Being Alive Newsletter, Being Alive/Los Angeles - July 1993
John A. Johnson

There's been plenty written about the Concorde study elsewhere. Personally, the argument is a moot point. I can imagine that next year in Japan someone will present a study on disease progression in young men who seroconverted at Madonna concerts in 1987, but will it mean anything? I have been infected with the virus since at least 1981; I started AZT in 1986 and took it at various doses until last year when it finally became too toxic for me to continue. I have not had much luck with the other nucleosides. The AZT extension on my life has passed. The two years is not enough. It's not enough for me nor is it enough for anyone whether you were infected in 1978 or in a moment of wild careless abandon last night.

About the time AZT was released, prophylactics against PCP with pentamidine and later with Bactrim were developed. This has been followed by prophylaxis against several other OIs. These drugs have done more to extend life expectancy than any of the antivirals and have antiviral properties of their own. More attention should be paid to the treatment of OIs by scientists and physicians. Cease the endless arguments about AZT and develop more effective antivirals.

Bristol-Myers had a lunch/press conference to hype combination therapy. I started ddI last October and did not have an easy time with it. I was constantly nauseated and felt like I was going to have a seizure on several occasions. I worked my way up to full dose in February. In March, while waiting in line to renew my drivers license at the DMV, I had a grand mal seizure. (Needless to say, my license was suspended.) In the course of tests to determine what had caused the seizure, one of my neurologists mentioned that she had heard of several cases of unexplained seizures in persons using ddI. I took this opportunity in Berlin to ask the spokesperson if they had any reported cases of seizures in people using ddI. A spokesperson said she had heard of none but to see her after the press conference. I did, and with no one else around she told me there had been a number of unexplained seizures in the core study group of people using ddI. Anyone reading this article know of any incidents of seizure in ddI users? You don't have to be a professional provider or pharmaceutical company PR person to reply.

Activism seems to be dead. All the ACT-UPs worldwide seem to have calmed down and been co-opted by the establishment. Demonstrations lacked any sense of urgency and were unfocused. Trashing a Christian information booth that was part of the AIDS Information Switzerland exhibit was much like trashing All Saints in Pasadena. Not all Christians are of the Fallwell type. Demonstrations should have been done against Wellcome and Bristol Myers and the other big drug companies but actions against them were less than attention grabbing and besides the corporations PR departments were passing out large grants to NGOs as community based organizations were referred to at the conference.

The International AIDS Organization had a busy year changing it's name to Global Network of People Living with HIV/AIDS or GNP and postponing a convention scheduled for Mexico several times. It will now be held some time in September. I still think the organization's chief aim is to limit US participation in it. One positive emerging out of the organization's meetings was the establishment of a central computer network for newsletters to exchange AIDS treatment news and, it is hoped, to confirm or deny rumors.

This year's accommodations for PWAs were the worst I have yet to come across at an AIDS conference. The space set aside to take naps and to do infusions was perfect, quiet and free of plotting activists. The victims' lounge was a narrow room crowded and smoky. It should have been a place for quiet and to grab a quick bite to eat. The food was cold sandwiches and didn't seem to comply with many people's diet. I eat almost anything because almost everything upsets my stomach. I still think taking the cucumbers out would have made the cheese sandwiches more digestible. I didn't make myself very popular by objecting to the large number of HIV negatives hanging out in what was supposed to have been our shelter. Many still don't want their status known The space was just too small, and it was certainly too small for activists to hold meetings to discuss that day's inactivity. The Lord Mayor of Berlin's wife finally came around and arranged for additional space and chairs with cushions. Hot meals were provided and even the vegetarians were satisfied.

Berlin is a fascinating city. Even though east and west have been joined into one city, both have retained their own cultural entities; there are two symphonies, operas, ballets, and national theatres. There is some kind of cultural event every night and tickets can always be obtained. Two events connected to the conference were held. The first was Verdi's Requiem performed at the Waldbuhne, Berlin's outdoor amphitheater. It ends with the words "In the end we all die." The Berlin Symphony came to the ICC to perform. Last minute changes left a rather sedate concert because all the Wagner was cancelled. (Jessye Norman wasn't up to Isolde's Liebestot that night.)

Berlin night life is fun if you can stay awake late enough for it. I was too tired from attending the conference or looking for bathrooms the first half of my stay, but I did enjoy touring the city with Malte Krugger, with whom I also shared accommodations. He has family in both East and West Berlin. Towards the end of my stay I was finally able to stay up long enough to go out and enjoy myself. Many of Berlin's gay bars seem to have a strict dress code; you don't see yuppie types in leather bars and doormen enforce this at clubs. I met Gilbert at Metropol, an old theatre turned into a disco, where an AIDS benefit was being held. Although we all paid the same admission, areas were closed off and reserved for some people. I don't know what it took to get into these areas but having AIDS was not one of them. It was too smoky for the two us anyway so we left without getting much for our money.

The conference was a disappointment for medical news. It seems to me we have taken a few steps backward. Maybe there will be good news next year. My favorite part of the trip occurred in Paris on my way to Berlin. Our flight out of LAX had been cancelled and we had been rerouted through Paris via Air France. At the airport in Paris, I had become separated from the others. I heard an announcement over the PA for John Johnson to report to Lufthansa; a flight was being held for me. After locating the right gate and down the ramp and into our seats, I could see the angry looks on our fellow passengers' faces. What's the matter with them, I thought, haven't they seen important people before? Besides, the flight was held for 20 minutes because we were late, not because we were getting expensive haircuts.
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