A Letter to Congress

Here is the letter I wrote and sent off to my congressman last weekend. The facts I am using come from The Lung Cancer Alliance fact sheets. You can send my letter (cut and paste) to your congressmen with a cover letter of your own saying "Please support legislation for lung cancer screening and research. Tom is my (relationship (i.e. brother, friend, etc.))."

E-mail other people you know. You can copy and paste the letter into your e-mail and send it on with a note saying: "Tom is my (relationship). Don't wait till its too late. Its time we do something for lung cancer victims. Support legislation for lung cancer screening, research and awareness now. I would like to ask that you demand hearings to learn why lung cancer -- the deadliest cancer -- is the most underfunded cancer in America."

Here is my letter. Let me know if you will help me start a grass roots campaign going to demand more be done NOW.

MY LETTER TO CONGRESS

The Honorable Tim Mahoney
Member of Congress
P.O. Box 71373Washington, D.C.20024
March 22, 2008

Dear Congressman Mahoney:

I am writing to you because you have made the health care crisis in America a top priority of your political agenda. Victims of lung cancer need leadership in Washington. We need your help to enact legislation that will change the national debate on health care. This letter is to request a meeting with you at your earliest convenience to discuss in depth how we can start to re frame the health care debate on Capitol Hill, with emphasis on:

• Preventative Health Care
• Setting clear national priorities and goals for curing the diseases that are most injurious to our society
• Rethinking the mechanisms and systems for delivering quality health care to the uninsured
• Defining the roles that government and private insurance should play in health care
• Providing choice and quality for consumers through transparency and free market competition

By way of background, I am a 52 year old former smoker residing in Punta Gorda, FL who was diagnosed in October 2007 with Stage IIIA Locally Advanced Adenocarcenoma (Non Small Cell Lung Cancer). I was addicted to a 1- 2 pack-a-day cigarette smoking habit for nearly 35 years until I finally quit – using the prescription drug Chantix, now offered by Pfizer.

I tried to quit many times over the course of my lifetime but never succeeded because of the highly addictive nature of nicotine. It was not until I was prescribed Chantix – which blocks the dopamine receptors in the brain from being stimulated by nicotine-- that I was able to quit my smoking habit for good. Finally we have a drug that counteracts nicotine addiction and a cessation strategy that works. If a drug like Chantix had been available 20 or 30 years ago, I might not be writing to you now.

As a long-time tobacco user, I knew I was at risk. I was diligent about having my lungs checked by X-ray regularly for signs of disease. Unfortunately, the chest-x-ray I had in 2005 did not detect any abnormality. By the time I had another X-ray done in 2007 a malignant tumor in my right upper lung posterior had grown to the size of a baseball and invaded the mediastinum and hilar lymph node area. There are no nerve endings in your lungs so early stage lung cancer frequently presents no symptoms. If I did not go for my annual check-up and routine X-ray last October, I might never have known about my lung cancer until the disease had progressed beyond hope.

The primary reason lung cancer is so deadly is because it is detected too late for effective treatment. Both breast and prostate cancer have accepted screening protocols. These cancers can be detected at earlier stages and treated effectively. Today the five-year survival rate for breast cancer is 89 percent; the five-year survival rate for prostate cancer is 99 percent. Even colon cancer has a five-year survival rate of sixty percent. In comparison, fifty percent of lung cancer cases are diagnosed at Stage IIIB and IV; only 5% of these people live for 5 years or more. Most succumb within a few years of diagnosis. In the little time they have left, lung cancer patients are fighting for their lives – not organizing political rallies and fundraisers for a cure. The overall five-year survival rate for lung cancer is 15 percent –hardly any improvement since the 1970’s when it was 13%.

Yet, the facts are:

• Lung cancer is the leading cause of cancer death in the United States. More than 160,000 Americans will die of lung cancer this year. That is a number equal to the total number of troops serving in Iraq or the equivalent of a fully loaded 747 crashing every day of the year. It is a needless loss of life. We need to act now. There is no time to waste on taking action.
• Lung Cancer is the leading cause of cancer death among Caucasians, African Americans, Asian and Hispanic males. There are no racial boundaries. The disease impacts every segment of our society.Lung Cancer accounts for 30% of ALL cancer deaths.
• Lung cancer will kill more people this year than breast cancer, prostate cancer, colon cancer, liver cancer, kidney cancer, and melanoma COMBINED.
• Lung Cancer will kill three times as many men as prostate cancer and twice as many women as breast cancer this year.

When the "War on Cancer" began in 1971, lung cancer was the leading cause of cancer death. It still is. Funding of the NIH was $400 million in 1971 and in 2007 it was $4.78 billion. Despite being the leading cause of cancer death, lung cancer funding has been less than the funding of other cancer research by astonishing amounts. The Lung Cancer Alliance estimates that NIH, DOD and CDC Cancer Research funding for breast cancer is over $23,000 per death per year. Prostate cancer gets over $14,000 in research dollars per death. Colon cancer gets just over $5K per death per year. The amount allocated to lung cancer - which accounts for more deaths than all the above combined -- gets only $1,878 per death per year. Does this make ANY sense to you?

High survivorship rates in breast and prostate cancer has translated into political pull in getting research dollars devoted to these causes. The unfortunate fact is that lung cancer victims have no political sympathy or power. Moreover, there is an unspoken stigma attached to the disease: you brought it on yourself so suffer the consequences. In many respects the stigma is reminiscent of HIV/AIDS in the 1980s – which was seen as a disease that afflicted its victims because of lifestyle choices.

