Tag Archives: Allen Peake

Why is Sen. Ben Watson turning his back on Georgia’s cannabis patients?

Let’s start with the TL;DR. If you read no further, check out this video created by a supporter.

I’m over it. My enthusiasm and January gung ho attitude of years past are long gone. 2017 is the fourth legislative session in which we will continue to fight for medical cannabis in Georgia. I’ll be honest. Before my son’s seizures and getting involved in cannabis advocacy, I didn’t pay much attention to state politics. Now that I do, the corruption and hypocrisy constantly makes me sick.

This year is already shaping up to be the same old garbage. The support we have comes from the House, while the Senate schemes to screw over sick people. Some names are no surprise. Sen. Renee Unterman  (R, Buford) has been at it since this all began, so when Senate Bill 16 dropped, a bill that aims to lower the amount of THC permitted in Georgia from 5% to 3%, taking away options from patients, the only surprise to me was that she was a co-sponsor, rather than the lead.

The lead sponsor still came as a bit of a surprise, though. Doctor and Senator Ben Watson (R, Savannah) was a representative when all this started. He was very supportive of the original bills introduced by Allen Peake. He was even interviewed in his medical office, wearing his white coat, for the documentary Growing Hope: Georgia’s Fight for Cannabis Oil. In fact, check this video out at the 2:08 mark. (Side note: That’s my adorable kiddo at 2:02).

Yes, you heard him right. He said, “To say that marijuana, or THC, or cannabidiol has no medicinal value, I think, is just immoral.”

And yet, now he leads the charge to decrease the amount of THC permitted by people who hold a Georgia cannabis card? It’s not enough that the Governor has used the Senate to block cultivation and families have to travel out-of-state to get the higher THC products, now he wants to take away their rights to possess and use it in the state of Georgia?

Sebastien Cotte is father to Jagger who has mitochondrial disease, and Sebastien has been a huge advocate from the start. He has already been down to the Gold Dome and here is part of his Facebook post about his first day of advocacy in 2017. This was his account of a conversation he had with Watson.

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Ummm… Georgia has an opioid epidemic going on. Are you being serious right now, Senator?

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Oh, by the way, the Georgia senate has also passed a law limiting the number of opioid treatment clinics while they set up a committee to investigate why Georgia has the largest number of clinics in the region.

Katie McKoy, a fellow special needs mom of three, dug these up for me within five minutes of my posting on Facebook about Sebastien’s conversation. Let’s stroll down memory lane and remember when we had Watson’s support.

http://news.wabe.org/post/doctors-can-sign-patients-medical-marijuana-registry

https://www.savannahbusinessjournal.com/news-categories/featured-columnists/4746-apr-21-columnist-state-senator-ben-watson-state-house-report-wrap-up.html

http://gareport.com/story/2015/03/24/senate-passes-medical-marijuana-bill/

So what changed? He supported us in the House of Representatives, where the powers that be are behind us. But then he moves to the Senate, where Casey Cagle and Renee Unterman routinely try to stick it to sick people, likely at the behest of Governor Nathan Deal (who has proven that he’s only interested in photo ops with sick kids, not actually helping them) and suddenly he’s taking the lead on moving Georgia’s very limited program backward.

Five out of six of the senators who signed as sponsors of this new bill previously voted to pass our current (thoroughly gutted by the senate and governor) medical cannabis bill. Why wasn’t that gut job enough? Now that Rep. Allen Peake is introducing two new bills, one to expand the protected medical conditions, and another to put medical cannabis on the ballot for citizens to decide, I guess the senate needed leverage to shut those down. It’s sick. Nothing but games for these elected individuals. And FYI, whereas Peake’s bill adds several medical conditions to be permitted cannabis use, the senate is only adding autism.

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The sponsors of SB 16 are:

Ben Watson (R, Savannah, District 1)  404-656-7880    ben.watson@senate.ga.gov

Renee Unterman (R, Buford, District 45)  404-463-1368  renee.unterman@senate.ga.gov   (Votes in favor, just tries to strangle it behind the scenes).

