What can you do in the fight against Lung Cancer

I have been on this site and its predecessor for two years. I have often read someone asking: HOW can we band together to fight lung cancer? I have a clear personal view but , in the interest of full disclosure, I should let you know that I am the (volunteer)Chairman of the Board of the Lung Cancer Alliance which is the Non Profit Patient advocacy organization that sponsors this Survivors network. .

From my perspective, there are three points at which we can attack this monster and we need help from survivors on all fronts. Here are three problems and three solutions:

First: The problems we are confronting are, first and foremost, a federal public policy issues. Lung Cancer has had no priority for research funding. The government has ignored us because we were never well represented here in Washington. We have not had the public relations machinery and lobbying strength to educate our legislature. The ACS and American Lung Association policy toward Lung Cancer focused solely on smoking cessation which was very shortsighted. If everybody in the country stopped smoking tomorrow, there would still be 90 million former smokers at high risk from this disease. 20% of new women cases have never smoked!

Solution:
Get connected with and support the Lung Cancer Alliance. It is the one outfit that is positioned to be your advocate where it is most important. LCA is your spokesmen and barricade crasher here in Washington DC. It is a small ( 7 staff) but vigorous group that is beginning to make headway in our Capitol. There are lots of good local outfits around the country, but from my view, we have to win it here in Washington. Get on the mailing list so we can tell you where the opportunities lie. (LCA never sells or lends its list) LCA needs to be bigger and to have more people involved. Membership is free but in candor, it needs funding support as well. Go to the advocacy menu and find what you can work on. (Sign the petition on the web site http://www.lungcanceralliance.org/involved/sign_the_petition.php )

Second: The second problem is public education at the local level. PKITTS, one board member, has been very effective in North Carolina in drawing attention to the Lung Cancer by telling her story. Others around the country has written letters to the editors and told their story. Lung Cancer is stigmatized because of the Tobacco issue and because the personnel stories do not come out. How many Breast Cancer stories have you read? We must tell our story to grab the public's attention.

Solution:
Let people know your story.. Let them know that Lung Cancer kills twice as many women as Breast cancer but receives a tiny fraction of the funding that Breast cancer receives. Let them know that a half million Americans die every three years from this one cause: and let them know how it effects you! Make it personal and you can make it powerful.

Third:
The states have the same policy opportunities as the Federal Government but can be attacked only from a state level by state advocates.

Solution: Band together with others in your state who want to help. The LCA has powerful and effective organization in several states (CA, MA, NY, CN, GA among others. ) LCA has contact with many individuals in the states who are trying to coalesce.. give them your name.

Final note- I know that a lot of people want to raise money for research which is a commendable effort which I encourage; however, it is not where the leverage is. Let me give you a perspective. There were 14,000 AIDS deaths in the country last year. AIDS funding from all federal sources was $5.6 billion. That is the "B" word. There were 162,000 lung cancer deaths last year: Federal funding was about $240 million. What is the likelihood that individual efforts will raise $5.6 Billion ? Public Advocacy may not raise it either but it can help put some balance and perspective into the funding debates where the Big money is allocated

Phil C

By Jhoey
Posted April 4, 2008 at 6:36 am
Report post

Phil
Both Larry & I went to web site & signed petition. That part was real simple A no brainer. We feel all in this web site should look at the site and hopefully also sign petition.
Thanks for all you are doing for L/C
Janet

By BB
Posted April 4, 2008 at 10:05 am
Report post

Dear Phil,
Because my husband has stage IV nsclc I am very interested in helping to find a cure for lung cancer. My problem is a fear of the oncology empire which supports the pharmacutical industry at the expense of other forms of treatments. I only want to support an independent organization which will have a broader reach for funding treatment. When chemo did not work on my husband we started a nutritional approach. So far he is doing better. We have also used pallitative radiation and cyber knife for his brain tumor.
I will work hard for a cure if I am comfortable as to where the money is going. Can you give me more information? BB

By SaltyDog
Posted April 4, 2008 at 10:42 am
Report post

BB

The best that I can offer is the link to the LCA page which shows where it is putting its efforts.

http://www.lungcanceralliance.org/about/about.html

LCA focuses on patient support and advocacy. The patient support piece includes this site, our Phone buddy program, and trial matching service.
We are trying to educate congress and the Federal Health bureaucracy (HHS, NIH, NCI, VA an DOD) of the huge human cost associated with their shameful underfunding of Lung Cancer research. We work with state advocates who are caring on vital work in each state capital.

