AIDS & Medical Marijuana

Dennis Peron is the Rosa Parks of the medical marijuana movement, the one who would not move to the back of the bus. Dennis refused to accept that anybody — any cop or DA or judge — could tell him he didn’t have a right to smoke marijuana. “And the right to smoke it means the right to get it,” he would argue, “which means people have to have the right to grow it and sell it.”

Dennis was a Vietnam vet. During the Tet offensive in February, 1968, he had stacked body bags and come out as a gay man. Back in San Francisco at the start of the '70s he said, “I want to dedicate my life to world peace.” A hippie who meant it all the way. He believed that marijuana was inherently an anti-war drug due to its relaxing effect on the individual and the sharing ritual associated with its use. In the ’70s and ’80s he was busted for selling pot more than a dozen times. During a raid in 1977 an SFPD that shattered his thigh. And after every bust he would resume selling. How the narcs hated him!

Dennis did not fancy being an outlaw, so after the 1977 bust he drafted and collected signatures for an initiative — aptly named ‘W’ — whereby the people of San Francisco instructed their law enforcement officials not to press any marijuana-related charges. It carried, and Mayor George Moscone notified the police that possession of an ounce or less should henceforth be ignored.

As the '80s ended, Dennis's longtime companion Jonathan West was dying of AIDS. “Jonathan was taking many prescribed drugs,” Dennis explained, “and there were severe side effects, from nausea to loss of appetite. Marijuana was the only drug that eased his pain and restored his appetite and gave him some moments of dignity in that last year. And of course I had hundreds of friends with AIDS who relied on marijuana for the same reasons: appetite, relief from nausea, relief from pain, to be able to sleep.”

On the night of January 27, 1990, a squad of SFPD narcotics officers raided the house on 17th Street where Dennis was taking care of Jonathan. This is a mix of his recollections: "The police broke down my door, came storming in and found four ounces of Thai weed in the house… Jonathan was very thin and he had KS [Kaposi’s Sarcoma] lesions on his face. The cops made AIDS jokes and they made a big production of putting on their rubber gloves before tearing up the place. When they saw the picture of me and Harvey [Milk, the supervisor who had been assassinated] they went into a harangue about 'that fag.' They put everyone on the floor including Jonathan — they had him spread-eagled on the floor. Well, that was their undoing, because Jonathan told the district attorney and the narcs that the four ounces was his, for medicinal purposes, because he was going to chemotherapy and it helped him with his nausea and helped him in other ways. That took away their 'marijuana-for-sale' basis against me. They tried to link me to 27 pounds found in another house, but had no proof."

Dennis said he recognized one of the raiders as a former bodyguard for Mayor George Moscone (who had also been assassinated). “I told him, ‘Great job you did protecting George.’" 

A vision of the cannabis buyers club came to him later that night, Dennis says, as he was lying on a cement slab at the Mission Station. “The cops were coming by and banging with their nightsticks and yelling, ‘Hey, Peron, we’re gonna get you!’ And I was thinking about Jonathan all alone and without any marijuana. And I was thinking ‘Wouldn’t it be great if there was a place where he could go and be among friends?’ Jonathan had the KS on his face and I was thinking, ‘He wouldn’t be ashamed here.’ And the place in my dream was the buyers club.”

Jonathan West died in September 1990, soon after testifying at Dennis's hearing that the confiscated pot belonged to him. At the end he was down to 90 pounds. “Doesn’t that tell you something?” says Dennis. “He lived to testify at my trial and then he let go of life.” 

After Jonathan died, Dennis decided to shift his approach from advocating marijuana legalization to promoting its medical use. In designating his marijuana emporium on Sanchez at Ford Streets a "cannabis buyers club" in the winter of 1990/91, Dennis was tipping his hat to the nearby Healing Alternatives buyers club, which had been established to lower the cost of vitamins, supplements and drugs rumored to slow the progression of the virus (such as AL-721, an Israeli egg-yolk extract that was commercially unavailable in the U.S. and had not been approved by the Food & Drug Administration).

Healing Alternatives was a truly non-profit organization that provided products at wholesale prices not just to HIV-positive men but to thousands of Castro district residents determined to bolster their resistance. At the SFCBC, Dennis provided discounts as needed to AIDS patients, but would not abandon the buy-low, sell-high model he had used for years as a dealer. He saw the club as part of an entourage of caregivers — Healing Alternatives providing vitamins, Project Open Hand providing food, the SFCBC providing marijuana in a setting where it could be used and shared.