In 2014, she admitted to WSB’s Lori Geary she was holding the bill hostage until her bill was heard.She also said, “These parents don’t understand how the General Assembly works but this building is nothing but politics.”

Francis Millar (R, Dunwoody, District 40) 404-463-2260  francis.millar@senate.ga.gov

2014:

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2016:

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Greg Kirk (R, Americus, District 13)  404-463-5258   greg.kirk@senate.ga.gov  (When in-state cultivation was proposed said he wasn’t sure we should go down that road).

Nan Orrock (D, Atlanta, District 36)  404-463-8054  nan.orrock@senate.ga.gov (Has been vocally supportive on the floor, so I’m not sure why she’s co-sponsoring this).

Chuck Hufstetler  (R, Rome, District 52)  404-656-0034  chuck.hufstetler@senate.ga.gov  (Hufstetler is the only sponsor who has never voted in favor of medical cannabis. He likens Colorado to the “Wild West.” He’d feel better if the FDA approved it — the same FDA that approved pure hydrocodone, an opioid five to 10 times the strength of Vicodin).

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An unsettling appointment and a great press conference

Quick plug: Lisa Cummings, another TSC mom I know through our online community often writes and shares poems about her life with her daughter, TSC and special needs. She just published her first collection of poetry and it is available through Amazon. Please check it out here.

The journey toward the ketogenic diet continues…and might end with me jamming a screwdriver in my ear. We have been pursuing diet therapy since before Thanksgiving. The wait lists at keto clinics are ridiculous. The one that could get us in the earliest was in Alabama, so we had our new patient appointment Tuesday. Two hours there and back again. Connor’s neurologist had sent his 157-page chart over well in advance. I knew that this appointment would be, for the most part, a formality as the neuro that will oversee him on keto has never treated him. As expected, it was a lot of repeating his history. There was only one thing I wanted after 2.5 months waiting–the date Connor will be admitted so we can get this damn diet started. We’ve had this hanging over us for months, afraid to plan trips and make plans. I thought that would finally come to an end yesterday, but it didn’t. She agreed to take him on, but we still have to wait to hear when he gets admitted. She hoped it would be February, but couldn’t say for sure. So until they call, I have to worry that they will want him during the March dates we’re in DC or Boston OR that they will want him in right before those dates and I will have two days to prepare for traveling on this insanely strict diet.

To be honest, the appointment was a little strange. First, I was bummed to find out that our stay will be longer than the typical keto stay because she wants to do an EEG first. Granted it has been a while since he had one, but I don’t want to spend a week in the stupid hospital. But if that’s what it takes to get things going, I wasn’t going to argue. The thing is, we just got the feel that she wasn’t that thrilled with the ketogenic diet. She wanted to know why we weren’t pursuing surgery. I consider surgery a last resort for the most part. It was an easy choice the first time because the seizures were so frequent and causing major developmental delays. But he’s much better now, and has already responded to some tweaks I’ve made in his diet on my own leading me to believe the diet will be beneficial. Also his EEGs, while indicating activity from the left occipital lobe, have also shown activity from other areas.

Don’t get me wrong…it’s not that we wouldn’t consider surgery again if a newer EEG could determine one particular tuber as the only or primary culprit (and my guess is that it would be the one in the left occipital) but since our referral was specifically for the diet, I really wasn’t expecting such enthusiasm for surgery. The doctor even made a point of expressing concern about potential side effects of the diet, and I was thinking…what is going on here? At any rate, surgery is not on the table for us right now. I see no need for that if keto can do the trick.

