4-8-2014 - Reflections on “Dallas Buyers Club”

Novens, inc. was established in 1997 by dmurphy.

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.


9-13-2013 - Remembering Arthur Ashe

Novens, inc. was established in 1997 by dmurphy.

The United States Tennis Open is now history. Rafa Nadal and Serena were worthy champions. Djokovic and Azarenka gave it their best. The Arthur Ashe Stadium delivered some of its finest tennis. But it was a short article in the New York Times that made me reminisce about a man who touched me deeply many years ago.

This year the attendees at the U.S. Open could also drop by and visit “The Arthur Ashe Inspirational Tour”, which was put together lovingly by Arthur’s widow, Jeanne Moutoussamy-Ashe, which was a collection of his books, quotes, causes he was involved in and memorabilia.

I had the pleasure of meeting Arthur Ashe in 1993 when I was the Executive Director of the World Federation of Hemophilia. It was a time when AIDS still was a word with a questionable, prejudicial meaning and connotation. Ashe had gone public with the fact that he had contracted AIDS from a blood transfusion while he was in hospital with heart problems.

The Federation had organized a lecture series in conjunction with McGill University in Montreal, Canada. Arthur Ashe had agreed to be the key speaker. As always, in his quiet voice, he delivered a very moving presentation regarding the need to shed our prejudices, treat everybody with respect, and get rid of our anger regarding AIDS.

When his speech was over, he quietly approached me and asked whether it would be alright if he did not stay for dinner. He was hoping to get the last flight out of Montreal to La Guardia. He explained that he tried as much as he could to get home every night to tuck his little daughter in her bed and kiss her goodnight. He made it home that night to tuck her in. Two weeks later I was shocked to read that he had died.

I am reminded today of the words of the great Irish poet, Seamus Heaney: “The way we are living, timorous or bold, will have been our life”. Arthur Ashe had his priorities right. He lived his life boldly.

12-1-2012 - World’s AIDS Day

Novens, inc. was established in 1997 by dmurphy.
Today is a quiet day of remembrance of friends, relatives and acquaintances who suffered terribly and died of a word that entered our vocabulary in 1984: Acute Immune Deficiency Syndrome or AIDS. I think of extraordinary people whom I had the privilege to know and work with during that time: Mathilde Krim, Elizabeth Taylor, Arthur Ashe, Kenneth Cole, Manuel Carballo, Jonathan Mann, Pier Mannucci, Miguel Tezanos Pinto, Charlie Carman, Jose Alonso Gomez and so many wonderful hemophilia patients whom I served. Recently I was interviewed about my work for the Litchfield County Times. I realize how much that period of time influenced my life. Here’s the article.

5-12-2012 - A Long Journey from AIDS

Novens, inc. was established in 1997 by dmurphy.
Grifols, a global healthcare company based in Barcelona, Spain, recently opened a new plasma testing laboratory in San Marcos, Texas, which will analyze millions of samples of human plasma annually before they are approved for further manufacturing into life-saving medicines for patients. It demonstrates yet again the plasma industry’s ethical and financial commitment to safety and commitment to the many critical-care patients who depend on these products.
We have come a long way from July 1982 when the Centers for Disease Control published in its magazine “Morbidity and Mortality Weekly Report” that 3 patients with hemophilia had died that year with symptoms similar to those found in some homosexual men and Haitians, suggesting that members of all three groups were victims of a common, new and unknown syndrome. We did not know then that the blood system was contaminated. The word “AIDS” entered our vocabulary two years later. I was the executive director of the World Federation of Hemophilia in the latter years of the eighties and early nineties and saw too many wonderful people die because of contaminated blood products. The plasma industry can be proud of its determination to make sure that this would never happen again. And I am proud to belong to the industry.