She’s Still Waiting. Here’s Why.

Zora Off to Kindergarten

Zora Carlin’s First Day of Kindergarten

Remember the battle we all fought last spring to legalize cannabidiol (CBD) extract for the children suffering from intractable epilepsy? Remember how exhilarated we all were when the governor signed the bill into law on July 3rd? We thought that was the end of the story, and now the children could line up for their medication and their lives would blossom into health and hope.

Well, the devil is in the details.

As soon as the bill was passed, amendments were added that required clinical trials at our local university hospitals. Now, that is not a bad thing in itself, as trials are important to establish the efficacy of new medications, but pilot studies and clinical trials are expensive, and the hospitals were reluctant to front the money. Doctors, with an eye to legal entanglements, were reluctant to prescribe a medication that had not passed tests. It’s a Catch-22. There has been a trial in New York using a European brand of CBD, but only the children in the study are able to access the drug.

The salient point for the families of children with intractable epilepsy is this: even though CBD is now legal in North Carolina, it is not available! Three hospitals are supposed to participate in a broader trial in a few months (UNC, Duke, and Wake Baptist), but the total number of patients tested will be 40—worldwide! Furthermore, this trial will be limited to Dravet Syndrome patients only; children with other forms of intractable epilepsy will not be part of the study, and will not have an opportunity to receive the drug. After the trials are over, there is no guarantee that the FDC will approve the drug, and even if they do, it could take years.

Unfortunately, synthetic variations of CBD are being manufactured by pharmaceutical companies. These synthetic CBD preparations do not have the success rate of the natural substance, and some unscrupulous companies are actually selling “watered-down” CDB oil as the real thing, as you can read in this article. However, there is just so much space in Colorado for growing Charlotte’s Web, the hemp strain from which CBD oil is extracted, and it is illegal to grow it here in North Carolina.

So, how about the kids? What was this all about, anyway? Did we pray, write to our representatives and senators, have difficult conversations with young congressional staffers, and relentlessly push all of our friends and relations to do the same so that doctors, hospitals, and pharmaceutical companies could hem and haw, worrying about their legal fees and their bottom lines? No! We wanted these suffering children to get help, and it turns out that those who were supposed to help them have suddenly realized that it is much easier to talk about saving sick children than it is to wade through red tape or take legal risks.

Charlotte's Web logoHowever, we are not without hope. Realm of Caring (RoC), the non-profit organization in Colorado that has been growing Charlotte’s Web and processing CBD for the past few years— as well as staging its own clinical trials and publishing the results— has established a liaison with Rep. Scott Perry (R-Pennsylvania), Rep. Steve Cohen (D-Tennessee), and Rep. Paul Broun (R-Georgia) to introduce a federal bill to legalize Charlotte’s Web. The goal of the bill is to establish what has been shown in state legislatures to be the simplest way to legalize cannabidiol: refine the definition of marijuana so that industrial hemp and cannabidiol do not fall under the current marijuana laws, since they are both just plant products that do not have psychotropic properties. This bill is called the Charlotte’s Web Medical Hemp Act of 2014, and is now H.R. 5226 in the US Congress. If the bill passes, it will be legal to grow and process cannabidiol anywhere in the US, greatly increasing the supply and availability. I won’t even begin to discuss the boon this would be to agriculture everywhere. Dwindling tobacco allotments? Not a problem anymore.

The Realm of Caring has posted the bill online and created a way for you to send a message to your federal representatives. Please click on the link for the bill above and let them know that you are in favor of getting this medication to suffering children all over America. After letting them know your thoughts, you can track the bill here. Can you see that it has a low expected success rate? That’s because not enough people have responded. Even if you drove your state representatives crazy with all of your phone calls and emails, your representatives in Washington, D.C, know nothing about this issue and will need lots of education. They need to know that their constituents care passionately about a topic that may seem esoteric to them. Don’t worry about bothering them; from the state of things, it doesn’t seem that they’re busy accomplishing anything else.

As you can see from the photo at the top, Zora has started kindergarten, with help from a wonderful team. You can follow Zora’s journey on her Facebook page. Thank you so much for caring.

Disclaimer: Any opinions expressed are just that: opinions. They are solely my own and do not necessarily reflect those of any of the families of children with intractable epilepsy.

Advertisements

1 Comment

Filed under Dravet Syndrome, Life's Travails- Big and Small

One response to “She’s Still Waiting. Here’s Why.

  1. The reintroduction of industrial hemp would be a boon to a lot of people – I will write my congressmen – THANKS FOR THE UPDATES!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s