I know neurologists have very differing opinions on the best course of action…I just finished reading a book (I recommend Fighting Back With Fat by Whitmer and Riether) that talked about how the diet was often used decades ago, but fell out of favor with the emergence of so many pharmaceutical options coming on the market. It made a comeback in the 90s when the son of a filmmaker — Jim Abrahams — was diagnosed with epilepsy and he wasn’t responding to medications. The ketogenic diet was his savior. His father later made a film called First Do No Harm with Meryl Streep and started the Charlie Foundation. Since then keto clinics have popped up all over the country, and in many countries around the world. More and more neurologists are coming on board with diet therapy because it has proven results, but there are still some that shy away, especially in other countries. The book had me so gung ho on the diet, that this neuro’s lackluster response threw me for a loop. The nurse that came in prior was very enthusiastic about it. But forward we shall move.

Wednesday was a better day. I finally met many of the other parents fighting for HB 885/ Haleigh’s Hope so that we can have access to medical cannabis in Georgia when we met for a press conference at the capitol building. I’ve been to DC to meet with legislators, but this was actually my first trip to the gold dome, even though I’ve lived in the Atlanta area since 1992. I was not prepared for how packed it would be. As a former teacher, I feel I can express what so many of you are thinking in many public places (i.e. Fernbank, the aquarium, the zoo, etc). Field trips are evil. A necessary evil. But evil nonetheless. I remember being at the aquarium in the role of teacher, with multiple schools crowding the walkways, and looking at all the people who paid full-price admission and thinking, “You poor b*******.” As I crammed onto crowded capitol elevators, I thought, the kids need to see these places, but perhaps we should pass a bill banning scavenger hunts. But I digress.

Dressed for politicking at the capitol.
Dressed for politicking at the capitol.

It was freezing outside, very much in contrast with the 100 degrees inside the building. The room numbers are all out of order, too, thus ensuring a healthy workout. I started out meeting my representative Don Parsons, who has signed the bill. We had a nice conversation and he asked me many questions about Connor. Then I had a scheduled meeting with my senator Judson Hill. That didn’t happen as he had not come in that morning. I was disappointed to say the least. I am not sure where he stands on the bill as I have had no luck getting a response from him. I continue to follow up.

Check out that landmark in background! Pshh. Not the gold-domed capitol...Johnny Rockets!
Check out that landmark in background! Pshh. Not the gold-domed capitol…Johnny Rockets!

We had a press conference at 11:15 with WSB’s Lori Geary, who has been a champion of the cause, presenting it in an appropriate way and making every effort to make key issues clear. For example, we are still trying to make sure people understand that kids aren’t smoking joints. It is an oil form, high in CBD, low in THC — though I do want to be clear that THC has medicinal benefits as well. But since it is the psychoactive component, people are more afraid of it than the CBD. At any rate, the kids aren’t getting stoned.

WSB's Lori Geary speaking with affected families.
WSB’s Lori Geary speaking with affected families.

Several parents spoke about their kids: Shannon Cloud, whose daughter has Dravet syndrome; Janea Cox whose daughter has LGS and for whom the bill is named (Haleigh’s Hope); Chris Clark, whose wife and child have relocated for treatment; Jonathan Jiles, whose son was born with Ohtahara syndrome; and Aaron Klepinger, who flew in from Colorado to speak about his son’s successful treatment in Colorado and how they want to return to their Georgia home. FYI: Haleigh is in PICU and really struggling. They are looking at having to relocate a medically fragile child to Colorado when she becomes stable enough for a life flight. Fundraising efforts have started here.

Aaron Klepinger clutching a photo of his son Hunter.
Aaron Klepinger clutching a photo of his son Hunter.
Shannon Cloud addressing the need for medical cannabis.
Shannon Cloud addressing the need for medical cannabis.

I’ll keep you updated as it progresses through the process. Here is the news clip (you can see me and Connor in the background several times).

I’ll close with a few more photos from the capitol:

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Wendi Scheck with son Hudson and Rep. Allen Peake (and service dog Denali).
Wendi Scheck with son Hudson and Rep. Allen Peake (and service dog Denali).
It's hard to tell a delighted toddler that you aren't supposed to pet service dogs :)
It’s hard to tell a delighted toddler that you aren’t supposed to pet service dogs 🙂

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