Tag Archives: HB 885

Deal. Real. Before pharmaceutical companies I kneel.

Nathan-DealThere is a very misleading headline floating around that the governor is supporting a bill for medical cannabis. It is not true. Yesterday Governor Nathan Deal dropped the bomb that he will veto a medical cannabis bill with in-state growing. He will, however, sign off on HB1 immediately if it is stripped to immunity only. What this means is that he wants sick people to travel to legal states, obtain cannabis oil that falls within the parameters described in HB1, and break federal law to bring it home. This is what he considers helping the people. Frankly, I’m impressed his hand isn’t too cramped up to sign any bills with all the patting he’s been doing on his own back for talking to GW Pharma about Epidiolex trials, the pharmaceutical version of CBD from the cannabis plant. (Isn’t it funny how pharmaceutical companies can find a medicinal use for a plant that is classified by the government as having none?)

Here’s the thing. Last year Rep. Allen Peake presented HB 885, also known as Haleigh’s Hope for Haleigh Cox. It started out with a plan for growing but got stripped in committee. I won’t rehash the whole ordeal again, but by the end it was also just an immunity bill with no way for people to obtain cannabis in Georgia. It had the votes, but Senator Renee Unterman killed it by attaching another bill that she knew good and well the House wouldn’t hear. Several families were down at the Capitol as the clock counted down to midnight on the last day. They went to Deal’s office to beg him to intervene, but he refused to come out and meet with them. He has said to reporters since then that he has met with the families. Most of the families would love to know who those families were and when because we’ve been trying to figure it out. He could have encouraged an immunity bill through last year but he chose to hide in his office.

He has known all along that there was a plan and a need for growing in the state. By agreeing to immunity only, he is encouraging families to break federal law by transporting it back to Georgia. You can be charged if caught driving through an illegal state or by TSA when flying. Not to mention the expense and challenge of people with serious medical conditions needing to leave the state to obtain it.

Throughout the 2014 election he was asked where he stood. He was vague and always pointed to what a great job he was doing talking to GW Pharma about bringing Epidiolex trials to Georgia. He was quiet as Rep. Peake led a committee during the months between sessions to create the legislation for HB1. He waited until this past Friday to finally be straight about the fact that he has no interest in genuinely helping the people in Georgia that could benefit. For him to not veto HB1, it must be stripped. He claims to want to appoint a committee to look into growing in 2016. Well, what have you been doing for the past year, Gov. Deal? And if he didn’t think Peake’s committee was doing a suitable job, why didn’t he step in? Because that wasn’t the issue. Deal is playing a different game. Meanwhile, people are sick and dying and many aren’t finding relief from traditional pharmaceuticals.

Sen. Curt Thompson has also announced his plans for SB7. It is a more comprehensive plan that is well-received by those who want to see a medical marijuana program in Georgia, but it isn’t expected to have a shot given that it allows so much more than Georgia legislators are comfortable with and is being introduced by a Democrat in a good ole boy Republican legislature.

But what can we expect from Deal, a man who secretively met last year with Sheldon AdelsonAdelson funded 85 percent of the campaign against Amendment 2 in Florida, which would have brought a comprehensive medical marijuana plan to the Sunshine state had it passed. In an amusing twist, Las Vegas casino king Adelson’s other pet project, besides keeping sick people from having more options, is blocking online gambling because “Internet betting could harm children and other vulnerable people.”

The AJC recently conducted a poll that showed 84 percent of Georgians support medical cannabis.

Want to share your thoughts on this subject with Deal? Give his office a call at 404-656-1776.

 

Related reading:

Georgia’s Deal caught up in ethics controversy

Gov. Deal’s campaign pays his daughter-in-law’s firm $600k

 

 

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Thanks, Sen. Renee Unterman and Lt. Gov. Casey Cagle!

