A few months ago, I was asked to serve as a patient representative on the Thoracic Steering committee for SSM Hospital system. The goals of the committee are to improve care for the many lung cancer patients within the community and I was really excited to be invited to join this important cause. The committee includes some dedicated thoracic surgeons, medical oncologists, pulmonologist, nurses and administrators who truly want to make a difference in the way that lung cancer patients are treated in our community.
During the last meeting in December, there was a lot of excitement about the release of information regarding the National Lung Cancer Screening Trial (NLST), which has shown a 20% reduction in lung cancer deaths through use of CT scans for early detection in those who are known to be at high risk for the disease. The focus of these dedicated professionals in this particular meeting was to move toward insurance coverage of this important live saving procedure. I was asked to contact the American Lung Association to garner support for this movement. The ALA has recently begun a program to include lung cancer within its scope of interest so I thought it might be a great opportunity for them to show support for lung cancer patients.
I was extremely disappointed to read their position with regard to lung cancer screening.
Washington, D.C. (November 4, 2010)—
The American Lung Association is encouraged by the preliminary results of the National Lung Screening Trial released publicly by the National Cancer Institute today, and eagerly awaits the publication of the full article. This is the first optimally designed clinical trial to show that lung cancer screening could reduce mortality (deaths) from lung cancer among a high-risk population. This long-awaited study has potentially wide-ranging impact in the fight against the leading cancer killer in America.
“The American Lung Association has awaited this NCI study, and although the findings need further examination, the potential of a 20 percent reduction in lung cancer mortality, due to lung cancer screening is a finding of immense importance,” said Dr. Norman Edelman, Chief Medical Officer of the American Lung Association.
It is important to stress that the best method for reducing lung cancer risk is to reduce smoking, the leading cause of the disease. The best way to avoid lung cancer is to never start smoking, and if you do smoke, to quit as soon as possible. The most effective tools in fighting tobacco use are to provide tobacco cessation support, increase taxes on tobacco products, support smokefree air laws and eliminate marketing of tobacco products to children, since most smokers start before the age of 18. This recommendation echoes that of Harold Varmus, M.D., Director of the National Cancer Institute, which released this report.
This position is astonishingly cold and uncaring in its disregard for the thousands of lung cancer patients that could be saved through screening. It is especially disturbing coming from an organization that presents themselves as lung cancer advocates. Think of all the moms, dads, sisters, brothers and even sons and daughters that could be saved. This position not only allows unnecessary deaths it continues to add to the discrimination and stigmatization of patients with lung cancer.
There are a couple of other points that need to be considered when one blames the patient instead of choosing early diagnosis and cure. The first is that initial and on going scanning would be an excellent opportunity for medical intervention to address smoking cessation. This has been shown to be an effective time to intervene by local lung cancer scanning studies that report great interest among patients to begin smoking cessation programs in conjunction with lung cancer screening.
The second is the high cost of treating late stage lung cancer. When one tallies the financial burden of palliative care during the ten or eleven months of the average life span of a stage IV lung cancer patient, the costs are tremendous. Chemotherapy to reduce pain and improve the quality of life can cost over $20,000 per treatment and is usually given every three weeks. If the treatment lasts for the standard 6 cycles that would be $120,000. This would not include the costs of any radiation for pain control or treatment for effects of chemo. The reimbursement for stage I lung cancer surgery is around $85,000. Aside from the dollar cost, at the end of the treatment for stage I lung cancer, you have a functioning member of society. At the end of stage lV treatment is only death. There is also a huge emotional loss that cannot be measured in dollars but is obviously not important to the American Lung Association.
As a lung cancer patient who would not have qualified as “high risk” under the guidelines established by the NLST, I do believe that not supporting screening is an absolute slap in the face to all lung cancer patients and their families. It clearly indicates that lung cancer patients are not worthy or deserving of effective treatment. I have been through nine different treatment regimens and have experienced much discrimination and many hurtful comments, but the position taken by the American Lung Association is by far one of the most disappointing and discouraging things I have faced.
Lets do what we can to put a face to lung cancer. We are just people with a bad disease……No one deserves lung cancer and every lung cancer patient needs to be treated with respect, dignity and has the right to early screening that has been shown scientifically to be effective.
Myrtle
