Re: interesting - - My Rant on the Arava Petition

[Guest guest]

< -- rant on -- >

This has been out for several days and I did some checking into

the " Private Citizen " website and other information. I am truely

concerned that this watchdog group has petitioned for the ban on

Arava. Lets see, 22 deaths, that may or may not be totally

attributable to Arava, out of how many thousands of prescriptions

that have helped a lot of RA sufferes when there was nothing else

that works for them. RA itself is a risk and so are many of the other

treatments we take so we can lead more normal lives.

I have recently read and been involved in other discussions on this

topic on other groups. A lot of those I have spoken with do

NOT want Arava banned, neither do I. Besides, I don't like some

watchdog group founded by Ralph Nader deciding for me that I do not

have the right to make my own decisions on what risks I can or can't

take. " Public Citizen is a national, nonprofit consumer advocacy

organization founded by Ralph Nader in 1971 to represent consumer

interests in Congress, the executive branch and the courts. " You can

check out the " Private Citizen " web site at: http://www.citizen.org

The full text of the petition can be seen in PDF format at:

http://www.citizen.org/documents/1614.pdf

Myself and others have sent letters and e-mails to the head of

the 'Dept of Health and Human Resources' asking that Arava not be

banned based on this petition. Below is the letter that I wrote:

=======================================

Mr. Tommy G.

Department of Health and Human Services

200 Independence Avenue, SW

Washington, DC 20201

Mr. ;

Please do NOT remove Arava from the market. An organization called

Public Citizen has taken it upon themselves to petition the FDA to

take Arava away from those of us that need it. Their petition is at:

http://www.citizen.org/documents/1614.pdf .

Myself, like so many others with Rheumatoid Arthritis, are in need of

the Arthritis Drug Arava, also known as leflunomide and produced by

Aventis. There are those that have been on many of the other Disease

Modifying Rheumatoid Arthritis Drugs but find ourselves still trying

to find a treatment that will help us to lead more normal and

productive lives. Those of us that live with this disease everyday

know the risks involved in the medications we must take. We also

know what our lives would be like if we had no more options available

and all other treatments have either failed or have produced side

effects that may be even more life threatening to some of us.

I question whether the group Public Citizen and the individuals that

would like to make this treatment no longer available have ever

experienced the disabling pain, fatigue and disfigurement that is the

future of those with this disease, Rheumatoid Arthritis? For those

who suffer with RA, the availability or Arava has finally given them

a chance to live a life closer to what the healthy consider normal

lives. Their comparison to Methotrexate may or may not be

legitimate, but does no good for those like myself who have had other

severe side effects or who no longer find relief from Methotrexate.

I believe that strong education to Doctors and Rheumatologists that

would prescribe the drug should be considered and implemented before

such drastic action, such as banning it, takes place. It is possible

to more closely monitor patients for possible liver complications and

stop it's use if necessary. Please do NOT eliminate the last

recourse for many Rheumatoid Arthritis patients based on a public

advocacy group that may or may not even understand what we and our

families must live with every day, for the rest of our lives.

Sincerely,

Lucy Summers

=======================================

Ok, I have said my piece. I hope every RA sufferer will take a long

look at both sides of this situation and make up their own minds. If

you, like myself decide that you do NOT want Arava banned, your are

more than welcome to use my letter. You can use it as or modify it as

you choose. The regular snail mail address is in the letter. The e-

mail address for Mr. is: HHS.Mail@... I also sent a

copy my letter to the " Private Citizen " group at: hrg1@...

< -- rant off -- >

I apologize, I know this is somewhat of a long rant, but I feel I

have to do what I can to at least help make sure the FDA gives all

sides of this issue equal time to be heard. Also, I hope others will

give consideration to this response and maybe send their own letter

to Mr. .

MomBom - ‹©¿©›

" Never let it be said that I didn't do the least that I could do. " -

Hawkeye Pierce

> This was sent to me and I thought it important to pass it along.

>

> Lynn

>

> Here is an interesting article:

> http://content.health.msn.com/content/article/1834.50428

> Arthritis Drug Too Dangerous, Group Says

>

> Public Citizen Calls for Ban on Arava

> By DeNoon </content/article/1756.53105>

>

>

> March 29, 2002 -- The rheumatoid arthritis drug Arava should be

banned,

> a consumer watchdog group says.

> Arava is linked to 22 deaths in its first three years of approval,

> according to FDA data obtained by the watchdog group Public Citizen.

> Twelve of the deaths appear directly due to liver damage from the

drug.

> And that's just the tip of the iceberg -- the deaths were among 130

> severe liver reactions, including 56 hospitalizations.

( -- snip -- >

>

> © 2002 WebMD Inc. All rights reserved.