My heart is going a mile a minute and I am trying not to go into a rage. The one thing that made it okay that HB 885 didn’t pass in its final form last session was that by then it had been stripped to an immunity bill. Not a lot of good when you can’t obtain it in your state. But Realm of Caring has decided not to move forward to with their plans to ship Charlotte’s Web UNLESS the state has already passed AT LEAST an immunity bill due to the closer scrutiny they have endured since rolling out this plan. GEORGIA FAMILIES THAT THOUGHT THEY WERE GOING TO BE ABLE TO GET IT SHIPPED AS EARLY AS NEXT MONTH NOW CAN’T. This is thanks to the despicable actions of SENATOR RENEE UNTERMAN of Buford (who is on the current medical cannabis committee and typically appears to be asleep in meetings–IF she bothers to stay for the whole thing) and LT. GOV. CASEY CAGLE who thought it would be cute to smirk at the grieving families as the session closed without it being allowed to go to a vote at his discretion. Please share the word of what they have done. Georgia families now have to wait for the next session to get a law that will allow them to receive it, when every state around us already can.

From RoC:

“This change will not impact availability for those of you who live in states with clearly defined statutes that allow individuals to possess CBD or low THC, regardless of the specific means by which these products are acquired. For everyone else: we will be seeking clarification from the appropriate agencies in all 50 states in order to determine the legal accessibility and risks of possession of CBD products. To be clear, as soon as we have confirmation from your state authorities that you will be exempt from prosecution, we will ship to you.”

So let them know how you feel:

Sen. Renee Unterman:

Renee.Unterman@senate.ga.gov

121-H State Capitol
Atlanta, GA 30334
Phone: (404) 463-1368
Fax: (404) 651-6767

Lt. Gov. Casey Cagle

e-mail here.

240 State Capitol
Atlanta, GA 30334
Phone: (404) 656-5030
Fax: (404) 656-6739

 

When will Georgia’s medical cannabis refugees come home?

In the months since Georgia’s 2014 legislative session ended without passing proposed medical cannabis legislation (due to political games, not lack of support), the community of medical refugees in Colorado has grown.

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Notice anything funny about the south? Sing with me! One of these things is not like the others… Admittedly, the laws in the bordering states are of varying efficacy. South Carolina, for example, is only an immunity law that protects you if you are caught with high CBD strains, but does nothing to help patients obtain it. Florida, on the other hand, is allowing for the  growing and selling of high CBD strains next year. If Amendment 2 passes in November, Florida will be able to enact an even more comprehensive program that will benefit more people and conditions.

So now meet some of the Georgia families that are waiting to return to their homes, families, doctors, therapists and friends.

The Cox family

The Georgia bill HB 885 was also named Haleigh’s Hope in honor of this little girl who turns five this month. Shortly before this year’s legislative session ended, Janea and Haleigh packed up and moved to Colorado because Haleigh, who has Lennox-Gastaut syndrome, was suffering life-threatening seizures that caused her to stop breathing. Her dad, Brian, was unable to go with them because of his job and now they have to live apart.

Haleigh before. 
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Haleigh after.

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As I scrolled through the Hope for Haleigh page I was struck again by the change in her. Janea takes and posts a lot of pictures and I could see the improvement, but in looking for before pictures, I was struck by how difficult it was to find photos of her looking at the camera or smiling. Now we see quite a few of those. Sitting in a swing by herself wasn’t possible a few months ago. She also said her first word in Colorado — Mama. Haleigh is not seizure free and still has some rough days, but she has also had some seizure free days. That simply didn’t happen before she started on Haleigh’s Hope provided by the Hope Foundation. Janea has said that she felt like she was finally meeting her child these last few months. Haleigh has even been able to wean off one of her seizure medications. But living apart from Dad is emotionally taxing and they hope that 2015 will bring legislation that will allow them to be a family again.

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The Oliver family

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Tripp had his first seizure on April 9, 2009 and was diagnosed with Dravet syndrome. He has tried more than a dozen medications since then and in April of this year, he and his mom moved to Colorado where he started THCa through Realm of Caring. It was hard to leave Dad and his team of therapists who have spent years working with Tripp in speech, occupational, feeding and physical therapy, but since then he has had two separate three-week streaks in which he had no convulsive seizures. Mom describes him as brighter and happier with improving speech capabilities. You can follow his journey at Tripp’s Trip.

