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233616 tn?1312787196

SHOCKED by the Politics

What I've learned recently is that HCV has no virtually no funding state side, no research to speak of, none of the billions that went into AIDS/HIV research. Only 2 states have thrown even a bone towards public education etc. (washington state gave 400k, the most, but nothing in terms of the scope and scale needed.) (especially when you understand even one tiny trial costs 2 mil. minimum)
Why?

a. because there is a stigma attached, earned rightly or wrongly.

b. because states and feds learned their lesson on HIV, start funding and it becomes a quagmire so most states are refusing to pass even basic public health education laws on the subject, much less being willing to offer funds for people to be tested, if they WANT to be, etc.

c. most HCV people are fatiqued and depressed due to the disease, and ergo do not speak out as a group. (instead of thousands willing to tesify before our state legislature, as with AIDS, we could not muster 10 articulate people last session.) (instead of millions of emails to congress, they get "dozens only".)

d. many with HCV are actually themselves fighting all legislation, calling themselves "the innocent victims" and ergo, fighting so hard to be distinguished from those who ever "made a mistake" that they would rather see NO new funds/research/laws to deal with this disease, than to see themselves "grouped" with those who took any risks.
So instead of forward motion, we see half the HCV vocalists fighting against their own treatments and/or cures in an effort to maintain their self-righteousness!  

I'm summarizing here a 2 hour conversation I had today, but wondering if this is news to anyone besides myself and if others would like more info on how we might politically change the climate to facilitate better research and cures? I have some for those who are interested.

MaryB
56 Responses
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233616 tn?1312787196
I like ALL your points, and we certainly shouldn't deny tx.
SO GlAD you made it out and through though all this.  
Yes, Oregon is the methamphetamine state, the drugs are so close in effect I enterchange them, more abuse in this state than anywhere else state side.  
When you see these kids with problems from birth, or you see later how many teenagers are incarcerated now for life or 20 years, because they acted out after having been raised by meth addicts it really breaks your heart AND you want every treatment and help to be put in place.

we did get off a bit....
but on to enjoying our children and our Christmas....I second the vote!!!
Helpful - 0
315094 tn?1201390050
When you say methedrine are you talking about methamphetamine?  Methedrine doesn't really exist on the street anymore. Speed is methamphetamine.

Of course I think I would be a crappy mother if I was using, that is a no brainer.

I used to know quite a lot of parents who were junkies. I was frequently the one taking care of their kids, even high.  They loved their kids though.  They would never burn them with cigs, trick them out etc..No those kids were neglected though and they needed to be taken away. I regret not calling DSS on them, that is something that I have to live with for the rest of my life.  I think it is what sobered me up so completely when I found out I was prego. I DO think they would have been better parents if sober.  Although I think that the parents that are burning their kids with cigs etc. would suck as parents no matter what.     There are plenty of criminals out there that don't touch drugs.   Hitler was a vegetarian.

I think we are talking in circles because you are talking about one thing and I'm talking about another.

I am talking about not denying medical tx to an active user, when studies have shown they have similar svr rates (provided they don't drink).  Medicine and morals don't mix very well.  Do doctors deny medical tx to criminals? No, they don't.  But yet they deny junkies med tx on a reg. basis.  

You are talking about the social consequences of drug addiction.  I don't think any one here is advocating drug use or denying the harm to society it causes.  

   There are generally two schools of thought on how society should deal with drug addiction.  The first, and generally the most popular is that we should treat it as a crime, we shouldn't 'encourage' the behavior by providing services or making it 'easy' to use.
   The other view is a more libertarian approach, involving decriminalization or legalization, social services and treatment, treatment, treatment.  
    Studies have shown that countries that are using the more libertarian approach see  a drop in crime, a steep decline in the amount of new addicts being created, as well as hiv and hep c infections.  

Although I love a good argument, it's getting a little off topic, and probably belongs on another forum.

It's been fun though
Helpful - 0
173975 tn?1216257775
How interesting that methadone patients tolerate TX SX better than the rest of us.  

It's good to hear confirmation of my gut instinct that there is no reason to deny a methadone patient treatment and that their SVR rates are similar to everyone else's.

Thanks for the info.

wyn
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Avatar universal
I haven't read all the posts in this thread. The discussion on methadone did catch my eye though and I skimmed it.

