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Avatar universal

Fundraising Venue

Has MedHelp become a fundraising venue for one person now?  I don't see how can they allow that given the stance they take. What about all the other people who whose circumstances are beyond their control and can't afford the medications?  Just because they can't capture an audience with fluent writing or flowery prose doesn't mean they're any less deserving of help.  

That whole thing doesn't add up to me anyway.  
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Avatar universal
and my apology to you all as well, sometimes between A and B I get lost making my point...Heated yes, but no offense meant to any of you.

the best to all of you, Pro
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Avatar universal
Well said
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475300 tn?1312423126
Elaine, I guess that is why this is called "Hot Topics".  

I honestly didn't like being thought of as uncompasionate and unwilling to help, which is how I took Pro's post.  We all struggle and as far as muraji goes he declined "help" as far as I read in his post.  I quit reading his posts after a while.

Sometimes I myself post in the heat of the moment, wasn't the first time and probably won't be the last.

Denise
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Avatar universal
My sincere apology.
Elaine
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Avatar universal
And I congratulate you Proactive for your level headed approach to dialogue and disagreement.

Mike
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Avatar universal
I'm done with this subject, but offer congratutions to you kindredsouls for having figured out the navigation of these boards in just one weeks time, took me wahile.
later, pro
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179856 tn?1333547362
Pro,

I dont think it is a matter of compassion as much as - there are so so many how do you help just one and not another?  You know we all want this beast killed in every last person but just think of the folks who have treated already but now in different economic circumstances dont have insurance for the new PIs?  Some of them I have known for many YEARS.  I dont have two nickles to rub together but if someone were to need it and I had known them and how aggressively they have treated and how much they WANT to treat again - I would give my one nickle to that person.

That does not mean I am not compassionate but believe me - there are priorities and I'm sorry I dont know this person at all and dont really know what their agenda might be.  It is the internet and you know i am cynical to say the least.

If I could help a Mr. Beagle Bailey or a Trinity get through treatment I would move hell and high water to do so.
And the list is much longer than that of relapsed/non-responder friends. Where do we pick and choose - we are just advice on the internet and not a foundation.

Sorry bad typing on this little netbook at home today.

I dont think anyone has more compassion then the folks on here. PERIOD.
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Avatar universal
I believe you all have made my point for me, my point wasn't murari specific, it was about need and help.Some of you needed help, would you have declined it if offered? Perhaps a few SOUGHT help from the drug maufacturers through their assistance program, would you have declined assistance if offered? Some don't even have the oppurtunity to ask for that assitance, it isn't offered by the drugmakers...How can you fault anybody for attempting to help anybody?

and Elaine, none of what I posted was directed towards you, period. GSDgirl I'm self employeed as well, I pay the $630 a month on myself ,so I know how it feels as well (not to mention that 18% self employment tax on top of the federal-that's a subject for another day.)
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Avatar universal
I am not without compassion Pro, nor do I think I'm taking a moral high ground.
I've helped many people Pro.  It was merely a suggestion.   I don't know if it's
doable or not for Muraiji.  I do wish him the best.

I have many friends , Pro, in far worse shape, financially,  without health care,
need TP's and the list goes on and on.  Some are waiting to tx again and/or
for the 3rd or 4th time.  While I can't help them all, I do what I can.  Some
don't have jobs...etc...get it?

I would have done anything to save my son's life...anything.....everything.
Had he not got so sick  so fast, I would have moved heaven and earth to get him listed
to a different state...something !!!!!!!!!!!!!!!!!!!!!!!!!! a different county ...YES !!!!
Orphanhawk went to Taiwan...to get her much needed TP. Came back to the
states after. As far as I know , she is doing very well.

I know what desperation is.  I know what it feels like to be on the streets
without a home.....living out of my car with my son, when he was a baby, when
not in the hospital for one reason or another.  

I try to give and have compassion and I've lived my life accordingly.  

Without giving my life's story, darn it, you have no clue what your talking about.

Less fortunate ones? you're preaching to the choir.  
Yes, less fortunate ones......not a liver in sight !!!!! for my son or many others.







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475300 tn?1312423126
Listen up, we are self employeed and not rich by any means but we pay our premiums and our high deductable.  Hopefully the money will be in the bank by the 10th so we can pay that premium that went up again this month.