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The Klepinger family

The Klepingers left for Colorado late last year. They still own their Georgia home with the hopes they can return to it and their extended family and support network. Hunter is still doing well on Charlotte’s Web. I shared Hunter’s successes previously in this post. Since then, Aaron and Dawn have a welcomed a third child, lovingly nicknamed their Colorado Tumbleweed.

Julian, Chase and Hunter.
Julian, Chase and Hunter.
Hunter with Rep. Allen Peake, sponsor of Georgia's 2014 medical cannabis bill. Peake flew out to Colorado to meet the families.
Hunter with Rep. Allen Peake, sponsor of Georgia’s 2014 medical cannabis bill. Peake flew out to Colorado to meet the families.

Aaron invites any legislators with doubts to come to Colorado and meet the kids. “Seeing is believing,” he says.

The Clark family (follow them at Hope for Caden)

“My Caden has had thirteen completely seizure-free days! Understand that was never a possibility before! He no longer seizes during the daytime at all, only at night,” Kim Clark posted in May of this year. “There was no hope before this, nothing. Caden’s life was seizing somewhere between ten up to into the hundreds times a day. There was no life. Coupled with the side effects from medications, my boy was miserable. Now we are so blessed that he is 10 years old and we are trying to learn how HE CAN LIVE!”

Kim posted this photo recently with the caption "Slowly healing."
Kim posted this photo recently with the caption “Slowly healing.”

But Caden’s healing has come at a price. The Clarks are also a split family. Kim is in Colorado with the kids and Dad Chris has had to stay behind in Georgia for work. They share the same reality as the other families living hundreds of miles apart. Dad can come visit them, but they can’t go home to see him because they can’t legally travel with the oil. Recently, Kim and Chris traded places for a short period so she could make a trip home.

Kim sits on the front porch of her Georgia home, possibly for the last time, as they plan to put it on the market due to the expense of maintaining two households.
Kim sits on the front porch of her Georgia home, possibly for the last time, as they plan to put it on the market due to the expense of maintaining two households.

The Sumlin family

Sheryl and her daughter Trinity arrived in Colorado earlier this summer.

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It’s early to gauge the response of Trinity’s seizures to Haleigh’s Hope since mom opted to titrate up to the usual starting dose, an incoming tooth is causing seizures and Trinity is requiring supplemental oxygen as she adjusts to the altitude. However, Mom is seeing beacons of hope in small things like wiggling her toes, calmness, awareness, making sounds and sleeping better.

But leaving her support network has been extremely tough. “It is harder than I thought it would be,” Sheryl says. “Although it’s beautiful here, it is not home. My daughter’s school and that whole network has been a huge part of our lives for the last 5-6 years. Also, friends who knew us since forever. I think it’s unfair that we have to move so far to have an opportunity to try this medicine.”

The first dose.
The first dose.

Sheryl is out there without nursing help or a car. Prior to flying out she donated her vehicle to another family in need. A fundraiser was set up by a third party to help her with expenses, but she never received any of the donations that were made on her behalf. She is grateful to the Journey of Hope foundation, a non-profit started by Rep. Allen Peake,  for coming through and helping her financially with the move.

The Lowe family (follow them at Paws for a Princess)

Corey worked tirelessly during the 2014 legislative session to persuade Georgia legislators how badly we need access to cannabis. She was devastated when it didn’t pass, and by May, her daughter’s seizures were getting out of control. She had a tough decision to make.

Interviewing with CBS 46 about their impending move after Victoria was admitted to the hospital.
Interviewing with CBS 46 about their impending move after Victoria was admitted to the hospital.

In June, with help from Journey of Hope, they packed up the car and drove across the country leaving behind Corey’s job, her husband and Victoria’s siblings.

