This is Hunter and he is eight years old. I met his mom, first at a music class she attended with her younger child, then I saw her again at the pool where Hunter and Connor both receive aquatic therapy. One day I realized I hadn’t seen them in quite some time, only to meet mom and dad again in a Facebook group. They had moved to Colorado to obtain treatment for Hunter after several seizure medications, VNS and the ketogenic diet failed him.
They have finally found an effective treatment in the form of medical marijuana–20 minute seizures are down to two minutes and he went six days straight seizure free for the first time in eight years –but now they can’t come home to Georgia. And they aren’t the only ones. Many families have left everything behind to move to Colorado to obtain access to medical marijuana. Charlotte’s Web is a well-known strain featured in the CNN special with Dr. Sanjay Gupta and created by Realm of Caring. It is low in THC so the kids do NOT get high, and it is in the form of an oil, so they do NOT smoke it. Sometimes people even have to leave other legal states so that they can get the form of marijuana their child needs. New Jersey is such an example. Though medical marijuana is legal, Gov. Chris Christie has made it exceptionally difficult for families to get what they need.
From the Huffington Post: “See this is what happens. Every time you sign one expansion, then the advocates will come back and ask for another one,” the governor proclaimed during a press conference from his statehouse office. “Here’s what the advocates want: they want legalization of marijuana in New Jersey. It will not happen on my watch, ever. I am done expanding the medical marijuana program under any circumstances. So we’re done.”
Remember that as he sets his sights on the Oval Office.
Georgia Governor Nathan Deal also opposes it.
These families want to come home. And I don’t want to one day face the same decision they have if we can’t get Connor’s seizures under control. If you are interested in the legalization of medical marijuana in Georgia, please check out this group.
Today started with me wanting to go into a near rage. Last night we discovered a house in the next cul-de-sac over–we live in a very small neighborhood–just went on the market. We were not thrilled. This morning it was online. Bigger. Same price. I wanted to knock on the door and punch the owner in the face. Pictures didn’t go up for a couple more hours, but after driving by a couple times, and finally seeing the pictures this afternoon, I can offer the unbiased opinion that their house sucks. Sure, they have a little more space, and a little more granite, but ours has better curb appeal and better lot. Plus I emptied a container of termites onto the property. Okay, not really, but I wanted to.
The very first person that looked at the house this week was a guy that loved it. We were unable to leave as his tour overlapped Connor’s in-home speech therapy, so we just sat on the porch until the therapist arrived. After the realtor left, he even came back and knocked on the door and asked about the neighbors. Then he brought his wife back that night. It just seemed too easy, right? I was nervous about the wife, and was right to be. She is said to have liked it a lot, but thought the living room too small. Ugh, women! Am I right? They only need to be in charge until it doesn’t benefit me. 🙂
I’m feeling a little better about it this evening though as we have another repeat show coming in the morning. A person who toured it this morning has it in their top 3, so fingers crossed.
We met with Connor’s neurologist yesterday, and we’re very excited that we are now weaning him off Sabril (vigabatrin). This is the med he started due to infantile spasms last September. His spasms have been controlled for quite some time, and we are hopefully past that hurdle. We’re really hopeful we’re done with this med. He’s still on Keppra, and now he’s starting Trileptal since he still has what we think are complex-partials that consist of him clenching his teeth, going slightly limp (not losing consciousness), puckering his lips and staring to the side for 10-20 seconds. We see roughly 1-2 a day, and some days none. The vigabatrin wasn’t curbing those, so since the spasms are done, no need we hope. He snaps out of them quickly and they don’t have the lingering effect of other seizures and make him fall asleep.
No more mixing those stupid powder packets, hoping UPS shows up with the meds, and no more ERGs and ophthalmology appointments! Since vigabatrin poses risk to peripheral vision, anyone with a prescription is required to have frequent eye exams and ERGs, which require him to be knocked out at the hospital. Fewer trips to Scottish Rite? Yes, please!
I recently discovered that insurance is being billed $7,000 a month for this particular prescription. And herein lies the heart of why our medical system is so jacked up. We’re so worried about everyone getting insurance, that we’re not paying attention to why everyone needs it so desperately in the first place. Big profit. The jacked up cost of medical care in this country, plus the complete lack of rhyme or reason to why things are priced the way they are, and the lack of uniformity in these prices is the problem. It took a very disturbing recent Time Magazine article to even make hospitals accountable for making their chargemaster lists public. Where else do we walk in to make a purchase completely blind to what kind of charges we’ll be facing in the end?
Sabril (vigabatrin) only received FDA approval a few years ago. Before that, most people got it from Canada. A months’s supply was a couple hundred bucks (I’ve seen people mention figures ranging from $100-$500 per month on the TSC boards). Since it was not approved, it was not covered by insurance. Now, that is a heavy fee on a monthly basis, but what can you do? Insurance isn’t going to pay for a non-approved drug. Well, then it got approved. How nice! Now insurance can pay for this important med that costs hundreds of dollars. Oh, but now it suddenly costs thousands! Now, I will say the manufacturer has a program called SHARE which offers co-pay assistance, so this drug that would probably cost people like us an astronomical co-pay of a grand or more, is actually affordable. We only pay $30. Some people pay nothing. I’m not aware of anyone being turned down. But it’s still profitable. Obviously this drug costs nowhere near $7,000 if Canada can sell it for a fraction of the cost. So even if insurance cuts a deal to pay only $4,000, and the patient gets a pass with the assistance program, those are big bucks. Connor’s last 3-day EEG
cost $12k just in room and board. And I couldn’t even get them to bring him a damn band-aid.
On a different note, I don’t know what rock I’ve been under, but I just became aware of the fact that Colin Farrell’s son also has a rare genetic disorder, even more rare, called Angelman Syndrome. I had only recently become aware of this disorder due to a Facebook page I follow of a woman whose son has it. I think it’s really awesome that he is speaking out about it and bringing attention to rare disorders. He recently spoke at an epilepsy event, as seizures are something that TSC and Angelman have in common. Very cool.