Marijuana And AIDSBy Peter Gorman
There are now 30 diseases listed under the condition known as Acquired Immune Deficiency Syndrome, AIDS. Most AIDS sufferers will contract several of these 30 during the course of their illness before finally succumbing to one of them. The traditional medications used in both their treatment and as prophylaxis - or prevention - cause a wide range of side effects, including loss of appetite, nausea, headaches, depression, pain, disorientation and fevers. Virtually the only medicine capable of treating the entire spectrum of side effects without causing harm to the user is marijuana. Naturally, it remains illegal.
Jim Barnes was 38 years old when High Times first contacted him in the fall of 1993. The Michigan resident had tested positive for the Human Immunodeficiency Virus, HIV, in 1986. In 1987 he began a regimen that included AZT treatment, an antiretroviral therapy thought to stave off the onset of AIDS-related diseases. But the therapy's side effects included disorientation and nausea and caused pain throughout his body; he quickly switched to another antiviral therapy, an experimental drug then called ddI. According to Barnes, the ddI seemed to help for about a year, but its side effects were also difficult: he found it incredibly speedy and it caused him to fly into emotional rages. He used marijuana to calm himself, and finally quit antiviral therapy altogether in 1988.
By 1989 he became ill and was diagnosed with AIDS. "I'd come down with an intestinal disorder that caused uncontrollable diarrhea and simultaneously made me throw up everything I ate," Barnes explained. "I began to lose a lot of weight. I dropped 36 pounds, from 150 to 114, within a month."
At the time he first exhibited symptoms, Barnes was an innkeeper at a bed-and-breakfast, a program counselor at an adult foster-care home, a coordinator for a leisure activity for handicapped people and a yoga instructor. Shortly after he became ill he gave up most of his work. And most of his income.
"I couldn't afford to buy marijuana anymore, but since I knew that it helped me both with my nausea and in regulating my weight - as well as eliminating the incredible headaches I used to get from my medications - I presented my doctor with the idea of getting me federal pot." While Barnes' physician was afraid of the possible ramifications of applying to the federal government for marijuana, he did open the door to him meeting a second doctor who agreed to fill out the necessary paperwork. In 1990, Robert Randall - the Washington glaucoma sufferer who was the first person to receive medical marijuana from the federal government - helped Barnes apply to the Food and Drug Administration for the Compassionate Investigation New Drug (IND) program.
Five months later his application was approved. He was given an IND number and told that his marijuana would be arriving any day. But the marijuana never arrived. The Drug Enforcement Administration, which has to approve federal marijuana shipments, refused to recognize Barnes' case. A year later, Barnes was notified that the IND program was under review by the Bush Administration, and several months after that, the program was terminated. Barnes, one of 34 patients who were approved for the IND program but denied access to federal marijuana, continued to buy from the street when he could. But eventually his funds ran out. He starved to death on July 18, 1994 - a victim of the AIDS "wasting syndrome."
Jim Barnes (R) with his partner, Gilbert Hansen, in 1993
"I'm bitter about it," says Barnes' surviving partner, Gilbert Hansen, himself HIV-negative. "He was down to 87 pounds when he died. He couldn't eat. Nausea . . . well, you know that story. When he had regular marijuana, we got him up to 156 pounds at one point. But he had no marijuana available at the end. Anything we could have gotten for him we simply couldn't afford. So he, thanks to the government, actually died of starvation. If you can imagine a five-foot eight-inch skeleton, that was Jim at the end."
WHAT IS A.I.D.S.?The AIDS epidemic is unquestionably one of the great tragedies of the late 20th century. In the USA alone, it has struck 340,000 people since 1981, and nearly 205,000 have died. According to the federal Centers for Disease Control (CDC), it is now the number-one killer of black men between the ages of 25 and 44, and near the top of the list for all men in that age range. It is the fourth-leading cause of death of women of the same age.
Still, for all the press that has been devoted to it during the past several years, many of us still don't really know what AIDS is. In simplest terms, AIDS is an umbrella name given to 30 separate conditions when they occur in someone who has tested positive for HIV. These are mostly "opportunistic infections" that prey on weakened immune systems. In the USA, the leading AIDS killers include pneumocystis carinii pneumonia (PCP), tuberculosis, Kaposi's sarcoma (a form of cancer) and a microbial infection called MAC.
