Pubdate: Fri, 18 May 2001 Source: Hartford Courant (CT) Copyright: 2001 The Hartford Courant Contact: http://www.hartfordcourant.com/ Details: http://www.mapinc.org/media/183 Author: Susan Campbell, The Hartford Courant LIVING WITH HIV - AND MAYBE ONLY BECAUSE OF CANNABIS In 1996, Alice Ferguson was wasting away, and it showed. Alice is a big woman, and never had she felt like such a foreigner in her own skin, which hung in folds around her. She couldn't keep anything down, couldn't stand the smell of food or the HIV medicine she blamed for her wasting. At first, her doctors agreed that the medication was the culprit. She took it twice a day, and twice a day she hugged the toilet bowl for 45 minutes afterward with nausea and vomiting that make the 24-hour flu look pleasant. It felt like every cell was giving something up - and in a way, every cell was. Meals stretched to two hours as she chewed, prayed and waited to see if her body would accept morsels, if nothing else. Even the dietary supplement Ensure was too harsh for her body. Within a few months, Alice had lost 128 pounds. Her doctor diagnosed it as AIDS wasting - a drastic, involuntary weight loss tied to the human immunodeficiency virus. He prescribed Marinol, a product of Illinois-based Unimed Pharmaceuticals, which contains delta-9 tetrahydrocannabinol, or THC, the same active ingredient in marijuana. Users vary in their support of the drug, administered to Alice as a little white ball, a gel tablet. Alice swears by it. With her first Marinol, she was soon able to start eating. This week, the Supreme Court ruled that federal law does not recognize a medicinal necessity for marijuana. The decision, written by Clarence Thomas, suggests that 5,000 years of medicinal use of the drug never happened. Over the eons, marijuana or its active ingredients have been used - as in the case of Alice - to improve appetite, halt the loss of lean-muscle mass and control vomiting and nausea. It also can limit muscle pain and spasticity in people with multiple sclerosis, and it can prevent epileptic seizures in some patients and alleviate some chronic pain. Some cancer patients swear by it. So do people with AIDS. Alice would ask a few moments of the justices' time. "I wish I could lock myself in a room with some of these decision-makers and just talk for about two hours," she said. "I would say, `If you don't believe me, live what I've lived, and then make the decision you're making this day.' At this point, I am so mad about what's happening, and mad at other people not experiencing what I live every day, not because we don't have programs in place but because of ignorance." Alice is a former crack addict, and she hesitated putting herself back in the world of street drugs - or even in their general, legal neighborhood. When her doctor prescribed Marinol, she laughed and said, "Why do I need this? I can get the real thing." She was kidding. She'd never smoked reefer. She didn't like the smell. But in her world of illness and hope, she knows plenty about the straight street stuff. "My best friend in life lives in North Carolina," Alice says. "She has battled cancer in almost every major organ of her body except her liver. I mean, she's had it all. I can remember we were 17, and we had gone partying, and we got back to her apartment, and she dropped to her knees with pain. I knew she had cancer, but I had never seen her collapse under the pain. I got her inside, and thought, `What could I do?' I could light a joint. I can tell you without question that she went from total collapse to sitting up and taking a few puffs, to being ready to go back out the door." In the same vein, Marinol is not for everybody. Unlike Alice, most people who are persistently vomiting don't benefit from medication taken orally. Some studies say Marinol is not as strong and isn't absorbed as quickly as marijuana. Some patients say the medicine leaves them debilitated and anxious, the opposite effect of marijuana. Federal anti-marijuana laws were passed in this country in 1937. Since then, eight states have passed medicinal-marijuana initiatives. Connecticut allows cancer and glaucoma patients to be prescribed marijuana, but there's no place to fill those prescriptions. Alice, a computer specialist and AIDS activist, watches clients at Connecticut Positive Action Coalition and thinks about how the quality of medical care so often depends on which side of the street you live. People from particular income brackets have paved and lit access to perfectly legal therapeutic drugs like Valium, Xanax or Zoloft. "These are not drug addicts looking to get high," Alice said. "The decision-makers don't know. You know what? I've come to acknowledge that they don't want to know, because if they acknowledge what really happens in the lives of people living with cancers and with AIDS, they would then have to rethink 90 percent of what they do." - --- MAP posted-by: Andrew