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Since starting on Haleigh’s Hope, Corey tells me Victoria has had an 80 percent reduction in seizures. From several a day to this:

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The incredible eye contact and improved communication Victoria is showing now helps alleviate the pain of leaving their home, but Corey still worries.

10564845_10152238336840905_49063206_n“It’s great, but at what cost,” she told me. “How will this affect my children, who I left behind, in the long run? Will they resent Victoria because I had to leave them behind? How is not having a mom around affecting them?”

She also feels guilty about the families that simply don’t have the means or circumstances to move across the country. “The absolute worst part about having this medicine is seeing kids back home that need it. It’s hard to celebrate the success when kids are going into the hospital because of seizures.”

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The Klepinger, Clark, Lowe and Sumlin family sharing their 4th of July celebration in Colorado.
The Klepinger, Clark, Lowe and Sumlin family sharing their 4th of July celebration in Colorado.

 

 

Related Posts:

The Side Effects of Medical Cannabis

U.S. Representative John Fleming Is Out to Prevent Access to Medical Cannabis for Our Kids

 

I got soaked at the Hose the House fundraiser for Journey of Hope.

This last week did not get off to a great start. I’ve mentioned we’ve had some issues with an increasing number of seizures breaking through in spite of the modified Atkins diet. We finally bit the bullet and raised his vigabatrin dose Tuesday night when not only were we seeing him have 2-3 a day of his typical seizures, but then he also appeared to be having some sort of activity with no clear stop and start — he just wasn’t right. His eyes would look unfocused and he was physically weak. Sometimes after a rough seizure he has trouble moving around and his arms can’t support him when he crawls, but that’s not always the case and it usually goes away in 30 minutes. But he was like this for three days. I had hoped the diet would be successful enough to allow him to wean meds, but it appears he needs the combination of a therapeutic dose of vigabatrin with the diet. He had gained five pounds since the last time we adjusted his meds, so clearly vigabatrin is just far too essential to his well being. We have now gone four days without seeing any seizure activity since the upped dose and he’s back to his normal active self — a great relief as the idea of possibly having to relocate to Colorado had started rear it’s ugly head again. We are trying to hold on with traditional medicine until the option of medical cannabis is available closer to home.

After all that, it seemed like an appropriate way to end the week by taking part in the fundraiser for Journey of Hope, a charity started by Rep. Allen Peake (who sponsored HB 885 this past session in an unsuccessful attempt to legalize CBD oil here in Georgia) to help families, who have exhausted traditional medical approaches to treating their children’s seizure disorders, relocate to Colorado to get the medicine they need. It all started several weeks back when Kim Clark challenged Corey Lowe to the cold water challenge, a method of raising money for charity via the Internet that has gone viral recently. Kim (a mom from Georgia treating her son Caden in Colorado) challenged her on behalf of Realm of Caring, the nonprofit that has become famous for providing the strain Charlotte’s Web to sick children at a reasonable cost. Corey (a mom from Georgia who will soon take her daughter Victoria to Colorado) chose to challenge more people on behalf of Journey of Hope which started the chain of events that led to me floundering my way into an inflatable pool ring in an Olympic sized pool Saturday morning in the Hose the House for Hope event.

Several representatives, senators and Georgia law enforcement officers accepted the challenge to raise money and participate, jumping into the pool to swim out to the moms from families that were involved in fighting for HB 885. You could also pay $50 to douse a participant of your choice in ice cold water. Oh, and some of the dads dressed up…but I’ll let the photos do the talking on that.

I am happy to say that this much money has been raised so far:

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If you are interested in making a donation, please check out the web site for more information — Journey of Hope.

Most of the photos are mine, but a few are borrowed from Facebook…please let me know if you want credit for a photo. I didn’t pay attention when I snagged them 🙂

I'm impressed my pasty white legs didn't blind anyone.
I’m impressed my pasty white legs didn’t blind anyone.

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Oh, and those dads I mentioned…

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Connor started walking!

