California Outrage

[SJAS]

I have been involved for the last few months with the Lung Cancer Alliance CA Steering Committee trying to get an LCAM proclamation from the State of CA. It has been an arduous, frustrating process with the state dragging its feet all the way.

Today a proclamation was passed - only not the one we had fought so hard to get approved. Here are the contents of an e-mail from our committee Chair discussing the proclamation.

The good news is that Governor Schwarzenegger issued a lung cancer proclamation today, and it has been posted on his web site! Go to: http://www.governor.ca.gov/state/govsit ... mepage.jsp Then go to press room and then go to proclamations.

The bad news is that three of the four paragraphs of the proclamation are all about smoking which is exactly what we feared and fully expected. Nothing at all about screening, nothing at all about the majority of people diagnosed are not current smokers, nothing at all about compassion or advocacy for people living with lung cancer, nothing at all about this disease being severely underfunded given the huge numbers of people who suffer from it. Nothing at all about trying to change the way this illness is perceived by the public.

I ask you to contrast this proclamation with one the Governor issued in October declaring Breast Cancer Awareness Month in which he talks about the "devastating medical, emotional and financial effects" for this illness and talks both about screening and treatment. Once again, lung cancer is not worthy of the same language.

The stigma is alive and well in California.

This proclamation is an outrage and a slap in the face for all those with lung cancer. It is particularly painful for me so close to losing Steve, a neversmoker. Please join me in spreading this information so that we can fight the negative fallout from such a proclamation. Please post it, send it to others - whatever you can think of to make sure that people know this does NOT represent lung cancer awareness.

Thank you for your help.

[ginnyde]

Joyce,

You are so right and I don't know what we need to do to change this perception except to keep talking about it to everyone at every chance.

I commend ABC for its efforts for LCAM with it's series Quit to Live but again it is based on the smoking aspect of lc. Granted it plays a large role in contributing to the disease BUT not always. And having smoked or not should not affect funding and research to help people with lc.

My daughter has epilepsy and my husband died of lc, both diseases with stigmas. I spend a lot of time trying to change people's perceptions about them. I bet a lot of people think I am a big fat bore, but frankly Scarlet, I don't give a damn.

And Joyce, as you said, this kick in the pants happened so fast after Steve died, I am sorry.

[Nancy B]

Hi Joyce,

I just recently joined the LCA Calif. committee and when Nancy e-mailed what the gov. had done, I was just sick. Is there any thing we can do to change this? It seems the year 2005 was mentioned. Maybe we can start now and get a proper proclamation in place for 2006.

Please accept my condolences for the loss of your husband. Thanks for your work to get the word out about lc.

Nancy B

[SJAS]

Ginny, Katie & Nancy,

Thank you for taking the time to respond to this one. Ginny & Katie - you have always been leaders par excellence. Katie, could you e-mail me a copy of the wording of your TX proc. at lcaware@earthlink.net?

Boy, I sure wish we could change this, but I am afraid about all we can do with the actual proclamation is a symbolic burning of it on the Capitol steps. Instead, perhaps we can use it to make the general public aware of how entrenched the stigma is and create a public outcry for change.

As painful as this is for me, it breaks my heart for the Chair of our committee, a 5.5 year Stage IV survivor who never smoked. She has worked tirelessly on this effort from the moment SHE initiated the proclamation request, only to be told that a proclamation was FINALLY going to be approved but the language was CONFIDENTIAL!

[bunny]

give 'em hell! that's outrageous. what a slap in the face.

xoxo

amie

[Andrea]

I just saw this now. How disgusting of Arnold What amazes me the most is that I would think with his Hollywood connections, and the publicity of Dana Reeves, he would know better.

[karen335]

That proclamation needs some additives.......

[Connie B]

Wouldn't you think he would no better when he has that big TURD (Cigar) hanging out of his mouth??? WHAT THE?????

[Connie B]

Here is what the State of MN's Proclamation Reads:

State of Minnesota

Proclamation

Whereas: lung cancer is the leading cause of cancer death in both men and women in Minnesota, the United States and teh world, this year killing more Americans that breast, prostate, and colon cancer combined; and

Whereas: former smokers and people who have never smoked comprise the majority of new cases of lung cancer each year; and

Whereas: there is currently no standard screening for lung cancer, and funding for lung cancer medical research falls far short of that for other less fatal diseases; and

Whereas: the Allinance for Lung Cancer, Support, and Education (ALCASE) is dedicated to informing and helping people live with lung cancer or at risk for the disease; and

NOW THEREFORE, I JESSE VENTURA, Governor of Minnesota, do hereby proclaim that the month of November shall be observed as:

LUNG CANCER AWARENESS MONTH

In the state of Minnesota

STAMPED SEAL HERE

IN WITNESS WHEREOF, I

have herunto set my

and caused the Great

Seal of the State of

Minnesota to be affixed

at the State Capitol

this 12th day of

October in the year two

thousand and one, and

of the State the one

hundred forty-third.

