Just recently I saw the powerful movie “Dallas Buyers Club” starring the Oscar-winning Matthew McConaughey in a stunning performance playing the true story of Ron Woodroof, an AIDS-stricken Texas electrician and rodeo rider, a freedom fighter battling an almost tyrannical FDA and the medical community.
It reminded of the early days of the AIDS virus. I was Executive Director of the World Federation of Hemophilia, a community deeply affected by the Aids virus due to their use of blood products. It was a time of terrible prejudices against gays, IV drug users and anyone with the AIDS virus. Huge tensions existed between the affected patient communities, their doctors and the pharmaceutical industry. Who does not remember the ongoing battle between American Dr. Robert Gallo and the French Dr. Luc Montagnier over who was the first to discover the origin of the AIDS virus? Two huge egos argued over patents while patients died in the thousands!
The Japanese government refused to allow Abbott sell their AIDS test in Japan so that the Japanese Green Cross could develop their own test a year later. During that time many HIV victims were not aware they had contracted the AIDS virus thus the virus continued to spread. The Japanese hemophilia community never forgave their doctors for not demanding that the government allow the Abbott test be made immediately accessible to doctors and patients.
I remember attending a dinner at a Medical Congress in Bari, Italy in 1991 when a French doctor spoke and said: “We are like gods to the patients. We only have to tell them what they need to know!” It was a time of arrogance. Some doctors did not feel they owed any explanation to their patients about their condition.
One day I was having lunch in Montreal with the wife of the founder of the World Federation of Hemophilia. Her husband, Frank Schnabel, had died of AIDS in 1988. She commented to me that the shame of having AIDS was such that he never told her he had AIDS until two months before he died! It was a time of shame, frustration and anger.
And then there were the extraordinary men and women whom I had the honor to know during that time:
Dr. Anthony Fauci fought for the AIDS patients at the National Institutes of Health in Washington;
In the early eighties, a great friend of mine, Professor Pier Mannucci, discovered in his lab in Milan that if you heat-treat human plasma you can inactivate viruses, including the HIV virus;
Dr. Jonathon Mann started the Global AIDS Department at the World Health Organization in Geneva with two others, including my good friend, Dr. Manuel Carballo. It eventually grew to be the largest department at WHO;
Jose Antonio Alonso, the charismatic and fearless president of the Spanish Hemophilia Society, also a dear friend;
Mathilde Krim, the energetic founder of AmFAR (American Foundation for AIDS Research) on whose board I was honored to serve.
The AIDS era was also a time for heroes that many of us have known, admired and loved.