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Table of Contents

Table of Contents
Table of Contents

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BOX 1.1 Selected Cases from the Public Sessions

G.S. spoke at the IOM workshop in Louisiana about his use of marijuana first to combat AIDS wasting syndrome and later for relief from the side effects of AIDS medications.

     Skin rashes, dry mouth, foul metallic aftertaste, numbness of the face, swelling of the limbs, fever spikes, headaches, dizziness, anemia, clinical depression, neuropathy so crippling that I could not type, so painful that the bed sheets felt like sandpaper, nausea so severe that I sometimes had to leave the dinner table to vomit, and diarrhea so unpredictable that I dared not leave the house without diapers.

     These are some of the horrors that I have endured in the past 10 years during my fight for life against the human immunodeficiency virus. But these ravages were not caused by HIV itself, or by any of the opportunistic infections that mark the steady progression of AIDS. Each of these nightmares was a side effect of one of the hundreds of medications I have taken to fight one infection after another on my way to a seemingly certain early grave.

     Had you known me three years ago, you would not recognize me now. After years of final-stage AIDS, I had wasted to 130 lb. The purple Kaposi's sarcoma lesions were spreading. The dark circles under my eyes told of sleepless nights and half-waking days. I encountered passages of time marked by medication schedules, nausea, and diarrhea. I knew that I was dying. Every reflection shimmered with death, my ghost-like pallor in the mirror, the contained terror on the face of a bus passenger beside me, and most of all the resigned sadness in my mother's eyes.

     But still I was fortunate because along the way I rediscovered the ancient understanding of marijuana's medicinal benefit. So I smoked pot. Every day. The pot calmed my stomach against handfuls of pills. The pot made me hungry so that I could eat without a tube. The pot eased the pain of crippling neural side effects so that I could dial the phone by myself. The pot calmed my soul and allowed me to accept that I would probably die soon. Because I smoked pot I lived long enough to see the development of the first truly effective HIV therapies. I lived to gain 50 lb., regain my vigor, and celebrate my 35th birthday. I lived to sit on the bus without frightening the passenger beside me.

     Even at this stage of my recovery I take a handful of pills almost every day and will probably continue to do so for the rest of my life. While I am grateful for the life-saving protease inhibitor therapies, they bring with them a host of adverse reactions and undesirable side effects. Different patients experience different reactions, of course, but almost all patients experience some. Smoking marijuana relieves many of these side effects.

     I am not one of the exceptional eight patients in the United States with legal permission to smoke marijuana. Every day I risk arrest, property forfeiture, fines, and imprisonment. But I have no choice, you see, just as I have no choice but to endure the side effects of these toxic medications. So, many patients like me are breaking the law to enjoy relief that no other therapy provides.

      I sit here, I believe, as living proof that marijuana can have a beneficial effect in staving off wasting. Every pound was a day. I figured that for every pound of body weight I could maintain, that was another day that I could live in hopes that some effective therapy would emerge.



B.D. spoke at the IOM workshop in Louisiana. She is one of eight patients who are legally allowed to smoke marijuana under a Compassionate Use Protocol. She uses marijuana to relieve nausea, muscle spasticity, and pain associated with multiple sclerosis.

     I was diagnosed with multiple sclerosis in 1988. Prior to that, I was an active person with ballet and swimming. I now have a swimming pool, so I swim each and every day, and I smoke marijuana. The government has given me the marijuana to smoke. Each month I pick up a can filled with the marijuana cigarettes rolled by the government.

     At one time I weighed 85 lb. and I now weigh 105. Twenty pounds is quite a bit to put on. I could not walk. I did not have the appetite. I use a scooter now for distance. I can get around the house. I have a standard poodle who is kind of like an assistant dog. She is good at it. She helps me.

     When I found out that there was a program to get marijuana from the government, I decided that was the answer. I was not a marijuana smoker before that. In fact, I used to consider the people I knew who smoked the marijuana as undesirables. Now, I myself am an undesirable.

     But it works. It takes away the backache. With multiple sclerosis, you can get spasms, and your leg will just go straight out and you cannot stop that leg. You may have danced all of your life and put the leg where you wanted it to be, but the MS takes that from you. So I use the swimming pool, and that helps a lot. The kicks are much less when I have smoked a marijuana cigarette. Since 1991, I've smoked 10 cigarettes a day. I do not take any other drugs. Marijuana seems to have been my helper. At one time, I did not think much of the people who smoke it. But when it comes to your health, it makes a big difference.



J.H. spoke at the IOM workshop in Washington, D.C. He was seriously injured in an accident, suffers from a form of arthritis associated with abnormal activity of the sympathetic nervous system known as reflex sympathetic dystrophy, and has hepatitis C. He uses marijuana to relieve nausea from liver disease, pain, and muscle spasms.

     I am 48 years old, married with two children. I am a veteran who served during the Vietnam war. I was exposed to hepatitis C in 1972 by a blood transfusion, which I needed because of a motor vehicle accident that broke my back; ruined my right shoulder, my left thumb, and hand; and almost amputated my right leg at the knee. My hepatitis C was not diagnosed until 1997--after the disease had destroyed my pancreas* and I had four heart attacks, one angioplasty, and a minor stroke. In 1989, while at work, I was involved in an accident with a large soil survey auger. My pelvis was crushed, and serious nerve damage was the result. I also have reflex sympathetic dystrophy, which is a neurological disease that has a tremendous amount of pain and muscle spasms.

     I have reached what the doctors call end-stage liver disease from the hepatitis C. I have lost 85 lbs. due to the severe bouts of nausea and vomiting. Every time I come home from a hospital stay, my 7 year old asks if I got the liver transplant. I am on a transplant list, but I am not a candidate until I am seven days from death.

     In October 1997, after trying four different antinausea medications, four of the doctors that I see told me to go to Europe and see a doctor and try medicinal cannabis. My primary care doctor wrote me a letter to carry with my medical records asking that the doctor help me in any way that he could to alleviate the symptoms of the hepatitis C and the reflex sympathetic dystrophy. Those symptoms are severe nausea and pain from the hepatitis C and pain and muscle spasms from the neurological disease.

     I went to Europe in November 1997, where I saw a doctor of internal medicine. He prescribed me cannabis, 1—2 g a day. I got the medicine and a pipe and tried it. Within two minutes of taking two puffs from the pipe, the nausea was gone. I don't think that I felt the high, although I was quite elated. In about 45 min. I was starving. Normally, I have a fear of eating because I vomit almost always after I eat or take a pill. I forgot about that, and I think I ate more that night than I had eaten in months. I did feel a little nauseated after about four hours, but I smoked two more puffs, and in about two hours I went to bed. The next morning I felt hungry. During my nine-day stay in Europe, I was able to stay free of vomiting and the waves of nausea became less frequent.

     I had experienced four years of pain control using Tegretol, a drug used by epileptics to control seizures. Now I can't use that medication because of the damage that it causes my cirrhotic liver. When I smoked about 2 g of marijuana a day, the nausea was gone and I was no longer losing weight. The pain was at an acceptable level. Sometimes I still find it necessary to use an opiate painkiller, but only when the pain is at its worst. Surprisingly, I lost an associated high within a few days. I also think the cannabis has an antidepressant effect on me, as I no longer have what I call the "poor me" feelings that I experienced after learning about the hepatitis C.




*This is an unlikely consequence of hepatitis C; it is more likely that the patient's liver was damaged.