a superior treatment option compared to a balanced CBD-rich remedy with an equal amount of CBD and THC. A CBD-rich extract or strain with little THC might be optimal for treating anxiety and many seizure disorders, whereas pain syndromes, cancers, and neurodegenerative conditions could benefit from an appropriate amount of THC. One size doesn’t fit all with respect to cannabis therapeutics, and neither does one compound or one product or one strain.”
Cannabis medicine cannot safely be legislated nor practiced based upon on one story in a CNN documentary or myopic medical institutions’ refusal to come to terms with the FACT that THC and whole plant medicine is safe.
This bill doesn’t go far enough nor help enough people and it also does not represent cannabis medicine nor how it is practiced.The seriousness of the condition this bill intends to treat mandates that the science and medical application of cannabis be taken seriously. Lives are at risk. The limited nature of this bill makes no sense and has no scientific basis. If CBD is good enough for those suffering from seizures, why isn’t it safe enough for those suffering from devastatingly painful conditions? Why limit the number of people and conditions that can be helped by cannabis medicine?
If this committee wishes to practice medicine through legislation then I ask the committee to be brave like the Figis, like Charlotte. Look at the FACTS, past the stigma and make a CHOICE to save lives by expanding the scope of this bill to include whole plant medicine and EVERY applicable condition as ordered by doctors and cannabis medicine experts.
CBD only is not the answer and in fact could be a roadblock to real medicine, based in real science delivered by the entire cannabis plant.”