Raleigh's biggest paper did a story on me

WinAce

New member
I had <a href="http://newsobserver.com/news/story/2791394p-9230706c.html">a story published about me in Raleigh's biggest paper</a>, the News & Observer; <a href="http://www.newsobserver.com/opinion/editorials/story/2792761p-9232096c.html">this subsequent editorial</a> was more unambiguously supportive than the original article.

If you would like to contact any of my legislators on my behalf, here is their contact info:

<blockquote>Burr, Richard- (R - NC) Class III
217 RUSSELL SENATE OFFICE BUILDING WASHINGTON DC 20510
(202) 224-3154
Web Form: burr.senate.gov/index.cfm?FuseAction=Contact.Home

Dole, Elizabeth- (R - NC) Class II
555 DIRKSEN SENATE OFFICE BUILDING WASHINGTON DC 20510
(202) 224-6342
Web Form: dole.senate.gov/index.cfm?FuseAction=ContactInformation.ContactForm

<a href="http://price.house.gov/Contact/">David Price, US Congressman</a></blockquote>

Thus far, I've been told all my letters to them were forwarded to Medicaid, as improbable as it sounds. But maybe if enough people create a stink, something will be done.

If anyone has had a successful transplant with B. cepacia, I would particularly appreciate your input (in the form of a letter to the editor, perhaps) which would put a human face on this whole ordeal, and demonstrate these procedures are <i>not</i> "experimental."
 

WinAce

New member
For the News & Observer, Letters to the Editor can be sent online, <a href="https://miva.nando.com/contact_us/letter_editor.html">here</a>. That link also has their mailing address.
 

JennifersHope

New member
Allan,

I just emailed this in for you, I also responded to you on the other website that you posted this on with some other ideas..

Keep up the good work and thanks for paving the way for others to have a chance at transplant in the future..

Jennifer

Congessman Price,

My name is Jennifer ( I did say my last name but am erasing for the purpose of this post). I am 32 years old and I have a form of cystic fibrosis. I am not writing to you on my behalf but rather on the behalf of a young gentleman that lives in North Carolina, His name is Richard GLenn. He is dying and will for certain see death in the near future if he does not recieve a life saving lung transplant operation. He has a serious strain of bacteria that most hospitals will not even consider transplant once this bacteria is contracted. Richard was able to find the hospital UNC to transplant him. THe hospital has better then average success rates in transplanting ppl with this certain strain.. Here is the problem. Richard at the young age of 20, is on Medicaid, Medicaid has denied him the right to live, the right to have a lung transplant because they said the transplant was to risky and he might die during or shortly after the surgery. Well he will for sure die if he does not get it.

PLEASE DO SOMETHING TO CHANGE THIS OR OVERTURN THIS SILLY LAW THAT DENIES A YOUNG MAN THE RIGHT TO LIVE. HE HAS NEVER ABUSED HIS BODY BY SMOKING OR DRUGS. HE DESERVES THE RIGHT TO LIVE.. PLEASE ACT QUICKLY... YOU HAVE THE POWER TO GIVE SOMEONE THE RIGHT TO LIVE.

Thank you for you time in this matter

( I signed my first and last name)
 

Emily65Roses

New member
Wait wait wait. You're Richard Glenn??? I just read that article because a CF friend posted it on a CF livejournal community I go to. I did not put two and two together and figure out that was you! Well damn. I actually wrote a letter to the girl who wrote the article, pissing and moaning about how insurance companies suck. I also asked for a way to contact you. Haha. Wow, I did NOT put that together. Durrr, I'm slow. I can't keep track of everything and everyone I talk to... so if you've already answered this, forgive me. But what is being done about this? Are you actually going to get the tx? Are you collecting money, or what?
 

Emily65Roses

New member
Oh hell, the contact is right there. I'm a dummy. Okay, going to write him. Thanks. Haha.

Edit: I just emailed him as well. It had the basic effect and message that Jennifer's did. Just thought I'd let you know. Heh. Plus I posted the link to the article and the contact info on the CF community on livejournal, urging other people to write as well.
 