The sad fact is that, – for decades now -- lung cancer has lost its place on the political agenda in Washington. The largest advocacy group speaking specifically for lung cancer victims is the Lung Cancer Alliance, which has seven full time staff and a $2.3 million budget. Compared with their political adversaries, they are a tiny organization trying to represent current and future victims of lung cancer. The case for funding lung cancer research and awareness is stunningly clear. Washington needs to act the way it would act in a time of war.

We know who are at risk for getting lung cancer -- smokers and former smokers like myself. There are approximately 70 million of us. Current smokers account for 35 - 40% of lung cancer cases. The rest are former smokers (50%) or people who never smoked (10 - 5%.) The facts show that early stage lung cancer is treatable and has much higher survival rates. People who have lung cancer detected at Stage I and II are often candidates for surgery. Long-term survival for those who can have surgery is significantly improved.

Lung cancer is both preventable and curable if found early. I started smoking as in 1972 and first attempted to quit when I entered college in 1974. I tried many times over the years to quit but never could. If it were not for the development of Chantix, I would likely still be smoking. I just wish we had been able to develop such a drug in the 80’s. At that time political pressure in Washington resulted in billions of dollars being directed toward HIV/AIDS research and finding a cure. Lung cancer research was taken off the list of priorities and it has never gotten back on. Nicotine users today provide the federal government with over $8 billion a year in excise taxes. Why can’t some of these dollars – being provided by the victims themselves -- be used to for lung cancer research and screening?

We need to get our national priorities straight regarding health care. We have the tools for making a significant impact on reducing the number of smokers and providing for early screening and early detection of lung cancer. What is needed is the research dollars and funding to improve the tools that we know work and are currently at our disposal. A prominent researcher, Dr. Claudia Henschke, Division Chief of Chest Imaging at New York's Cornell Medical Center, is optimistic about the benefits of screening using new low dosage spiral CT scans. She and her co-investigators foresee the possibility of lung cancer survival rates skyrocketing from the current 15% to possibly 70% with so many tumors being found at the treatable stage. Why are we not using these tools right now?

Or at least providing the funding needed to get a national screening program in place as soon as possible? Congress could mandate that the tools we have be used, but then who is going to pay for screening and the treatments when all this new cancer is found?

I am a financial advisor working for a major brokerage firm and I am well insured. Cancer treatment is not going to bankrupt my family as long as I am employed. On the other hand, I don’t like the idea my insurance company can veto whether they would pay for a CT Scan for screening, what drugs my oncologist can use or what specialist I can see or what procedure I should have or how frequently. That choice should be strictly a medical decision that I make in consultation with my doctor. Had I had a low dose CT scan early on, again, I might have had fighting chance. As it is I only have a relatively small chance of living for the next five years.

As long as I have insurance that is reasonable, I’ll be OK, but I think about people in Charlotte County who are unemployed right now or without insurance facing my situation. We -- as a caring people -- need to have a system in place that can help these people too.

I happen to be a Board Member and Treasurer of St Vincent de Paul Community Health Care, Inc., which recently opened a clinic to provide primary health care for the working poor and uninsured in Charlotte County. In the first few weeks since the clinic has opened over 200 patients have been seen. If we get the funding in place, we expect to be providing primary (preventative) care to literally thousands of families in Charlotte County in the coming year. What are we going to do when we find UNINSURED patients with lung cancer or other chronic disease? Where is the money going to come from to treat these patients?

Our SVDP Free Clinic and Pharmacy is an experiment and the idea of two compassionate healthcare providers – Dr David Klein and Dr Mark Asperilla and a retired business executive, Tom Ferrara, who began the free pharmacy seven years ago. They have given me the job now of trying to figure out how fund both the clinic and pharmacy to provide primary care services and from there, how to create a system for taking care of uninsured patients with chronic disease. It is a daunting task that is giving me some insight into the many problems that we face in health care in general.

I would like to enlist your help in getting lung cancer research and awareness back on track as a high health care priority. At the same time, I would like to discuss ideas about how Washington might develop a "Free Community Clinic" model such as our Community Clinic on a national basis for treating the working poor and uninsured.

Frankly, I am against a wholesale government "takeover" of our health care system – which is where I am afraid we are headed. There is no question in my mind that the current system is broken and needs to be fixed. It is time we set national goals and priorities that make sense – funding preventative health care and funding research aimed at finding, treating or curing the most deadly diseases, beginning with lung cancer.

It is time that we develop a model for providing free primary health care to the poor and uninsured. We need to develop a system that provides incentives for doctors, nurses, and others to donate their time and expertise without fear of subsequent lawsuit. On-going funding of Free Clinics should come from both government and the private sector. For example, what about taxing businesses that don’t provide any health care benefits to employees? What about having government bulk purchase pharmaceuticals for distribution through a national network of "free pharmacies" for qualified individuals? Shouldn't we provide incentives to "for-profit" hospitals, imaging centers, laboratories for supporting local free clinics and pharmacies? I believe there is a lot we can do around the concept of having Free Clinics in every community that would give relief to those in need. I think it is a subject worth exploring.

I am ready to meet with you here in Florida or in your office on Capitol Hill whenever would be convenient. I look forward to hearing from you soon to arrange a meeting.

Sincerely,

Thomas E Cappiello
26146 Rampart Blvd
Punta Gorda, FL 33983
Tel: 941-628-4204