Dennis's longtime ally, Tod Mikuriya, MD, wrote an admissions protocol for the SFCBC and interviewed members for a paper, “Cannabis Medicinal Uses at a Buyers Club” that never got published in the medical literature. The historically significant manuscript is part of the Mikuriya collection at the National Library of Medicine, and can be found online here.

While 41 of the 57 patients Mikuriya interviewed were HIV+ (and 16 "presumed HIV-"), his questionnaire documented that cannabis was being used to treat a wide range of other problems, including insomnia, depression, anxiety, panic attacks, arthritis, pain, and alcoholism. His study would provide support for the sentence in Proposition 215 authorizing physicians to approve marijuana use in treating any condition for which it provides relief.

Rick Gerharter of the Bay Area Reporter photographed Mikuriya conducting interviews — with help from Dennis and SFCBC staffer Mary Rathbun (“Brownie Mary”) — in January, 1994.

Response to the AIDS epidemic laid the groundwork for the medical marijuana movement in other ways…

The Compound Q Saga

Today, with protease inhibitors greatly extending the lives of HIV+ people, it is hard to convey the level of morbid fear, desperate hope, and factual confusion (could the virus be transmitted by saliva?) that prevailed in the Castro as the epidemic took its relentless toll. People with AIDS, as individual citizens and in groups such as Project Inform and Act-Up, demanded with increasing urgency that the FDA accelerate research and allow access to unapproved drugs.

The drug that got people's hopes up most dramatically in this period was "Compound Q," a Chinese cucumber extract that researchers at SF General Hospital confirmed could kill the virus in the test tube. In May 1989 a clinical trial led by Paul Volberding, MD, was begun at SFGH. That very month, activists obtained a large quantity of Compound Q from China, where it was used as an abortifacent and to treat uterine cancer. They were in a hurry to conduct a trial that would not require people with AIDS to be treated with a placebo in a control group. The Compound Q saga is largely forgotten — so many of the protagonists are no longer with us — but this being Pride Month, we'll recount it, starting with a report published August 1989 in Synapse,the UCSF weekly. Author Kim Grahl, then a second-year medical student, is now an MD practicing in Chicago.

Meetin' at the Buildin'

In September 1989 Project Inform organized a meeting at the Women's Building in San Francisco to bring the community up to speed on the new compound that people were pinning their hopes on. A standing-room-only crowd "almost all young men, some visibly ill, all intensely interested" filled the large auditorium and its balcony to hear Dr. Larry Waites explain: 

"Compound Q, which has been known in its present form in China for about 20 years, had been known in the US for about 2.5 years. The trials at SFGH started this summer and it was estimated that they were going to need 9 to 12 months to complete. This lengthy approval process frustrated patients and physicians. Very frequently Al and Marty and I would be together talking about early intervention and treatment. In March we realized that there were at least hundreds of doses of the drug coming into the Bay Area. We perceived an impending crisis. It was obvious that the phase 1 trial planned at SF General couldn't possibly answer the questions about the safety and efficacy of compound Q in time to either avert or guide community use. Martin asked us if a program could be devised that was faster and yet as safe as the FDA approved trial. The dilemma was: should we wait passively for people to treat themselves. literally in their kitchens, and patch up things when they went wrong, or to take a more active stance and set up a carefully controlled monitoring situation to answer the questions about the safety and efficacy of this drug. The decision seemed obvious then and it seems obvious now that we really had to act. 

"The next two months were spent in literature research, consulting Chinese physicians and even Genelabs and Mike McGrath at SFGH to write the protocol. We knew that the Chinese used 1 to 2 vials - 1.2 milligrams per vial - to safely induce abortions. We knew that they used a vial per day for five days to treat cancer. We knew that in the test tube studies, cell death occurred for up to four days after the drug was given. That meant that there would be period of relative immune suppression after the drug was given -because even an infected cell may have some function and may help to fight infection. So if you kill off all those infected cells, you would have a relatively suppressed immune system. We calculated that it would take at least three doses or maybe more to possibly kill all the infected tcells and macrophages. Thus we decided to treat people once a week for three doses, to start at 1.2 milligrams - 17 micrograms per kilo. We decided on very intensive monitoring of patients. 

"Our first three patients were our very sickest patients. they'd exhausted all other avenues of treatment. We saw them just about every day. The protocol called for following patients overnight after they got the infusion, seeing patients the day after the infusion, then each week of the first month, then monthly thereafter. We had very extensive lab work consisting of complete blood counts, panels to check liver and kidney function, urnialyses, blood work done weekly, then monthly, as well as checking p24 antigens and antibodies. Cost of lab work alone for first 6 weeks was over $42,000. 