A person is defined as HIV-positive when a blood test indicates the presence of antibodies for HIV, one of a number of generally innocuous viruses called retroviruses. The CDC estimates that there are currently over one million people in the USA who are HIV-positive. Once thought to be limited to intravenous drug users and fast-track gay men, it is increasingly present in the heterosexual population as well. Additionally, it is estimated that as many as 75% of all hemophiliacs over the age of 10 are HIV-positive, the result of receiving tainted blood products prior to the advent of routine screening for HIV.
A diagnosis of HIV+ changes to a diagnosis of AIDS when a patient either contracts one of the 30 AIDS diseases or when his or her T-cell count - representing the number of healthy immune cells the patient has - falls below 200 (normal range is 800-1200). While most people believe that testing HIV-positive is a death sentence, the CDC estimates that a healthy person testing HIV positive can anticipate a life span of 10-plus years. And even that is changing. Many people have already reached that mark and have not yet exhibited any symptoms of AIDS. Complicating current thinking is the fact that a number of deaths from conditions diagnosed as AIDS have occurred in people who are HIV-negative, a syndrome commonly called "HIV-negative AIDS."
The politics surrounding the epidemic are as perplexing as the epidemic itself. For years the USA had a president, Ronald Reagan, who would not even say the word AIDS, much less commit sufficient funding for research on it. On the other hand, the private sector worked furiously to find a cure, and by the time the government could no longer avoid the topic, the pharmaceutical company Burroughs-Wellcome had developed the antiretroviral drug AZT. Initially thought to be a sort of magic bullet, it was recommended to nearly everyone who was HIV-positive, whether or not they were exhibiting symptoms. Unfortunately, AZT's side effects include wreaking havoc on the immune system, constant nausea, body aches, depression and, in some people, an inability to keep food down. More recent drugs in the same class - ddI, developed by the Bristol-Myers Squibb Company, and HIVID, developed by Hoffman-LaRoche - produce similarly debilitating side effects. Several years of monitoring patients who have used antiretroviral therapies have changed a number of people's opinion about their effectiveness. While many AIDS specialists still believe that they prolong the time-frame between an HIV+ diagnosis and actually getting AIDS, many others think that because of their toxic nature, they actually hasten the onset of AIDS. Some go so far as to suggest they cause AIDS by destroying the body's immune system. In addition to the antiretroviral therapies, many doctors recommend the use of prophylactic drugs, such as Bactrim, a powerful antibiotic, to stave off such opportunistic infections as PCP, while others suggest that long-term antibiotic use interferes with ability to metabolize food, weakens the immune system and decreases resistance to opportunistic infections.
In other words, experts abound, but no one has the definitive answer. After all the labor that has gone into AIDS research - Nobel Prize winner Kary Mullis describes it as the population of "a small city" - only one thing seems really clear: nutrition helps. Most of the organisms that cause the diseases under the AIDS umbrella are common, but only gain a foothold in people with compromised immune systems. Therefore maintaining strength through a healthy diet and exercise appears to be one of the keys for prolonging life. It's here that marijuana plays one of its key roles as an adjunct therapy for people with AIDS.
MARIJUANA AS A.I.D.S. TREATMENTGregg Scott, who tested positive for HIV in 1987, sees marijuana as a vital part of his treatment.
"My story actually begins with someone else's," he said recently. "I watched a friend of mine, after he was told he was HIV-positive, give up all the things he enjoyed. He was a heavy drinker and he gave up drinking and he got healthier. He was a smoker and he gave up cigarettes and got healthier. But then he gave up the marijuana and we noticed an immediate change. He stopped eating, was put on AZT, and the next thing you know he was losing weight.
"When I saw this I realized that marijuana would play an important role in my therapy as my disease progressed. It's a key factor for me in terms of stress reduction, pain relief, eliminating nausea, and it gives me some degree of appetite. In fact, you could say I've devoted myself to smoking marijuana and eating good healthy food. And I'm convinced that's what's keeping me alive at this point. I'm pretty healthy for someone with no immune system left. I just take a hit and feel immediately better."
Patrice (last name confidential) is a 36-year-old Colorado woman, who was diagnosed HIV+ nearly 10 years ago and as an AIDS patient more than seven years ago. Her T-cells dropped to zero. She agrees with Scott on marijuana's importance. "I avoid their Babylon therapies, smoke marijuana every day to maintain my appetite and eat wholesome food. And if I feel low, I use natural herbs. The doctors just look at me, shake their heads and say `We don't know why you're the way you are, but whatever you're doing, just keep doing it.' "
But marijuana's benefit to the AIDS patient limited to its usefulness in weight maintenance. As AIDS progresses and the medical therapies utilized intensify, marijuana also provides patients with help in easing joint and muscle pain and reducing the stomach cramps associated with morphine use.