I still owe money from my lousy 24 week TX 3 years ago.  I do have compassion BUT he has to want to help himself also.

IF he needs the tx to live instead of die then YES I would move for 48 weeks or 72 or whatever.  If we/he have the will to live then we/he should want to do what it takes.  
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Avatar universal
You can help whoever you want to Proactive.  Moral high ground my a-ss, I happen to be one of those who has no health insurance and no means by which to treat the hepc but you will never see me slamming big pharma or writing farewell cruel world journals and  then turn around and thank everyone for any donation they can give because of my unfortunate circumstances.  The person in question has constantly flipped flopped between hating big pharma and the drugs that will cure him or living with the disease and the consequences.  It is so obvious he is in need of more than monetary donations, that being he needs to get his mind right first unless you people just like shoving money down rat hole.  Not for nothing, he isn't the only one who's in a delicate emotional state.  

I'd much rather help someone who knows exactly what they want, not what they think they want, depending on which way the wind blows. No one can stop you from saving any soul you'd like but the kicker is people don't have to agree with you.  You can disagree all you want but you are not judge or jury.
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Avatar universal
and by the way, it appears to me that some have choosen a bit of pretty friggin high moral ground to stand on, in being critcal of other's attempts to help someone or anyone for that matter.

I think it isn't only the health care system that's needin fixing.

Pro
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Avatar universal

Ahh, nothing like the smell of sweet compassion in the morning.
I'll bet if Merck and Roche got rid of their compassionate care programs, it might lower the price of the drugs for those fortunate enough to be able to pay their insurance premiums
or out of pocket costs.
"What about all the other people who whose circumstances are beyond their control and can't afford the medications?"
I'd hate to waste my time repeating what you have already attempted to do to help those less fortunate ones. So what have you done proactively to help them?

"It was mentioned that he could go to England (?) and treat for free.  nuff said "
Guess it would be an easy solution, I mean heck, you could just up and leave your friiends, family,dogs, animals,homestead and up and move to another country for treatment , right?
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Avatar universal
"This is quite an early proverb in the English language and, as such, might be thought to contain the wisdom of the ancients. The notion was known by the late 16th century, when it was expressed in rhyme by Thomas Tusser in Five Hundreth Pointes of Good Husbandrie, 1573:"

" A fool and his money are soon parted"

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Avatar universal
To quote P.T. Barnum:  "There's a sucker born every minute".  
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Avatar universal
Sounds like there is tx options out there. Sometimes we need to pull up our boot straps and do things we would rather not do if one is really serious.
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475300 tn?1312423126
It was mentioned that he could go to England (?) and treat for free.  nuff said
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179856 tn?1333547362
I feel very bad but there have been many people who have come and gone and will come in the future who have no coverage for meds.  If we tried to help them all we would have to be a real foundation otherwise how do we know who is really ill or who might be just looking for money? How would you vett out who is real and who is not?
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Avatar universal
I hope I'm not speaking out of line here,
Well, I think some people are trying to help Muraiji out.
Granted, we all have to worry about jobs etc.

Most of all health care.......if you don't have it...you're out of luck !!!
That was the first thing they checked on for my son's TP....insurance
and that is sad:(

When is the Obama care supposed to kick in? maybe, Muraiji should come
to the states? get a job , and then get health care? It's worth a try.
He might have to search long and hard for a job ...but , I'm thinking
it would be worth it to get Insurance to pay for is meds so he can tx?

Just thinking out loud.  Thank you, new here, just my opinion.
Elaine
  
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Avatar universal
I hear you GSDgirl, its a mess for so many people and I don't know see anybody bailing us out.  My mortgage is at 7.125% and I can't refinance because my finances are such a mess.  Banks are not gonna play nice.  I don't even want to think about what happens if I can't work on triple therapy.  People with perfect attendance are losing jobs and losing their insurance.  Its no time to be sick thats for sure.
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475300 tn?1312423126
Truthfully I thought he was destitute but he seems happy where he is in life.  Granted he could move for the duration of TX and it all would be covered but he chooses not to.  And therefore I would not donate when TX could be taken care of.  There I said it.

We have 3 businesses and no one is offering a government bail out to help us.  Does it bug the living daylights out of me.....you betcha!  We work and look for ways to just make it.  I couldn't refinance my house at a lower interest (now 6.25%) because there is too much equity,,,,,,does that make sense, not to me.  
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