"Was this all legal? Our lawyers said yes. We now have 7 lawyers. The FDA does not interfere in the right of patients to obtain medicines from any country for their personal use, nor does it interfere in the doctor patient relationship. Our treatment program differed only in its intensity of monitoring and the lengthy informed consent process, which started three days before the infusion."

Compound Q failed. The unauthorized trial showed that the cucumber extract did not, alas, fend off the AIDS virus in the body. But the episode focused the gay community critically on the FDA drug approval process, and reminded us, the people —and our rulers— that drug prohibition could not be enforced on those who felt they had nothing to lose. By the start of the 1990s, increasingly large demonstrations and street actions* signaled that the demand for AIDS support services (the virus had pushed thousands into poverty) and research leading to effective treatment had become a mass movement.

Including a march on Trump Tower in New York, staged by ACT-UP on Halloween, 1989.  "The Trump Tower protest was organized by ACT UP’s Housing Committee, which hoped to draw attention to the lack of housing for homeless people with AIDS," wrote Stephen Vider in Slate. "Through the rain, protesters maintained a picket line, carrying a range of printed and handmade signs: 'Silence Equals Death,'  'In NYC 10,000 Homeless PWAs, 64 Beds,' 'Money For AIDS Not For Malls.' Two participants hung a banner, '10,000 Homeless With AIDS,' from the windows across the street."

A Not-so-Proud Memory

It's Pride month, but we owe it to history to recall an embarrassing, tragic twist in the relationship between AIDS activism and the medical marijuana movement. 

By 1998, ACT-UP San Francisco was being led by a small group of men who refused to acknowledge that AIDS was caused by the Human Immunodeficiency Virus. They were desperate, militant, and not interested in treatment because they thought the virus wasn't causing the epidemic. They cited a UC Berkeley molecular biologist, Professor Peter Duesberg, who contended that people were being killed by use of recreational drugs and AZT, an early FDA-approved treatment that turned out  to be ineffective.

Several leaders of ACT-UP San Francisco worked at Dennis Peron's cannabis buyers club, and when the state and federal governments finally succeeded in closing him down in 1998 —as a nuisance!— these staffers knew how to run the operation and knew all the growers. They launched a club of their own further up Market Street —more a sales outlet than a place to socialize— and were soon bringing in $100,000/month. The money from marijuana sales at the ACT-UP club was used to fund a big denialist PR campaign. Denialist literature packets were dispatched to government agencies worldwide, and Thabo Mbeki, the president of South Africa, took the ACT-UP/Duesberg line seriously. The distribution of effective p otease inhibitors in his country was delayed as a result.

The moral of the story is relevant to pot partisans today: Don't totally turn your back on Western Medicine!

That said, the list of FDA-approved drugs that have turned out to be ineffective and/or harmful is mind-blowing. An O'Shaughnessy's article about  FDA reversals will run when we can pay the printer again.  The AIDS denialists were crazed, for  sure, but the abysmal record of the pharmaceutical industry gave their worst paranoid suspicions a germ of plausibility.

PS June 28

No sooner did I write the above than the July Scientific American arrived with a letter by virologist John P. Moore, MD, on the subject of AIDS denialists. Moore attributes an estimated 300,000 deaths worldwide to their influence. Asked for his  source, he explained in an email, "There were two articles published in the peer-reviewed literature sometime around 2005. One was from a group at Harvard Medical School and received fairly wide publicity at the time, the other was from Nicoli Nattrass of the U of Cape Town. Both were quite concordant in their estimates, which were made independently."

"The AIDS denialists are still around," according to Moore. "Their damaging effects have diminished in recent years, but many of them are now active in the 'anti-vaxxer' movement, peddling the lies that compromise vaccine uptake by a significant number of people, with adverse public health outcomes that are all too apparent."

I asked Moore, "Was almost all the impact in South Africa?   It seemed like the denialists made a lot of noise but didn't deter people  from going on the protease inhibitors  when they became available in '96."

He replied: "it’s a highly complex and lengthy topic that can’t easily be summarized on an iPhone email from home. In the developed world the denialists did not affect national policies but did damage individuals who were persuaded to make very poor choices about their health or their children’s health. But in South Africa in the early 2000s the Mbeki administration was persuaded to take some catastrophic policy decisions on drug availability that led to those estimated 300,000 unnecessary deaths. Books on the topic include ones from Nicoli Nattrass, Seth Kalichman, Jon Kay and Michael Specter if a longer version appeals to your reading list."