I've been working at educating clinicians in methadone treatment centers on hepatitis/treatment. The program we developed has been vetted by NIH and the CDC as well as a few addiction docs because it is paid for by a SAMHSA grant and they must approve what we say. There is absolutely NO reason to deny a methadone patient access to treatment. Interferon and ribavirin is totally safe for these patients as regards their treatment for addiction. This has been proven over and over again by people who have conducted trials such as Diana Sylvestre, MD, Clinical Director of Oasis Clinic in the San Francisco area. In fact due to the pain suppression of methadone, these patients actually are not bothered as much by the sides as people who are not on methadone. The rate of SVR is also pretty much the same as for any other patient.
Helpful - 0
233616 tn?1312787196
boy billy, read a post!! Junkies have a lower sex drive on junk, the opposite is true for methedrine/alcohol. Most of the children I work with were raped by their parents when in a alcohol blackout or methadrine haze. these folks were not rapists prior to their drug addiction.

I really can't be of much help to people not in the BUSINESS of drug recovery and treatment, who think they know more than those who deal do deal with it constantly.

I cannot speak to how Jamima would have done, I can only tell you that while most moms who don't clean up are out scoring, and or nodding, their children do go hungry and neglected.
Only she can say whether she thinks cleaning up has made all the difference in her ability to love and care for her children.      
I can tell you daughtersin particular are "tricked out" by some parents, they bring home johns to their 8 year olds, so they can have money to go fix. There are extremes that make me want to see recovery be the first priority.
This doesn't mean I hate junkies or don't want to see them get treatment, it means I see things with an urgency in what is needed that some do not yet see.
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173975 tn?1216257775
hey, just check the original TITLE of this thread, "ShOCKED at the POLITICS: ,: and observe how quickly it degenerated into "no TX for junkies" advocated by the poster.

Gimmeabreak.

You are right that some people don't know what the he!! they're talking about.

Anyway, off the subject a teeny bit;  i did email you but never heard back and still can't find those pics.

wyn
Helpful - 0
190885 tn?1333025891
you don't know want your talking about...junkies don't rape as a rule..whats that??  who rapes as a rule? keep in mind we brought morphine to this country to calm people down..when you shoot dope you nod....and jamin isn't shooting dope ..she might be doing a better job with her kids then you or i did...scoring a few bags??you don't score bags you cop them...anyway maybe if you read a drug forum for a while that will help...billy
Helpful - 0
233616 tn?1312787196
you are right, rapists rape. And junkies don't rape as a rule, the drug has the opposite effect, but the neglect can be enourmous. Many children say the only thing to eat in their fridges was usually beer and mayonnaise.
The trouble here regarding, and more with alcohol and methedrine, at the addiction level, is that people who would never have done so minus those substances end up raping and even justifying it. those are just the facts. The drugs themselves alter their consciousness.

I'm just curious, with your beautiful children, if you can go back in your minds eye to when you were using, how do you think your children would be fairing? Would they be under the same warm roof and with the same full bellies. Please be honest here. Not to be cynical, just to speak some truth among women. If you were still out scoring a few bags a day.....?
Helpful - 0
173975 tn?1216257775

Push the envelope a little further and I'll lay odds that if some people didn't actually suffer from hep-c themselves, they'd be the first ones pointing the finger at those of us who ARE infected and saying it's all our fault.

What a crock.

Things happen.   People slip.  Hopefully they get back on their feet, but it's never thanks to the people who wanna pull them back down.

Best of luck to you, Jamima, to your kids and those you know still fighting that demon.  I am so grateful I never had that battle.  Heck, sometimes I feel like I'm addicted to peg.   I'm definitely addicted to sleeping pills.  I can only imagine how it would feel being under the influence of such a potent opiate as heroin.  

wyn
Helpful - 0
190885 tn?1333025891
you guys had some real good points here....i grew up with loads of my friends shooting dope..going to work shooting 3 to 5 bags...the late 60s and 70s were just that way.. everyone should be able to tx...anyway ..good luck to all of you...billy
Helpful - 0
315094 tn?1201390050
     No...you can't pull rank like that.  The system is full of people that think like you, and has been since drugs became a problem in this country.  HMMM..maybe something different needs to be done.
     Junkies don't rape children...RAPISTS do.  Your thinking is a little backwards on this. I think almost everyone in this country has lost someone dear to drugs and alcohol, so just because you 'know' a few does not make you an authority.
     Watch out, you sound like you've been in this business too long.  You sound angry, resentful, and cynical.  It's just this attitude that I found so unhelpful when I was using.  It just furthers your alienation from society, a society that continually reminds you what a dirty piece of @#@# you are.
     No, the people in the outreach programs (etc..) that had a positive effect on me when I was using were people that treated me with respect even when I was using.
Helpful - 0
233616 tn?1312787196
BTW, have spent the last 10 years working within the system, with incarcerated youth, both victims and offenders/young molesters. Without discussing specific of a case, which by law I can not do,
it would be wonderful if I could pour into you just a minut fraction of the stories I've heard.

