s_meksvanh Posted September 22, 2003 Share Posted September 22, 2003 Interesting turn of events... Having lots of time on my hands, decided to offer my services as a volunteer. Contacted the local American Cancer Society chapter and spoke to the Sr. VP for volunteerism (Mid-Atlantic Region). Told her that I was a 2 times lung cancer survivor and was interested in helping in any way that I could. She placed a few calls and got back to me within 2 weeks. I was called by the American Cancer Society's Government Relations Manager for Maryland and invited to join the Public Policy Committee. I was asked to testify on matters of local interest at the next legislative session in Annapolis, Maryland on behalf of lung cancer victims. I was also asked if I would be willing to testify on Capitol Hill on matters of national importance. I agreed to both. For those interested in shaping public policy, click on the following link to read the American Cancer Society's "How Do You Measure Up?" - a progress report on State Legislative Activity to reduce cancer incidence and mortality. There are interesting facts and figures on Tobacco for each of the 50 states. http://www.cancer.org/downloads/GI/How% ... e%20Up.pdf Sadly, it would appear as though I am the ONLY lung cancer survivor on the American Cancer Society's Public Policy Committee in Maryland. This raises a more disturbing question: am I the only lung cancer survivor to sit on Public Policy Committees nationwide? For our sake, I hope not. Fellow survivors, patients and/or family members: If we are going to change the course of history and thus this disease, I appeal to all those on this message board who are able-bodied to call their American Cancer Society Government Relations contact in their home state and volunteer their services. The contact info is at the back of the document listed above. We cannot afford to sit idly by while every 3.5 minutes another one of us dies. These activities should not consume an inordinate amount of your time but will have far reaching implications on lung cancer. When testifying in your State's chambers, let your legislators know that they should not to confuse you with the facts (those presented by the American Cancer Society) and you as a living, breathing person afflicted with, or by cancer. The impact of live testimony of a cancer survivor or family member on those present in the chambers is tremendous. When testifying, speak not of facts, but of personal experience, pain, and courage in the face of personal adversity. I did so back in 1998 on Capitol Hill - the lady U.S. senator to whom I spoke, had a daughter who had regrettably been diagnosed with lung cancer the morning of our session. She LISTENED. And so will others, but we need to be there to be heard. I challenge message board members, that by the end of this year, we have a lung cancer survivor or family member sit on the Public Policy Committee in each of the 50 states of the Union to represent our interests at the state and national legislative level. I'll shut up now. Quote Link to comment Share on other sites More sharing options...
Donna G Posted September 22, 2003 Share Posted September 22, 2003 I thinks what you are doing is wonderful. Our biggest problem is this disease takes so many of us and those of us that are left - well we are worn out. Lung cancer does not give the warm fuzzies that breast cancer gives- Mom and apple pie. You know it is a blame disease, please don't give up! The site you sent us to is interesting, all leading cancers ( except lung) they measure screening done, lung they measure smoking restrictions in public , spending tax money from cigarettes on cessation, how much taxes are on cigarettes etc . They don't even mention even if you quit smoking yrs later you still get lung cancer. They don't mention any screening to detect it early . The biggest thing they don't mention is how profitable cigarette taxes are to local , state, and federal government, they don't mention how even though we now know for sure that tobacco companies add over 300 carcinogens to cigarettes that the government continues to let them do so. That the tobacco companies are now doing even stronger "ads"by having charactors smoke on TV and in the movies and paying huge abouts of money to the producers to do so. Our young look at this and realy don't believe they are vulnerable. Lets face it we even subsidize the tobacco industry. Boy this got me started !! Well good luck , keep us posted on what is going on and let us know what we should "pressure ' our congressman about. Donna G Quote Link to comment Share on other sites More sharing options...
