Tag Archives: Charlotte’s Web

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.

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Victory for the Children

Families at legislative buildingNothing eloquent to write tonight. Just a full heart and the wonderful feeling of gratitude that so many individuals’ hard work came to a victorious conclusion today. Governor McCrory has agreed to sign House Bill 1220, which passed this afternoon. It gives me hope that sensible people can see the truth– if they have the right people to guide them along.

If you are one of those who wrote to her senator or representative, or who talked to his friends about it, or who called a legislator on the phone, I wanted you to see this picture of just a few of the families that you helped. Even if you just patiently listened to me blather on these past few months, thank you for being kind. And if you prayed, let’s all thank the Lord tonight– and tomorrow and tomorrow and tomorrow.

God bless you.

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They Didn’t Want to Do It

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Rep. Pat McElraft

Rep. Mark Hollo, the chairman of the NC House Committee on Health and Human Services, canceled the meeting last night in which the Hope 4 Haley bill would have been considered.  Rep. Hollo had repeatedly refused to meet with families of children with intractable epilepsy, even when they showed up in his office. Needless to say, the parents of these suffering children were extremely discouraged last night, and could not be comforted by assurances that the bill would be taken up in the long session next year. Every day is precious for a child with constant seizures.

Unexpectedly, the bill (House Bill 1220) was added to tonight’s committee meeting, and our neighbor, Steve Carlin, was in time to speak to the legislators. By the time he was finished, there wasn’t a dry eye in the room, and the bill passed unanimously! What a turnaround in twenty-four hours!

Rep. Pat McElraft, the sponsor of the bill, expects that it will pass a committee meeting tomorrow morning, since many of the bill’s co-sponsors are on the committee, and then will make it to the full House by tomorrow afternoon. If all goes smoothly, it should reach the NC Senate by next week. Many thanks to Representative McElraft for her tireless work for these families.

Here’s the rub: The Senate does not want to hear the bill. They are still not educated about cannabidiol and believe that the bill is too controversial. It is an election year, and I suppose winning elections is more important to some of them than saving children’s lives. It is up to us to show them that the people of North Carolina have better values than that. Please find out how to contact your state senator here and let him or her hear from you by Monday. Think how many lives could be saved by just a phone call or an email!

Pray, pray, and then pray some more.

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Things Are Starting to Happen!

ImageThe logjam of legislative inertia is beginning to creak and shift. Representative Pat McElraft, of Carteret and Jones counties, plans to introduce a bill into the North Carolina House of Representatives to legalize Charlotte’s Web in North Carolina.* On WRAL’s 6:00 News tonight, Rep. McElraft participated in an emotional segment that followed up on the station’s report on Dravet Syndrome a couple of weeks ago. You can view the video here. Ms. McElraft plans to call the bill “Hope for Hayley,” after a little girl in her district who has Dravet Syndrome.

Many residents of NC have been working tirelessly to find someone in the legislature to take the lead on helping Dravet Syndrome children, but it has been difficult. Although several members were sympathetic, no one has stepped forward publicly until Representative McElraft. If you feel moved to thank and encourage her, as I did, please drop her a line at Pat.McElraft@ncleg.net.

Bruce Mildwurf, of WRAL, also deserves a great deal of credit for his excellent reporting, which I’m sure moved many people to action on this critical issue.

As the news report states, now is the time to write or call your own representative and senator to let them know that you support the “Hope for Hayley” bill. Even if you have written to them before, now that the bill is named, you can be more specific in your request. You can find out who your legislators are and how to contact them here. It is so easy to write a few lines to let them know that their constituents care about these suffering children.

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*If you are new to this conversation about Dravet Syndrome and Charlotte’s Web, please read three previous posts on this blog, beginning with January 17, then February 15, and February 24.

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The Latest in the Fight for the Children

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Charlotte Figi

Tonight at 5:30, WRAL did an excellent report on Dravet Syndrome and the struggle to get Charlotte’s Web legalized in North Carolina. (Please read in this blog for further details, beginning on January 17th.) This report was much more thorough than the NBC 17 report, in that the reporter interviewed our neighbors here in Clayton and then traveled to Colorado to interview the Raleigh family who decided to live apart in order to get treatment for their daughter. The mother and daughter live in Colorado, but the dad has to stay here for his job. You may watch the video here. The results are amazing.

After a while, it is difficult to see why anyone would hesitate to legalize this oil that would help so many suffering children. We have been writing to our legislators and have come to understand that the time to act politically is now. Once the North Carolina legislature comes back into session in May, they will just be voting on the legislation that is being drafted and debated in committee right now. If you live in North Carolina, it is easy to find your representatives here. Just type your address into the maps for representatives or senators, and then click to open the page. Your person’s address, email, and other information will come right up. They will respond to you, since many people are writing to them on this issue at the moment, and the media is really helping. The legislators just need to know that there is widespread support for this medication among the voters.