Additionally, marijuana's use has been known to eliminate the drug-induced stupor suffered by many AIDS patients during the end stages of the disease - which is often misdiagnosed, particularly in hospital settings, as AIDS-related "dementia." Two of the known cases of misdiagnosed dementia occurred with two of the four AIDS patients to ever receive federal marijuana: Steve Smith and Barbra Jenks. In 1988, Smith was found by his doctor lying in a fetal position in the psycho ward of an Oklahoma hospital, where he was put when another doctor thought he was suffering from dementia. Smith's doctor removed him from the hospital, took him for a car ride and gave him a joint. Two hours later he was clear-headed and mowing his lawn.
In Barbra's case, shortly before Christmas in 1992 her doctor told visitors she was suffering from dementia. At the time she had stopped eating, could no longer speak, could barely recognize her closest friends and was constantly drooling. Her husband, Kenny, brought her home, gave her a joint, made her dinner - which she ate - and put her to bed. The following morning she was speaking English again, and two days later she was riding a bicycle and doing her household chores. In both cases, the apparent dementia was probably the result of a combination of extremely powerful and toxic medications that left the patients near-vegetables. Following his time in the psycho ward, Steve Smith lived a productive life for more than a year before succumbing to AIDS. Barbra lived for three months following her dementia misdiagnosis.
Unfortunately, despite a mountain of testimonial evidence to marijuana's effectiveness as a therapy for HIV and AIDS patients, few doctors will go on record supporting it - though many confidentially agree it may be vital in their patients' long-term care.
One who is public, Dr. Douglas Ward, an AIDS specialist in the Washington area, says that many of his patients smoke. "I would prefer they use an approved antinausea medication, but if they have side effects or if marijuana is simply more effective, then that's fine with me." Asked to assess its effectiveness, Dr. Ward says that "I think it's individual among patients, but anecdotally it appears very effective, particularly for the control of nausea most commonly related to the multiple medications these people are on."
Not everyone who might be expected to jump on the marijuana-as-therapy wagon does, however. Less than four years ago, at a meeting of the AIDS Coalition to Unleash Power (ACT UP) in New York, longtime marijuana dealer and activist Dennis Peron - who had recently lost his lover to AIDS - was alternately ignored and jeered by most of the crowd for saying that marijuana could be good medicine for the relief of their pain, depression and nausea. Two years later, when he returned with San Francisco AIDS caregiver Brownie Mary Rathbun - who told the crowd about the effects her cannabis brownies had on AIDS sufferers - the reception was warmer, but still skeptical.
Part of the reason for the skepticism, even in a group like ACT UP, is a fear that calling for marijuana as medicine will result in people with AIDS (PWAs) being used by marijuana activists for their own agenda. Too, many continue to cling to unfounded fears that marijuana can have a deleterious effect on the immune system, an old allegation that has never been borne out by research. But others, like ACT UP activist George Carter, say that while marijuana has its upside, it has its downside for AIDS patients as well. "The major areas where marijuana seems to have a major benefit are for the nausea associated with chemotherapy, which is old news, and for appetite stimulation. But the downside of marijuana smoking is that smoking anything probably isn't good for people who are susceptible to lung infections. So I suggest that people consider baking it in brownies or drinking it as a tea. A waterpipe is another approach."
THE BUREAUCRATIC BOTTLENECKA protocol to study marijuana's effectiveness as a treatment for AIDS patients - using waterpipes - is currently making its way through the labyrinth of bureaucracy at the Food and Drug Administration under the direction of Dr. Donald Abrams, assistant director of the AIDS program at San Francisco General Hospital and professor of medicine at the University of San Francisco. While Abrams isn't certain that marijuana helps AIDS patients, he has heard enough anecdotal evidence to want to investigate.
Abrams designed and submitted a protocol for the study to the federal government. Rick Doblin of the Multidisciplinary Association for Psychedelic Studies (MAPS) lined up a Dutch marijuana-growing firm to be the suppliers. "We plan to do this study at San Francisco General Hospital with collaboration from several others in the medical profession, so that we can do sophisticated body-composition measurements to see if people really do gain weight, and whether it's muscle mass and not body fat or water. We also plan to look at the immune status of the patients and the effects of marijuana on their lungs."
