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Awesome entry, David. I have always been a firm believer in the fact that you always have to look out for #1, because if you don't... well, you know the rest. I can sympathize completely with many of the things the previous commenters posted and wanted to share some of my experiences. I have been a client of GMHC for about a decade and learned that after they moved to a new location, all clients needed a new ID. I went down on five (5) separate occasions only to be told that the specific person who was in charge of making the IDs was not available, despite the fact that each time I went during the times they were supposedly available. And the reception was always nonchalant, as if my time wasn't valuable and I could just keep making the trip until I was successful in getting this ID. I see why I don't utilize their services as much as I could, and I feel bad for people who actually need them. Also, on another note regarding treatment. I have been made to feel as if I didn't matter by certain practitioners, who were only concerned about moving the line along a la cattle call... as if it was all about trying to get as many "units" crammed into one day lest they not be able to make any money since they all claim that Medicare/Medicaid rates aren't worth their time. I always thought that people went into helping professions to help others. I guess I've been wrong all this time. (But) your entry brings it home: unless you have walked in someone else's shoes, you have no idea of what they are going through. Unfortunately, many of the people who staff ASOs, CBOs, and HIV clinics will never be able to relate to what their clients are going through since many of them aren't even able to barely empathize with us.
All due respect, anna belle, is listening+ and that's not an appropriate question; everyone has a right not only not to to disclose medical information to anyone reading an article, it's not even legal to ask (violates hipaa, and common sense). I'm hiv+ myself, and seeing the comment kind of miffs me a bit, but perhaps I'm overreacting. Again, I believe if the article says anything it's that David has either witnessed firsthand or heard lots of horror stories. On another note, David, great article. I can personally relate to this stuff since I recently got fed up with the bad care, lack of attention to medically valid concerns, and general bitchy, haughty attitudes I sense at an infectious disease clinic I've been forced to go to because I'm currently unemployed. I made a mistake last week when I asked for a referral, a hospital employee cut in front of me, usurping my time with the receptionist. When I reasserted myself, I was met with a 'some people have to work around here', it was belittling, disrespectful and unhelpful and publicly embarrassing. So I called her a bad word and walked off. Now this 'scared' or 'troubled' the mostly-women staff, so when i returned, I was escorted by a security guard and they wanted me to sign a behavioral contract, which I counteroffered with a 'hiv patient bill of rights' for them to sign and initial. They refuse. So I refuse and I'm trying to seek care elsewhere. What they fail to understand is that incident was not an isolated one; I had a litany of complaints about this clinic, from an inept psych nurse prescribing me expensive psych meds that caused me to both have breathing issues and develop an ongoing migraine to a PA who got catty and egoistically-competitive with me when I declined her suggestion to switch my meds to protease inhibitors because I've the unfortunate bias of someone who reads SFAF Beta magazine, and actually researches bleeding-edge treatments like MIT's DRACO, which the PA didn't even herself know about.
If you know so much, are u hiv+ or hiv-?
David, you have clearly laid out why this is one area where we SHOULD roll back 20 years! Thank you for this clear statement.
Great stuff David!
I love this article and agree with it 110% !!
Awesome and inspiring! Aids Service Organizations have become part of the problem and I feel they're no longer part of the solution. I have not renewed my Ryan White elegibility paperwork because it's become a useless ritual. Why should "my" ASO be the recipient of an award on "my" behalf when they fail to provide any service? I have volunteered with an ASO and have become disgusted with what transpires behind the scenes. After a decade and finally in need of assistance (dental) I find all the doors shut. Why bother? We have to return to the basics and stop the bleeding of funds set aside for those infected. Fancy buildings, fancy titles, fancy salaries all earned on the blood of those living and those who have died of hiv/aids. Fake compassion, fake programs, fake statistics that have been pitching everyone against the other. The old guard is tired, burned out, dead. A massive bureaucracy that takes care of itself is what has been achieved though the years of advocacy and protest. Somewhere, somehow we have lost ourselves (people with hiv/aids) and with that loss we have also lost all the accomplishements we had achieved. Sure it's 2011 and not 1984, but sure feels like we haven't budged in terms of treatment and care. What care? That's why your article is awesome and inspiring!
harleymc
"and even fewer are adherent or have undetectable viral loads. " Yep that's a huge attitude problem from health 'professionals'. If a PLWHA has viral bounceback they are immediately labelled as non-adherent or non-compliant. When our medicos won't listen to us, there is no point seeking medical care. The doctors who are on the 'non-adherent' witch hunt are the very cause of people with high viral loads dropping out of treatment. Of course it helps the doctors' reputations if the only people they treat are the ones with undetectable viral loads. We should not be too surprised at this structural bias to kick people failing treatments off the books. Lets not blame the victims of this genocide.
September 24, 2011