POZ Community Forums
Main Forums => Living With HIV => Topic started by: edfu on June 10, 2008, 04:59:51 am
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http://nymag.com/health/bestdoctors/2008/47569/
From "New York" magazine's "Best Doctors" issue. I don't agree with a lot here, especially the fact that there's no discussion of the difficulty, if not impossibility, many people have in accessing medical care, let alone the cost of HAART.
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Dying from AIDS, or dying with an HIV infection, which may not be the same thing, is a significantly less common event than it was a decade ago, but it’s not nearly as uncommon as anyone would like.
I certainly agree with this statement.
I do agree with you Ed, they didn't speak much about the difficulty of obtaining HAART for the poor, etc.
I still poke my little bird neck up every time any kind of topic like this comes up, and say "being poor is the worst part of having AIDS". That's not to say that everyone who has AIDS is poor or will become poor, but it can and does happen to many of us.
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Dying from AIDS, or dying with an HIV infection, which may not be the same thing, is a significantly less common event than it was a decade ago, but it’s not nearly as uncommon as anyone would like.
I certainly agree with this statement.
I do agree with you Ed, they didn't speak much about the difficulty of obtaining HAART for the poor, etc.
I still poke my little bird neck up every time any kind of topic like this comes up, and say "being poor is the worst part of having AIDS". That's not to say that everyone who has AIDS is poor or will become poor, but it can and does happen to many of us.
Hear, hear!
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I find this a very interesting and useful article. Personally, I fall into what they describe as the "third group" - "sins of the past":
The third group of HIV-infected individuals consists of those in the middle of the two extremes. HAART, in these cases, has literally been a life saver, but has not guaranteed a normal life expectancy. These are the patients, like Bob Hattoy, who were diagnosed with AIDS in the late eighties or early nineties, before the advent of HAART. They began on one drug (AZT, for instance) and then stayed alive long enough to get on protease inhibitors and the HAART cocktails. These patients were on the cusp of the HIV transformation from a deadly to a chronic-disease epidemic; they were infected late enough to survive but too early to derive all the benefits from HAART.
The anti-retroviral drugs of HAART work by attacking the life cycle of the virus. The earliest generation of HAART drugs attacked the enzymes that the virus uses to reproduce in the cells. (Protease inhibitors, for instance, go after an enzyme called HIV-1 protease, which the virus uses to assemble itself during reproduction.) The latest drugs go after the methods that the virus uses to enter cells in which it will replicate. The key to the effectiveness of HAART, as researchers discovered in the mid-nineties, was to include at least three drugs in the cocktail to which the patient’s specific virus had no resistance. This would suppress viral replication sufficiently so that the virus wouldn’t be able to mutate fast enough to evolve resistance to any of the drugs. But patients who began on one or two anti-AIDS drugs and only then moved to HAART already had time to evolve resistance to a few of the drugs in the cocktail. This made the entire package less effective and increased the likelihood that they would evolve resistance to the other drugs as well.
“We call it ‘sins of the past,’ ” says Mullen. “We gave these patients sequential monotherapy; it was state-of-the-art at the time, and a lot of those people are alive today because of that. It got them through until HAART came along, but their HAART is not highly active, only fairly active. Their virus has baseline mutations that interfere with the response.”
As for some anecdotal stuff, I'm currently in a long-term survivor support group and in the past 2 years we have lost 2 attendees, one just this past week. Considering that at most the group consists of a dozen individuals that's a bit high. The first man was a heterosexual, African American past IV-drug user (his wife is infected too but she didn't attend our group) but as I recall he was not currently using IV drugs, but died of some sort of cancer -- IIRC it was esophageal. I'm not sure of his age, but I'd say he was in his mid/late 50's so as mentioned in this article the cancer could have been something he would have gotten regardless of HIV infection, though surely HIV infection made the cancer progress faster.
The second individual committed suicide -- drove to a park, sat in his car and called 911 to report his suicide and then shot himself in the head. I wish that this article had mentioned more mental health issues, because I'd wager at least a third of our group's attendees have serious mental health issues, even if they are doing fairly well in a lab/bloodwork numerical sense.