I’ve been doing a terrible job of updating on Connor lately. This post on medical marijuana went viral a couple months ago, and then a few weeks ago, this post on Athens, Georgia was even bigger with more than 9k shares just on Facebook and 50k views. So if you have been wondering why I have been mostly absent from the blogosphere, it is because I was attempting to ride the wave of popularity for the rest of eternity. Also because I was being lazy.

IMG_0441Connor’s been doing really well in spite of the fact that we’ve been seeing a few more breakthrough seizures on the modified Atkins diet. He took his first independent steps in the pool at aquatic therapy and about a week later, he was standing at the ottoman and suddenly marched away getting in a good 4-5 steps. I wish I had a recording of my reaction–looking up and rubbing my eyes thinking I was seeing things.

He is doing amazing at putting puzzle pieces in the correct spots and putting objects into containers. He has long had a love of destruction, but lacked any desire whatsoever for reconstruction. I’ve now seen him, in the course of two separate evaluations, doing a most spectacular job of putting things away, leading me to conclude that he has been keeping this skill under wraps so that he won’t have to assist in cleaning his playroom.

He found his music therapist’s wooden train whistle  quite enjoyable so my mom bought him one, which led to another milestone of bringing us objects in order to get a desired result. He drops that whistle in our laps and makes us blow it until we are dizzy. He has also started bringing us books and dropping them in our laps, then climbing on the couch next to us to hear them read. He’s awesomely relentless. Yesterday I was dozing off when he dropped Little Blue Truck on my stomach. When I didn’t respond immediately, he plopped it on my face.

It’s so great to watch his cognitive growth. Although he still has no words, he is understanding more and more. We can read books and he will point to objects on the page if we ask. We were working on a puzzle and were missing the lion. I was able to verbally instruct him how to go get it from under a piece of furniture in the room. He’s really into cars and trucks and I’ve noticed that he typically plays with two at a time, always choosing two that are similar in scale, which I find very interesting. I find it positive that he notices differences like that, as if he knows that a Mustang will never be larger than a fire truck! I was excited the other day when he was playing with his wooden hammer to push balls through the hole of the toy and, for the first time, when the ball came back out of the toy, he picked it up and put back on top to repeat the process.

We are dealing with a bit of separation anxiety. He does well when I drop him at Mother’s Morning Out, but phasing me out of the room at music therapy isn’t going so smoothly. Yesterday he had an OT evaluation and I watched through the mirror as he banged on the door to get out and find me. I hope he never notices how boring I actually am.

He’s still eating more pureed food than I would like, but every so often he surprises me by coming over and wanting to eat off my plate. We were late to aquatic therapy once because I was so overjoyed he wanted to share my salmon at lunch one day.

He had a one-hour EEG last week which showed improvement from the last one he had months before we started the diet. Results were still abnormal, which isn’t unusual for TSC. He had spikes coming from a couple of places that have shown activity before, but his left occipital lobe was quiet in contrast to his last EEG. Also, there was no subclinical seizure activity this time around.

IMG_0168Several of the families that worked to try and pass HB 885 here in Georgia have been interviewed for a documentary on the efforts to pass the medical marijuana bill. The filmmakers also recently traveled to Colorado to meet with families that have relocated there to treat their kids. I don’t know if my portion will make the cut, as undoubtedly someone else will voice similar concerns much more eloquently, but I enjoyed the process.

In the meantime, two more Georgia families I met during the legislative session are getting ready to make the move out west to save their kids from unrelenting seizures. The three Georgia families I know that are already there are already experiencing tremendous results. Rep. Allen Peake, champion of HB 885, has started a non-profit called Journey of Hope to help these families get the funds to go. Personally, I hope Sen. Renee Unterman has donated considering she played a pivotal role in killing HB 885 and devastated so many families to tears. I look forward to the 2015 legislative session, though I probably won’t waste much time on my own state senator, Judson Hill, this time around due to this

Since we bought a zoo membership this year, I will leave you with some pics from our two trips so far this season.