Jesse Ventura

__________________

[Fay A.]

Maria Shriver, wife of Arnie and niece to Ted Kennedy, has a first cousin, Kara Kennedy (daughter of Ted Kennedy), who was diagnosed with early stage Lung Cancer a few years ago. Ms. Kennedy was in her early 40s at the time of her diagnosis and surgery.

It is my understanding that our Governor has errected a "Smoking Tent" on the grounds of the Capital near his offices, so he can smoke cigars in comfort.

[SJAS]

A smoking tent! That is just great! Happy to know our tax dollars are being used in such a way. And he even has lung cancer in his in-law's family. Your Minnesota proclamation is so much better than ours, Connie.

We are mounting a protest. Our Lung Cancer Aware website will soon have a copy of the protest and a link to the governor's e-mail. I would love the governor to hear that this tarnishes California's reputation across the country. Feel free to use it. Here is a press release we did before our event. We're hoping that there is enough of a response to the proclamation that we can do something to change it.

FOR IMMEDIATE RELEASE

November 4, 2005

Contact: Joyce Neifert, Co-founder of Lung Cancer Aware, 707-481-0151

www.lcaware.org

lcaware@earthlink.net

PROTEST OF CALIFORNIA LUNG CANCER AWARENESS MONTH

PROCLAMATION DURING LUNG CANCER AWARENESS EVENT

(SANTA ROSA, CA) – “SHINE A LITTLE LIGHT” ON LUNG CANCER, rally, this evening, November 4th , from 6:00-8:00 intends to bring awareness to the plight of those with lung cancer in this country. However, Governor Schwarzenegger’s recently approved proclamation declaring November – Lung Cancer Awareness Month- will add increased energy as the proclamation comes under fire for its language and the overall impression that lung cancer is simply a matter of the elimination of tobacco usage. The CA Steering Committee of the Lung Cancer Alliance (DC) which had originally submitted the request and contacted the Governor’s office on a daily basis to urge its adoption, was enraged to find the final proclamation bore no resemblance to that which they had submitted - and actually left the impression that the month was more about the addiction of tobacco than the disease of lung cancer.

This disappointing turn of events has brought an outcry from the lung cancer community nationwide and especially in Santa Rosa where two recent deaths highlight a different side of lung cancer. Steve Neifert, Co-founder of Lung Cancer Aware, and lifelong nonsmoker, died just 11 days ago after a 26-month struggle with the disease. His death followed two days after the shocking loss of Laurianne Koning at age 25. Koning, a nonsmoker and new mother, was diagnosed two days before the birth of her son Calem, five months ago. Her sister will address the rally tonight as her father stands beside her with Laurianne’s son.

In an e-mail to the CA Steering Committee, Chair Nancy Michener, 5.5 year Stage IV lung cancer survivor and also a nonsmoker, stated, “The good news is that Governor Schwarzenegger issued a lung cancer proclamation today…. The bad news is that three of the four paragraphs of the proclamation are all about smoking, which is exactly what we feared and full expected.” She went on to note, “The stigma is alive and well in California.”

The Lung Cancer Alliance states that approximately 60% of newly diagnosed cases will be in former or never smokers and over 50% will be diagnosed at a very late stage.

“This proclamation is a slap in the face for my family, the family of Laurianne Koning and every person struggling with lung cancer,” declares Steve’s wife, Joyce, also of Lung Cancer Aware. “It is an affront and an embarrassment to the state of California, especially in light of Dana Reeve’s revelation of her own struggle with the disease and the recent progress made in combating the stigma which has plagued lung cancer funding. Lung cancer is as much a societal issue as a health issue.”

Lung Cancer Aware is a Sonoma County based organization dedicated to advocacy, support and awareness of lung cancer issues. For more information, log on to our Web site at www.lcaware.org or in the U.S. call (707) 481-0151

[karen335]

There needs to be a clean-up in California. First of all it's not just smokers who get this disease. Non smokers get it from unclean air and other harmful carcinagens. We pay higher prices for our fuel here, it's an added tax. This tax is supposed to be used for cleaning the fuel and keeping our air and environment cleaner here in Calfornia. That apparently is not happening, it's going into the pockets of beauracrats (sp?) and big business.

We have officials that speak from both sides of their mouths and we must pay the price. That tent should be torn down. We have the right, we paid for it. It belongs to us not the state....

On the news the other day. It said the money from the smoking lawsuit has been used for renovting a race track, auto racing track and golf courses. None used to discourage kids from smoking.......

This makes me so angry......

[Fay A.]

I don't know if the Smoking Tent was paid for with public or private funds. My primary objection to it is that many young and impressionable school children visit the state capitol, and they do not need to see something like this on Government Property. He isn't just the Governor. He's still an Action Movie Hero to a lot of young people. They look up to him, because of the characters he has portrayed and NOT because of his personal character. These kids can't separate the actor from the politician... Heck, a lot of adults can't separate the roles either. I need to not think of this tonight or I won't sleep again.