Would love it if you could sit in with me for just an hour alone, and hear the stories of one particular young girl I've been working with for the last 8 months.  Her whole family is hooked, and minus a miracle this teen will spend her life using and/or incarcerated....we cannot imagine the anger or the harm one addiction can do to a whole family. We have to see addictions sometimes through the eyes of the children, the biggest victims, before we can see how crucial it is to use every incentive we can muster to pull people from their addictions.
JP made the right sane choice, but for every one like her there's a parent who actually teaches their children how to shoot up with them. What do you do with this reality?

It's when we discover the murdered, molested, the starved/burned/locked in boxes or closets that one's mind begins to take in what's really needed to help the addicted. It takes a lot more work and investment in peoples lives than just passing out clean needles to really snatch people and their children from the fires of addictions.

The facility I work in trys mightily, and works as much with the families as the clients (children).
However, you have to see the damage done, (like the old Neil Young song says) and try to explain to 95% of these children why they need to forgive for their own sanity the person who raped them for years, or put out cigs on them...and much much worse......then is when your heart will break.... and your advocacy pendulum may swing towards any and all more drastic solutions.
mary

Helpful - 0
233616 tn?1312787196
if I was addicted, I'd be grateful if someone would offer me treatment and explain how I could get cured and simultaneously get off a substance likely to kill my chances of surviving treatment, and also likely to increase my chances of being reinfected ten fold.

Maybe what you need to know is I have extended family who are addicts. they not only don't want off the drugs, they don't even want to know if they are HCV positive, because that would mean they would need to change, and that frightens them.
If its hard to even get people to take a test, how likely do you think it will be to get them to comply with tx, especially when "feeling good or no pain" is their daily goal.
You are on this treatment and know what it does, how likely is it an addict will do that given the painful nature of these side effects?

Their lives all have value, we need to address the safety of treatment and drug withdrawal help so they can succeed at treatment.  I'd want everyone to have the same chance at a successful treatment and a real cure.

Maybe you don't know this, but in groups, to a person, all addicts admit that given the choice between a dirty needle with a fix in it .......or no fix....they still all will choose the dirty needle.

ergo help with the addition and coming into a sane state of mind....mostly education and treatment can do this, or as in Jamima's case she had a child coming as her motivator.....
but treatment is essential for chances of SRV AND a continual cure...based on that one fact alone.

I understand you are passionate in your stance, but the fact that I look at it differently doesn't mean you need to castigate me, and hurl insults.....or does it?
I do comprehend, but I comprehend some things differently that yourself, obviously.

MAybe I should liken this to a decision to amputate. Let's say we are 2 docs standing over a leg.
the leg is gangrenous and is obviously going to take the patients life if it isn't cut off. the infection is already spread to the heart and liver and brain and unless the leg goes, the patient dies.
Now, you would say, let's get out the leeches, let's get out the syringes and lets drain the leg and save it.
I would say, if the leg were ever a leg that could be saved or walked on again, I'd agree with you, but this leg (representing the addiction and all it's reprocussions) need to be cut off, You see the bones are dissolved, the flesh is entirely rotted and the patient can either drag this rotten leg with him/her a little while longer, in which case it will destroy the whole body, or we can cut it off.....and then treat the rest of the body and restore health.
the patient may say, no...you must save the leg....the question becomes, do you want to die with the two legs, or live with just one, because that leg is going to infect and rot out the rest of you...and
even if we gave you every treatment known to man, that leg will have you right back in emergency again next year, with the other leg now rotting...
if it was my son, I'd say, cut off his leg then, and save his life.

Do you work with addicts by any chance, because I do? I'm just curious as to your experience with this population?
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233616 tn?1312787196
sorry I was so brain dead last night, the other reason the heart slows and can suffer damage is that the opiate family actually suppresses the respiratory signals, basically the brain forgets to tell the nerves to operate the lungs. that's the other part of what causes the oxygen deprivation...which can also briefly produce euphoria..,it's like being choked, only no hands nessessary.

last night my brain musta had some of that or I wouldn't have forgotten. This is a chief concern and issue with all the synthetic and natural opiate class pain killers.
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173975 tn?1216257775
I wonder if you would be singing the same judgmental elitist tune if your son, or your mother, or your sibling or your spouse or (I know it's impossible to comprehend) you, yourself, were addicted to heroin.