J

jacobus

Guest
just a thought: perhaps it might be more effective to get people without cf to write letters? (or at least for people with cf not tto actually mention it in their letters). I mean, politicians think only in terms of voters and the cf population wouldn't be regarded as significant. Playing devils advocate here for a minute, one might even suggest that letters from people with cf would go straight to the waste paper basket for they would be seen as too biased and unrepresentative of the community as a whole. Food for thought.
 

WinAce

New member
<blockquote>Quote
<hr>Wait wait wait. You're Richard Glenn???<hr></blockquote>

In the flesh! Can I have a link to that livejournal you mentioned, by the way? <img src="i/expressions/face-icon-small-smile.gif" border="0">

Currently, I'm in limbo, so to speak. If I fell violently ill <i>right now</i>, the hospital would not be able to transplant me, as I have no way of paying for it. Fortunately, I haven't been sick enough yet that it would become my only hope for short-term survival, too, but I think I'm getting there.

For their part, my doctors want to correct as much of my low weight and osteoporosis as possible before proceeding. Ideally, I could manage without it for a year or two, while those issues improved (the bone density in particular just needs time and Fosamax to return to somewhat-below-normal levels); but I'm not convinced I can stay stable that long. I need to at least have the OPTION available, in case I go downhill fast.

Some friends started a fundraising effort for me at www.Save-Allan.org (but with half a million to raise, that's very daunting, as you can imagine, and a distant plan B to health coverage paying it).

I have little doubt, jacobus, that what you say can be true for Congressmen. But as living, breathing, loving, <i>surviving</i> CF patients, we put a human face on what would otherwise be cold, sterile, clinical statistics and $$$ calculations. A man who would agree, in principle, that payment shouldn't be made for a next-to-anonymous "Mary Jane" to receive her life-saving transplant, might change his mind if he was thinking, instead, of a 16-year old girl chained to an oxygen tank and playing with her puppy. Medicaid will argue these operations are unsuccessful too often to justify them as a taxpayers' expense; if enough people write in, saying "But wait, I had it done, and look at how it worked for me," such claims will ring hollow.
 

jenhum

New member
I will also send a message. Maybe I will have a teensy tiny bit of an impact, b/c I am a CFer that will be living and VOTING in Raleigh after I get married in November. Best of luck to you, please post if there is anything more we can do!
 

anonymous

New member
Hey Allan

I read the article from another CF website and I knew that it was you. I am still praying that all will work out and i am so glad that you have made this all public..

Kaitsmom<img src="i/expressions/rose.gif" border="0">
 

Emily65Roses

New member
The CF LJ community entry: <a target=new class=ftalternatingbarlinklarge href="http://www.livejournal.com/community/cystic_fibrosis/255525.html
">http://www.livejournal.com/community/cystic_fibrosis/255525.html
</a>
My own LJ entry about it: <a target=new class=ftalternatingbarlinklarge href="http://www.livejournal.com/users/emily65roses/27832.html#cutid1">http://www.livejournal.com/users/emily65roses/27832.html#cutid1</a> (Mind you, I realize the title is dramatic, but I'm trying to get people to pay attention haha).
 

Mockingbird

New member
How did other people write? I only ask because i started to fill out that contact form, then i was like, "Yeah, they're gonna pay attention to this... <i>right</i>. =-) the site says snail mail takes forever, though, because they check it for anthrax.... Grrr, stupid government. Oh, well, hopefully I'm worng about the e-mail thing.
 

Mockingbird

New member
Ha ha, WinAce, there isn't a Denver in North Carolina, is there? =-) If there is, Senator Burr is gonna think I live there, because the state on his e-mail form was fixed. =-) I guess he thinks no one outside the state would have any reason to contact him. =-) oh, well.
 

anonymous

New member
Richard or Allen?

Five years out with a TX at Duke (you dislike) with cepacia (no idea on the type, they were not typing in 2000). I will not be typed because it may impact my treatment in the future (being written off).

CF 55 cepacia TX
 

WinAce

New member
Both (spelled All<i>a</i>n, though). Richard is my first name, Allan is my middle one, and I use the latter almost exclusively online.

