Letter #2:
Dear Senator Scutari:
A friend just told me that you introduced into the Senate today a bill for the medical use of marijuana. I want to thank you, yet those words are so inadequate.
I have never used marijuana, but I have a medical condition called reflex sympathetic dystrophy (RSD) that I have reason to believe marijuana could help. RSD is a neurological disease stemming from an injury that can be as serious as a broken bone or as simple as a stubbed toe. Millions of people have this condition, but not many people have heard of it.
RSD develops when the sympathetic nervous system, the body’s “fight or flight” system that responds to an injury, doesn’t react as it should. It over-responds, and the “normal” signals of injury, such as pain and swelling, escalate rather than subside. The sympathetic nervous system continues to send faulty signals and the disease becomes neurological, resulting in severe pain that can last indefinitely.
This condition usually affects an extremity—an arm or a leg. Once RSD develops, it may go into remission within 1-1/2 to 2 years, but it remains in the body and another injury may trigger it to become active again. That’s what happened with me. I broke my arm in 1990. RSD set in almost immediately. Even though the break was at the wrist, the RSD jumped to my shoulder, a common occurrence.
It is almost impossible to describe the level of pain from this condition to someone who has never experienced it. Night after night of no sleep, even with sleeping pills, with pain at a frenzied level. Arm swollen to the point of grotesqueness; surely that arm didn’t belong on my body. And as the swelling remained for an extended period, the skin discolored to a sickly purplish yellow and the tissue lost much of its elasticity; to this day, even though the RSD did go into remission after that injury, I can flex my wrist to about half of normal, and with very little physical exertion my shoulder quickly feels like someone is trying to pull my arm out of its socket.
I was very fortunate when the RSD did go into remission. But I fell on the stairs in our house in 1999 when I was hurrying down to let our old dog outside before she had an accident. Instead, I had one when my slipper flew off my foot and I flew into the air. The result was a herniated lumbar disc, a herniated cervical disc, and a broken coccyx; worst of all, my unwelcome friend RSD made a reappearance and decided to stay.
The RSD specialist told me a couple of years ago that I was very lucky in that it’s rare for RSD to go into a back, but when it does, it usually encompasses the entire body, including the arms, legs, and even the face, but mine had been doing a good job of staying in my back at that time. It didn’t go into remission in that 1-1/2- to 2-year window, however, and since then, it’s been spreading, slowly but steadily. It has moved into my mouth and into the nerves leading into the brain stem, causing vertigo; right now a good portion of my body is beyond black and blue from falling—it’s purple—and I’ve broken some bones. And worst of all, it has moved into my legs. A remission at this point is very unlikely. But again, I have also been lucky, in that one of the neuropathic pain blockers effective with RSD has helped to some extent.
Before this drug, Neurontin, and several other drugs to complement it, my life since 1999 wasn’t worth living, quite literally. Just brushing my teeth with mint toothpaste felt like I was brushing with razor blades. Because of intense burning and muscle spasms, the entire length of my back felt like someone was stabbing it repeatedly and deeply with long knives. Even with all the drugs I’m taking (my breadbox is filled with pill bottles that overflow onto the counter), my legs usually feel like someone is holding a match to them; occasionally the match becomes a blowtorch. At its worst, it feels like my legs have been ground to powder in a vise and then tossed into an incinerator. It’s the most horrible pain I’ve ever experienced. I can barely walk on those days and need arm crutches just to take a step. My face usually looks and feels like it’s burning; I’ve had capillaries burst and require lasering to remove the resulting red lines. And all of these drugs keep me moderately comfortable only as long as I’m not doing very much physically. Just about any activity for any length of time with my arms in front of me, which includes just about everything, starts the burning and muscle spasms.
I have been warned by several medical professionals and other RSD patients that the Neurontin will stop working, however, and I can see that it’s already becoming less effective. And I’m just about out of options. I’ve tried a number of others with no relief and had an allergic reaction to one. I’ve tried intravenous lidocaine and intravenous ketamine with no success.. Biofeedback training couldn’t help. The whirlpools at physical therapy and water therapy actually caused the RSD to spread. So did acupuncture.