I think not.

wyn

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315094 tn?1201390050
Yeah well, unfortunately you cannot make those choices for people. Trust me I wish I could, I would scoop up all my old friends and we'd be one big happy family.
That is why this is a DISEASE. If people could just go out and make intelligent choices about their life, we wouldn't have drug addicts. The compulsion to use is so huge, so entirely all consuming that it takes a virtual miracle when someone finally gets sober. Last time I checked, %5 of heroin addicts will get sober.  That is 95% that won't.  I have never met a heroin addict that didn't have hep c.  Maybe the action of tx will get them sober.  It would be telling them that yes, their life has value.
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233616 tn?1312787196
Yes to endorphins, I do know that, but yes to adrenaline and to brain cell death as well.
The adrenaline kicking in is part of the response and part of what triggers the brain euphoria chemicals.
Brain damage is slower than with methedrine, or alcohol which can shrink a brain to half it's original size over time, but still there is evidence of damage with opiates, just to a lesser extent.

the heart beat is drastically effected by heroin and in hospital settings morphine.
that is what chiefly effects the oxygen levels, and when the person nods and psses out, this is from sluggish circulation and oxygen deprivation. Long enough duration/high enough dose and coma/brain death follows.
You are right, that seizures with opiates are not a problem,
but with the synthetic opiates, such as methadone, ultram etc they honey are problem at higher dosage. Remember they are synthetic, basically altered from nature molecules and have their own peculiar and sometimes more harmful side effect.

You may recall in the 70's some rouge chemist made some bad batches of synthetic heroin....no quality assurance in his methadone lab basically.....the people who shot that sythetic heroin ended up with instant Parkinsons, frozen in place for life....there was an OPB special on this.
One guy shot up, went to rob a house, and was found "brain frozen" in place with his arms still up in air as he was trying to mount the fence for a get away.

This is how he remains today, his brain frozen unable to blink, or bring his arms down..
.
so please understand, these drugs do have risks. Which is why I'm trying in my "well meaning" way to explain to you why the wonderful choice you made, and thank God you had that motivation, is the best choice to encourage all to make. I think God gave us parental love to save us in so many ways!!

The methadone may be a stop gap for those who don't have the motivation, but we want to be sure and educate folks that long term, substituting one drug for another with the intent of remaining on it... is not the healthiest or the sanest choice.
Helpful - 0
315094 tn?1201390050
I think your a little confused.  

The 'rush' from heroin is from endorphins flooding your brain (not adrenalin).  Heroin is a CNS depressant so the danger lies in taking too much, when that happens it slows everything down so much that your body forgets to breathe.  

Heroin does NOT kill brain cells.  The only time you are at risk for brain damage is if you OD for a long period and that is because your brain is deprived of oxygen.

As far as the heart issue, there is none.  I did dope for ten years, I also had a heart problem (I don't anymore thanks to modern advances), it never bugged my heart.  My cardiologist was more concerned with my coffee, coke and chocolate intake.

I have never heard of opiate use causing seizures. Benny withdrawal can, alcohol withdrawal can, and so can an overdose of cocaine.

Actually opiates are fairly non toxic and benign as far as the effects on your body from everyday use (that is not to say that they aren't extremely dangerous).  The biggest problem you get is constipation, which in the long term can be extremely unhealthy for you.

I know that some people on this forum take painpills, xanax, antidepressants (I'm one of these) to deal with the sides.

I have met a lot of well meaning people that work with addicts that fall into the same circular thinking that you seem to be a victim of, and for that matter almost everyone I know.  It's this self righteous attitude when dealing with addicts.  Were not going to help you unless you get clean.  Most of the people that I once knew and loved while I was using (if they are not dead) will NEVER get sober.  That should be their choice as it should be their choice to do tx.

The reason I got sober is strange and baffling, also highly unlikely.  I was off street drugs but drinking, it was just a matter of time before I shot dope again.  Then I found out I was pregnant.  From the moment I saw those two pink lines on the pregnancy test I knew I was done for good.  I was completely free from a ten year addiction.  Now I know alot of women that do not have that experience and they end up dragging their kids through their life battle with them.

