At Brisbane’s ‘Music By The Sea’ concert Saturday 6th Oct 2012, Acacia Quartet will perform two excerpts from my String Quartet.
In addition to playing Mark and Adrian are her sons, they will give the premiere of Dextran Man, Part 1, another section from my memoir of my AIDS activist days.
Update July 2015: The following recording is taken from the complete AIDS Memoir Quartet recording made by Acacia Quartet and Vexations840. You can hear it if you are logged into Spotify.
‘Dextran Man’ was the underground nickname of Jim Corti, the extraordinary Los Angeles man who supplied me with the bootleg AIDS drugs that I imported into Australia. I’ve thought many times a movie should be made of his story and how thousands of people owe their lives to him for what he did in the late 1980s and early 1990s.
Back then the only drug officially approved to treat AIDS was AZT. But it was only limitedly effective. Some people never responded to it, while in others who did respond, the virus quickly became resistant, rendering the drug useless again.
All hope was on new drugs being created by the pharmaceutical industry.
Jim was a trained nurse who started a drug-smuggling operation in the mid-1980s to give Americans various medications from Tijuana, Tokyo and Europe that were rumoured to fight HIV infection. These drugs – Compound Q, dextran sulfate, ribavirin – were later proven ineffective, but the experience made Jim operationally ready for the moment when an efficacious drug became known.
The drug that caught everyone’s attention was ddC. Not only did it show promise in clinical trials but, unlike most drugs, it was also quite easy to make. In fact when AIDS researchers suggested it as a clinical antiretroviral, I recognised it right away at the nucleoside inhibitor we used in our molecular biology lab at my college in Wisconsin. And Wisconsin was where Jim initially tried to buy the raw ddC to be made into capsules for human use, though he turned elsewhere when the chemical company became suspicious that someone was buying such large quantities.
Obtaining the industrial chemical and having it mixed and capsuled for human consumption was the most illegal thing Jim had ever done – a clear violation of the law in so many ways (patent infringement, unauthorised supply of a pharmaceutical drug, etc.) In fact, Jim constantly shifted his operation around Southern California, Mexico and Germany as supplies dried up or labs or couriers got cold feet.
Jim had no alternative but to manufacture ddC capsules because of two chicken-and-egg reasons: the pharmaceutical company that controlled the patent, Hoffmann La Roche, was not willing to expand the number of patients in its clinical trials, and the government regulatory bodies (Food and Drug Administration in the USA and Therapeutic Goods Administration in Australia) were unwilling to allow expanded access to an experimental drug, no matter how promising. Indeed the furore around ddC made it the drug that proved the flashpoint for both the pharmaceutical industry and the government regulators to change their attitude towards life-threatening illnesses – a story for another post – but meanwhile Jim was breaking the law. During my dealings with him, it was apparent that he felt forced to do what he was doing and was just waiting for the moment his exit strategy would be triggered, the strategy he so clearly entered the game with – the minute either or both pharmaceutical industry and the government regulators allowed access to ddC, he would quit.
I knew none of this when I started running the buyers club for the AIDS Council of NSW in Sydney. The AIDS Council had initially gotten bootleg ddC from an organisation called the PWA Health Group in New York. But they soon said that the quantity we were after for Australia was so large that they had trouble fulfilling it, because they had their own increasing number of sick clients to look after. This was mid-1991 after all, when everything about AIDS seemed only to accelerate.
So I said, I need to get in touch with your supplier. I persuaded Wayne Kawadler at PWA Health Group to divulge his identity – and that was the first time I heard Jim’s name. I called Jim, and I somehow gained Jim’s trust during the phone conversation because he agreed to send me ddC in Australia. I admit I sometimes didn’t fully appreciate the degree of his trust because, a year or so into our friendship and after a careless complacency had set in on my part, I had an assistant get in touch with Jim without introducing him first. Jim sent me a fax right away, suspicious, saying ‘Who is this guy? I only want to deal with you.’ I felt so stupid. I reminded myself that he was risking jail and worse every moment he was doing this.
So the several hundred people in Australia who got ddC from me in 1991-92 couldn’t know this because I had to protect him, but they have Jim, not me, to thank.
Sometime in late 1991 as I recall The Wall Street Journal ran an article that ‘outed’ Jim as a major courier in the illicit ddC underground, but didn’t actually say he was the manufacturer – as tempting as that revelation would have been to make, even the journalist realized that it would have put thousands of people’s lives at risk, if the article resulted in Jim being hunted down and stopped.
As it turned out, ddC was only slightly better than AZT. It extended life, rather than saved it – but for some, this was enough: they were still alive when the protease inhibitors – the first drugs that could be said to save lives – became available in about 1995.
Though Jim would have been far too scientific to agree and probably would have scoffed at me had he known, I thought of my friend as a kind of healer, a shaman, a rainmaker.
What he gave wasn’t just drugs. It was also hope. I remember one time when we tested a batch of underground ddC and the drug purity wasn’t ideal – an inevitable consequence of running secret manufacturing plants – and we decided to give the pills out anyway, because it was better than nothing, and because with every pill a patient swallowed their hopes were raised, and we needed hopes to be as high as they could be, because hope bought us all time.
For all our efforts, some people lived longer because of the ddC, and others died despite being on it. This mixed result shows up as a frustration in this music I sketched at that time. The metaphor that showed up is of the whole earth, rich but parched, thirsting for rain. The rain dance is joyous but also desperate and it doesn’t completely work; the precious rain when it comes – well, there’s just so little of it. ‘Awanibiisaa’, as the Wisconsin Ojibwe put it – it is only sprinkling.
What matters is that we all tried. Not just Jim and me, but the patients who made the brave decision to risk an underground drug than wait for the official medical system to deliver rain. The medical system did change for the better, but that’s a story for another time, and I tell some of that in Part 2 (to come).
Footnote: while no movie yet is being made about Jim, I just heard there’s a new Matthew McConaughey movie called The Dallas Buyers’ Club about the AIDS drug underground in that city for release in 2013. This is nearly 30 years later, but it’s good how stories of courage never grow old.
{ 1 trackback }