World AIDS Day & The Medication Mixup
So, I've taken the advice of someone very special, and have decided that I should move on to more about me, and my life, and what's really important, rather than discussing politics and turning off people that would be otherwise interested in what's going on with my life. I'm currently in the process of responding to my cousin, Jim, who wrote me a letter regarding my post about amendment 2, however, after careful consideration, I've decided that I will post that to the comment section of that post, rather than publishing it as front page blog. So, instead, I come bearing good news, bad news, and a tale of the medication mixup.
So, first things first, let me talk about the latest good news. I got official word yesterday that the meds are indeed working. And working DAMNED well. My viral load, which measures how many copies of HIV are in a single ml of my blood, has dropped significantly. The labs I had drawn on October 30th showed my load dropped from 104,000 copies to just 334. In fact, the drop was so low, the normal test couldn't measure it, so they had to go back and do the ultrasensitive test. Completey undetectable (less than 50 copies) is still the goal, but for 40 days on meds, that drop is absolutely astounding. These miracle meds are costing my insurance company an unfortunate $1,871/mo, as I get the statements telling me how much the medication cost. Considering our rent is $1,050, it's a bit staggering to consider that my daily survival costs (including food) account to more than my pre-tax income.
The somewhat bad news is that my CD4 count is only up slightly. I'd hoped that starting meds would result in them bouncing back to the 500 range in a short amount of time, but my white blood cell production is still about a thousand below where it should be, resulting in a continued immuno-supressed state. I can only hope that now that the medication is doing the fighting for me, these numbers will begin to improve. The results of my latest labs showed an increase from 355 on 9/15/2004 to 396 on 10/30/2004.
Also, it seems my medication is messing with my liver emsymes... Specifically, my billirubin is elevated. The labs showed a 2.3 mg/dl result, which is slightly higher than the 0.3-1.9 average, which is considered normal. At a 2.5 level or higher, a slight jaundice discoloration can occur, though I've already noticed it, specifically on the whites of my eyes, under my eyelids. It's hardly noticable, however, and the results really don't mean much. If you want more information on billirubin and what it indicates, I found this useful link.
For those who are not aware, yesterday was World AIDS Day. Asside from being the first day of the month, I'm sure very few people even noticed anything about the day. I absolutely commend Nickelodeon, however, for having a special aimed towards youth about 3 teens growing up HIV positive. Some 40,000 kids in the US are living with HIV, and it's encouraging to see them take on such hot topic and put it in the forefront for kids to see, rather than hiding it in the 10pm time slot, such as CNN with its R U Positive special, aired on 11/28/2004. While the special was well put together, and informative (Probably the most striking statistic I saw in the documentary was the infection rate in Florida among the elderly, where in 3 counties, as high as 1 in 6 persons over the age of 50 are infected), the time slot shows that we're still a long way from getting beyond the politics and fear of the disease.
The last thing I wanted to talk about is privacy, and the medication mixup that upset me the other day. I went to go pick up my prescription at Walgreens on the way home from shopping on Friday. When I got home, I opened the bag of my Norvir, and found a bottle of Norvir, with different instructions on it, a lot more pills than I was entitled to, and someone else's name on the bottle. I was upset, but only for a minute. I threw the bottle in the fridge, and figured I'd deal with it later. On Saturday, I drove back to Walgreens. I never thought I would be, but I was so upset, I ran my car into the curb, pulling into the lot, cause I was thinking more about what I was about to do, rather than focussing on something as simple as parking. I walked into the store, nervous and shaking, walked up to the photo counter, and asked to see the store manager. They sent the assistant manger. I took her into the isle, partially because I didn't want to cause a scene, and partially because I didn't want anyone else to see what I was being treated for. I explained my situation, and the assitant manager was more than courteous. She told me the manager would be out in a minute. The store manager came out, but was clearly not looking for me. She acted as if she had no idea what was going on, and I had to re-explain my situation to her. Clearly what they had done was a violation of law, in part because they'd incorrectly dispensed medication, in part because of HIPAA privacy laws and a Michigan law protecting individuals from disclosing HIV status by a $1000 fine. I got the impression that she was overworked, and it took her almost 10 minutes to realize how serious I considered the matter. After which, she was extremely appoligetic, got me my correct bottle (which was still in the fridge, thankfully), and sent me on my not-so-merry way with a $20 gift card to the pharmacy, which I intend not to go back to again. I'm still considering the correct course of action I should take from here on out. I have photographic evidence of the bottle that was misgiven to me. What they did was clearly against the law. I feel dissatisfied with the handling of the situation at the store. Furthermore, I now feel distrust with pharmacies in general, since, afterall, it could have very well been my bottle dispensed illegally to someone else, and my privacy leaked. Normally, I don't think I'd care, except for the nature of my medication and the fact that the same thing happened to me last month, except that I caught it while I was still in the store. It's only used for one thing. And in this day and age of WebMD, it's pretty easy to find out what a medication is being used to treat. For the first time, it really became shockingly clear just how important medical privacy laws are. I figure I'm probably more public about my status than most, and if I could be this effected, I can just imagine what this kind of disclosure would do to others. I just feel violated. I am considering legal action, even though to do so could mean me being seen in a more public eye. I feel they should be held accountable, more than a crappy, worthless $20 gift card. I also feel responsible to tell the person who's privacy was leaked, though others have recommended I stay away from that, and leave it to a lawyer. I feel a moral obligation that (s)he should find out about their irresponisibility, so that they might make their own decision about going back to that store. Should I talk to the authorities? Am I over reacting? What would you do?
