A CHANCE FOR US TO BE HERD!!!!!!!

[mjcky]

Hi, I am a disabled vet from ky and i was talking to the D.A.V. and he suggested that i find as many people i can with the same problem as me... first of all i went through the treatment (Pegintron, Riba) a few yrs ago. was on it for 1.5 yrs. and since then i still feel like I am on it..i started having seizers and got diag. with epilepsy.. what do you know i read the prescriber info for PEG and that’s one of the effects... any ways none of the dr. think there are any effects after tx. WHAT????? the manufacture for the meds say this in the report... the dr. are to F****** dumb to read in to this.. or it doesn’t mater cuz they get there pay check if they do or don’t, so they don’t... If we get all together i Will go to the V.A. Med board and explain our case, they said if i can get enough people Names, Address, numbers, Exc. that they will start documenting all the post tx effects in the medical world so all the dr.'s in the world will see this is real and not made up, every ones help will be greatly appreciated, ya'll e-mail me if interested (m.***@****)Thanks and God bless

[FlGuy]

Sounds like a great idea!  People sending personally-identifiable confidential information to an unknown person as the result of a single forum posting on the internet. This idea has legs!

[mjcky]

o.k. i understand if you dont want personal info. i guess i can try to giv the med board screen names and when they want to talk to you i guess i can post there number so you all can call them... i like many of you are suffering and i would like the dr.'s to stop thinking i am faking when im not! Now is our chance heard

[Willy50]

Years ago Lloyd Wright attempted a class action lawsuit.  I believe that the law firm used by Erin Brochavich may have been assisting.  I don't think it ever went anywhere.

The black box warnings may alleviate some liability.  Basically, as problematic as the treatment may be there is a body of evidence which suggests that remaining infected may be less safe.  People pay their money and take their chances.  Many are cured with no problems, another group cured but with *some* issues.  The most unfortunate group is neither cured and suffer some serious longer term and even permanent problems.

If the treatment were verboten due to the issues, however...... many people would die or suffer worse issues than the treatment creates.  

It is not perfect.  treatments will likely get better.



In the meantime.....I agree that the companies who manufacture and sell TX should find ways to help diagnose, treat or alleviate symptoms that their treatments may create.  I'm with you on that for sure!!!  There are a large group of people who could use help.



best,
Willy

[mjcky]

it wont be a lawsuit it is just proving long term effects to meds. the V.A. Med board is interested in what i have to say. its just going to take a lot of proof

[justme53]

What is the ultimate goal of collecting this information on post sx of HCV treatment? I can't imagine any agency would accept a list of post sx as proof that they were indeed caused by the drugs..... and a connection is going to even harder to prove.

I'm kind of a wet blanket on this subject, I know, but the Rx info that comes with the meds is also there for US to read and base our decisions accordingly.

Even on this forum, we hear about many post side effects...there's also a health page devoted to it. We know it's a reality, but I just don't see how hitting up the VA is going to solve anything. There may be some Dr.s that don't see the connection, but I'd be willing to bet any hepatologist worth their salt is aware of them all too well.

It's a gamble, that's for sure, but the alternative us late stagers isn't all that great either.

[Mary4now]

Sounds like mjcky has a good point, the energy and determination to be heard and the motivation to pursue this goal.  i hope you get the support you need.
I have not treated yet, but it sounds like this could help those who have treated and are experiencing the reactions.
Good Luck
M4now

[mjcky]

I guarantee they will listen cuz when your 100% service connected Vet, they kiss your *** because its there fault you got hep c. the prescriber info i was talking about is not just any body can get a hold of i know a pharmacist.  hitting up the VA is going to be the best way to go, it is the biggest health organization and if the government adds this to there books you can bet it will be in the civilian books soon after.

[Bill1954]

I agree with justme53; what are the net results?

In the end, you have a list of patient-stated side effects; not exactly an objective method of gathering information. Especially when all of this data is already available via scientific method from reputable sources anyway.

And of course, as mentioned above, there’s a level risk associated with IFN use. It’s a calculated risk; that’s why we sign interferon waivers prior to use.

You can scream and yell all you want, but to what avail? Do you think you’re going to tell the VA something they don’t already know?

I hope your problems resolve, and soon; but I don’t see this as a way to accomplish anything—

Bill

[Bill1954]

“I guarantee they will listen cuz when your 100% service connected Vet, they kiss your *** because its there fault you got hep c.”

How on earth do you propose to prove culpability?

I don’t mean to sound antagonistic to your cause, but you’re not the first vet to have dealt with this.

Bill

[Rockerforlife]

Its criminal how USA treats the vets,the very men and women who fight for the counrty are treated like dirt.They return after fighting for our freedoms and right and have to fight for them when they return....someting is terroriby wrong with this picture...someone outh to be ashamed and

hanging and shaking head


"Nothing is more disgusting than the crowing about liberty by slaves, as most men are, and the flippant mistaking for freedom of some paper preamble like a Declaration of Independence, or the statute right to vote, by those who have never dared to think or to act."

[mjcky]

No Im not the first but if we all go at them at the same time we will make them hear us!!!

[mjcky]

I did not sign a waiver

[mjcky]

it can happen if we get together!!!!

[seabean]

You commented that it's the VA's fault that you have HCV...........how is it their fault?  Did you have a transfusion?

I'm sorry that you suffer from seizures from the tx.  I wish you the best!

Seabean

[mjcky]

Service connected means they claim responsiblity for what happened to me while in active duty.

[Teufelhunden]

Whether you are 100% disabled or 30% as I am, the VA looks at claims the same way, everyday.   We're just a number to them. The people who handle our claims are just like you and me pal. They have a family to take care of, they have bills, they have their own problems to deal with.  They come to work, do their 8 hours and go home. Raising cain with the VA is not conducive to you or the rest of us vets.  If you want to raise the flag, write your congressman or senator. Believe it or not, they do sometimes listen. There's also plenty of Hep C websites that you can discuss your issues. HCVets.com is one.  To prove epilepsy was service connected is going to be hard if there's no record of it in your medical files. To prove epilepsy was caused by medication due to the treatment of hepatitis c is fine, as long as you are receiving disability for hepatitis c. If you are not receiving disability for hep c, don't even bother putting in a claim for epilepsy.  While the DAV, VFW, VVA, American Legion, and the rest those organizations that are there for us are great and they provide a wealth of information, don't rely on what billy bob at the "V" told you to do. When dealing with the VA, you better have your ducks in a row. Good luck. Teufelhunden