As things stand now, once the Neurontin stops working, my life is as good as over. The only pharmaceutical options remaining to me will be the heavy-duty drugs like morphine, which will leave me a nonfunctioning vegetable. But marijuana might be a marvelous intermediate-level drug that could help the neurogenic pain and still allow me to function.
There is another option that I’d prefer not to use. Quality of life has always been very important to me, and I don’t consider the existence I would have on morphine—note “existence,” not “life”—acceptable. With that in mind, I joined the Hemlock Society, a death with dignity organization that worked with terminally and interminably ill patients to be sure that a “hastened death” isn’t botched. Hemlock merged with another group, however, and instituted a new policy that it would help only the terminally ill who are within six months of dying. I then joined an organization called Dignitas in Switzerland , where physician-assisted suicide is legal. Although Dignitas will help some people with severe nonterminal illness, it also focuses on the terminally ill, and I can’t completely rely on it, either.
But I’m not suicidal. I’m only 59 and I have a lot that I’d like to do yet with my life, even if it isn’t the life I’d envisioned for myself. I have grandchildren I’d like to continue to enjoy, I have two dogs I’d like to outlive, and I’d like to write a book, however slowly it may go. Your bill voted into law might allow me to continue to do these things once my medications stop working, and it might make my life more tolerable now, when I have days of what’s called “breakthrough pain,” when the pain breaks through in spite of all of my medications and I’m holding onto the kitchen sink to keep from screaming.
So, as I said, a mere “thank you” seems very inadequate, but I do thank you for introducing this medical marijuana bill and for the hope that you’re giving me, and so many others, just by having done that. May you have a blessed holiday season, Saint Nicholas..\
Sincerely,
Roberta Massey
WRITTEN TESTIMONY IN SUPPORT OF ASSEMBLY BILL 804: A BILL TO PROVIDE FOR THE PHYSICIAN-SUPERVISED USE OF MEDICAL CANNABIS IN NEW JERSEY, BEFORE THE HEALTH AND SENIOR SERVICES COMMITTEE
By Paul Armentano
Deputy Director
NORML | NORML Foundation
May 22, 2008
I applaud the members of the New Jersey Committee on Health and Senior Services for holding this hearing regarding Assembly Bill 804, “The New Jersey Compassionate Use Medical Marijuana Act,” which seeks to shield from criminal prosecution those seriously ill patients who use cannabis therapeutically with a doctor's recommendation. This bill would not alter existing laws prohibiting the possession and use of marijuana for recreational purposes.
I have examined the science surrounding the medicinal use of cannabis and its active compounds (known as cannabinoids) for fourteen years. During this time, I have published more than 500 articles and white papers on the subject in numerous journals, anthologies, and college textbooks.
I also have work experience as a paid consultant for London’s biotechnology firm GW Pharmaceuticals (http://www.gwpharm.com) – the only company legally licensed in the world to cultivate medical cannabis and perform clinical trials on various preparations of oral spray cannabis extracts. These extracts are legally available by prescription in Canada as well as on a limited basis in Spain and the United Kingdom under the trade name Sativex. Clinical trials assessing the efficacy of Sativex on cancer pain are ongoing in North America under the guidance Dr. Russel K. Portenoy, Chairman of the Department of Pain Medicine and Palliative Care at Beth Israel Medical Center in New York City.
Most recently, I authored the booklet, Emerging Clinical Applications for Cannabis and Cannabinoids: A Review of the Recent Scientific Literature (2008, NORML Foundation), which critically reviews the efficacy of cannabis or cannabinoids in the treatment of 17 clinical indications, including HIV, Alzheimer’s disease, cancer, fibromyalgia, multiple sclerosis, osteoporosis, rheumatoid arthritis, and Tourette’s syndrome.
I profiled these conditions because patients from around the nation write me inquiring about the use of cannabis therapy to treat these debilitating illnesses. Many of them seek guidance not only for themselves, but also for their physicians, so they can begin to engage in an open dialogue regarding their medicinal use of marijuana.