LCA does not sponsor any research on its own since there are so many private funds and foundation doing
that. ( lungevity, Joans list etc). Moreover, we believe the Government has a resposnsiblity to spearhead the fight against the number one cancer killer and we are here to constatly remind them of that .

We also advocate for more emphasis on screening of high risk individuals since that is the only path that will produce major reductions in the mortality associated with this disease. We know that well-controlled low dose CT screening for high risk can increase survivorship, I-Elcap proved that. We are confident that the advances in detection technology will produce reductions in the disease mortality as well.

I hope that is helpful, but the link tells the full story.

Phil C

By sktoma
Posted April 4, 2008 at 11:54 am
Report post

Thank you for this information, I already give to Lungevity. I signed the petition and I also made a small contribution to help, I just wish I was rich.

Thank you for what you are doing to help raise awareness. Kathy

By LTLCS
Posted April 4, 2008 at 12:10 pm
Report post

Wow Saltydog, you sure do know what your talking about when it comes to advocate for lung cancer. Good for you! Almost sounds like you sould be on TV advertising for it! (wink)!

Another way to bring Awareness to lung Cancer is to have a walk in your community. LUNGevity is starting to set up lots of walks all over the US and the proceeds will to go Lung Cancer Reserch.

I have been accepetd to attend the LIVESTRONG SUMMIT on behalf of Lung Cancer Survivors. (smile) I am so thrilled to be able to represent Lung Cancer Survivors from all over the world. There are MANY things that are popping up nowdays to help bring Awareness to Lung Cancer and to Help fight for Better Medical Research and Technology for lung cancer as well as early detection for lung cancer.

We in Minnesota are also getting ready for our 2nd Annual Lung Cancer Walk. Last year for the first walk ever they brought in over $15,000.00 dollars for a first time walk.(so I heard) Not to mention 1,500 people attended. That was awesome!

There's lots we can ALL do to bring Awareness and offer Support on behalf of Lung Cancer.

By SusanK2
Posted April 4, 2008 at 12:26 pm
Report post

I have a suggestion for those who would be able to do a little more to help. Print off the petition form and get it signed by your friends, neighbors, and co-workers. Instead of just one or two signatures, you may be able to get 50 - and in the process, you'll be educating people about lung cancer and the need for research funding. Two good results for doing such a simple thing.

When you follow the link above, there are instructions for downloading the petition, along with the address where you can return it.

Thanks.

By LTLCS
Posted April 4, 2008 at 1:12 pm
Report post

Can I be frank about that petition. That petition has been around when ALCASE/LCA first started out over 9 years ago. In all this time NOTHING has ever become of that petition. People sign it and no one knows what becomes of it.

Just makes me wonder.

By SaltyDog
Posted April 4, 2008 at 1:55 pm
Report post

What has actually happened with those petitions? It is actually a very good story. In the last two year, the LCA has spearheaded a drive which suceeded in having resolutions passed in both the House and the Senate stating that Lung Cancer is National priority.

Here is the story on the Senate resolution.

Senate Reiterates Calls For Making Lung Cancer Research a National Priority
Washington, DC [August 3, 2007] – Late in session last night, the U.S. Senate unanimously reconfirmed its commitment to making lung cancer research a national public health priority.

Laurie Fenton-Ambrose, president of the Lung Cancer Alliance, thanked Senator Hillary Clinton (D-NY) and Senator Chuck Hagel (R-NE) for their leadership on the resolution which reinforces the one they shepherded through the Senate last year.

“This year they were joined as co-sponsors by Senator Diane Feinstein (D-CA) and Senator Sam Brownback (R-KS), who are both co-chairs of the Senate Cancer Caucus, and Senator Sherrod Brown (D-OH).