If you live in other states, be assured that there are children there that need your help. There are over a thousand families on the waiting list for Charlotte’s Web, so you know that some of them live near you. They will all have to move to Colorado when their number comes up, so if you love them and want them to stay, you can do something about it right now. Just type and click!

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Oh, No! It’s a Plant!

ImageLast night, we were eager to watch WNCN’s segment on our neighbor, Zora Carlin, her family, and other families similarly affected by seizure disorders. The anchorwoman warned that the video might be hard to watch, and she was correct. I had never seen a child having seizures before, and when the segment was over, my son found me sobbing in the living room. You can see the video here. I’m sure you will be similarly touched.

It is so important to have more and more people informed about Charlotte’s Web, the cannabis oil that has an 85% success rate in helping children with seizures, according to the Realm of Caring, a non-profit organization in Colorado that is helping patients with everything from cancer to HIV/AIDS. According to WNCN, there are thousands of children on the waiting list for Charlotte’s Web; they just can’t grow it fast enough. As a North Carolinian, I say, why should we hear that giant sucking sound in the west? Why can’t our neighbors stay here and still have healthy children?

One reason is the misguided attempts by anti-drug forces to conflate medical uses of plants with junkies lying in gutters. WNCN included Skype interviews with Bertha Madras, a professor of psychobiology at Harvard University Medical School. Dr. Madras was appointed as Deputy Director of Demand Reduction for the White House Office of National Drug Control Policy by George W. Bush in 2005. In other words, her job is to stop people from taking drugs, a very laudable goal, to be sure. However, Dr. Madras has carried that goal to some controversial lengths, according to some*, such as working against allowing heroin addicts to carry the overdose antidote, naloxone, because she opined that addicts who knew that they wouldn’t die might be more careless and take more heroin. That is extremely logical and possibly true, but if it saves their lives, wouldn’t it be worth it? Not to a government agency or university professor, perhaps, but oh, say, to their mothers?

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Charlotte Figi

In a similar manner, Dr. Madras is concerned that Charlotte’s Web has not been approved by the FDA. As she said, it “is not a medicine,” it “is a plant.” This is such a confounding statement, freighted with assumptions. Let’s unpack it for a moment. From the way that it was said, one must assume that Dr. Madras considers medicine to be a good thing (which it generally is), and plants to be, if not bad, at least dangerous. In the WNCN segment last night, one can see all of the prescription bottles filled with pills that a tiny, little five-year-old girl has to ingest every day. They all, according to her father, have side effects. Her mother mentioned that Zora had been prescribed 20 mg. of Valium every, single day. How many adults could function that way? Obviously, the families of children with Dravet Syndrome have tried twenty-first century medicine and have exhausted their options. As I described in my earlier post, “Zora Needs Your Help,” (January 17, 2014) many of our most common medications are derived from plants. I grow vegetables in my garden in the summer. I have trees all over my yard. When someone says, “It’s a plant,” I don’t hear horror movie music in the background.

Granted, we are all grateful that the FDA saves us from being at the mercy of dangerous substances, keeping our food supply clean and carefully testing our medications, but they are a gigantic government organization, and as such, they can’t help but move like the Vogons in Hitchhiker’s Guide to the Galaxy. In the same way that I research the origin of the foods that I eat and trust Whole Foods more than Wal-Mart for meat, I look up my medications and talk about them with my doctor. Sometimes the gatekeeper is just keeping the gate closed on general principles, not for good reasons. We won’t even get into lobbyists, research grants, pharmaceutical companies, and other such entanglements.

ImageBack in 1994, my friend’s mother, Mary, was diagnosed with non-Hodgkin’s lymphoma, as was Jacqueline Kennedy Onassis. As one of the wealthiest women in the world, Ms. Onassis received the best conventional treatment possible, and yet she died on May 23rd, the same day as Mary’s first illegal nontoxic chemotherapy treatment. Mary’s husband was a professor, and so he was one of the first people I knew who had the internet at home. He researched thoroughly, mortgaged their house, and flew his wife to Texas, where a doctor was willing to try unconventional treatments for cancer. They worked. After the doctor was arrested and shut down, Mary flew to Bermuda to continue treatment. She also maintained a careful macrobiotic diet (plants!) and supplements. Today, she is in her eighties, still lunching with the ladies and living a happy life. Her treatment is still not approved by the FDA. Do you think she or her family cares?

The point is that children with Dravet Syndrome do not have time for the FDA to spend decades on testing, nor do they have time to elect new legislators who will care about children without worrying about how support for medical marijuana might affect future elections. We all need to work with our current legislators. You may be surprised, as I have been, at how compassionate they are. They just need information. Call them. Write to them. These are the United States; if a child can get medicine in one state, she should be able to get it in all states. Please hurry! I don’t want my neighbors to move to Colorado.

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Information on Bertha Madras is taken from the following sources:

*Wikipedia. http://en.wikipedia.org/wiki/Bertha_Madras. Accessed on February 15, 2014.

