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i feel deeply concerned that many thousands of people in the USA who are diagnosed can't get access to consistent and appropriate supplies of the existing medications today. And they are beginning to feel trapped in HIV ghettos around the few AIDS clinics, whose shelves are becoming bare. It is very stressful to reach the counter and be told, sorry we don't have what you need, we don't know why, come back next month. And they can't travel for work or to find another AIDS clinic safely, because most of the clinics only give out today a 2 week supply of medications, and it takes on average 8-10 weeks for the paperwork to go through to sign on at a new clinic. It is very stressful to go without the medications and/or take an inappropriate dosage when sharing to get by with someone else. It is public health policy madness. i wonder if it would change if money was released and a cure was found. Probably would. US politicians may like the idea of eradicating a retrovirus within their territories. If a cure is found. i can't bear to think of the millions of people with no hope of gaining access to it, who will watch the celebrations and others live, as they yearn to whilst they are dying. ACT UP is an amazing organization. You have used your skills and education to path the way for so many people. And now you are standing up again. I am older now and know more people who need medications, who need a cure. I will definitely join in today and follow your lead. I like your new poster. It's really iconic. Thank you for all your work, from one of the little voices somewhere out there somewhere.
Thanks for the feedback, Terry. You're not alone about not liking the word "queer," but I guess I'm kind of an agnostic on that one. I do think there's time to re-brand Obamacare, but only for our target audience -- its current supporters, and the fence-sitters.There's little anyone can do to change the votes of minds of the racists and Tea Partiers who hate all things Obama, especially Obamacare. The word seems pretty set in stone at this point -- even Obama uses it from time to time (see "On bus tour, Obama embraces 'Obamacare,' says 'I do care' ": http://www.cbsnews.com/8301-503544_162-20092578-503544.html). And unlike "queer," there's nothing inherently offensive about the word. We care. The other side doesn't. Let's push that angle. I realize this campaign will be an uphill climb, but I've always had a can-do spirit, so wish me luck.
And thank you, Peter, for approving my post without editing out my criticisms. That's happened to me when I participated in discussions on similar sites/blogs, and then what's the point in even going back to those sites for information when honest dialogue is prohibited. On topic with honest dialogue, I'm one who finds it offensive when even gay friends refer to me as "queer"... or "girlfriend," or "biatch." There hasn't been enough "re-branding" of the label "queer" (nor will there be) for me to allow someone who claims to have affection for me to use it to refer to me - not without then getting "biatch"-slapped (Wink). Using the term was fun (even empowering) when I was 18 y.o. and going through the process of coming out, but when people use those labels today it feels like they aren't willing to be more vulnerable with, and nurturing of, me or our community by expressing affection for each other in a more....well, affectionate way. So, I'm going to disagree with you when you say that the term "queer" has been successfully re-branded and is no longer derogatory. Since we have only seven months before the next presidential election when, if a Republican wins, the Affordable Care Act could be repealed, is there really time to spend on reclaiming and rebranding a derogatory term for the health care law? Im sure you're aware that there are Democrats (including gay and HIV+) who aren't happy with Obama's performance on other issues ( I think he's doing a great job), and that some also have prejudices against Black people (I'm proud that our country has a Black president). Some people believe (myself included) that Republicans use the term "Obamacare" as a way of tapping into prejudices against Black people that many people still have. Are you really convinced that it would be a less daunting task to address all of that racial prejudice, the frustration over his performance (valid or not), and all of the misleading, inaccurate information put conveyed by Republicans and the Tea Party (and do it all within the next seven months) in order to "seize" or "rebrand" the term "Obamacare" than it would be to simply provide the facts about the Affordable Care Act and how it benefits people with HIV? Just leave it to Republicans, Faux News and the Tea Party to continue doing the great job they are at orchestrating their own demise without (unintentionally) participating in that nonsense. Anyway, you probably get now that i most likely wouldn't join you on a "I Want Obamacare" campaign. However, if you send me a "I Want My POZ.com" bumper sticker I'll certainly display it pride... because I do appreciate the work you do for those of us with HIV+...and because you're handsome (I know, I know...so shameless of me. Wink). Be well. Terry
Terry -- I really appreciate your well-informed comment. That said, I'm well aware of the actual name of the healthcare reform law. You're right -- "Obamacare" has been successfully branded by the right as a derogatory term. But I think it can be re-branded, just as "queer" has been. If there was a very public movement to support Obamacare, and provide supporters with the information, facts, and tools they needed to defend the reform, then the term could be successfully re-branded. Creating such a movement around "The Affordable Care Act" would be more of a marketing hurdle at this point, than seizing the term "Obamacare" -- which on its face, is a defensible term. "Obama" is our nation's first African-American president (something to be proud of), and "care" is one of the best human traits, and something that makes Republicans look bad because they consider it a dirty word. I'm looking seriously at launching an "I Want Obamacare" campaign. If and when I do, I hope you'll join me. Thanks again for the considered reply!
