Saturday, 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 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@niaid.nih.gov 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. From: Zuzu [mailto:zuzu77@gmail.com] Sent: Tuesday, March 17, 2009 1:07 AM To: Fauci, Anthony (NIH/NIAID) [E] Subject: Re: Favor And on a completely unrelated note, Martin was so proud of the friendship he had with you. I spoke at his retirement event and I wanted to make sure I mentioned things that were important to him, so I sat down and talked to him about what he felt was most important and what he was most proud of. He started by speaking generally, about the quality of relationships he was able to build in different sectors - he was proud that people would come to him seeking advice and equally proud that he would give it, honestly, even when it was unpopular. But after a few minutes, he settled down to say he was most proud of the relationship and the friendship that he'd built with you over these years. I mentioned briefly in my remarks that Martin stole my partner, Ed, for Sci Fi night every Friday. I, however, was persona non grata because I wouldn't agree not to talk through the programming. Ed said, however, "the only exception is when Tony called, then he'd pause the program for upwards of a half hour and I'm glad I had my iPhone." There was a place for you in his life that took precedent over nearly everything. I know how present you were for him and when he had moments of clarity in those final days I would tell him I was consulting with you, that you were speaking to his doctor, etc., and he would smile and I know he felt like you were present with him and I know he felt well attended to. I know he felt the presence of your friendship. Martin's death is an unspeakable loss for me. He has been family to me and it breaks my heart that my daughter will only know him through the stories that we tell and not the gestures of the way our lives intersect. Holidays won't be the same. I will miss our walks, going to movies, having dinner, going to lunch... I will miss the projects we would have launched and the fun we would have had and I will even miss how frustrated I would get with him because of his stubborness. He could be terribly stubborn in the most irrational ways. He had seven vaccuum cleaners and there was little evidence he used any of them. He had a garage full of car cleaning products, many (most) duplicates, and he paid to have his car detailed. They were all unopened. (He said he "liked" buying them.. just in case...) When we had dinner at his house, he'd create and re-create the recipes several times before the actual evening and everything was perfect - he loved to cook. He would say (often) that there was more evidence and likelihood) of alien life than the existance of God - he was staunchly aetheist despite his sister's protestations. And he adored his sister (though he specifically noted he wanted a non-religious service in San Francisco and for the life of her she wasn't able to honor that... but I think he knew she couldn't and on some level he'd be okay with that.) I would get more emails each week about alien technology than I would about HIV/AIDS in recent years. There is nothing he would want more than to be rocket launched into space with Gene Roddenberry and his wife... It's all the little, seemingly inconsequential things, that I'll miss... anyways. -Brenda On Mon, Mar 16, 2009 at 9:28 PM, Zuzu <zuzu77@gmail.com> wrote: Tony, Yes, March 21, sorry I mis-spoke. It was good to see you too, though I'm sorry it was under these circumstance and also sorry it was so brief. I hope your travels home were swift and otherwise uneventful. Your advice is sage, as always. I'll have Dan's Heath Care Agent speak with his physician. Thanks again, Brenda On Mon, Mar 16, 2009 at 3:00 PM, Fauci, Anthony (NIH/NIAID) [E] <AFAUCI@niaid.nih.gov> wrote: Brenda: It was good to see you at Marty’s Memorial. With regard to Dan Cusik’s case, I assume you mean that the UCSF transplant committee will discuss the case on March 21 (not February 21 – in other words, they still have not decided). Having said that, it might be best if the committee solicits my opinion about the risk of exacerbation of PML associated with immune suppression for prevention of transplant rejection. It might seem presumptuous for me to pre-emptively call them. If Dan’s private physician could suggest to them that I would be happy to discuss this issue with them, this would be fine. Then it would be up to them to decide if they are interested in my opinion. My expeerience has been that if you impose yourself on people, they get offended and clearly ignore you. Best regards, Tony 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@niaid.nih.gov 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. From: Zuzu [mailto:zuzu77@gmail.com] Sent: Monday, March 16, 2009 12:35 PM To: Fauci, Anthony (NIH/NIAID) [E] Subject: Favor Tony - case is being heard by the UCSF transplant committee on February 21st. Other than history of PML (diagnosed in early '96, went on potent, high dose combination ARV therapy, quadruple dose saquinavir (early version, not terribly bioavailable), 1200 mg AZT, double dose 3TC and something else, I can't remember - PML went into remission and has remained in remission since then. His CD4+ cell count never dropped below 400) he is eligible for transplantation. He responded well to RFA (they say his lesions, 'disappeared'), but I understand that there might be growth of a new lesion. But again, from my understanding, he's still eligible for transplantation (other than the prior history of PML) and has a MELD score of 17. At any rate, I think the issues before the transplant committee are a few .. 1) protocol exception (for the HIV transplant project), 2) off protocol transplant and 3) do they want to potentially "waste" a liver on someone who could, theoretically, have rapid PML progression and die shortly after transplantation. The case of PML progression following transplantation that I'm aware of was in a person without a prior history of PML.. why this person developed PML and progressed when nearly everyone has the JC virus is unknown, of course. PML has been resolved for 10+ years. I know arguing that last point is the challenge, but any way(s) that you could weigh in on this would be valued greatly. Let me know if you have ideas. Thank you! -Brenda Mar. 14 – April 7, 2009 – Incredible activity in the Administration in trying to revitalize the economy with bailouts and takeovers of companies such as GM, AIG, etc. Stack Market still volatile, but seems to have settled between 7000 and 8000 down from 14,000 in Oct. 2007.