“We are deeply grateful to all of them for getting this resolution passed and for their strong support of the goals of the Lung Cancer Alliance to reverse decades of stigma, neglect and under funding of lung cancer research,” said Fenton-Ambrose.

The resolution calls on President Bush to declare lung cancer a public health priority and to order health agencies to develop a comprehensive, coordinated program to cut lung cancer mortality in half by 2015.

Specifically cited as areas for action include increased funding for translational research and specialized lung cancer research centers, more action on early detection, expedited development of chemoprevention and targeted drug therapies for lung cancer and screening pilot programs under Medicare.

Last year, during the previous Congress, a similar resolution was introduced in the House of Representatives but failed to pass.

A companion House resolution was introduced on April 24, 2007 by Congresswoman Lois Capps (D-CA), Congressman Ed Whitfield (D-KY) and Congresswoman Donna M. Christensen (D-VI).

They have been joined as co-sponsors by Congressman Virgil H. Goode Jr., Congresswoman Sheila Jackson-Lee (D-TX), Congressman Jim McDermott (D-WA), Congressman Michael R. McNulty (D-NY), Congressman James P. Moran (D-VA). Congressman Tim Ryan (D-OH), Congresswoman Betty Sutton (D-OH) and Congresswoman Lynn C. Woolsey (D-CA).

“We are hopeful that the House will act soon,” said Fenton-Ambrose. “ Slowly but surely we are building a strong coalition of House and Senate members who are deeply committed to making lung cancer research, early detection and mortality reduction a national priority.”

“It’s been long overdue,” she said, “but we are getting there.”

The Lung Cancer Alliance (www.LungCancerAlliance.org) is the only national non-profit organization solely dedicated to patient support and advocacy for people living with, or at risk for, lung cancer. As the number one cancer killer, lung cancer will kill more than 160,000 Americans this year alone, causing more deaths than breast, prostate, colon, liver, kidney cancers and melanoma combined.

There is a link below to the Senate resolution.
http://www.lungcanceralliance.org/news/documents/S.Res.%2087.pdf

Bottom line: have faith. it is working . it ain't fast but every petition counts.
SasanK is right on..

Phil C

By amymaura
Posted April 4, 2008 at 2:26 pm
Report post

If anyone is interested in events (such as walks like LTLCS mentioned), visit our website at: http://www.lungcanceralliance.org/news/events.html

We list all lung cancer-related events there. If you or an organizations you know of are hosting a lung cancer event of any kind, please email kay@lungcanceralliance.org and let Kay know so that she can post it.

Also, regarding what LTLCS said about the petition, here's the deal: The goal is to get 160,000 signatures to represent the annual number of lung cancer deaths and then bring them to the Hill/White House, etc. The reason nothing has been done yet with the petition is because not enough people have signed it. A petition isn’t effective until we have a large number of signatures. To put it into perspective, the breast cancer movement waited until they had over 2 million signatures before they moved on anything.

So I understand the skepticism, but that's why we need more of you guys active in this and getting people to sign it. As Phil said, we were able to get a resolution passed in the House and Senate this year. We are making more headway on a policy level than anyone else is. BUT WE NEED YOUR HELP TO MOVE THESE THINGS FORWARD!

By SusanK2
Posted April 4, 2008 at 3:35 pm
Report post

Yes, according to the LCA web site, 19369 people have signed or downloaded the petition. Pretty far from the 160,000 signature goal.

That's not a reason to give up on it - that's a reason for each of us to download one or two copies, get lots of signatures, and return them to Lung Cancer Alliance. Take them to work, and church, and neighborhood get-togethers. Explain to people why you want them to sign, and why their support is so important.

I'm working on getting the 50 signatures on my second petition, and just about everyone I've asked has been happy to sign. If 1600 of us get 100 signatures, we'll be well over 160,000. So follow this link to download and print the petition. http://www.lungcanceralliance.org/involved/sign_the_petition.php,

Thanks.

By pkitts
Posted April 4, 2008 at 6:34 pm
Report post

Thanks Phil,
I hope people will take this to heart and DO something. Even if you think it's a small insignificant thing, it's a STEP. We really can make a difference.

