Are salvage patients beyond help?Nelson Vergel
I just found out about the death of Gary Bischop, one of the first patients that I was able to help in the past two months to convince his doctor to advocate for his access of TMC 114 and TMC 125. Gary wrote me a nice testimonial in salvagetherapies.org about his ordeal and how full of hope he was. In it he said: “Thankfully, I don’t have to face the dim prospect of monotherapy again. Nelson informed me and the ATAC discussion group about a process called Emergency Investigational New Drug (EIND) access. So I approached my doctor with this idea. He was hesitant at first, but finally he did apply for the EIND in the beginning of March 2006 and within a week and a half we had permission from Tibotec, the FDA, and my medical Center’s Internal Review Board to proceed with the EIND. That means I will receive my TWO new drugs by the end of this month, March 2006. There is hope after all. Thank you Nelson and Barry for all of your help”.
He died a few days after he finally got the combination of investigational agents. I cried just thinking about this terrible loss. Could it have been prevented if he had got the drugs sooner? Could he still be with us? Why has hardly any activist out there help me spread the word about single patient treatment IND access for desperate patients? My mind is full of questions and it is a painful mistery that I hope to have an answer to eventually.
I have so far only been able to help fewer than 10 patients to get this combination of drugs outside a protocol setting. They all found out about this possibility after reading a press release that I wrote that only thebody.com was kind enough to publish (see http://salvagetherapies.org/announcements.htm). TheBody.com and ACRIA.org were the only groups kind enough to post information about this salvage access program. No other AIDS service organization that I contacted supported spreading the word about this potentially life saving program. This is a mistery that I still do not understand.
I have been afraid to write these words. But I have already been isolated and demonized by many of my fellow activists for being too aggressive about the way we should work on salvage access, specially now that there are so many possibilities to help people with drugs in phase III and expanded access.
Many activists think that all salvage patients are dead or beyond help. I wonder what world they live in.
Salvage patients are too tired and too busy trying to stay alive to have any time to get involved with activism, so their voices are never heard. They are silent, invisible, and a great inconvenience for AIDS groups and researchers. Next time you write a check for an AIDS organization, ask them what they are doing to help those who are in dire need for new drug access.
I donot believe in hell and heaven. But right now I am fantasizing with the idea of Gary sitting somewhere, looking down, and getting ready to wake some people up to help this cause. He was a true fighter and one who will be with me in my heart until not a single patient dies after running out of options for HIV. Too bad we coud not help him sooner. I am sorry Gary, and I hope that wherever you are now, you have no pain and no sorrow, but light and hope for the world you left behind.