Fay A. Posted September 22, 2003 Share Posted September 22, 2003 Are you referring to Senator Lois Capps (D), of Santa Barbara, California? I thought Lisa Capps was diagnosed in 1999. Her daughter, Lisa, lost her battle with lung cancer. She was in her mid thirties. My personal experience with Senator Capps is that when I was first diagnosed with lung cancer my insurance (Federal Issue because we are retired military) denied authorization for surgery because they claimed it wasn't "...medically necessary...". In my opinion they then handled the appeal process in such a way as to circumvent a fair review and final appeal. I had previously contacted Senator Capps' office because I suspected that my insurance would do what it did do. As soon as the denial on the appeal came through I contacted Senator Capps' office and they interceded on my behalf. Within a matter of minutes I was notified that authorization was approved. I think of all of the other folks who don't know how to fight this kind of fight. I want to help them. I know from first hand experience that the military medical community has a terrible track record when it comes to diagnosing lung cancer in it's early stages. I want to help all those who do not know how to get what they need. Fay A. Quote Link to comment Share on other sites More sharing options...
bobmc Posted September 23, 2003 Share Posted September 23, 2003 Hello Father of Five; Very happy your doing what your doing and getting that kind of response from. ACS. I'm also a member, part of advocacy group there and have a web page on their Survivors network. I use them as well as smokefreeair.org to voice my opinion on tobacco litigation and lung cancer issue's. It's interesting, I've never got the kind of response that you have. I don't know who your contact is by I'd certainly be willing to help in anyway. keep it up and good luck God bless and be well Bobmc - NSCLC- stageIIB- left pneumonectomy- 5/2/01 " absolutely insist on enjoying life today!" Quote Link to comment Share on other sites More sharing options...
Snowflake Posted September 23, 2003 Share Posted September 23, 2003 Hello, all....playing devil's advocate today and may end up ruffling some feathers. Just a thought here, but what if WE (as in the people of the U.S.) did not PUT all the blame for lung cancer on tobacco companies? What if the focus was moved from POSSIBLE reasons to "just the facts" - that you don't have to be a smoker to get it and that people are dying every 3.5 minutes? Would that make it easier for people to understand that more money needs to be set aside for the study of the disease? Maybe if the smoking stigma were taken out of the equation there would be more unilateral support..... I do not feel that "Big Tobacco" should be footing the entire bill, ESPECIALLY if all research is then based on the SMOKERS' version of the disease! I think focus should be on the disease, not on blaming...not until AFTER people stop dying. What if, upon research, it's discovered that it's NOT cigarettes that cause the cancer....what if, the smoking WEAKENS the lungs and "allows" the cancer to start where it may not have if the lungs were healthy? (I know, a PollyAnna viewpoint, but if it's only from smoking, explain why I have it....or Hebbie....or BeckyG....) I think the message that the general public needs to have repeated is that it's NOT "just a smoker's disease" and that it can happen to anyone, any age, any gender. This is NOT a disease that just hits chain-smoking octogenarians, but that's the caricature that is drawn. There's my input, for what it's worth. Would I harm "the cause" by NOT being on the Big Tobacco witch hunt? Quote Link to comment Share on other sites More sharing options...
s_meksvanh Posted September 23, 2003 Author Share Posted September 23, 2003 Overcoming the stigma is priority 1 on every advocacy groups' agenda. Lung cancer is a disease - plain and simple. Though tobacco contributes a disproportionate amount to the overall incidence rate and mortality, it is not the only cause of lung cancer. It does however make sense to impress upon the general population the importance of preventing the disease in the first place. If you never smoked, don't start. If you are smoking now, seek assistance to quit. If you are quit, stay quit and have routine annual chest x-rays as a precaution - lung cancer is potentially curable if caught early. I have my own opinion as to whether tobacco companies are at fault and as to whether they should compensate victims but I would rather focus my limited energy to convincing legislators to fund education, prevention, research, and treatment. Lung cancer is just about where AIDS was in the 80's. It was assumed that if you had AIDS - you were gay. Just as it is now assumed that if you have lung cancer - you are therefore a smoker or former smoker. Blaming the victim is all too convenient. Contributing to this notion is our own silence, sense of powerlessness, and inaction. We conveniently die quietly and far away from the public's eye. We - you, me, family members, advocates, and others - must work to educate the public as to what lung cancer is if there is to be any hope of turning the tide against this disease. While you still have breath in your lungs - speak out. Me - I choose to not die quietly. Quote Link to comment Share on other sites More sharing options...
