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Steven, just as I'd love to see the poz community reorient its perspective and acknowledge that there is a cure, I beg you to understand that its not going to be rolled out "next year". Read any number of accounts on pending research and experiments, and it becomes evident that "the cure" is in our sights, but go back a little while, and you'll realize its been in our sights for quite some time. Part of the problem is that too many of us demand a cure in the terror of our initial diagnosis, are told to calm dowb because something amazing is right around the corner and subsequently become complacent in the ensuing years while HIV is "manageable". By the time we start to care about "the cure" again, we've been robbed of too much to stand up to a system which isn't making the cure a priority. To actually win this marathon, we need the right mix of perspective and determination. To get there, we'll have to change a lot about the way pozzies are taught to think after diagnosis. Stay vocal, and don't lose your perspective too. In the meantime, have you tried to network with other cure-focused groups? amFar isn't the only organization which is focusing on a cure. The Aids Research Alliance is a less known group that seems promising. The Treatment Action group dedicates itself to "the cure", and Project Inform advocates for it too. The AIDS Policy Project has been petitioning people for donations in a no-nonsense path towards funding cure research, and is my personal favorite of the bunch. It is the only one in the group that has always been exclusively dedicated to a cure.
This is a wonderful campaign. I will never give up hope for a cure. After my diagnisis in 2009, I met my amazing (negative) husband and had our beautiful (negative) daughter. I simply cannot give up hope for a cure.
@Jonathan, all here, Hey! I also tested positive almost a year ago (above i mis-stated my diagnoses as about a year and a half ago but I first tested positive last November) I'm glad to hear from another 'newly diagnosed' person about pushing for the cure being given more attention. We have the cure - now we need to push for the development of better ways of implementing it that are practical for mass role out - Timothy Brown is the 1st, and now it's time for all of us to Demand that he is by no means the only one to be cured and Immediately! This is not a tolerable scourge - it's by no means something we should wait quietly for... It would be great to find a way to meet more people who have a similar outlook and perspective as me -- i haven't met many relatively 'newly' diagnosed people at all, especially any that are aware of the cure. Moderator, is there any chance I can provide my email address to Jonathan or anyone else here on this thread that would be kind enough to connect with me? I'm really alone and could really benefit from connecting with people who are aware of the cure and don't think that HIV is a life-long lifestyle we should just accept. I'm already on meds and am undetectable as of last month, and by no means do I underestimate the importance of meds, but I also have kept informed about the cure and want to be HIV negative and/or functionally cured ASAP (hopefully within a year). Is there any way of connecting with others who have a similar perspective here? I would love that, it would really really make me feel less alone.. it would help me feel hope, which i really could use more of these days. thank you all here!
All I have to say is thank you! It has been almost 1 year since i first tested positive and began treatment. To say the least it was the most upsetting moment in my life but with the help of this site and those who I have met along the way have helped tremendously in self acceptance, strength, and perseverance. I will mostly definitely be there when that moment arrives the "CURE". I feel strongly it is time for all communities to push our political and scientific leaders that the time is now and begin the raising money to end this scourge. Like it has been said several times life long pills is not the answer. Hopefully a new generation will grow up never fearing this disease again.
Andrew, I couldn't have said it better myself - 'we already have a cure' - 'now is the time to develop techniques that are economically feasible and medically practical'! Everything you said is so true, and so important, especially that; 'HIV couldn't be closer and further from "a cure" than it is today'. I recently contacted certain HIV organizations about their thoughts on the cure, specifically, what if anything they're doing to advocate and contribute towards funding for 'Phase 2' in its implementation. Just as an example of why the 'further' part is so true, unfortunately, is this: the leader of an HIV org that uses 'cure' in it's name, is completely, at best, misinformed, about the matter of fact that HIV has been cured, and can be feasibly rolled out to the entire HIV positive population if only there was more support directed towards it. I want to be cured, now. I want everyone who is infected to be cured now. And there is no "until", there is only a question of what you so clearly and effectively explained. I for one will never stop demanding the cure, I base this philosophy not on a pipe dream but on my keeping well informed about the scientific fact that HIV has been cured, is curable, and that the most important aspect of the subject now, is to implement it and rid the world of this disease. I am here and actively committed to this. 'In struggle' (as Jerry signed off so appropriately), Steve 25
Gerald & all, the ten ton elephant in the living room is that HIV couldn't be closer and further from "a cure" than it is today. Unlike most other diseases which seek "a cure", we've already done it. Its not practical, but we have it. Timothy Brown is almost certainly free of the virus, and all this talk of "until there is a cure" is so very 2006. Using phrases like "until there's a cure" should sound as misinformed as "until there's space flight". There is no "until". Its a done deal. It is now time for phase two. Rolling the cure out to the masses is simply a matter of developing known techniques to be economically feasible and medically practical, or developing new techniques that are. This puts a cure for HIV light years ahead of where the general public thinks it is, or where many in the HIV establishment place it in their discussions. And therein lies how we are so terribly far from "the cure". History shows us that humanity has a unique tendency to forget what it already knows. The greeks "discovered" penicillin millenia before Alexander Fleming, but millions still died before the widespread utilization of antibiotics. In the early 1700s the turks were noted for exposing themselves to mild cases of smallpox with the understanding that it could be used to avoid the more fatal variety, but it took nearly a century for Edward Jenner to actively become a proponent of the what we call vaccination. Many with HIV recount that their doctors were throwing "everything but the kitchen sink" at their virus and that the effect seemed infinitely more effective than antiretroviral monotherapy, but we held endless debate and years of trials to determine whether or not this was really an effective therapy. How many of us were maimed or killed while we held court on the efficacy of multidrug therapy? Stop asking for a "cure" and start demanding that the cure be improved and made available. This is not just a matter of semantics, but perspective. Perspective determines trajectory, and trajectory determines where we arrive. We already have a cure. Start talking about making it workable.
Thank you, Oriol, Thank you mucho for the video and CURE shout out. I have been poz since 1981. My first love was a flight attendent from NYC and we had great crazy sex before the AIDS epidemic hit in 1983 then he died in 91. My struggle with disclosure to BF's and employers was very discriminatory and frightful. Your story and other will help end AIDS and find a cure. Yes, things get better, I'm married to a wonderful,sexy, funny,peaceful, family, Colombiano man whom gives me strength everyday to be a great rock of our family. However, the lesson I learned like you is that AIDS sucks, yes, the worst part is wasting time being in fear for decades of a virus and what others think of me and my virus. Alas, a waste of time,pain, and memories fighting discrimination within our gay community and the community at whole. Now, I volunteer at a local STD clinic to help the young gay men have better relationships and to stay HIV neg until the cure comes soon. Again Thanks for your shout for a CURE COMES SOON>
Steven
Andrew, I haven't connected with any cure-focused groups yet, but I definitely will be. Right after my diagnosis I tried to get in a study utilizing gene therapy out in SF but was rejected because my t-cell count was too low. I definitely want to be engaged and do not want to lose my perspective. I understand the cure won't be publicly available next year, but it is possible to be cured and I want to be cured asap (by taking part in clinical trials, etc.). Thank you so much for providing the names of cure-focused groups! I now have some pointers on my direction. For my own sake and for so many others I really hope I can help with this most important effort. I want everyone to know that HIV is curable and has been cured, and that we are closer than ever to the widespread deployment of it. Yes, I agree, what people are told after diagnosis needs to change, it needs to be updated about the reality of the cure.
September 8, 2011