We also have one individual who falls in the "indigent" category as described in this article you linked to, though he seems to fare pretty well though he lives in homeless shelters. I simply can't imagine how difficult it would be to deal with HIV in that sort of situation, but one sees it quite a bit certainly in a large city with a substantial IV drug use population such as we have here in Philadelphia.
Otherwise, in recent years the people I know who have died have either been like Mel Cheren at the beginning of the article, who I knew kindasorta back in 2002, or in the category of infected individuals who didn't adhere to HAART (I suspect) due to drug abuse issues. That's definitely the big category, and since I get treated at a local clinic I see what I suspect is a lot of this. It's the same at the place I go for CBT counseling -- my therapist says the majority of people they see at that facility have drug abuse issues that complicate all treatment for HIV.
As far as your commentary about accessing medical care/cost of HAART -- I can only say that I don't really find that a real issue, at least where I live. The services here are adequately funded, though it could always be much better and it's an eternal struggle to maintain them -- but they are there. The issue is that for a variety of reasons as described certain populations do not access them, or access them too late.
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“We call it ‘sins of the past,’ ” says Mullen. “We gave these patients sequential monotherapy; it was state-of-the-art at the time, and a lot of those people are alive today because of that. It got them through until HAART came along, but their HAART is not highly active, only fairly active.
OMG..."fairly active anti-retroviral therapy".
FAART.
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an interesting article I thought. thank you for pointing it out.
but won’t know it or acknowledge it until admitted to the emergency room with pneumonia or some other opportunistic infection. ... Half of these deaths will occur in the first four months after diagnosis, often from whatever AIDS-related ailment led them to the emergency room in the first place.
my recently (second) deceased partner was definitely in this first group. If he had been tested sooner (he was in the ER at least four times in the last 10 yrs. from accidents or minor illnesses), we might have known about his hiv and lymphoma and been able to fight them. As it was, he got both diagnoses after being admitted to the hospital (with a month-long fever as his only symptom) and passed away a short two months afterward.
The third group of HIV-infected individuals consists of those in the middle of the two extremes. .... These are the patients who were diagnosed with AIDS in the late eighties or early nineties, before the advent of HAART. They began on one drug (AZT, for instance) and then stayed alive long enough to get on protease inhibitors and the HAART cocktails.
“We call it ‘sins of the past,’” says Mullen. “We gave these patients sequential monotherapy; it was state-of-the-art at the time, and a lot of those people are alive today because of that. It got them through until HAART came along, but their HAART is not highly active, only fairly active. Their virus has baseline mutations that interfere with the response.” ...
Though I haven't died yet (at least not when I checked this morning as I was taking my meds LOL) [You aren't really in this category yet either Philly. You have to be dead to be a member ;)], I expect to end up in the category. The past 16 yrs have been a struggle, and though the meds have given me that time and gotten me to a point where I can believe I'll make it for longer than three months (the warning I received from several doctors for nearly 10 yrs), I just can't bring myself (at 46, with just a little over 200 tcells and unable to hold an undetectable viral load) to believe that I'm going to survive another 14 yrs.
Sins-of-the-past patients have to have faith that the pharmaceutical industry can stay one step ahead of their disease. The prognosis, at the moment, is promising. ... Still, some sins-of-the-past patients simply do worse than others, and the occasional patient will lose the battle before new drugs come along or simply give up.
This has been my one saving grace. Several times I've been "stuck" on some regimen that were nearly as bad as the disease (puking EVERY day is just NO way to live. Being that sick really does make one contemplate just giving up the fight). However, every time I've reached that point, another med or two has been developed. Already my current regimen (one my doc calls a "salvage routine") is beginning to fail. Luckily it's at a time when several more meds have finally come to market. My heart has the "faith" to believe these meds will stay one step ahead; but my head already knows my luck is running thin.
OMG..."fairly active anti-retroviral therapy".
FAART
ROFLMAO ;D I'm going to have to tell my doc this one on thurs.
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Yeah, that's me in a nutshell.