I really don't think it's a good idea to refer to it as "Obamacare." Not only is it factually incorrect (it's called the "Affordable Care Act," and it wasn't even written by Obama), but it's considered a derogatory term by many people (including me - and I support Obama), it was coined by conservatives who want Obama out of office, and it continues to be used by the GOP as a fear mongering tactic to influence Independents and Democrats who don't understand the benefits of the Affordable Care Act and who are on the fence about whether they will vote to re-elect Obama in the upcoming election. And this, in part, answers your question, "Why aren't we all standing up strongly for the single most important piece of legislation for the care of people with HIV/AIDS?" Because they don't understand it and/or, as your case, they don't even know the health care law's appropriate name). You may now hear the Obama Administration and other Liberal and Moderate people refer to it as Obamacare, but this is to minimize the derogatory effect of the term (similar to how the LGBT"Q" community took ownership of the derogatory label "Queer" to minimize its derogatory effect on our community). Now that that's out of the way, if anyone reading this post (and/or your family, friends, co-workers) doesn't understand how the Affordable Care Act benefits people with HIV/AIDS (or any other per-existing condition, for that matter) go to healthcare.gov where the entire Act is posted, as well as a timeline of when each specific piece of the law goes into effect (e.g., 2014 - no insurance company can deny coverage to, or charge higher rates for, anyone with a pre-existing condition). And if you're currently uninsured you can also find and compare rates/coverages for state or federal Pre-Existing Insurance Coverage Plans that are already in place until that piece of the law goes into effect in 2014. To learn about, utilize and educate others on the benefits of the Affordable Care Act is the best way for any of us to be "defending it against misleading FOX News/Tea Party attacks."
Love your coment!
In reply to Tom, I couldn't agree more with your warning that history often repeats itself, and that those of us not aware of what's going on in the world of grants for HIV funding should be concerned. I'll admit I'm not aware of the grant world when it comes to HIV or anything else, but I definitely know that being complacent about the cure because you can rely on federal or other assistance for meds is folly... We are in an unprecedented time in the quest for a cure, and we're closer than most people know. I won't argue here with those who have given up, nor do I blame them. However their negative voices are not something I will pay attention to, especially now when the first man has been cured, Timothy Brown (who I had the pleasure of meeting a couple weeks ago), and there are several groundbreaking approaches in trial as we speak that aim to cure the virus. Whether the cure is 'functional', 'sterilizing', or some combination(s) of the two, this virus has been cured for the first time ever and we are now in the process of finding practical ways of providing it to all those infected. I moved back to San Francisco to make another attempt at getting into a cure trial, and am hoping and praying I get in. For me, when it comes to this virus, the cure is my top priority. While science may have advanced, the mindsets of most who are poz, especially those who have been poz in the days when the cure was a 'four letter word' that people gave up believing in when ART turned out not to be the cure. Well folks, it's 2012, read the news on the cure, you're only a click away from doing so since there's a tab on this site called The Cure right on the homepage. Click it. And realize you have a darn good reason to not only have hope, but it would be foolish to not be informed about something that is this significant. You don't like the way you're treated because you are poz? Hmm, well if you are no longer poz, then you would have one less problem to deal with, right? Rethink your 'fate', again, science makes progress at a pace that is not always predictable, but it does happen, and my negative poz friends, please realize that your uninformed and out-dated mentality about the cure is a real drag and truly not in your or any of our best interests. It's hard being poz, and I refuse to die, or live, as anything but my own, healthy self, this virus is an unwelcome temporary visitor that will only affect me until I am cured. You only have to suffer as much as you want to outside of having to take meds until you're cured. Don't sacrifice yourself in any way that you don't need to. You don't have to tell anyone your poz if you aren't putting them at risk. Not anyone. Stop, Stop, Stop living like you have to suffer from this stigmatized disease, and step into the current era of this fight and see it's end is near and start envisioning your life without it and planning for your future free of all stigma, meds, depression, and everything else the pre-cure era was known for. It's up to whether you keep your head in the sand casting doubt about the cure simply because your doctor hasn't kidnapped you and stuck a needle that cures you into your but - it doesn't and wouldn't have ever happened that way. Now since a cure has been proven in one person, and several promising approaches have recently proven effective at curing the virus in vitro and are currently in human trials, people should really embrace today, and realize that this grief is near the end of its course. I only ask that people bring themselves up to date about the era of this fight we're in, and how we shouldn't rest in comfort with meds, in fact that would be more foolish than ever, but there's also more hope than ever about priority number 1, the cure.
Tim Barrus
I have nothing but admiration for the people who are hopeful. I am glad they are hopeful. I wish I could be hopeful, but I am not hopeful. I am utterly without hope. That carrot and that stick have just made too many appearances. The case for hope can always be made. You take one tiny piece of illumination and you cling to it. But that illumination is never expanded into reality. There is no real evidence that a cure will be found. But there is a lot of evidence to indicate that a financial excuse will be employed along with the word -- someday. Someday is a fantasy.
March 16, 2012