Last 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?
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.
Back 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.
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.