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
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