While researching this book, I discovered that many of the conditions profiled in it – such as HIV and multiple sclerosis – could be successfully moderated by cannabis therapy. In several cases, cannabinoids may halt the progression of these diseases in a more efficacious manner than available pharmaceuticals. In virtually all cases, my report is the most thorough and comprehensive review of the recent scientific literature regarding the therapeutic use of cannabis and cannabinoids. An online edition of this booklet is available for review by members of the Committee at: http://www.norml.org//index.cfm?Group_ID=7002.
While writing this booklet, I reviewed more than 150 clinical and preclinical studies assessing the therapeutic value of cannabis and its active compounds. The findings of many of these studies have significant public policy implications.
For example, a 2006 paper published by the National Institutes of Health (NIH) and the National Institute on Alcohol Abuse and Alcoholism concludes that cannabinoids “hold therapeutic promise in a wide range of disparate diseases and pathological conditions, ranging from mood and anxiety disorders, movement disorders such as Parkinson’s and Huntington’s disease, neuropathic pain, multiple sclerosis and spinal cord injury, to cancer, atherosclerosis, myocardial infarction, stroke, hypertension, glaucoma, obesity/metabolic syndrome, and osteoporosis.”1
Though impressive, this list of clinical conditions that may be improved by cannabis is far from exhaustive. For instance, investigators at The Scripps Research Institute in California in 2006 reported that THC inhibits the enzyme responsible for the aggregation of amyloid plaque — the primary marker for Alzheimer's disease — in a manner “considerably superior” to approved Alzheimer's drugs such as donepezil and tacrine. “Our results provide a mechanism whereby the THC molecule can directly impact Alzheimer's disease pathology," researchers concluded. “THC and its analogues may provide an improved therapeutic [option] for Alzheimer's disease [by]... simultaneously treating both the symptoms and the progression of [the] disease.”2
Following the publication of this study, investigators writing in the British Journal of Pharmacology, stated, "[C]annabinoids offer a multi-faceted approach for the treatment of Alzheimer's disease by providing neuroprotection and reducing neuroinflammation, whilst simultaneously supporting the brain's intrinsic repair mechanisms by augmenting neurotrophin expression and enhancing neurogenesis. ... Manipulation of the cannabinoid pathway offers a pharmacological approach for the treatment of AD that may be more efficacious than current treatment regimens."3
Recent scientific studies also indicate that cannabis can effectively and safely treat symptoms of HIV as well as the side effects of various antiretroviral medications. Last February, investigators at San Francisco General Hospital and the University of California's Pain Clinical Research Center assessed the efficacy of inhaled cannabis as a treatment for HIV-associated sensory neuropathy. Writing in the journal Neurology, researchers reported that patients who smoked low-grade cannabis three times daily experienced, on average, a 34 percent reduction in pain.4
Investigators at Columbia University also published clinical trial data in 2007 reporting that HIV/AIDS patients who inhaled cannabis four times daily experienced "substantial .... increases in food intake ... with little evidence of discomfort and no impairment of cognitive performance." They concluded, "Smoked marijuana ... has a clear medical benefit in HIV-positive [subjects].”5 As a result, many experts now believe that "marijuana represents another treatment option in [the] health management" of patients with HIV/AIDS.6
Recent clinical and preclinical studies also suggest that cannabinoids may inhibit the progression of multiple sclerosis. Writing in the journal Brain, investigators at the University College of London's Institute of Neurology recently reported, “[C]annabis may also slow the neurodegenerative processes that ultimately lead to chronic disability in multiple sclerosis and probably other diseases.”7
Clinical data reported in 2006 from an extended open-label study of 167 multiple sclerosis patients found that use of whole plant cannabinoid extracts relieved symptoms of pain, spasticity, and bladder incontinence for an extended period of treatment (mean duration of study participants was 434 days) without requiring subjects to increase their dose.8
Results from a separate two-year open label extension trial in 2007 also reported that the administration of cannabinoids was associated with long-term reductions in neuropathic pain in select MS patients. On average, patients in the study required fewer daily doses of the drug and reported lower median pain scores the longer they took it.9 These results would be unlikely in patients suffering from a progressive disease like MS unless the cannabinoid therapy was halting its progression.