Unfortunately, while Abrams' protocol was approved by the FDA, the Dutch government refused to allow the export of marijuana for the study until the US government approved its importation - and the US wouldn't approve its importation until the Dutch approved its export. Which meant Abrams had to rework his protocol, this time asking the National Institute of Drug Abuse for access to the marijuana grown on the federal pot farm in Mississippi. He has not yet heard whether NIDA will approve his request, much less whether the DEA will actually allow it to be shipped. In the midst of an epidemic, a doctor with impeccable credentials has not been able to get a simple study off the ground in more than two years because of bureaucratic interference.
GRASS-ROOTS RESISTANCENot everyone is willing to wait until the feds approve studies, however. During the past two years, more than two dozen Cannabis Buyers Clubs have sprung up around the nation, making marijuana available to AIDS patients and others who need it medically. Most of the clubs are of very limited size and work by either receiving handouts - generally shake - from growers, or by purchasing ounces and sharing them. Joe Barker has been HIV+ for nearly 10 years and has smoked cannabis for nearly 20. He started a small buyers' club in Charlottesville, VA more than a year ago, which the police allow him to operate. But lack of funds keep him from purchasing more than enough marijuana to serve half a dozen patients.
The Green Cross, a buyers' club run by Joanne McKee on Bainbridge Island in Washington state, is slightly larger, with 23 active members, most of them AIDS patients. The club distributes about 20 ounces of marijuana per month, though McKee says she there is a call for considerably more. "I just don't have enough medicine for everyone. Like all buyers' clubs, we need donations of medicine. These are sick people who need the help." McKee, who uses marijuana to treat a spinal-cord injury she sustained several years ago, says she always shared her personal marijuana with those in need. She started the Green Cross after watching an NBC television special about buyers' clubs and finding out that there was one in Seattle. "I went looking for it but couldn't find it, so I left my name and number around in case somebody could find it for me, and then I started getting calls from people saying they were starving to death and could I help them? It just sort of took off from there."
Activist Dennis Peron at the San Francisco Cannabis Buyer's Club
The largest known buyers' club in the USA is in San Francisco. Opened nearly two years ago by Dennis Peron and Brownie Mary Rathbun, it has 1,400 members and is growing weekly. During a recent call, the background noise at the club sounded more like a party than a place where most of the people are HIV+ or suffering from AIDS.
"This is a story of strength, community and understanding," said Peron on the other end of the line. "Of course there's laughter. We're trying to make people happy, to lift their spirits. The marijuana we sell - and give away to those who can't afford it - is just part of the therapy. Should we dwell on the two or three clients that die every week or the three dozen new clients who need this medicine?"
Dr. Tod Mikuriya, a Bay Area psychiatrist, has begun interviewing patients at the San Francisco club, both on their medical histories and their marijuana use. "I've interviewed 51 patients so far," says Mikuriya, "ranging in age from their 20s to their 60s. The most common AIDS-related symptoms treated by marijuana are nausea and loss of appetite, but high up there is depression too, which is very important. Some use it for pain relief from various types of chronic inflammatory phenomena attendant with AIDS conditions. Some are even using it for relief of dementia, inflammation of brain tissue or lymph nodes covering the brain. Some also use it to energize themselves to help get through the day; others use it to withdraw, shut down and sleep."
But while the buyers' clubs have thus far been left alone by the police and the DEA, individuals who grow their own remain at risk. Mark Tildon, a 30-year-old wheelchair-bound hemophiliac from Washington state who contracted HIV from contaminated blood products, currently faces a felony charge for growing four marijuana plants. Diagnosed HIV+ in 1988, Tildon had already discovered marijuana's medical benefits for relief of spasms in his hips.
"As soon as I was diagnosed HIV+, I was put on AZT. It almost killed me. I was only on it for about two weeks, but I still lost my appetite. The thing with HIV is you have the same loss of appetite whether you're on AZT or not. If I didn't have cannabis I would have starved to death a long time ago."
Mark Tildon, HIV+ wheelchair-bound hemophiliac,
faces felony charges for growing four marijuana plants.
Lucky enough to have known growers most of his life, it wasn't until recently that Tildon began to grow his own to insure a steady supply.