Do you think they'd write you off <i>post-transplant</i>, too? That's pretty sick. if true. I can at least understand, in principle, wanting to prioritize those who have the most chance of benefiting from an operation you can only give to some, but abandoning those who develop the germ afterwards sounds ridiculous. If they do that, then Duke sucks even more than I'm fond of saying it does. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

JustDucky

New member
Hello Allan!! I know you from another CF group, I have posted your article to all of the pulmonary groups I belong to (2 of which I run) and so far I know of several folks who have sent in a response to the contacts you have listed. I forwarded your article to everyone I know as well and asked them to help too....can't hurt to try. I also have the governor's addy too if anyone wants to contact him as well, e mailing him or writiing him might be a good idea too..so here it is:
Mike Easley
web site: www.governor.state.nc.us/Contact.asp
Office of the governor
20301 Mail Service Center
Raleigh, NC 27699-0301

Fax: (919)-715-3175 or (919)733-2120

I think the more publicity with this the better...like TV's and such. I really am praying for you Allan....
Many hugs Cepaciagal (aka Sunny)
 

WinAce

New member
Ugh. I had to go to the emergency room again. Hospitalized. Tres suck. On the bright side, something my sweetie did yesterday totally cheered me up, and I detail it at my latest blog entry, "<a href=http://www.save-allan.org/wpblog/?p=18>If love can conquer this, it can, indeed, conquer anything.</a>" (I also wrote a new poem and added it there).

I'm tired and groggy, but happy again.
 

jenhum

New member
On a much lighter note, I'm loving all this talk about Duke sucking. I just graduated from the University of NC and we are sworn enemies with Duke <img src="i/expressions/face-icon-small-smile.gif" border="0">.
 

anonymous

New member
I am about to send this in to FOX News. Though some of you may not support FOX, or more specifically Bill O'Reilly, he has demonstrated himself to be a champion for those in need who cannot otherwise help themselves.

What do you think? Good enough?

_____________________________________________

Dear Mr. O?Reilly,

I have been listening to you espouse self-reliance of late, and I agree with you whole-heartedly. I concur that the only way to maintain a healthy autonomy from the government, and other institutions which dull our will and senses to thrive, is to educate and prepare ourselves for the worst. Benjamin Franklin couldn?t have spoken as clearly on self-reliance as you have, particularly in light of our recent national tragedy. However, there is a small sliver of our population for which the government is uniquely designed to assist. You have subtly referenced this population among your statements, and they are the chronically ill, a population that cannot easily prepare themselves for the worst without support from our government, and who can never be fully autonomous from the support of others due to circumstances beyond their control.

To be clear, when I say ?chronically ill? I speak of a uniquely innocent population, whose maladies are constant, overwhelming and are not of their own creation; who?s ailments are not initiated by the absence of will or discipline with regard to drugs, cigarettes, alcohol, or any other similar vice. This group, also deemed the catastrophically ill, does not suffer due to their own neglect, denial, or stupidity. In particular, I am concerned with those who suffer from genuine genetic diseases like my dear friend Richard Allen Glenn of North Carolina. It is for individuals like Richard, who suffers from Cystic Fibrosis (CF), a true genetic disease affecting the pulmonary and digestive systems, that governments around the world are in part created: to protect those who cannot defend or aid themselves. And it is for this reason that I address you today. I am addressing on behalf of my dear friend Richard, who at the young age of 20, without a timely lung transplant, will likely die before the spring of ?06. Richard is unique to the topic you have been discussing in the media, such that the state of North Carolina is denying him the funding for a lung transplant (TX). And although it is not stated, but implied by their actions, the government and related medical agencies, are denying this young man an opportunity at life, so that others less deserving can take advantage of a system intended to aid the helpless, not the lazy, foolish and over-entitled.