beckyg Posted September 23, 2003 Share Posted September 23, 2003 A couple of comments. First, I did call my Texas Govenrment Relations coordinator for the American Cancer Society. I told her that I was an 8 month lung cancer survivor and that i was interested in advocacy. She said she would send me some things in the mail. She didn't know off the top of her head what oppotunities they had in my area, but that information would be in my packet. We'll see what happens. In response to Snowflake, I am torn on this issue too. I am all for programs to prevent people from starting smoking and programs to help people quit. I am also in favor of punishing tobacco companies for deceptive things we now know for sure they have done. The more I learn about the results of all those Big Tobacco lawsuits and where the money has gone, the more disgusted I am. But I hate for the discussion to focus completely on tobacco. Most of the people here hate that initial question--"How long did you smoke?" because of the implied "You smoked, you deserved it" that comes along with it. I am currently really resentful of the belief held by too many in the medical community that my cancer is an aberration because I didn't smoke and there is no point in focusing on people like me. Sure people who have smoked ought to have more screening than they do, but those who don't also need information about warning signs and they need doctors who take breathing complaints seriously. Maybe it's self-centered of me, but I can't help thinking when I read about new screening trials and such, "That wouldn't have helped me." I saw a program on the Science channel recently discussing a new theory about global warming. This scientist has a lot of interesting data connecting Earth's climate changes to sunspot activity. As a scientist, I found the theory very compelling and convincing. As a person who can't breathe and who is concerned about air quality, I have this nagging fear that current belief in the Greenhouse Effect is the only thing keeping governments really motivated in this area. I know there is no proof that pollution has any connection to lung cancer, but it has been connected to asthma and all sorts of other breathing issues, so it doesn't seem like a big stretch to me. My two cents. Becky Quote Link to comment Share on other sites More sharing options...
Snowflake Posted September 23, 2003 Share Posted September 23, 2003 Howdy, Father of Five! Anyone who knows me in person knows that I do NOTHING quietly (my husband can vouch that I talk in my sleep). It's not that I have any plans on dying silently in a corner, I just haven't found where I want to channel my energy and my voice. I'm not 100% convinced that my battle is with the tobacco companies - I think it's more with the government and how funding is set aside for "bosoms" and "boy parts" when donations are collected for cancer research while lung cancer is looked at as a "cause and effect" disease. I am hoping to find what I need to do for me through all of you. I have a talent for writing, I can massage words like nobody's business...I can write persuasively, I can write subtle, I can write straightforward ... and I can BS with the best of 'em. What I need is a more defined cause and a target audience. I have a generalized cause, I have passion, I am seeking direction. I am willing to be a voice, I just need to know the song. I don't want to debate smoking vs. non-smoking in lung cancer terms. I don't want the focus to be more on the action than the person. This disease needs to be PERSONALIZED for the general public, not seen as a side effect of smoking. As long as it's viewed as a health hazard of smoking it will be like the "Gay Man's Disease" that became a REAL threat when children and "straight" people started to die. I'm not trying to lock horns with you, I'll lock arms and walk with you...but you'll need to lead until I learn the steps. Becky aka Snowflake Quote Link to comment Share on other sites More sharing options...
Fay A. Posted September 23, 2003 Share Posted September 23, 2003 Mea Culpa!!!!!! Congresswoman Capps is a member of the House of Representatives and not the Senate. I think that my brain cells are leaking out of the kazillion tiny holes in my scalp where my hair use to be! Fay A. Quote Link to comment Share on other sites More sharing options...