Gotta go, one of my kids just woke up.

lol,
jamima  
Helpful - 0
173975 tn?1216257775
I agree with you; "There have been studies that have shown people that are using CAN be treated successfully." and I agree with trying to help them.

wyntre

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233616 tn?1312787196
I think you are making a great point about the methadone program, and one that should be looked into more, if perhaps it could mean a tapering down, and tx to begin at a certain point in that tapering, again for the safety of the patient.

My problem with that drug is that that, it also causes heart issues, not to mention seizures etc at high dosing, so one would still need to get down to a low level before tx would be safe.
then too, we know some on methadone may still use right? So there would need to be monitoring in any case.

thank you for not taking things the wrong way, I really am very much in your corner and trying to be helpful here. Wyn and I both know this HCV tx is really a kick in the butt of the non-friendly kind.
wanting you to succeed, and yes, thank God for caring people!! I know Wyn is caring of you also.
mary
Helpful - 0
233616 tn?1312787196
OK, I can't help it if you are having some anger tonight, except to say I wish you well and don't care to argue with you so this will be my last attempt to explain.

If my words mean nothing to you, fine, you perhaps need to read my bios.....but no. I'm not worth one cent more than anyone else, less in fact, and less deserving of tx. having made countless mistakes, and used following my own tradgedies, I see only a merciful God, merciful people, and I strength not of my own making that pulled me from that.
When you spend your free time working with the homeless and the strung out, as I have for years, you never say any of these things lightly.

that said:
I work with at risk young former addicts in treatment and molested children in treatment now, and have for the last ten years. That is now my life's work, done without pay, as many days a month as I can, which now unfortunately are not as many as my dreams all desire.
Wyn, I do know a bit about the issues and the risks associated with drug use, and the reasons many use. there but for the grace of God go all of us, is my point.

But Wyn, wouldn't you rather see a junkie get help, get off a life threatening substance before they go on two more potentially life threatening substances, namely Riba/ INF.
You've been on this stuff for about a year? Do you think enourmous hits of unknown dosages of downers would be helping you right now? Would you have even made it this far, with a habit keeping you tied to perpetual poverty or periods of homelessnesss? How would you be faring, on tx and on the street for instance??

Perhaps it would help if you read up on the potential complications of tx and pain-killers in combo.
I did, and that's why it seems fairly obvious to me how doctors arrived at their treatment protocols on this. Hopefully the cleaning up/staying clean phase one must go through is short, perhaps you can tell me

Remember if you do read that info, that a junkie will usually be taking from 3 to 10 times what a normal patient would be taking for pain.
Part of the "rush" they feel and crave from the drugs is actually the effect of their "heart about to stop" "the adrenaline pumped to save the heart",  "and their brain cells dying", all simultaneously.
Methedrine is no better, both make treatment much more highly toxic and life threatening.

That last paragraph above is the one you most need to take to heart, these are very, very serious issues making treatment protocols far, far more risky. Ask Jim or Alagirl about all the sides, minus any addiction, and you soon see this is not a prejudicial but a judicial protocol.

mary..
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315094 tn?1201390050
I am not offended, for your view is very mainstream and I know you mean well.
I do want anyone out there reading this to try to rethink this issue.
Punitive action, tough love, all of that B.S. does not help drug addicts or society. Life is just as treasured and complex for the junky as anyone else.  When or if someone gets sober has a lot to do with the resources available to them (or lack thereof).
There have been studies that have shown people that are using CAN be treated successfully.
Helpful - 0
173975 tn?1216257775
'Hopefully you can see the logic here. '

You mean YOUR logic?

Nope.  Don't see it.  I do see you're evidently very concerned about Europeans unable to get a second course of treatment but that same concern doesn't, apparently, extend to your fellow citizens.

nope.  I don't understand.  unless, that is, in some way you find those unfortunate enough to be hooked on drugs as somehow less worthy, less preservable than yourself.

Nope.  Don't get that 'logic.'   It's just the same old 'elitist' BS as far as I'm concerned.

wyn
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233616 tn?1312787196
I'll take that with a grain of christmas salt since from time to time we know we all misinterpret what others are getting at.
I'm glad prisoners get treated, just not that the general public cannot,

It's also important to explain to Jamina how the reasoning evolved. I don't think it was all non-caring based.
I think some real care went into the thought process, as it does any time someone is put on chemo and has other severe health issues.
that doesn't make me an elitist for trying to explain to her. Heroin puts tremendous stress on the heart and it already a depressant. Suicide is a #1 concern for those on treatment, so it is a double concern for those still accessing and using powerful sedatives. Their chances at succoumbing to a depressed are suicidal state of mind are much greater.
Hopefully you can see the logic here.
mary
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