"Cannabis is not a cure-all, but it sure seems like it sometimes. It gets me through the day instead of making me want to check out early like a lot of people do.
"You know," he laughs, "I take 255 pills every two weeks for pain and spasms, but the only thing that really works is the cannabis. I just think it's kind of funny that they've been shoving these pills down my throat all these years and then I come along and find something that works better and is natural."
He now faces felony charges for his growing efforts.
"Each time the police come, they make jokes about my green thumb. I don't even feel like getting out of bed without marijuana. I just hurt too much. I get sore from wheeling the chair, I can't eat. I have to have marijuana, but with the police harassment I've been getting, it's getting pretty discouraging."
Tildon is not alone in facing police harassment. Sam Skipper, a San Diego PWA who made news last year when he was acquitted of marijuana-manufacturing charges, was back in jail on probation violation when High Times tried to contact him for this story. And Barbara Sweeney, a Marin County, California PWA, recently had her two plants confiscated by police, despite a local ordinance ordering police to leave legitimate medical-marijuana users alone. Across the country, thousands are facing similar situations. To get the medicine they need, they must risk jail time.
THOSE LEFT BEHINDDespite the risk, more PWAs are realizing the value of marijuana in their therapy. But not everyone is getting the word. Most members of buyers' clubs and AIDS support groups are educated, and their circles pass information. Not so on the street. Steven Smith, who runs a 100-member buyers club in Washington, says, "Most of the buyers' clubs are cottage industries, and most of the people we serve are referrals from physicians. Unfortunately, street people who are getting city-hospital care are not being treated by doctors who recommend those people to buyers' clubs."
Keith Cylar of Housing Works, the AIDS housing group that also provides social services and needle exchange to New York City homeless and addicts, agrees that street people are not getting the information. "People should have as much information about this disease as possible, and since the government pays outreach workers to get to these people, there is no reason they should not be able to provide information about AIDS and HIV and possible treatments, including marijuana and nutrition. That they don't, I think, is a reflection of the government's attitude towards these people."
There is little hope that that attitude will change any time soon. The government's position on marijuana as medicine today is the same as Reagan's was on AIDS. Silence is the way of the walk. And silence about marijuana's effectiveness in treating the side effects of antiviral therapies, prophylactic antibiotics, and the actual diseases of AIDS is killing people.
CHARLIE'S RESPONSE TO POTIn the end, AIDS and its treatments should have nothing to do with politics and positions. The epidemic is about people. About friends dying too young, and horribly. If marijuana can alleviate some of their pain, there is no excuse, including drug wars and pharmaceutical company investments, that should stand in the way of getting it to people.
One of the most simple but dramatic demonstrations of marijuana's effectiveness I've ever personally witnessed occurred just outside the High Times offices. Charlie (not his real name), an original member of the marijuana-activist group Freedom Fighters, used to work up at HT occasionally and played with abandon on our softball team. You would never know he was living with AIDS.
Two years ago he stopped coming around as often, and when he did he looked progressively worse. He was on intensive AZT therapy, which left him spending a good deal of time in a local veterans' hospital.
One day last year, after a long absence, he showed up at the office. He'd just come from 15 days of treatment, and he looked awful. He was losing weight dramatically, but was simultaneously puffed up like a steroid caricature, and his neck was all black and blue from intravenous needles. He moved slowly, couldn't remember the names of many of the people he'd worked alongside and was too tired to walk more than 20 yards without resting.
We asked him if there was anything we could do. He said he wanted a joint, that he couldn't eat or drink, couldn't swallow and hurt all over. Someone had one, and we went outside where he smoked half of it. Within a minute he broke into a smile. "How's the team this year?" he asked. Fine, he was told. Suddenly he laughed a little. "I feel like a human for the first time in weeks," he said. "I feel like I just stepped out of a fog. Can we go upstairs again? I'm thirsty."
Charlie was dead a few weeks later. So are many of the people interviewed for this story. Most were already very ill. But most found relief, and quality of life for the time they had left, from marijuana - whether it was from eating better, relief from pain, easing their depression or just improving their outlook. That it remains forbidden is obscene. - P.G.
[End]Reprinted without permission from High Times (though we did send them a message about it). For subscription or other information e-mail firstname.lastname@example.org.
Marijuana & AIDS Wasting Syndrome Study, from the New Year 1996 MAPS (Multidisciplinary Association For Psychedelic Studies) Newsletter.
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