Snowflake Posted September 23, 2003 Share Posted September 23, 2003 Gee, Fay....and as I lose my hair I feel like I'm getting so much smarter - all the blonde fell out first! It's like artificial intelligence! Now I need to fear my brain cells oozing out like noodles sneaking out of a colander? Will it NEVER end?? (Ya know, I just noticed that all these smilies are bald - are they survivors, too?) Quote Link to comment Share on other sites More sharing options...
stephnewyork34 Posted September 24, 2003 Share Posted September 24, 2003 Hi Father of five, I thik it is a good thing you are doing, and I agree that people think this is about people did it to themselves, just like AIDS, in that it is the persons fault for getting it. Anyhow My mother, Judy B and I are writing a book about her experiences and also trying to gather others stories for it. Sadly unless it is a "human" story, people don't care in this country. And it seems like we may be able to educate through entertainment as well as the givernment?? Anyhow I enjoyed your post and I hope you can make a difference and maybe Mom and I can get the word out our way and together more people will know about it. PS Is there are way to get a LUNG CANCER walk, run, or fund raiser? like the other diseases have? Or in the major marathons, getting people rasiing money for LUNG CANCER instead of AIDS, MS, BREATS CANCER? can your connection help in that?? or you position on the board?? PSS I do the AIDS stuff and have been for over 15 years, including marathons, rides,walks, dances,buddy programs, and general volunteer work, but I would also get involved if there was a lung cancer walk, etc. especially for my mom Quote Link to comment Share on other sites More sharing options...
s_meksvanh Posted September 24, 2003 Author Share Posted September 24, 2003 WHOA!!! DIDN'T MEAN TO START A FIRE STORM OR A DEBATE ON THE FINER POINTS OF THE TOBACCO CONTROVERSY. MY ONLY INTEREST IS TO GET MORE PEOPLE AFFLICTED WITH LUNG CANCER TO PARTICIPATE IN THE LEGISLATIVE PROCESS SO THAT FUNDING IS MADE AVAILABLE FOR EDUCATION, PREVENTION, TREATMENT AND RESEARCH TO COMBAT THE DREADFUL DISEASE KNOWN AS LUNG CANCER - IRRESPECTIVE OF THE CAUSE(S). MY FIGHT IS NOT WITH THE TOBACCO COMPANIES, STATE'S TOBACCO REVENUES, TOBACCO SETTLEMENT OR ANY ONE ELSE FOR THAT MATTER!!! I AM ONLY SUGGESTING THAT WE DILIGENTLY WORK TO GAIN THE ATTENTION OF THE ELECTED OFFICIALS WHO CONTROL THE PURSE STRINGS - NOTABLY THOSE IN THE WHITE HOUSE, THE UNITED STATES CONGRESS, AND STATE HOUSES AND THAT WE USE THE AMERICAN CANCER SOCIETY'S GOV'T RELATIONS COMMITTEE AS A VENUE. THERE ARE OTHER VENUES. THE TOBACCO ISSUE AMOUNTS TO NOTHING MORE THAN A DISTRACTION - THE FOCUS NEEDS TO BE ON THE HARDSHIP, THE COSTS, THE MORTALITY, AND THE NEED FOR ADDITIONAL DOLLARS TO COMBAT THIS DISEASE. HOPE THAT CLEARED UP SOME OF THE CONFUSION. Quote Link to comment Share on other sites More sharing options...