I hope to one day be in a crowd of lung cancer advocates in Washington. I bet if I was a streaker it would get media attention. "NAKED BALD WOMAN MARCHES ON WASHINGTON TO RAISE AWARENESS FOR LUNG CANCER RESEARCH"

With hope and a smile,
Pat K the BWP (with clothes on)

By Angie-in-SC
Posted April 9, 2008 at 4:43 pm
Report post

Thank you, Phil C, for this motivating post! Susan K2, I'm going to print out the petition and take it to my next Relay For Life Team Captain's meeting!
I wrote all of my state senator's last week regarding our state's lowest in the nation cigarette tax, a dismal 7 cents. Newspaper reports claim they don't know what to do with the revenue. God forbid, devote some of it to lung cancer advocacy/research. I received a number of responses, and one in particular was very positive. I'll keep fighting for awareness here in South Carolina.
Angie

By MaryAnn
Posted May 5, 2008 at 12:25 pm
Report post

Hi Phil
I sign the petition. The fact that Lung Cancer kills more than all other cancers and twice as many deaths than that from breast cancers is astounding. If you added up those numbers and multiply that number by those family members that are touched by this monster you would think that LC would be in the fore front for research. It really baffles me with such a large volume of individuals affected by LC that the demand for something to be done should ((((loud and clear.)))
Thank you for your efforts
Mary Ann

By SaltyDog
Posted May 5, 2008 at 3:19 pm
Report post

Thanks Mary Ann..

It is outrageous!! All the public health figures nod knowingly and look at their shoes when we tell them.
They have been able to hide from this in the past. We cannot let them hide in the future.

You have to win this in the public forum. Tell ten others and get them to sign as well; it is numbers that will win the battle.

Phil C

By birdss
Posted February 8, 2009 at 11:55 am
Report post

I just posted an entry about what I believe to be a very promising treatment modality that may provide hope in the very near future. It is called the Kanzius Device. I have written newspapers, TV stations, polititions, etc.. asking for support. If we could get some of the money in D.C. going specifically to this exciting new treatment that is being developed and have it SOLELY DEVOTED TO INCLUDING LUNG CANCER IN THE UPCOMING CLINICAL TRIALS, then perhaps we could see some promising new developments. The Susan Koman Foundation discussed this directly with MD Anderson about providing funding for the Kanzius Device research in return for the committment that breast cancer would be one of the first cancers studied. Why can't we do the same somehow? Simple I think, because others are more organized and their fundraising is much more robust. How can we change that? Looking for sugrestions.

The lead reasearcher believes that this is the most promising breakthrough in 20 years of his dealing with cancer at MD Anderson. Pretty heady statement. I think we need to get the petition moving AND then make sure that the politions give MD Anderson $5 to $10 million solely for lung cancer research using the Kanzius device. If yoiu have not seen the news on this, YOU MUST. It is really exciting and promising. Better than anything else I have seen. Here is what I posted:

I think that one thing we can all do is to write the LCA Board (I have already done it) and strongly request that they get behind this project (if they think it worthy). I would like them to write a letter in support MD Anderson to look at lung cancer in their first trials. When you consider the statistics, how could the researchers NOT include lung cancer? It accounts for 1/3 of all cancer deaths every year.

Can we donate to the LCA directly with the promise from them that they will donate that money directly to MD Anderson with some sort of guarantee that they will include lung cancer in the trials?

Does the LCA have any funds that they can forward as well? Can the LCA influence our politicians to bring some money specifically to the project on our behalf - FOR LUNG CANCER ONLY? $5 to $10 miilion from the NIH should not be that hard to dedicate when you consider their budget is $30 billion.

I am new to this site and don't know much about what the LCA can and cannot do.

Please encourage your friends and family to donate if feasible (I know the economy is tough on all of us), AND write to your local newspaper (and TV) in support of this research. Encourage the newspaper readers to support the project. Encourage the newspaper to do a story on the project. Encourage the newspaper to keep an eye on this and keep their readers updated. I think when the report of the other 4 institutions joining in the research hits the newswire in a afew weeks, this thing will explode.

