Translator: Rhonda Jacobs Reviewer: Peter van de Ven What goes through your mind when I tell you that my 11-year-old twins are using marijuana? Do you think to yourselves, “Oh my god, the drug problem in the U.S. is worse than I thought”? How is it possible that 11-year-olds get access to pot? Maybe some of you thought, “Geez, I wonder what medical condition these kids have.” The truth of the matter is, most of us don’t think about medicine when we hear the word “marijuana.” I admit – I’m embarrassed to admit that up until two years ago I was completely misinformed about marijuana, and I think many of our population is today. I remember vividly in sixth grade being ushered into the auditorium to see a government-sponsored “documentary” about marijuana.
It was the most scary thing I’d ever watched. People jumping off buildings, car crashes – it was mayhem. But not once was there a mention of the possibility that cannabis was useful as medicine. To be honest, in retrospect, I’m a little angry about the propaganda that our government is putting forth; it’s even happening today. My big idea worth sharing is that medical cannabis can be the healthcare success story of our lifetimes but only if we all engage in learning the truth and ask our federal government to end prohibition of cannabis. I’d like to introduce you to my twins, Addison and Cassidy. Believe it or not, today’s their birthday. Eleven years ago today, only a mile from here, they were born and came into our lives. Happiest day of my life – I love the date too: January 23, 2004. 1, 2, 3, 4. Unfortunately, Addie and Cassie suffer from a very rare genetic disorder called Niemann-Pick Type C . This horrible disease is more commonly called, or what we call it, is childhood Alzheimer’s. Their little brains are drowning in cholesterol. They’re missing a protein that allows them to process cholesterol both in and out of their brain cells.
The cause is neurodegeneration. They can no longer walk, and they can no longer talk. We were told the Addie and Cassie would be lucky to see their 12th birthday. (Sniffs) After reeling with this devastating diagnosis, my wife and I dedicated ourselves to finding treatments for our twins in their lifetime. We gave up successful high tech careers in Silicon Valley, and we became research philanthropists raising money for research, and ultimately, we became biotechnology entrepreneurs developing a compound. The compound we found was cyclodextrin, and we found it with an amazing group of scientists, researchers and physicians from all over the world, including right here in Reno. Every week the girls get an infusion.
It’s eight hours long – it goes into their bloodstream, the cyclodextrin. Every other week, like yesterday, the girls go to the hospital and they get a lumbar puncture in their spine in order to get the cyclodextrin to reach their brains directly. We think that the combination of those two routes of administration are slowing down the neurodegenerative progression, and hopefully, maybe even stopping it. Addie and Cassie were the first little pioneers to try this scary treatment. I can tell you as a parent, with no one in front of you paving the way, it truly is a scary moment. Thankfully, a couple dozen kids around the world, including a few at the NIH, are now engaged in further science and research on this experimental treatment.
But the treatment doesn’t seem to help with their seizures. As a result of the neurodegeneration, my kids have seizures almost daily. A couple years ago they were way more than daily, they were many a day. We started giving the kids traditional pharmaceutical medicines for their seizures. And they worked – some of them worked, some of them didn’t work, but the big problem was most seizure drugs cause your kids to become zombies. The whole purpose of the drugs is to essentially take away the stress or the triggers that cause seizures. We had heard about a father in California that was treating a young son who has intractable seizures, seizing constantly, all day long, and he was using cannabis medicine. We became interested. We contacted him; we learned more about the drug.
Ultimately, we decided to pursue cannabis in earnest. Did you know that the cannabis plant was used as early as 2900 BC in China as medicine? Did you know that we in America were using, in the 1800s, for a century, we were using cannabis to treat a number of afflictions. Unfortunately, in the early 1900s, as you all probably know, cannabis was prohibited and subsequently demonized and turned into a war. It’s a shame. It truly is a shame.
But we became convinced that the oil would work. So we set out to find a supply of oil, certainly – Cannabis has been legal in the great state of Nevada for almost a decade, surely we could just go out and buy some oil and give it to our kids. Not true; there was no oil available in our great state. So we set out to do it ourselves. First we got physician approval to do the treatment of cannabis, and then we became caregivers, licensed caregivers in the state of Nevada, which allows us to cultivate and make extractions, oils from the cannabis plant to give to our kids. Every day – three times a day – the girls get a little oil, like what you see here. This oil is extracted from a very special cannabis plant that’s high in cannabidiol, or CBD as we call it.