lilyjohn Posted September 24, 2003 Share Posted September 24, 2003 I agree one hundred percent that we need to act. The problem I have found is getting anyone who can do something to listen. My question is does anyone ever address the issue of attitude toward lung cancer other than the smoking issue? I believe that the negative attitude of both the public and the ones in the medical profession are responsible for a lot of cancer deaths. I know for sure that they give medications that can and do kill because they believe that a peson with lung cancer is a lost cause right from the beginning. That is so wrong. I witnessed what that negative attitude can do to a person and how the doctors respond. If you have read any of my posts you will know that the man I was going to marry died and it is my belief that he died because he had lung cancer. It was not the disease that killed him but that attitude that a peson with lung cancer is always going to die of it. I have written Johnny's story and many on this board and others have read it. again I say anyone who wants to read it email me at lild@peoplepc.com and I will send it to you. I can not get the medical board in Washington to even look at the real issues I have. They just say how they checked their proceedures and how they question the people there and they find nothing wrong with how they do things. I have told them that Johnny was a person and not a number and that I have spacific questions that need answers but still no response. Once they hear lung cancer they give the same response. He had lung cancer he was going to die anyway. I even had a lawyer tell me that she hears the same story everyday. She said if you take it to court the doctor just has to say "he had cancer and was going to die any way" and they can get away with anything. That is an excuse to poison someone with drugs then get away with it. I believe that is a major issue and needs to be addressed. If it happened once and I know it did then it will keep happening. It is time for it to stop. Is there any room in what you have to say for that issue? I can't go anywhere but I can and do write a lot and I want someone to be aware. Let me know if you can help me and if there is anything I can do with my writing that will help. Lillian Quote Link to comment Share on other sites More sharing options...
Donna G Posted September 24, 2003 Share Posted September 24, 2003 How do we get away from the smoking blame game? I say again the public is educated that if you quit you won't get lung cancer . It is a lie! Half the people who get lung cancer do not smoke. I went to the twin cities consortium just a couple of weeks ago and heard doctors who are passionate about treating , researching, curing lung cancer. They always say it is underfunded It is very complicated, many things are wrong at the cellular level. That makes me think as we breath our whole life, many things could happen to us. Years ago I know of a kid who had a scar from chest to hips when I asked about it I found out as a 5 month old infant he had bleeding ulcers!!!!!. THey had to operate to stop the bleeding. Years later I am told in nursing school that ulcer are caused from irritating food, stress, worry, so you treat them with a bland diet, change of life style for the rest of your life!!!! Like a chronic disease. Think now , How could a baby have an irritating diet and need a change of life style!!! Now we know that ulcer are an infection , 3 weeks of antibiotics and you are cured. The interesting thing about this is when I was leaving the meeting one research doctor said to me " I think we will find a cure in the next 10 yrs, it may be this is caused by a virus" We need an army out there. Not only LC survivors but all their friends and relatives , we need to "come out of the closet" People need to know that this disease affects wonderful people, mothers, preachers, teachers, musicians, Dads, brothers, sisters . OK I am rambling Donna G Quote Link to comment Share on other sites More sharing options...
s_meksvanh Posted September 24, 2003 Author Share Posted September 24, 2003 There are in fact a number of initiatives that are beginning to address the funding, the stigma and the need for treatment alternatives. ALCASE ( http://www.alcase.org ) and the Global Lung Cancer Coalition ( http://www.lungcancercoalition.org ) are example of advocacy groups working to change the manner in which we are treated. The 10th world conference on lung cancer addressed these issues to some length. 11th August 2003 - GLCC reports: "Organisers of the 10th World Congress on Lung Cancer have taken the unprecedented step of inviting representatives from lung cancer patient organisations around the globe to speak out to an expected 3,000 international lung cancer experts attending the congress this week about the many issues facing lung cancer patients today." >>> What really pisses me off (pardon my French) is that it took to the 10th (yes - 1,2,3,4,5,6,7,8,9,10th!!!!) world conference before these issues were addressed and the first time that advocacy group were permitted to speak on our behalf in front of this panel of 3,000 lung cancer experts!!! 21st October 2002 - GLCC goes on to report: " The Global Lung Cancer Coalition (GLCC) is therefore delighted that the European Society for Medical Oncology (ESMO) has become more patient-focused. For the first time at one of the Society’s prestigious meetings, a whole day was dedicated to general public and patient education on critical aspects of cancer research and care." MORE PATIENT-FOCUSED? A WHOLE DAY? WOW - CAN"T WAIT TILL THE NEXT CONFERENCE - THEY MIGHT EVEN CLIMB DOWN FROM THEIR IVORY TOWER LONG ENOUGH TO REALIZE THAT PEOPLE ARE DYING OF THIS DISEASE. Quote Link to comment Share on other sites More sharing options...