The denial of Richard?s surgery is offensive at many levels. The most prominent and significant reason to take umbrage is, despite the dozen or so physicians who consult and support Mr. Glenn?s procedure, deeming it ?justified?, Richard is still without the hope of a transplant. Beyond this glairing discrepancy, is the unimaginable fact that an irrational and inefficient government, through medical entitlement programs, have preferred to provide Viagra to the elderly ?infirm? and pedophiles (costing tax payers $MM). These same parties are also placing alcoholics on disability and medicade, in effect paying people to get drunk, because a series of psychologists deemed the absence of discipline in consuming alcohol a ?disease?. As well, there are alcoholics, addicts and smokers who receive transplanted livers, kidneys and lungs, respectively for choosing to destroy their own body. Are not these individuals selfishly exploiting the system as a result of their own poor choices? These are but a few of the poorly directed and misappropriated funds the government has dispensed, wasting billions of tax dollars that could have been better directed toward more deserving candidates like my good friend Richard.

Since you have been such a sincere ?man of the people?, championing just causes for one and all, I was hoping I could entrust you with my concern and request to aid my helpless dying friend, who is currently being abandoned by our government, a government which seems to have had no problem funding certainly less deserving candidates. Perhaps you could bring attention to Mr. Glenn?s plight, and those bureaucrats and politicians who prevent Mr. Glenn from better days.

Here is a link to an editorial recently issued regarding my dear friend by the News Observer media publication of Raleigh, North Carolina, <a target=new class=ftalternatingbarlinklarge href="http://www.newsobserver.com/opinion/editorials/story/2792761p-9232096c.html.">http://www.newsobserver.com/opinion/editorials/story/2792761p-9232096c.html.</a>

I might add the media is placing several slight spins on Richard?s situation. One such spin, in a previous article in the same Raleigh publication, implied that the surgery was ?experimental?, which is far from the truth. CF victims commonly receive transplants, some of which present with the same aliments as Richard.

Mr. O?Reilly, if you can help, as I believe you can, you would not only be helping a good man, but you would be helping a great number of people who suffer day in and day out with out cause or purpose, and in many cases with out help.

Thank you.

Sincerely,
*****

For efficiency, here are the principals and influential parties involved in this evolving tragic event:

·Richard Allen Glenn (Friend), <a target=new class=ftalternatingbarlinklarge href="http://www.save-allan.org/wpblog/?page_id=6">http://www.save-allan.org/wpblog/?page_id=6</a>

·Dr. Thomas Egan, (Transplant surgeon and associate division chief for general thoracic surgery at UNC, wrote that a transplant for Glenn was "justified.")

·William Lawrence, medical director for the state's Medicaid program

·Burr, Richard- (R - NC) Class III
217 RUSSELL SENATE OFFICE BUILDING WASHINGTON DC 20510
(202) 224-3154
Web Form: burr.senate.gov/index.cfm?FuseAction=Contact.Home

·Dole, Elizabeth- (R - NC) Class II
555 DIRKSEN SENATE OFFICE BUILDING WASHINGTON DC 20510
(202) 224-6342
Web Form: dole.senate.gov/index.cfm?FuseAction=ContactInformation.ContactForm

·David Price, US Congressman
 

anonymous

New member
Allan

Sorry in that I did not make my statements clear. I had cepacia prior to my TX at Duke and post TX for perhaps two years. I do not culture cepacia in my new lungs at this time, yet the sinus infections may well contain the prior infections.

The response to the potential impact in the future is if a re-TX was ever an option or possible. NO DUKE DOES NOT SUCK nor do they provide me with anything other than the best of care, including a TX that had me out hiking in the mountains today (not the eastern hills). Getting a TX five years ago with cepacia was a tough sell. Recent policy changes that you are aware of, perclude wanting a label of type 3. To be quite honest, I do not think I want another TX at 80, I hope to get my current gift through my needs.

Having lived in C.H. for the TX (UNC listed me, I chose Duke) I had to deal with the war between the universities. Having graduated from a superior western school, I could have cared less yet it appears that the Duke / UNC splits families and is a religion. Both hospitals are first rate, UNC appears to have better looking coeds, neither can play football, neither has a ski team, basketball is as boring as baseball or golf/shuffleboard.

Any chance your current treatment from Oz. may render the cepacia not detectable?

CF 55 TX cepacia
 
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