Finally, a growing body of scientific evidence now indicates that compounds in cannabis may actually halt the proliferation of various forms of cancer, including brain cancer, prostate cancer, breast cancer, lung cancer, skin cancer, pancreatic cancer, and lymphoma.10
It is unconscionable to think that under current state law, a patient who uses cannabis to effectively treat these and other serious, potentially lethal diseases faces up to 10 years in jail for simply possessing or growing a plant that can alleviate their suffering. Passage of A804 would help to protect select patients so that they would no longer have to.
State law already allows for the medical use of many controlled substances, such as cocaine and morphine, which can be abused in a non-medical setting. Likewise, New Jersey law should also properly differentiate between medicinal cannabis and other controlled substances. Please support A804 and help protect New Jersey's patient community.
Contact Information
paul@norml.org
References
1 Pacher et al. 2006. The endocannabinoid system as an emerging target of pharmacotherapy. Pharmacological Reviews 58: 389-462.
2 Eubanks et al. 2006. A molecular link between the active component of marijuana and Alzheimer’s disease pathology. Molecular Pharmaceutics 3: 773-777.
3 Campbell and Gowran. 2007. Alzheimer's disease; taking the edge off with cannabinoids? British Journal of Pharmacology 152: 655-662.
4 Abrams et al. 2007. Cannabis in painful HIV-associated sensory neuropathy: a randomized placebo-controlled trial. Neurology 68: 515-521.
5 Haney et al. 2007. Dronabinol and marijuana in HIV-positive marijuana smokers: caloric intake, mood, and sleep. Journal of Acquired Immune Deficiency Syndromes 45: 545-554.
6 Fogarty et al. 2007. Marijuana as therapy for people living with HIV/AIDS: social and health aspects AIDS Care 19: 295-301.
7 Pryce et al. 2003. Cannabinoids inhibit neurodegeneration in models of Multiple Sclerosis. Brain 126: 2191-2202.
8 Wade et al. 2006. Long-term use of a cannabis-based medicine in the treatment of spasticity and other symptoms of multiple sclerosis. Multiple Sclerosis 12: 639-645.
9 Rog et al. 2007. Oromucosal delta-9-tetrahydrocannabinol/cannabidiol for neuropathic pain associated with multiple sclerosis: an uncontrolled, open-label, 2-year extension trial. Clinical Therapeutics 29: 2068-2079.
10 Sarfarez et al. 2008. Cannabinoids for cancer treatment: progress and promise. Cancer Research 68: 339-342.
Oral Testimony to the New Jersey Assembly:
May 22, 2008
My name is Ken Wolski. I am Executive Director of the Coalition for
Medical Marijuana—New Jersey, Inc. (CMMNJ) I am a registered nurse with over 30
yrs. experience in New Jersey & Pennsylvania. My professional opinion is that
marijuana is a safe, effective and inexpensive therapeutic agent that should
be available to any patient who can benefit from it.
In 2003, I co-founded CMMNJ. We are the only statewide organization in NJ
that is solely dedicated to bringing about safe and legal access to medical
marijuana. We incorporated in 2006 and became a 501(c )(3) in 2007. Our
mission is to educate the public and the legislators about the benefits of medical
marijuana.
Accordingly, I have presented to each member of this committee material in a
manila envelope.
This envelope contains:
· A statement from me and my curriculum vitae, or resume;
· A DVD that CMMNJ produced. It is a 26 minute documentary that
tells the story of NJ patients and healthcare providers who are struggling with
outdated drug laws;
· A booklet entitled “Emerging Applications for Cannabis and
Cannabinoids” http://www.norml.org//index.cfm?Group_ID=7002
that details over 140 clinical, pre-clinical and other scientific
studies showing the benefits of medical marijuana for a wide range of diseases,
symptoms, and conditions;
· There is also a statement from the author of that booklet, Paul
Armentano, in support of the NJ bill, A804;
· There is a copy of the Position Paper from the American College of
Physicians supporting medical marijuana and calling for re-scheduling which
would make it possible for marijuana to be available in pharmacies;
· Finally there are two letters included, one from a mother whose
son has Freidrich’s ataxia, and one from a grandmother with Reflex Sympathetic
Dystrophy (both NJ residents) who are suffering needlessly by being denied
access to medical marijuana.