Ugh -- right now I'm just WAY over teh AIDS. I've spent all morning "managing" my illness, re: making appointments with retard receptionists with various and sundry specialists, getting refills authorized at my pharmacy for the 15 different fucking things I ingest daily, etc.... add in that support group last night.
It can be a bit tiring frankly.
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Yeah, that's me in a nutshell.
Ugh -- right now I'm just WAY over teh AIDS. I've spent all morning "managing" my illness, re: making appointments with retard receptionists with various and sundry specialists, getting refills authorized at my pharmacy for the 15 different fucking things I ingest daily, etc.... add in that support group last night.
It can be a bit tiring frankly.
What fifteen things? Are you back on the Klonnies!?!!
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What fifteen things? Are you back on the Klonnies!?!!
pleads fifth
seriously though, I'm on 4 HIV meds, 2 anti-diarrhea meds, 1 blood pressure med, klonnie, neurontin for my PN... and supposed to take Wellbutrin but I refuse. OK, so that's 10 things -- plus a multi-vitamin, 2 omega-3s for my lipids, and a calcium/vitamin D capsule.
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Ugh -- right now I'm just WAY over teh AIDS.
It can be a bit tiring frankly.
testify
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[“We call it ‘sins of the past,’ ” says Mullen. “We gave these patients sequential monotherapy; it was state-of-the-art at the time, and a lot of those people are alive today because of that. It got them through until HAART came along, but their HAART is not highly active, only fairly active.
OMG..."fairly active anti-retroviral therapy".
FAART./quote]
oh honey .. I love you.....
Hermie
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Being an AIDS patient can definitely turn into a full-time career. I personally am ready for a job change..... ;)
In truth, I can't complain (well I could but I won't) because I don't have NEARLY as many doctor's appointments as in the "old days". Six months without seeing a doctor? I could not go six days without seeing one in the 90's......
I think I have "MAART" - moderately active anti-retroviral therapy.
I just wish someone would tell all the REST OF MY BODY that the HIV is under control ; so "Heart, Brain, Feet -- all of you need to behave now".
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I'm only complaining because I managed to schedule four doctor's appointments all within 7 days of each other, along with 2 separate pharmacy refill jaunts and a support group meeting. I guess my thinking was to just get it all out of the way at once.
Anyway, I'm now done for the entire month of June :)
Though in 16 days I'll be celebrating my 15th year of an AIDS diagnosis, and my (estimated) 20th year of infection. If I had a webcam I'd bake a cake and live stream a podcast for the entire board, all while wearing my Stephen Sprouse lime green suit.
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I still poke my little bird neck up every time any kind of topic like this comes up, and say "being poor is the worst part of having AIDS". That's not to say that everyone who has AIDS is poor or will become poor, but it can and does happen to many of us.
I totally agree, Alan. If u're poor and cant have a good nutritious diet and easy affordable access (which mean less stress) to health care u're basically screwed. Around here if it werent for some NGOs and the fact that a lot of people have relatives "working" abroad and sending money, the AIDS death rate would be so much higher than it is
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"being poor is the worst part of having AIDS". That's not to say that everyone who has AIDS is poor or will become poor, but it can and does happen to many of us.
I agree Alan. Thanks heavens for Medicare. Where I live there are people waiting to get on ADAP/Ryan White. They have very long waiting lists.
We have some homeless shelters here also. A lot of the occupiers have mental health issues. Unfortunately, what's seen is that the people get stable, out on their own, only to return to the shelters in the near future. There needs to be much more aggresive case management with most of them, so they don't have to repeat this cycle. I'm not saying it's all their fault; I'm just saying there needs to be better follow-up.
As most of you know, I attend 12-step meetings. A few weeks ago, a young couple (in their early 20's) came in who were kicking heroin. The guy said that he tested + for hepC. There's drug problems everywhere; I don't think there's anywhere one can go where they have this "under control." A huge problem here is meth and crack. But like I said, it's everywhere. And the success rate of recovery from addiction isn't good, unfortunately. Most people just don't get it for different reasons.
In February I had my 19th year of diagnosis. I don't go to as many funerals as I used to. But people still need help, even with the advances in treatment.