March 14, 2009 San Francisco, CA Ladies and Gentlemen, friends of Marty Delaney, I feel extremely honored and privileged to be here to celebrate the life of Marty Delaney and to have been asked to express a few brief reflections about Marty and his extraordinary work on behalf of people with and at risk for HIV/AIDS. I knew Marty Delaney for 24 years. I first heard about him in early 1985 through some of my staff and HIV researchers who were actually quite intimidated by him, mostly because he was, as they said, "making trouble for them" regarding the design of clinical trials. He certainly was a big-time headache for the FDA. Actually, the problem for them was that Marty was so smart, articulate and well-informed to the point that he knew more about HIV/AIDS and the complexities of treatment access, patient education, and a sound research agenda than some of them did. As they soon found out, he was correct most of the time. Now, confrontational and theatrical activism certainly has its place and has been very effective in calling attention to important problems, notably HIV/AIDS. But Marty's brand of AIDS activism was somewhat different. As I recently described him, he was analytical, well-informed, passionate, articulate, persistent, tough-minded, gracious, transparent, fair, and above all a thoroughly decent human being. He did not confront just for the sake of confrontation. I became very interested in learning more about this person whom I had not yet met. And so I began to read what he had written and I examined press reports about him and what he was doing in San Francisco and throughout the country. Furthermore, when I found out that he was formerly a Jesuit Seminarian, I decided I absolutely had to meet him personally since for better or worse I had experienced 8 years of Jesuit education in high school and college. And so I imagnied that we might have a lot in common He beat me to the punch me by calling me up and saying that we needed to get together to talk about patient access to experimental drugs within the context of highly restrictive clinical trials. Although he was well-aware that I was not with the FDA, he wanted my support in confronting the FDA about accelerated approval of drugs for HIV and its opportunistic complications. We soon met and began one of the most extraordinary relationships that I have ever had with a colleague and a peer. When we both realized that we were fighting for the same thing, but we were just wearing different uniforms, we developed a respect for one another that gradually morphed into a genuine friendship that got stronger as the years went by. He never hesitated when he felt it necessary and appropriate to nudge me, critique me, advise me, scold me, and point out things that were not yet on my radar screen. He was an extraordinary source of information regarding the community needs: Where was the pain? Where was the anxiety? When was the time right to get out into the trenches and talk to specific people? It was in this context that our collaboration was born, specifically in my speaking publicly for the Parallel Track program despite the resistance on the part of the FDA and many AIDS clinical researchers. Other activists, including Jim Eigo and his colleagues at ACT-UP in New York, also were pushing for a parallel track of accessibility for drugs in clinical trial. However, it was Marty who pleaded with me -- successfully -- to come to San Francisco and see firsthand patients from the Castro who were suffering physically and psychologically more than they should have been because the doors of access to drugs were shut to them. He then arranged the Town Hall meeting where I was to speak and as I was getting ready to go out on stage, he looked me in the eye and said, "Tony, do it; please do it". He already had convinced me earlier in the day and so I did it, the New York Times reported it; Washington and the FDA relented and we had parallel track. I received credit for that, but it was pure Marty Delaney. That is just one of many stories and accomplishments in Marty's legacy. As things got a bit calmer over the years, Marty accomplishments did not diminish. He made extraordinary contributions in helping to frame the HIV research agenda. He was a member of the NIAID AIDS Research Advisory Committee from 1991 to 1995 and served on NIAID's Advisory Council from 1995 to 1998, and well as on many other official advisory committees. But, it was not just the official advice that I treasured, it was the phone calls at home at 8:30 PM San Francisco time and 11:30 PM DC time opening with the comment" "I knew that you would be awake and so can you talk?" In a 20 minute call I would learn more about what was going on in the trenches -- and what he thought I should be doing -- than if I had 5 official briefings. As I was preparing my remarks for this Memorial, I reflected that it is difficult to conceive of the struggle against HIV/AIDS without the presence of Marty Delaney. But then again, I quickly realized that this struggle against HIV/AIDS will always have Marty Delaney. For Marty left for us by his leadership and example a unique spirit, a fierce integrity, and a commitment to activism that does