From Advocate to Activist
Tammy Allred is a thoracic oncology nurse navigator for the Multidisciplinary Thoracic Oncology Program and a patient advocate at the North Carolina Clinical Cancer Center in Chapel Hill. She is from Mebane, NC.
I was recently chosen to attend the second annual Lung Cancer Advocacy Summit held in Dallas by the National Lung Cancer Partnership, a nonprofit organization dedicated to decreasing deaths due to lung cancer, and helping patients live longer and better, through research, awareness and advocacy.
As a member of the first state chapter of the National Lung Cancer Partnership in North Carolina, I had some exposure to advocacy and was expecting to hear people speak out for the cause they believed in. I also hoped to learn more about making the cause known to others by getting the message out to the media for much-needed attention for lung cancer awareness. The summit offered these things and so much more.
The opening of this meeting was so emotional and humbling that words cannot really explain it. Joan Schiller, MD, president of the National Lung Cancer Partnership and internationally renowned for her work in lung cancer, welcomed participants in her opening speech. The statistics presented about lung cancer were unbelievable. While lung cancer claims 167,000 deaths per year, it only receives $1,100 in research funding per death, whereas breast cancer receives $24,000 per death. Lung cancer is the least funded of breast, prostate and colorectal cancers, and yet causes the most deaths of all three combined. What is wrong with this picture?
Schiller had everyone go around the room and introduce themselves. I thought most people might be healthcare workers, family members, social workers and maybe a few patients. I was so wrong. I have never been so dumbfounded, humbled, inspired and touched by such an awesome group of people! There were many tears shed at the stories, and also some laughs and cheers. No one was ever alone. There were so many survivors there fighting for their cause - fighting against the evil that was stalking them. So many warriors were in that room to tell their stories. There were also parents there to represent children they had lost, as well as aunts and husbands there, some of whom were left to raise young children or teenagers with no wife or mother. They were all united by this one cause and fighting to raise awareness for the silent killer that stalks so many and has so little research and awareness. Despite the challenges all of these people faced, they still were looking to help others.
Kathy Joosten, Academy Award-winning actress from the television show Desperate Housewives, was a guest speaker for the event. She is a survivor, an advocate, a former nurse and an inspiration to all.
On day 2, we toured the UT Southwestern Medical Center, where Schiller is the chief of the Division of Hematology and Oncology. The scientists there were so enthusiastic and focused about lung cancer research. It was obviously more than just a job to them. They were all vested - personally, emotionally and professionally - in lung cancer research. Seeing our group and knowing that some were survivors brought it home to them. As researchers explained that cancer cells never die, the anguish was visible on survivors' faces. This made me want to do more as an advocate. I wanted to go hug the person and throw away the cells, but I know it would not ultimately make a difference. The difference will occur when research CAN kill these cells and eradicate them from a person. This made it all very personal to me.
The stigma that follows this disease is unfair and unjustified. When I see patients suffering from lung cancer every day, it doesn't matter to me whether they are smokers or non-smokers. They are all suffering. No matter what, no one deserves this disease! Everyone deserves good care and treatment. We have to become one united front to stop this silent epidemic. In all of my years of nursing, I have seen too many suffer with this disease. Too many die too young and too fast.
I may have gone there as an advocate, but I came back changed in so many ways. I came back an activist.