Unfortunately, this oil, by itself, doesn’t even completely, for our children, stop their seizures, so we still use a small amount of pharmaceutical medicine, but we use less – we’ve reduced the number of drugs the kids take, and we’ve reduced the amount of dose from the few drugs we do give them, and consequently our kids are not only having fewer seizures and shorter seizures, they’re also bright eyed and happy children again, they’re no longer little zombies. This was great progress, but I thought to myself, holy cow, there are two million epilepsy or seizure disorder sufferers in the United States, who’s going to help those folks, those kids, those adults with these disorders? And at that moment we decided to take what we had learned for our children and turn it into a commercial business here in the state of Nevada, which was just preparing to allow that to happen, and as Kylie mentioned, we’ve endeavored to do so and are now licensed to grow, extract and sell, dispense cannabis here in Nevada, in the state of Nevada.
Someday the federal government will end prohibition. But how many lives will be lost, potentially, or severely affected in the meantime? How many kids with seizures like mine will move their families, will uproot their homes to move to Colorado or Nevada to get these medicines? How many cancer patients will be denied access to inexpensive and effective medicine to treat the side effects like pain and nausea that come with chemotherapy? There is a groundswell of folks like me who understand the potential of cannabis, and I’m grateful for that.
The ironic thing is some of my family and friends, including, most particularly, my own mother, are still not convinced. My mother is worried that free access to cannabis is actually a threat to society and that perhaps the medicinal value doesn’t outweigh that threat. And she sees the medicinal value in her grandchildren. The problem, I think, is that, really, we just don’t have enough hard evidence yet to convince the skeptics.
There just isn’t enough science and research to back the foundation that the medicine’s working, the medicine’s effective, that it’s useful for large populations of people. That’s not to say that research doesn’t exist, there’s a mountain of evidence that the cannabis plant is useful. But there’s not a lot of clinical science, hard clinical science to that effect. That’s the conundrum; that’s the chicken and egg problem.
Until the federal prohibition of cannabis ends, until we take cannabis off the schedule of harmful drugs like LSD and methamphetamines that have no medicinal value, until we remove cannabis from that list, which is insane that it’s on that list to begin with, until we remove it from that list, research can’t take place. If I came to the University of Nevada, Reno Medical Center tomorrow with a million dollar grant to study cannabis, I would likely not have success. It’s not that the scientists don’t want to study the plant, it’s that they are fearful of losing federal funding. It’s because they’d have to deal with the DEA and other regulatory agencies at the federal level, which is a complex and expensive process. This is one of the many tentacles of the prohibition of cannabis that actually prohibits us from moving forward. My own personal experience with cannabis along with the evidence, the science that I know about, makes me absolutely certain what I shared with you earlier.
Cannabis has the potential to become the big healthcare success story of our lifetimes but only if we allow it. Here are Addie and Cassie in a more recent picture. For those of you who are still skeptical, perhaps for those of you like my mother who still worry about the societal downside of cannabis, I ask you to look at this picture and consider the following: By limiting access to cannabis for parents like myself, you’re forcing me to make a decision between the lives or well-being of my children and going to jail. How is that a fair or rational set of thinking in modern society? Our 16th president, the famous 16th president, had very strong feelings about this subject. He said, “Prohibition … goes beyond the bounds of reason in that it attempts to control a man’s appetite by legislation and makes a crime out of things that aren’t crimes …
A prohibition law strikes a blow at the very principles upon which our government was founded.” This was Abraham Lincoln. And he said these words before we had the experiences we had with alcohol prohibition or with cannabis prohibition. Someday the federal government will spend the money on research. Someday the NIH will actually be actively pursuing cannabis as a treatment. Until that day comes, a large group of us have come together and formed a nonprofit to organize and fund clinical research in cannabis in the private sector until we can use the academic institutions.
We call the foundation PeopleCann, in honor of advocates like myself who over the last several decades have been saying what I’m now saying and whose words I didn’t listen to until my own situation demanded it. Never in her wildest imagination – excuse me – would my wife have thought that today she would be a cannabis advocate. She was also “misinformed,” let’s say, about the plant until we needed to learn. Neither my wife nor I would ever believe that our young children would become the next generation of cannabis advocates. (Exhales) I’d like you to meet them. Please give a birthday welcome to my wife Chris – excuse me – and my daughters, Addie and Cassie Hempel. (Applause) Hi. (Applause) Would it be unkind to ask if we can sing Happy Birthday? (All singing) Happy Birthday to you.
Happy Birthday to you. Happy Birthday dear Cassie. Happy Birthday to you. Yay! Good girls!
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