lilyjohn Posted September 24, 2003 Share Posted September 24, 2003 It bothers me that once they discovered a link between smoking and lung cancer that they quit looking for any other causes. They just assume that it is smoking and they have spent so much money trying to educate the public about the dangers of smoking that they have gotten into a rut with that idea. Now if they find other causes they will have egg on their faces. If I have learned one thing in this past year and a half it is the doctors never want their words questioned. That can lead to serious consequences. Too many people assume to many things about lung cancer. They have put so much into the negative outcome that they ignor the positive. They treat every person diagnosed with the outlook that sooner or later that person is going to die of lung cancer. Why? Because they are blinded to things that matter like faith, hope and love as well as positive attitude. We had a chemo nurse tell us that attitude is 90% of the battle yet when Johnny had the best attitude that very same nurse told him that he had no chance of ever being cured and that he would be on chemo for the rest of his life. So you see it is not the attitude of the patient that has to change but the attitude of the ones we trust our lives and those of our loved ones to. I think cancer of any kind should be treated the same as any other when it comes to attitude. They should say "this is a bad disease but we will not give up because we know that people do survive and that is what we will work for." There should be a standard protocol for testing. No matter what exrays look like everyone should go through the same testing to get the right diagnosis. There are so many things that actually mask themselves as cancer and so much cancer that is hiding in with other things. When a limited amount of testing is done because of the assumption that everything that shows on an exray is cancer the patien loses valueable time to treat whatever his or her disease might be. Once it is positive that it is cancer it should be treated with the same outlook as anything else is. How many times do you hear someone say "he has diabetes he is going to die no matter what we do" or he has heart problems he is going to die no matter what we do'.? That attitude kills!!! I believe too that when doctors make mistakes and cost a person their life that they should be held accountable. I have learned the hard way that the medical boards that are supposed to investigate complaints do such a poor job that not one doctor is ever really held accountable. I filed spacific complaints about the way Johnny was treated. His rights were ignored and abused. He was given medication that caused him to stop breathing and tho he had requested to be put on a resperator if need be they ignored his wishes and continued to drug him with both Morphine and Vicodin saying it was to calm him down because he was restless. Restless because he was already over drugged. The investigation report that I got was really a dousy. They never even mentioned his name. They went to the hospital and asked THEM questions and examined their protocol for patient's rights and how they administered medications along with several other things. They made no attemp to answer one of my charges or to try to get to the truth about Johnny's death. Why because of the diagnosis of lung cancer. They all have that same attitude. To them they can't see wasting time or repremanding a doctor that kills someone when that person had lung cancer. As far as they are concerned when a person has lung cancer they lose their right to fight for their life and to be treated the same as anyone else. That has to stop. Until it does the stigma of lung cancer will just keep growing and more and more people will die at the hands of the very people that they trust their lives to. The medical boards who investigate reports of rights abuse and wrongfull death need to learn that it is their job to do more than cover the asses of the doctors and hospitals. In my research I learned two important facts. Up until just recently if a doctor had a claim filed against him or if he was cited for wrong doing he could tell them that he did not want it make available to the pubic and it was not disclosed! Even if he was found guilty he could keep anyone from finding out. Now that is changed but it happens so seldom and it is so hard to get that information that most never find it. Another thing I have learned is that both insurance companies and Medicare pay bonuses to doctors who save money by not ordering too many tests to diagnose!! That is outrageous!!!! We pay for that. It is not charity it is our lives and our money and they have no right to do that. Now I say lets give the government some of these issues to look at. It a person has lung cancer they have it. How they got it or why should not come into the issue of how they are treated. Everyone has the rights to be treated like humans not a DISEASE!!!!!! Lillian Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.