Advocacy Action—Speaking Out for Others When Survivors Can’t Do It Themselves
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By Susan Mantel

Advocacy Action—Speaking Out for Others When Survivors Can’t Do It Themselves

By Susan Mantel


When my uncle died of lung cancer in 1996, just seven weeks after his diagnosis, my family was shell-shocked. We had so little time to process the news before he was gone.  Because we knew nothing about the disease, we thought my uncle was just really unlucky. We assumed that lung cancer had higher survival rates.

The truth is the five-year survival rate is abysmally low at 15 percent. Lung cancer is the most commonly diagnosed cancer in the U.S., with 215,000 new cases in 2008. More than 160,000 lives were lost to the disease last year alone. It is the No. 1 cause of cancer death in the U.S.

While working for Uniting Against Lung Cancer (founded by the family of Joan Scarangello, who died in 2001), I’ve found my family’s experience to be more common than not. The quick deaths, poor survivorship and sense of fatalism that people with a smoking history too often feel have all contributed to especially low levels of advocacy.

How enviously those of us on the lung cancer (and pancreatic, esophageal and liver cancer) frontlines look at the seas of pink marching past our windows; so many happy survivors to give each other hope and support! For lung cancer advocates like me, it can feel lonely. But that’s why speaking out is that much more important. By following the basic rules of good advocacy, you can help give an effective voice to all patients and families who are affected by dismal cancer survival rates.

1. If you are a survivor, speak out! You are the most powerful voice we have. People often feel overwhelmed by grim statistics. But personalized medicine is making progress in lung cancer and many other cancers. If you are a long-term survivor, you provide the extra gift of hope, so share your personal story.

2. Family and friends must carry the banner. There are many millions of us who have lost loved ones to cancer. We must be their voice, honoring them and giving hope for the future. You will be amazed at how many kindred spirits you find once you decide to speak out. It will empower and heal you.

3. Know the facts and share them. If you speak with the media, you will want to have solid information. If you have a chance to educate one person every day with one fact about cancer that’s new to that person, you will have made a difference.

4. Humanize the disease. It can be tempting to just focus on the statistics and be outraged. While that can be part of advocacy, we will not succeed if we stop there. If we want to increase public support and engage more members of our own community, we have to show the human face of the disease. All cancer survivors want to live a rich life, whether it’s playing golf, traveling, wanting to look their best, or playing with their kids. Sharing those aspects helps others relate to our survivors and see the positive potential in supporting our cause.
 

Susan Mantel is the executive director of Uniting Against Lung Cancer (formerly known as Joan’s Legacy).


FOR MORE INFORMATION:
Uniting Against Lung Cancer: www.UnitingAgainstLungCancer.org
Phone: 1-212-627-5500
E-mail: mail@UnitingAgainstLungCancer.org