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Berlin: A Report From the 9th International Conference on AIDS



Berlin: A Report From the 9th International Conference on AIDS


A report written by Robert Rygor on the Ninth International AIDS Conference in Berlin, Germany, and an international meeting of members of the AIDS Coalition to Unleash Power.


AIDS (Disease)
International Conference on AIDS
ACT UP (Organization)


Rygor, Robert




Queens College Department of Special Collections and Archives (New York, N.Y.)



Date Created



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Spatial Coverage

Berlin (Germany)


[page 1]

The Saturday night before Conference week around 75 to 100 ACT UP activists crammed into a horrible room that was part of Berlin's Technical University. It was your typical ACT UP meeting. Aldyn McKean and Corrine from ACT UP Amsterdam facilitated.

"How many people are here from Paris?" About 6 people put their hands up as everyone else applauds.
"How many from London?...From New York?" It goes on till everyone's presence is accounted for.

Sunday morning we're at our first global action. It's organized by ACT UP Frankfurt and it's at the Brandenberg Gate where the Berlin Wall used to be. We unfurl a giant banner that is made to look like the Wall. Then grafitti artists start spray-painting anti-AIDS slogans on the banner as the TV cameras record every move. There was not much chanting but alot of music--not typical of an ACT UP action. It was almost too corny to take when the amplified music blasted the Beatles toon "All You Need Is Love." Still, I liked this action and rated it a B plus even though the speeches were weak and we were too quiet. When I got back to New York an ACT UP member told me he saw me and Andy Velez on CNN holding up the banner!

Ernst Reuter Platz was named after Berlin's first Mayor. The plaza is connected to the main street that runs through the Tiergarten Park, called "June 17th Street" and named in memory of an uprising of workers against Soviet troops that took place on June 17th, 1953--the day I was born. To get to the point--it was the site of our second big action that day. That action involved pounding 5,000 wooden crosses into the grassy lawn and flower beds of Ernst Reuter Platz--known as one of the most spacious and attractive plazas in Europe. We created a huge cemetery.

Later Sunday evening many of us attended the Global Meeting on AIDS organized and facilitated by ACT UP's Eric Sawyer. Jonathan Mann, former head of the World Health Organization's Global Programme on AIDS, called the United Nation's response to the AIDS crisis
[page 2]
"fragmented" and said they had "no strategy".

At this point I'd like to remind my audience that last year at the Global Meeting of the 8th International Conference in Amsterdam, I had proposed a Global Summit of the Seven Industrial Leaders to negatiate a financial plan to prevent the spread and to treat those already infected with AIDS. On World AIDS Day our Global Action Committee picketed the UN and President-Elect Clinton "urged a world-wide effort against AIDS". The day of this report, July 5th, 1993, President Clinton is expected to take part in a Global Summit in Japan. Just when will AIDS be deemed as important as bailing out the Soviet Union or negotiating trade agreements. Do we have to lose half of the world's population before we begin to get our act together in dealing with this pandemic!

At 10:00 AM, Monday morning, the Conference held its opening ceremony with incredibly boring speeches from the head of the European Community, the German Government, someone from the International AIDS Society, the Global Network of People with AIDS and the International AIDS Council. Finally, Aldyn McKean comes to the podium and delivers a fiery speech--"Tear down the wall around AIDS!" ACT UP members distributed thousand of flyers criticizing Hoffman LaRoche and quietly held up signs throughout the hall.

Later Monday I attended a session entitled "AIDS in the Military". There are 6,000 people with AIDS in the U.S. Armed Forces. Then I heard Aldyn speaks on Longterm Survivors. He talked about the possible role that taking prophylactics, diet, exercise, sleep, stress, personality and relationships may play in accounting for longterm survival. But no remark got as much applause as his call for PWAs to keep having sex!

The best moments for me came when I ran into friends I made at the African AIDS Conference last December--Paul, Marie, Tita (ACT UP Cameroon) and Joann Manchester of the International Committee of Women With AIDS. Joann had said that I had been on Cameroon TV so much that after the conference she had toured the country and people in the small tribal villages would say my name when she talked about the conference. I am famous halfway around the world--in the jungles of Africa!

Tuesday, 9:00 AM, June 8th, I greet the press with a packet at a conference on Guantanamo organized by Eric Sawyer and Walt Wilder.
[page 3]
But the real excitement begins when Ellen Bay, Jane Auerbach, Raisi from ACT UP Amsterdam and I meet in the ACT UP workspace to plan an unscheduled appearance at the plenary session where the conference organizers plan to give an award for AIDS research. At a conference at which the dominant mood is one of despair and a feeling we're far off from anything that could even remotely be described as a "cure", it seemed in poor taste to give anyone an award.
By the time we got to the escalator that led to the hall where the plenary session was to take place it was closed--every seat taken. Ellen excitedly told the guard who was blocking our entry--"We're the eight people who are part of the award ceremony and we have to get in." He believed us. We marched in and walked right up to the podium just as the researcher who got the award accepted a big bouquet of flowers. Raisi announced the "Benign Neglect Award" for failure to include women, IVDUs, teenagers and sex workers in clinical trials. Our affinity group of eight then held up "benign neglect" posters and stood on the stage chanting ACT UP, fight back, fight AIDS. Dozens of cameras flashed.

The Concord trials set the tone for this Conference and it was not upbeat. Researchers debated the significance of statistics. Those of us bored with AZT were already asleep. This Conference brought very little in breakthrough information but I did catch the Thursday session on Kaposi's Sarcoma since it is the affliction I have been diagnosed with.

Dr. Abraham observed 412 KS patients in Zambia and noted that in 1983 ten men to every one woman had KS--a figure which dramatically declined to a ratio of 2.3 men to each woman in 90-92.
A second presentation talked of getting 50% reduction in KS tumor load by expanding CD8 cells and reinfusing with rIL-2.
A phase II trial of Daunaxome concluded that of 22 patients, 1 had a complete remission of lesions, 20 had partial remissions and 1 had stabilized.
Even better findings were announced with Doxil. Of 40 people with advanced KS, 3 had total remission, 33 had partial remission and 3 had stabilized. Doxil is really just a traditional chemotherapy drug called doxorubicin hydrochloride (adriamycin) packaged in a drug delivery system that better directs the drug to the disease site. Later this month my doctor at St. Vincent's will begin enrolling in an expanded access program for Doxil and I expect to be the first to sign up!

Wednesday morning, June 9th I attended the AMFAR press conference on their needle exchange program which included a presentation by ACT UP's Allan Clear.

[page 4]
I attended a session on Deprived Populations and then sold merchandise for three hours, meeting lots of interesting AIDS activists from all over the world. It was fun!

In addition to the KS session on Thursday, I attended a second meeting of longterm survivors and a global committee meeting.

On Friday, I "managed" the workspace and ended the day carrying a huge Cannon copier to the parking lot. Felt like I was home already.

Original Format

8.5 x 11 inches (216 x 279 mm)



Rygor, Robert, “Berlin: A Report From the 9th International Conference on AIDS,” Queens College Civil Rights Archives, accessed May 17, 2022, http://archives.qc.cuny.edu/civilrights/items/show/306.