“Medical Marijuana Reflects an Indifference to Public Health,” [a paper] by Bertha K. Madras, Ph.D.  http://www.drugfreebusiness.org/Media/documents/Reference%20Documents/Madras_Cannabis_Feb_2011.pdf Accessed on February 15, 2014.

*The Fix, an addiction and recovery website. http://www.thefix.com/content/otc-naloxone-fda-meeting8410. Accessed February 15, 2014.

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Zora Needs Your Help

ImageOur next-door neighbors, Steve and Dawn Carlin, have two beautiful little girls. Eva is the older sister, a lively gymnastics champ whom we expect to see in the Olympics a few years from now. Zora is the younger daughter, a sweet and loving child whose biggest triumph is getting through each of the twenty or thirty seizures that she has each day.

During more than one night when Zora was just a baby, we saw red, flashing lights and rushed to our windows, then prayed when we saw the ambulance workers taking the tiny child to the hospital. Since her mom is a nurse, we knew that something had happened that was even beyond her skill, at least at home. We found after a time that Zora had epilepsy and that Steve and Dawn were working tirelessly to find doctors who could help her. They tried many, many serious medications and treatments, including the ketogenic diet. Imagine if your four-year-old could only eat fat: pure butter, mayonnaise, and so on. Imagine trying that for a month and it doesn’t even work.

It turns out that Zora does not just have epilepsy. This year, the Carlins found out that she has Dravet Syndrome, a mutation of the SCN1A gene. It is not hereditary; it causes developmental delays; it can be fatal; and at this time, it is not curable. Also known as Severe Myoclonic Epilepsy of Infancy (SMEI), this disorder came into the limelight on CNN last year with the story of a little girl named Charlotte, who had up to 200 seizures daily. Like the Carlins, Charlotte’s parents had tried everything and researched tirelessly. They heard that a certain form of medical marijuana was showing promise, and they were able to obtain a small amount for a great deal of money. Charlotte’s seizures stopped immediately. You can read the CNN story here.

Charlotte's Web plantsThe type of medical marijuana that Zora needs is more accurately described as cannabis oil, now popularly known as Charlotte’s Web, after the child described above. It is only 1% THC, so there are no narcotic effects. Steve tells me that it was discovered while people were trying to make a stronger form of marijuana and failed miserably, so it is also known as Hippies’ Heartbreak. Rather, this strain of marijuana is high in cannabidiol, or CBD, which has no intoxicating effects at all. Unfortunately, Charlotte’s Web and all kinds of medical marijuana are illegal in most states, including North Carolina. Steve and Dawn have joined support groups and written to our legislative leaders numerous times with no result. The politicians read up to the part about marijuana and they can’t see anything else. There has been another famous case of Dravet in North Carolina recently, and the family ended up having to establish residency in Colorado. Now the family lives apart, since the father needs to stay in North Carolina for his job, and the mother and child live in Colorado so that the child can receive treatment. This is ridiculous!

Opium_poppyAs far back in history as we have written records, we know that plants have been used as medicine. White willow bark was used by the Native Americans for pain relief, and now the chemists render it as aspirin. Of course, you can still find the willow bark in health food stores. Many people take Echinacea to build the immune system, and the pretty foxglove flowers that we had in our yard in Georgia are the source of digitalis, a heart medication. Even closer to medical marijuana, we have used medicine from the opium poppy for centuries. When my mother was in the hospital in horrific pain last summer, she was given Dilaudid for relief. Laudanum in Victorian times, opium in the middle east, cocaine to Sherlock Holmes, and morphine to many patients today— they are all derived from the opium poppy. Dilaudid’s street name is Hospital Heroine. Did she get addicted? Yes, but she got over it and is now happily living alone at age 86. She would not have survived without this drug. What if the government denied it to her because some people use cocaine recreationally? Why should that even have any bearing on the question at all?

Zora’s parents know that there is a drug that can help their daughter to find relief from her constant seizures and the cognitive damage that they cause, but the government will not allow them to purchase it. We can all help by informing our legislators—and anyone else who will listen—about Dravet Syndrome and the success of cannabidiol in its treatment. Many children die of Dravet, so time is of the essence. If you would like to know more, you can go to the websites www.dravet.org, a family resource and support group site, or www.dravetfoundation.org, a nonprofit group dedicated to research. You can also Google “Charlotte’s Web,” and after the book and movie hits, you will see many news articles about Charlotte’s family and the progress being made in other states with the legalization of this drug. Wherever you live, there are children with Dravet who need your help. Cannabidiol is not a cure, it’s just a treatment, so if you are so moved, you may wish to donate to the foundation to further their research for a more permanent solution. The Carlins and Zora’s story will be on NBC17 (WNCN) in February.

Please remember Zora in your prayers, and when you hear conversations in the future concerning the legalization of medical marijuana, please try to inject some sanity into this often hysterical discussion. It’s not about abusers getting high; it’s about kids who can learn to talk and read and have friends for the first time in their lives.

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