CMMNJ has no doubt that medical marijuana will eventually be allowed in New
Jersey. There is too much logic, common sense, compassion and science that
supports it. Logic says that docs prescribe far more dangerous and addicting
drugs than marijuana; Common Sense says that this issue ought to be decided
in the doctor-patient relationship, in the best interest of the patient;
Compassion says that no patient should suffer needlessly; and there is a wealth
of scientific evidence that supports the safety and efficacy of medical
marijuana.
Thank you for the opportunity to address this committee.
St Joesphs
I concluded my speech at St. Joseph's University's Institute of Catholic Bioethics in Philadelphia, Pennsylvania on November 14, 2007 with a version of the following remarks:
Finally, I'd like to briefly discuss the latest clinical study of smoked marijuana that was published in the Journal of Acquired Immune Deficiency Syndromes in August 2007. This study is literally hot off the presses. It was done by Columbia University and it compared Marinol with smoked marijuana. Marinol is a pharmaceutical preparation that contains a synthetic version of the main psychoactive ingredient in marijuana, and the smoked marijuana was supplied by NIDA from their farm in Mississippi. There are some very interesting things in the study. For example, HIV positive patients are the largest group of patients using cannabinoids, with somewhere between 20% and 37% of all HIV positive patients use cannabinoids. Of that group, 93% prefer smoked marijuana to Marinol. That's pretty remarkable--that 93% would prefer an illegal substance to a perfectly legal substance that can be purchased in a drug store. One of the benefits of smoked marijuana, the study points out, is that the effects peak rapidly, in less than 20 minutes, which allows for dose titration and immediate symptom relief. Marinol, on the other hand, has a slow rate of onset, about 120 minutes, and a long duration of action, which makes it difficult to titrate the dose, and nauseated patients have difficulty with an oral preparation. The study was a double-blind, placebo controlled study where they gave ten participants over 32 days different doses of Marinol and marijuana four times a day. The Marinol doses were 0 mg, 5 mg and 10 mg, and the smoked marijuana doses were joints with THC percentages of 0%, 2% and 3.9%. Then they tested the participants for Diet, Mood, Cognitive Behavior and Sleep. (The recommended dose of Marinol is 2.5 mg twice a day for appetite, but larger doses were selected based on previous studies that showed this dose was ineffective.
 Also, the marijuana NIDA provided was a low dose of THC, as the study pointed out that the average marijuana found on the streets of New York City was 4% to 5% THC.) The findings were:
Both Marinol and smoked marijuana significantly increased daily caloric intake;
Participants reported a positive experience from smoked marijuana and high dose Marinol--a good drug effect leaving them feeling friendly and mellow;
Intoxication was not associated with cognitive impairment--neither marijuana nor Marinol altered performance on psychomotor or memory tasks compared with a placebo;
Smoked marijuana had the added benefit of improving ratings of sleep;
There was little evidence that withdrawal symptoms occurred--anxiety, sleep disturbance, irritability, and restlessness did not occur;
Gastrointestinal symptoms--nausea and diarrhea--were relieved by both Marinol and smoked marijuana. One of the conclusions of the study was: "Present findings support the clinical utility of Marinol and contrast with reports that it is too poorly tolerated or unreliable to be clinically useful." So here is a study that proves, or thinks it has proved, that a high dose of Marinol, the FDA approved drug, is as good, or nearly as good, as a low dose of smoked marijuana, a drug the FDA and DEA says has no recognized medical uses in the United States. It's no wonder that the DEA has repressed the clinical studies of smoked marijuana for so long. When these studies are finally done, the results are an embarrassment to the ideological position of the DEA regarding medical marijuana.
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