not die with physical death. He has left something of himself with all of us. When I presented Marty with the NIAID Director's Special recognition Award a few weeks before he passed, I called him a Public Health Hero. Indeed, he always will be a hero to me and I will miss him dearly. E-mail exchange with Brenda Lein Immediately below is e-mail that Jenny sent to me after my e-mail to my family on Mar. 17 at 8:18 AM: Wow. That is really wonderful dad. What a special friend you are and he was. T'm sorry about what happened. On Tue, Mar 17, 2009 at 8:18 AM, Fauci, Anthony (NIH/NIAID) [E] <AFAUCI@niaid.nih.gov> wrote: Guys: In sent to me right after I returned from San Francisco where I attended memorial service. For those of you who do not know, passionate, extremely articulate, persistent, tough, gracious, fair, and above all a thoroughly decent human being. He was based in the Castro District of San Francisco and he influenced me more than any other activist. He trained for 6 years in a Jesuit seminary before he realized that he was gay and needed to do something else. He became a business man and then when AIDS came along, he started Project Inform in 1985, the first and best organization advocating for treatment access and educating the public about HIV/AIDS. At first he confronted me about government policy, but he did so with respect and outreach. He was almost always right and always ahead of the curve. Over the years, he and I became very close friends. ie joined Project Inform when she was a teenager and became disciple. I remember her as a "punk rock" person with a Mohawk haircut, black jeans, combat boots, many pierces, etc. I could not tell if she was gay, bisexual or straight. It obviously did not matter; she was (as is) beautiful and amazingly competent. Over the years, she grew into one of the main players in Project Inform, a mature woman, and the mother of a beautiful little girl. Love, Dad Anthony S. Fauci, MD Director National Institute of Allergy and Infectious Diseases Building 31, Room 7A-03 31 Center Drive, MSC 2520 National Institutes of Health Bethesda, MD 20892-2520 Phone: (301) 496-2263 FAX: (301) 496-4409 E-mail: afauci@niai The information in this e-mail and any of its attachments is confidential and may contain sensitive information. It should not be used by anyone who is not the original intended recipient. If you have received this e-mail in error please inform the sender and delete it from your mailbox or any other storage devices. The National Institute of Allergy and Infectious Diseases (NIAID) shall not accept liability for any statements made that are the sender's own and not expressly made on behalf of the NIAID by one of its representatives.
April 30, 2009 - Real problems with the HHS public affairs people - Jenny Backus. It is clear that I am being muzzled to speak to any major Press. Reasons unclear (see above). Big issue today in that on the NBC Today Show, which Jenny reluctantly agreed to put me on, the VP was quoted as saying that he would not want his family to go to any crowded places like riding on a subway, in an airplane or in a crowded arena because of the danger of people coughing on them and giving them the flu. I was on next and said calmly that this is not the CDC Public Health policy and calmed the waters, etc. Jenny had tried to have me call her 1 minute before I was on the air, but I did not see her e-mail. After the show (in which everyone said I did a great job) we connected by phone and she critiqued my answer to a question about the WHO increasing the phase of the potential pandemic from 4 to 5 and asked me if I thought that it would go to 6. I said that based on what the WHO was saying and the evolving nature of the epidemic, I would not be surprised if they did boost it to 6. Jenny said I should not be making policy ahead of the CDC and WHO - give me a break!. In any event, FOX National News wanted me today and the subject of interview would surely be the VP's misstatement. Surprisingly, Jenny approved it and she said I should change the subject when they ask about the VP. She sent me a statement from the VP's office saying that when the VP was asked what he would tell a family member if they planned a trip to Mexico, he would say not to fly and that I should refer the press to his statement. The statement is a flat-out lie and they wanted me to explain what the VP meant. I decided not to go on FOX and get caught in that nonsense. Jenny is blocking me on all of the networks and cable shows that are good and allowing me to do very little and so I am reaching the point where I do not want to be involved with them. April 30 - May 3, 2009 - Continued evolution of epidemic/pandemic with continued real issues with Jenny Backus and me. She refuses to let me on TV and even yanked me at last minute after agreeing that I would do Good Morning America today. I got to studio and found out that overnight, she had substituted Rich Besser for me. The ABC producers were horrified and apologetic. Also, Wolf Blitzer, Lou Dobbs, Bob Bazell and others are getting pissed that they are not allowed to interview me. Even David Gregory noted that it is surprising that I am not being seen on TV at all.