The Creation of Lung Cancer Alliance 20 Years Ago

By Peggy McCarthy

Peggy poses center with ALCASE co-directors Nadine Jelsing (left) and Betty Layne (right)

Peggy poses center with ALCASE co-directors Nadine Jelsing (left) and Betty Layne (right)

My name is Peggy McCarthy and I founded ALCASE, the Alliance for Lung Cancer Advocacy, Support and Education, now Lung Cancer Alliance, in 1995. My inspiration for doing so was a passionate advocate and dear friend who dedicated his life to fight lung cancer.

In the late 1990’s, McCarthy Medical Marketing (MMM), the organization I started in 1987 to design research-based educational programs which helped improve the healthcare system,  became aware of a great gap in knowledge, effective diagnostic procedures, availability of treatment and advocacy for people living with lung cancer.

At that time most people lived less than a year after diagnosis that was most often made when the person was in stage IV. MMM had suggested and then been contracted to create the first ever resource manual for people living with cancer. We were distributing it to all healthcare providers involved with diagnosing and treating cancer throughout the U.S.

In our research, which then involved thousands of phone calls, numerous trips to libraries, hospitals, and oncology centers, we could not find anything about lung cancer. No one seemed to care about this cancer that was frequently blamed on the person diagnosed with it; after all, s/he “caused it” by smoking. Lung cancer, then as now, had the highest death rates of any cancer.

We found one gentleman living in Chicago who seemed to care. Mort Liebling was a 78 year old lung cancer survivor when I called him for the first time and asked him to help with the guide. Mort would bring his business cards to his oncology office and suggested that the staff give them to people diagnosed with lung cancer if they wanted to talk to a 13 year survivor.

Within the year after the guide was published and hundreds of copies distributed to healthcare professionals in all fifty states and Washington DC, Mort was getting calls from people across the nation. During that year Mort and I became telephone buddies, as well. When we finally met, Mort asked me if, after he passed away, I would take over his role as an advocate for those living with lung cancer.

I agreed and, a few days later, returned to my office, sat down with our staff and we brainstormed. The result was to establish the Alliance for Lung Cancer Advocacy, Support and Education (ALCASE) the predecessor of the Lung Cancer Alliance in Vancouver, WA. The name was strategic because we wanted this organization to come up first in any list of cancer advocacy organizations, especially those that played any role in lung cancer.

Our first tasks were to recruit a board of directors, create a website, a newsletter and establish a telephone line where people wanting information about lung cancer could speak to an advocate.

The initial issues we tackled included:

  • Raising awareness about lung cancer, including who was and is affected
  • Raising awareness about the effect of lung cancer on the lives of women
  • Increasing treatment options for people with lung cancer
  • Finding and implementing the best early detection methods possible for those at risk

I visited Mort at his nursing home just days before his death; this was the second time I had seen him, in person, although by this time I knew Mort better than I knew many of my own relatives because he and I spent lots of time talking on the phone. I let him know that ALCASE was up and running well and would continue strongly after his death. His work would not be forgotten.

In 2002 we determined the time had come to move the organization from the West Coast to Washington DC. This had been our goal since founding ALCASE. Along with the move came the shortening of the name to Lung Cancer Alliance.

The ability to make this move was facilitated in large part by help from Sheila Ross who contacted me and began to work closely with ALCASE after her two sequential diagnoses of lung cancer. Sheila had been a Congressional staff person, holding a variety of positions for both parties in the Senate and the House. Her knowledge of the workings of Washington DC enabled this move to be smooth and leave the organization in secure hands. Everyone living with lung cancer is deeply indebted to this amazing survivor.

Sitting with Mort in the nursing home that day, I could never have imagined the accomplishments that have been achieved, the people we have helped and the lives we have saved. I am immensely proud to be part of such an incredible community and movement.