YOUR HELP NEEDED!

[Guest guest]

Dear PF Support Grp Members:

Many of you don't know me; I'm a " lurker " on this board. I read

most posts but don't often write. I'm an IPF pt, 60 y/o, not a

candidate for transplant, currently participating in the perfenidone

study & , have been stable for a little over a year. Even tho Social

Security says I should just bite the bullet & get a job, I no longer

expose my impaired immune system to a job site other than my home.

Consequently, I spend a lot of time on the internet & trying to

educate & advocate re this disease.

In my previous profession, I had reason to monitor government

propaganda and funding of the domestic budget since the early

1980's. I've watched the Social Security disability budget decrease

dramatically while I've heard untrue stories of families defrauding

the government with bogus claims (claims approved by agency

employees & doctors; thus the use of the word Propaganda). I have

seen the mental health system taken apart and bridge abuttments

become the new in-pt treatment facilities. The growth in the

numbers of the homeless & working poor is not simply because they're

shiftless folks who don't work hard enough. Our health care system

is on it's last legs for over 45,000,000 people who cannot afford

insurance, much less health care. Over time, I have reached the

conclusion that those of us who no longer contribute a third of our

income to the government's larders, who are not affluent, are not

lobbists or management of large corporations have become what I

call " disposable citizens " .

The Coalition for Pulmonary Fibrosis (not this board) has designated

Sept 23-27, 07 as Pulmonary Fibrosis week and some of the members of

the Coalition will be heading to Washington to contact Legislators.

Many of us cannot go, thus are being asked to write letters to our

legislators, telling the legislators our stories about how our

disease has affected our lives and our families.

Please also ask your legislators to support House Concurrent

Resolution 42 and Senate Concurrent Resolution 182 by becoming co-

sponsors. These are educational bills requiring no funding but they

have landed in committee where most bills die. To come out of

committee, they must be merged into a single bill with the same

language and the legislature must demonstrate a desire to pass them,

I.E., pressure. Please also ask your legislators to eliminate the 2

year waiting period for Medicare for those receiving disability.

I am attaching sites that will help you do this:

www.FPF.org

www.coalitionforPF.org

To find your legislators:

www.house.gov/

www.senate.gov/general/contactinformation/senators_cfm.cfm?state

To read bills:

http://thomas.loc.gov/

PLS: ALSO SEND A COPY OF YOUR LETTER TO:

ledwards@....

Include pictures of yourself & your family if possible to make it

more personal. Lynley is going to Washington for IFP week; she is

not a pt but has pts in her family, thus is at risk. She will

download all of the letters & pictures & will make sure that each

legislator they contact receives copies of all the letters,

regardless of state or district. This is important because we are

unknown to them. Most of them do not realize that Charlie Norwood,

R-Ga, died from this disease. Nor do they know that Baird's,

D-Wa, father died of IPF and that Castle, R-Del, has lost 2 siblings

to IPF.

Those of you who are on study medications might also want to check

out www.abigal_alliance.org. They advocate primarily on behalf of

cancer victims, however, their petitions include others with life-

threatening diseases. Their issue is for folks like us to be able

to get potentially life-saving study meds prior to formal FDA

approval if all other treatments have been pursued & are ineffective

or inappropriate for the pt. Current regulations severely inhibit

this. Thus, if, as I suspect, have perfenidone in a level III

trial, I have no assurances of getting it in a Level IV or during

the down time it takes for FDA approval.

Please help! Take care of yourselves & your loved ones. Enjoy the

life left to you and yours. bf

PS. I am not a member of the caregivers board but would like this

post to appear there as well, if possible. thx, bf