This Might Be A Rant About Insurance Companies And Marijuana Laws

Miles is a year into using the Texas-grown cannabidiol oil (CBD) we are fortunate he qualifies for through the compassionate use program. The team at Compassionate Cultivation has been so kind and wonderful to work with over that year, and they have listened thoughtfully as I have provided feedback of their products’ effects on my son. Even though we have seen some improvement in Miles’ seizure activity and occasional positive changes in mood, we continue to have dizzying bouts of aggression where I believe a new type of seizure may be occurring, and during which we all end up bruised, scratched and very sad. We are currently giving Miles about 280 mg of this product per day, costing us around $1000 per month. We also still give him 400 mg of his prescribed and frankly dangerous anti-convulsant, lamitrogene. To top it off, Miles had neurosurgery in December to implant a Vegus Nerve Stimulator. Though we won’t know exactly how much this device will help his seizures and mood until it is fully ramped up over a six to 12 month period, so far we have not seen any positive changes from it.

Our amazing neurologist, Dr. Karen Keough, has seen firsthand Miles’ aggressive and self-injurious behaviors and has always been willing to listen and try to figure out what we could do next to bring him (and us) relief and improvement to his quality of life. During our last visit to her, I got Miles into his special needs stroller, fortunately had him buckled in (or we both would have been in a lot more danger in that parking lot), when he began to spiral into one of his episodes. I was trying to brace the stroller from the weight of him trying to throw it backwards while attempting to call the office for assistance. Many people stopped—-so, so many people. A group of nurses asked if getting a strong male to assist would help to which I replied, “My husband is one of the strongest people I know and when my son gets this super human strength, not even he can control him.” I explained that my best course of action was to try to get him through this episode as safely as possible until I could transfer him back into the car and we could go home. But this one lasted longer than normal and came with self-injurious actions I had never witnessed from Miles before. He has a habit in times like this to try and hurt his arms by banging them on things or doing what his teacher describes as his ‘Hulk move’ where he will act like he is trying to lift an immovable object. This leaves his arms black and blue and bloodied. But this time with two cars being the nearest objects to him, he began putting his arms into my tire well and scraping them against the metal of the car as well as the tire. His arms were dripping blood and black from the tire rubber. He then really alarmed me when he began to try and put his head into the wheel well. Thankfully I was able to pull the stroller back a bit to where this was no longer possible, but it really hurt my heart to witness such angst and pain in my child. Dr. Keough and her staff finally made their way down to us thanks to the kind nurses who went to her office for me, and from there we conducted a new kind of house call in the back seat of my Ford Expedition. We both agreed that as much as I would like to see how high we could go with the Compassionate Cultivation CBD, (and the value of having even the shamefully low amount of THC that our state allows in this product), that it isn’t economically viable to give him more than we already are. And so it was suggested that we try the newly FDA-approved CBD isolate product, Epidiolex. Our absolute goal is to get Miles to a place where we can wean him off of the lamitrogene, a drug with a list of possible side effects so long that I’m going to just link to them rather than type them all out here.

Today I received a phone call from a woman at CVS specialty pharmacy, one of the few pharmacies that offers epidiolex. She was the bearer of bad news who got to explain to me that our insurance has excluded epidiolex from our plan. Not only did they use the word ‘exclude,’ they said there was no chance of it ever being covered as there are less expensive medicines we could try instead. And guess what folks…they’re all dangerous, synthetic medications! One of these was Depakote, which if they had taken a moment to look at my son’s records, they would see is listed on his drug allergy list. This was the first anti-convulsant Miles was prescribed back when we lived in California that after only two weeks lead to a psychotic episode that scared the pants off of both me and my child so much that it would take another four years before we had the courage to even attempt another medication like it. Another kindly suggested medication for us to try instead of epidiolex was…lamitrogene! Funny that they didn’t notice he’d already been taking that one for years and it hasn’t controlled his seizures yet. Others were recommended that are not at all acceptable to administer to patients with chronic kidney disease. (Miles was diagnosed with moderate chronic kidney disease in July of 2017)

Is this a joke? Do they really believe I won’t appeal this? Do they really believe they as insurance providers know more than my son’s doctor does about what type of medication he should have access to?

To say I am mad is a gross understatement. I am at the ‘bless your heart’ stage, and as those of you from the South know, when a woman gets to that point…its on!

I will clearly be appealing this denial with our insurance company.

And now that we are back in legislative session here in the state of Texas, I will continue to appeal to our legislators to expand our current medical marijuana law to include more qualifying conditions so that the few dispensaries allowed to serve patients in our state can more effectively run their businesses. We can’t expect the cost of this medication to go down to a more attainable price point when it is only available to patients with intractable epilepsy; and you can’t expect those patients to seek it out when they can’t afford it and they have to find TWO of the limited number of registered doctors to prescribe it. The law is so flawed. Our insurance companies are so flawed. And families like mine are left to suffer.