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Go, Grandma!
Go, Grandma!

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First time on a carousel.
First time on a carousel.

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HB885 — the Georgia medical cannabis bill — died tonight.

And when it died, this is what it looked like.

1461321_10203535527814157_581029929_n-1Glad I couldn’t make it down there today. I wouldn’t have wanted to watch this celebration in person. I’m so sorry for those parents that did have to see it live. A  live stream was more than enough for me. I cannot begin to express the countless hours, time and money (parking, travel, childcare) that these parents put into this. Representative Allen Peake did everything he could and for that we are thankful.

Short version — most of which I stole from someone on Facebook — because I’m tired, ticked off and feeling a migraine coming on:

The Senate refused to pass HB 885 unless an autism insurance bill was attached because the House refuses to vote on the autism bill alone. Senate passed HB885 with the autism bill attached, then sent to the House who refused to vote on it with the attached autism bill. 

Then late tonight, with HB 885 stalled in the House, the House sent SB291 (already passed in the Senate and unrelated to HB 885) to the Senate for a vote with the HB 885 language included. Senate refused to vote on SB 291 because it did not have the desired autism language.

And with that, the state of Georgia made it clear that it does not care about kids whether they have epilepsy or autism. But they do care about their end of the night paper party!

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An Open Letter to Senator Judson Hill of Georgia District 32

[Update: Judson Hill stepped down from the state senate in 2017 to run for the the seat left empty by Tom Price, who accepted a role in Donald Trump’s administration. Please read this if you are considering voting for him]
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Dear Senator Judson Hill,

I am shaking with anger right now. The Georgia Senate just voted moments ago on HB 885, the medical cannabis bill. As it was discussed, my son’s 12-day seizure free streak ended at my feet. The bill passed 54-0. Two people didn’t vote. Where were you?

You have constituents that have tried to reach you for months. You have blown us off. You have tweeted and posted about your work on on SB 98, a bill to prevent healthcare plans from funding abortions. But you are silent on two bills that help children who have already been born.  Two bills to benefit children: one bill to make insurance companies provide coverage to children who need therapy due to an autism diagnosis and another to help parents obtain a medicine that could help children with severe seizure disorders, and you did not vote on either. Why? Clearly, you have constituents that want to be represented. Perhaps I’m outnumbered? Maybe you heard from more people that didn’t want you to support these measures than did support. In that case, you didn’t represent them either.

I first e-mailed you on January 9. I did not hear from you, but given that the bill started in the House, I figured there was time, and that I’d hear from you when it became a Senate issue.

I e-mailed you again on January 31.

And February 6.

And February 24 in regards to SB397–the autism bill you didn’t vote on.

And March 7. Twice.

And March 11.

Plus an e-mail from my husband.

On February 5 we had a scheduled face-to-face meeting. I came down to the Gold Dome with my son and arrived at your office at the scheduled time. You were not there. You had not come in yet that day. No one could tell me when you would arrive.

On March 10, I attended your town hall meeting that you scheduled. You did not show up.

I tweeted you on several occasions:

March 8

and March 11

and March 13

and March 19. Twice.

I have never received any response from you whatsoever. I do not know of anyone in the district that has, and I won’t even get into how many times you’ve been contacted by others I have talked to. My efforts to reach you pale in comparison to the efforts of another nearby family who has a far more dire situation.

I guess you can afford to treat your constituents that way when you are unopposed.

But someday you won’t be, and I can’t wait. I will be there and I will be vocal.

Sincerely,

One of your many irrelevant constituents

Judson_Hill

Update:

I finally sorta kinda made contact with Judson two years after I posted this letter. Apparently, the key to getting his attention is his wife. Rep. Allen Peake had posted on his public page about his disappointment in the failure of the 2016 Georgia legislature to expand medical cannabis. Senator Hill’s wife commented and the following thread resulted on that post.

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I refrained from pointing out that the family he spent time with was the one that received the most press this year.

But this is how he handles “problem” constituents.

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