I have contacted the Bonnie J. Addario Lung Cancer Foundation in San Francisco and they have responded that they are following the story with interest and keeping tabs on it. Is the LCA doing the same?

I can provide a copy of the Letter to the Editors that I wrote and you can use that as your own or tailor it to suit your writing style and opinion(s). Just let me know and I will post it. I might post it anyway.

The sooner we get more money in their hands, the sooner the trials will commence. They have 13 researchers now at MD Anderson, and when they can add more, then that allows someone to study another cancer, such as lung.

Perhaps someone knows that has been with this site longer than I. Does the LCA have funds that they use for helping our researchers at various institutions, or does the LCA just act as a common voice for lung cancer sufferers?

I am going to go out on a limb here and guessing that the LCA acts as our common voice. If that is so, then we MUST encourage them to use their influence with our politicians to get money directly to MD Anderson so that there is some sort of guarantee that lung cancer will be in the first clinical trials. Again, how could the researchers NOT include the leading cancer killer? I understand that prostate and breast and liver and pancreatic are big on the public’s consciousness, but we need to change that attitude so that lung gets much more attention.

I have said enough for now, but I am very passionate about this. It may be the best thing to ever come around. Of course, it may fail too. But how many other therapies have failed or not lived up to their promise. It is time for something novel and new, and I think that this is it personally.

Steven

By demika
Posted February 24, 2009 at 12:05 pm
Report post

Since my mom was diagnosed with lung cancer last week, I've been researching & learning a great deal. I appreciate this posting about what you can do to help fight because I didn't know what to do, but I knew I wanted to do something.
I signed the petition & sent the following letter to the President (see below). Maybe we all should send letters & maybe we'll get some progress.
God bless all of you fighting this disease & family/friends.
______________

Dear Mr. President,
My 65 year old mother was diagnosed with lung cancer on February 19, 2009. She was a smoker over 20 years ago. Since then she has lived a very healthy life style and regularly visited her physician. She even volunteered for your campaign in the primaries, which gave me the motivation to do it. This past November she started feeling sick. Her physician thought it was the flu & her asthma. Less than three months later we find out its cancer. Of course, as a family we're devastated, but thankful that she has insurance, so she can try to receive the best treatment available to prolong her life.

Since we were hit with this dreadful news, I immediately started researching this disease, which I thought you'd be interested since you are or were a smoker. Lung Cancer kills twice as many women as Breast cancer but receives a tiny fraction of the funding that Breast cancer receives. Half a million Americans die every three years from this one cause. Mammograms are mandatory for all women beginning at 40 years old. If chest x-rays or ct scans were mandatory lung cancer could be detected much sooner and the survivor rate would increase. My mother had not had a chest x-ray in 10 years and she had always had an annual physical.

There were 14,000 AIDS deaths in the country last year. AIDS funding from all federal sources was $5.6 billion. There were 162,000 lung cancer deaths last year: Federal funding was about $240 million. The fraction of lung cancer deaths can significantly decrease with more federal resources.

Mr. President, I know you're in good health now, but this deadly disease could creep up on you like thousands of Americans. Please help with the fight against lung cancer. I want my mom to see my children grow up.

Thank you for your time.
Demika Carswell

By lovlyles
Posted February 25, 2009 at 11:29 am
Report post

I am a strong advocate of the Kanzius Device and do believe that it will truly be the answer....unless....somewhere along the line the Big Pharmas, etc. and their little union do something to stifle it. This is what is happening with anything promising, so that is why there is no cure at this time....and there should be. I don't know how to stop this and I'm only one person, but it needs regulating and to make sure nothing is intercepted along the way.

I have written our President twice about this issue and last night when he gave his speech he said "finding a cure for cancer". I have such hope in him and I think he understands since he lost his mother to cancer.

Just from what videos I have watched about the Kanzius Device, it sounds like it would be all kinds of cancer, but I'm not sure about that. It would be wonderful if it were and not have to be directed to one specific cancer. I would think that if it was just one specific that the first would be Leukemia since that is what he died from. I know my contribution went to that device.

Welcome to Inspire!

Explore topics in this discussion:

19 replies

Add to the discussion

Help from Lung Cancer Alliance

You