Haley Is My Hero
"A hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles."
~ Christopher Reeves
Our legislative Journey
We've loved every minute of our journey
Our First Lobby Day 1/22/15
We were all pretty new at this, but we were desperate and believed this would benefit our children.
Bill Passes!
A seizure in a committee hearing and a child in ICU on life support brought reality to our lobbying. Our bills were signed into law on February 26. 2015.
2016
Although we had the right to possess CBD and THC-A oils, there was no way to legally obtain them. We went back to the VA General Assembly in 2016 to ask for regulations to be drawn up in order to produce the oils in our Commonwealth.
2017
The Board of Pharmacy met with a panel of parents, doctors, members from the industry, and even the "opposition" and approved regulations over the summer of 2016. We went back to have the bill reenacted and approved.
2018
This year we joined others in broadening the access to the oils by working on a "Doctors Decide" bill. Which passed the House and Senate unanimously!
Where we started in 2014
We are looking for a form of medical cannabis that is high in Cannabidiol (CBD) and low in THC, the psychoactive component of the marijuana plant. Based on that description this is Hemp. The Realm of Caring in Colorado Springs, CO has cultivated a plant that is certified as hemp that was first called "The Hippie's Disappointment", because it did not get the patient "high". It later was renamed Charlotte's Web, after little Charlotte Figi who was only five when she tried it.
This is Charlotte's Web...surprised?? Did you think we were going to let Haley smoke her medicine??
February 2014
Our Evolving Mindset on Medical Cannabis
The first family I met who I personally knew who tried medical cannabis on their child was a mom from California. She would juice the plant for her daughter and make an extract. I like many thought when I heard you were going to give your child cannabis, that it would be smoked in some form. The next Dravet family I heard of was Jason David and his son Jayden.They have shared their on Facebook, Jason and Jayden's Journey, and have been featured on Weed Wars, A Father's Plea. I met Jason in 2010 at a Dravet.org Family conference. He was and is a determined, single dad. At the time we met Jayden was only four and recently diagnosed. He was a dad on a mission. He was the second parent that I heard using a high CBD form of medical cannabis. In 2012, he came to another conference and shared his findings of using medical cannabis with Dravet syndrome. His story was compelling to me, but at the time Haley was doing relatively well with her treatment of pharmaceuticals.
However, in 2013 the "relatively well controlled" went out the window! We blame it on puberty and Dravet combined. In August 2013, Sanjay Gupta did a report on Charlotte Figi, Marijuana stops child's severe seizures, that brought us renewed hope.
We had known about Charlotte's struggles through the Dravet syndrome support group we belonged to; and we knew how her mom, Paige, had tried everything. It was amazing the results Charlotte achieved through the use of CBD oils. She went from 100 seizures a day to one a week.
Just look at the difference in her appearance!! The "slack-jaw" of an overmedicated child is gone and THOSE EYES...so clear and bright! Charlottes is doing so well after two years of using Charlotte's Web.
The two things that happened in 2013 that were pivotal for changing our fight for medical cannabis. Haley's seizure control was non-existent. She ended the year with us recording over 800 seizures. There were only 157 days on her seizure calendar that had no seizure activity. She was on three medications that were at their max dosage and had a Vagus Nerve Stimulator implanted. 2013 ended...and our legal options also ended.
However, in November 2013 Haley and I had a providential meeting with someone who could help. Haley and I were on our way home from a neurology appointment and on our way to lunch at Five Guys. When we pulled into the strip mall where the restaurant was located, I looked up and saw VA Gubernatorial Candidate, Terry McAuliffe and U.S. Senator Mark Warner heading into a storefront. I grabbed Haley and quickly walked to that store front. My intention was to find out if Dr. Ralph Northam (Lt. Governor Candidate and Haley's former neurologist) was inside. I wanted to complain to him about an issue with Haley's school. I basically "crashed" a Democratic Pep-Rally of sorts. After listening to all the Candidates and two U.S. Senators speak, a gentleman usher Haley and I up to Dr. Northam. He asked how Haley was doing and I shared that it had been a hard year. I told him she had not had school for two months due to a nursing issue and that IF he was elected the next day, I was going to call him. He smiled and said, "Lisa, you know about Medical Marijuana for kids like Haley?....I'm going to fight for it...?" I immediately asked if his cell phone number was the same and told him that I was definitely going to call him!
In January 2014, I did call him and we are working together with a group of like minded parents to educate the legislature about medical cannabis for children with intractable epilepsies. Join our Fight!
The Case for Legal Non-Psychoactive Medical Marijuana To Treat Children With Uncontrolled Epilepsy in Virginia~Virginia Parents for Medical Marijuana
What is non-psychoactive Medicinal Cannabis?
There are two types: High-CBD (cannabidiol) oil and THCa.
CBD: A unique hybrid of the cannabis plant that has been cultivated by a non-profit organization in Colorado, the Realm of Caring. This plant is very high in CBD (cannabidiol), which is the medicinal component of the plant, and very low in THC (tetrahydrocannabidinol), the psychoactive component that causes a ?high?. The ratio of CBD: THC in this plant is 30:1, so less than .3% THC. The plant is processed into an oil extract and then laboratory tested to verify that little to no THC is present.
THCa: Contains THC that is not activated through decarboxylation, so contains no active THC and is, therefore, not psychoactive.
The plant is processed into an oil extract and then laboratory tested to verify that dosage strength is consistent and that little to no active THC is present.
The oil extract is administered by placing a droplet under the tongue.
Who may benefit from this treatment?
Patients with severe intractable epilepsy, for which there is no effective treatment. These individuals may have multiple types of seizures every day, varying in intensity and length from seconds to hours. The seizures take a toll on overall health, ability to function, and quality of life. These individuals have a higher mortality rate due to an increased risk for SUDEP (Sudden Unexpected Death in EPilepsy) and Status Epilepticus.
o Intractable epilepsies include diagnoses such as Dravet Syndrome, Doose Syndrome, Infantile Spasms, and Lennox-Gastaut Syndrome (LGS), and Aicardi Syndrome.
· Children having uncontrolled seizures as a result of stroke, injury or tumors.
Why try this treatment?
Despite taking multiple types of anti-seizure medications daily, approximately one third of all epilepsy patients do not have seizure control through medication. In addition, current medications for epilepsy often include severe side effects.
What side effects are associated with anti-epileptic drugs?
Research to-date indicates that there are few side effects possible from the use of CBD and THCa, mainly drowsiness and increased appetite. The current treatments used to control these types of seizures have serious side effects, including aggression, psychosis, thoughts of suicide, severely impaired cognition, hair loss, weight gain, severe rashes, broken bones, osteoporosis, organ failure, sterility, cardiac conditions, blindness and even death. Additionally, many of the drugs prescribed for our children are not FDA-approved for use in children.
Do any other states support medical marijuana?
Medical marijuana is currently legal in 20 states plus the District of Columbia. Legislation or ballot initiatives are also currently pending in 15 states.
What are the research results regarding the use of CBD and THCa for pediatric epilepsy?
· Children being treated with this medicine are having remarkable results. Observational studies are showing that 80% of children are responding positively with their seizures being reduced by 50% or more, and for some, seizure-free.
· Children who respond favorably to this treatment have been able to lower, or discontinue, their pharmaceutical medications, and thus reducing the serious side effects associated with antiepileptic medications.
· There is much legitimate research showing that CBD has significant neuro-protective properties (See references).
· THCa has been shown to be a powerful anti-inflammatory. There is a growing amount of research that indicates some types of epilepsy may be caused by inflammation in the brain.
Changing Virginia's mindset and their law
Lobby day, January 22, 2015