Meds, Mind, Body & Benefits > Mental Health & HIV

HIV Meds and Mental health

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Iggy:
I very much agree with you about the issue of what meds can, are and will do to our bodies, both physically and mentally.  I also am happy to see that you state that you are not in any way suggesting that we do not take the meds but want there to be a more open exploration of the effects that many of us deny (whether due to fear or just being unable to see it in our current lives) are having and will continue to have on us.

I read your other thread about the book project and you doc freind and wonder if you would have better access than most of us to some ideas of where to get the push forward on such studies? 

ThePerfectStranger:
Thanks Iggy I appreciate your response.

I wish it were as simple as being in the healthcare industry and having doctor contacts and so forth to get this ball rolling but unfortunately there's a big obstacle in the way.  The big healthcare companies don''t even want to pay for the money it should be spending to find a cure for this disease (after all it IS much more profitable to them if we all have to spend the rest of our lives taking THEIR meds than it would be in the long run for them to actually cure it).  If they can't be bothered with that kind of research you can pretty much guess where their priorities are in regards to researching things that won't come to a real head until most of the main money makers in the healthcare and research industry are dead or retired.  Someone else's problem somewhere down the line and why bother with that when it will only cut into their current outrageous profits?  Despite all the drugs they have given us to make this disease manageable for the most part they are NOT our friends nor do they really care to cure us.  Cureing us puts them out of a job.  Leeting us go crazy and suffer major organ damage ensures future business for them and their kind.

Unfortunately the doctors, for the most part, are caught in the middle.  The reality is independent doctors are disappearing at an alarming rate to join the big couple of health "care" organizations.  The ones who don't join do their best not to rock the boat with them because the fact is they run things now - your doctor and his opinion and training is often the last consideration to a company whose main business is actually to make money.

To a certain extent I think the same thing happens with the Dental Industry.  No one will question or debate the enormous importance of good dental health to help ensure good overall health and yet (for some odd reason) Dental Health is not covered by any government run health plan (Medicare, Medcaid etc). 

I think the only way these things are going to change is if we as patients and tax paying citizens start grass roots campaigns informing people about these issues (you would be amazed at how many people don't know there is no Federal Dental Coverage or that there is no research going on about the long term effects of the poisons we HIV'ers have to take on a daily basis).

The few independent doctors left can't afford to rock the boat without the chance of repercussions from the Health Insurance industry and the insurance companies aren't going to do it voluntarily.  Many politicians who are in the back pocket of the health insurance industry aren't going to do much either without a lot of prodding from their constituents.  So that leaves it up to us to raise hell about these things to anyone who will listen.  Start a petition, spread pamphlets,write all of your elected officials and if they don't respond then run for office yourselves.  Whatever it takes to make people wake up to these things and take action to correct them. 

Not the best answer I know but it's late and my brain is officially shutting down now and the autopilot is about to kick in...

Email me or PM me if you like or have any suggesions or would like to participate in my "project" (it's gone from a simple little joint induced idea a couple of days ago into a full blown concept that's growing so fast my head is spinning - that's what I get for having an idea huh? lol)

Peace!
Brian

Smoothstone:
Thanks much. You point out a potential gap....baseline assessment...anyone already working on these issues? activistwise, policywise, service deliverywise, researchers...the of the latter are inplace and have a history and hopefully agenda...which would be good to learn about and share with other potential activists...and researchers and some docs will  love our push as consumers, activists to get more funding, higher prioritizing...what is our current activist mental health agenda...who, how, when, where...We didn't use to have the internet, but today it's easier to network. And we could think globally too...the impact is global.
       I'm interested. We have potential allies to identify and then present an agenda to. Always thinking "next steps? who, when, where, timelines, communication systems to network, to integrate new people overtime...assuming that others will join the momentum...this is relevant activism for PWAs. 
       On the hopeful front...20 years from now some of us...perhaps taking a subset of medications...place your bets...will be saying..."well back in the mid 90s, when we were desparate and people were dying of AIDS , we starting taking these new drugs...and we're still here" and "we dont have alzheimers at the typical rate", and we dont have...but we do have...  positive potential outcomes. Some of the impacts can be surprisingly positive too. Your monitoring point is essential...I would think there are already some researchers doing just that...who, where, how, feedback time from we consumers. 
       I got ziagen in a dementia trial...experienced a comeback capacitywise...have experienced horrific side effects from some drugs, yet remain on my current combo since '97 and functioning...relatively well to date...perhaps delusional and sense of humor in tactful.        We may need to create a community response to get momentum on this...we've done it before. We have some institutions in place which we might be able to piggyback this priority   AMFAR could assist. Project Inform did an immune thinktank, could be interested?. Treatment Action Group is brainy?Coalition relationship with Alzheimer activists? researchers? Experienced activists ready to reactivate on something very relevant futurewise.
      I've seen dozens of PWAs with dementia, too many possibly untreated on the AIDS ward of Laguna Honda Hospital in SF...most single,poor, relatively if not totally isolated, with minimal if any advocacy.Some dementia is treatable.

 The issues you raise are compelling . Let's network on this. I'll check with Dr. Richard Price at SFGH and reportback. Back to sleep. Hank   

Dragonette:
Hi Brian.

Nice to meet you.

It would be difficult to research. First b/c of all the different meds, some of which affect the brain more (sustiva), others less. Second because of the changes in life that HIV brings which themselves can cause anyone to go nuts (isolation, discrimination, failing health, poverty, etc). Third because a lot of poz people continue to take other susbstances. Fourth because you would have to discount any prior problems before drugs and also dormant tendencies. It has not been possible to prove conclusively that marijuana for example cuases psychosis in chronic use even though there is much more than anecdotal evidence about even a single use inducing it in some individuals, yet it is not possible to prove scientifically. I do know that many people go nuts on HIV meds but many others don't. Very hard to say, the incidence of depression & mental disorders is so high anyways.

This kind of reminds me of the research that smokers get less alzheimer. Well ine reason could be they get it less because something else gets them first... very hard if not impossible to prove. Depression is alreay associated with HIV. Dementia and foginess too. Hard to say what is HIV and what is meds. But any med that you take over time will have an impact, then again, the most amazing quality of the human brain is its plasticity - the ability to learn, adjust and adapt. You can see even people with a hole in their brain that have learned to function normally and compansate for damaged areas, so I prefer to be optimistic and think that we can handle the effects of long term med use. After all, once they are effective and the virus is depressed, they remain in the same level, the levels don't increase over time.

Regarding the unprofitability of a HIV cure, I don't mean to dispute you, I have no doubt that the pharma companies are immensly greedy. And yet, if we take this view, what is the incentive to find a cure for any other disease, or a vaccine for it? The history of medicine shows that it is not the case. As huge as the HIV market is, compared to the other meds it is a drop in the bucket. The pharam companies also do not work in a vaccume and depend on global funding not just profits, and the interest of the world ultimately is to cure the diease because even in the west it is costing so much to keep us alive. I have no doubt that there are very sinister things going on in the phrma boardrooms, but I don't think that they are not pushing for a cure, if only because the first one to reach a cure will hit an enrmous jackpot and push all the others out of competition.

koksi:
I am curious what specific symptoms we are talking about.  Can you be specific about what aspects of mental health and psychology are affected by treatment?  I would be curious to hear from others about this as well... just what sorts of psychological effects long-term treatment has.

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