Learn How to Become a Lung Cancer Advocate

How Can You Make a Difference in Lung Cancer Advocacy?

lung cancer awareness ribbon
How can you become a lung cancer advocate?. Istockphoto.com/Stock Photo©Nauma

If you are living with lung cancer, have a loved one with the disease, or just want to advocate for a disease in which you can have a large impact, you may want to become a lung cancer advocate. What does it take to be an advocate? What exactly does an advocate do? How can you get started? Thankfully, the only thing needed to become an advocate for lung cancer is to care.

Advocating for Yourself With Lung Cancer

If you or a loved one are living with cancer, the most important first step in advocacy is to advocate for yourself.

Certainly, lung cancer needs as many advocates as possible to raise awareness as well as funding for better treatments. Yet, if you are coping with the disease yourself, the first thing you need to concentrate on is your own health (or that of a loved one with the disease.) This doesn't mean you can't be an advocate for others—just that you need to take care of yourself first. In fact, many people learn how to best advocate for others through their own experiences in navigating cancerland. Before reading on, make sure to check out these tips on how to be your own advocate in your cancer care.

Who Can Be a Lung Cancer Advocate?

The truth is that anybody can become a lung cancer advocate. Of course, the amount of time you can commit will vary, but whether you spend one hour a year or 40 hours a week, every single minute of your time is needed and worthwhile. The only prerequisite is that you want to make a difference for the far too many people who have had to hear—or will hear—those dreaded words: "You have lung cancer."

What Can You Do to Advocate for Lung Cancer?

The list of what you can do to raise awareness and support for lung cancer is almost limitless. If you don't have any idea where to start, you can check with any of the lung cancer organizations below and simply ask. 

Some people enjoy distributing patient education materials to doctor's offices.

Others facilitate support groups. Some people love gathering a crowd and organizing big events. Others would rather sit quietly at home and send letters to their congressmen and women about the need for more funding for lung cancer.

When thinking about a way that you can volunteer your time, consider your interests and gifts. There are so many ways in which help is needed that you don't need to try to fit the proverbial square peg into a round hole. If you despise public speaking, talking in front of a group of people about lung cancer may not be the best choice.

We've seen brilliant creative ideas come to fruition in the past few years. Don't be afraid to suggest an idea just because you haven't seen it done before. Don't let that intimidate you. Go for it!

What are your strengths? Are you a writer? If so, there are literally hundreds of ways that you can use that skill to help raise awareness. Are you a one-on-one type of person? Perhaps being available to someone newly diagnosed could be your calling.

Even just sharing a few statistics about lung cancer with a close friend can be considered a form of advocacy.

Ideas for Lung Cancer Advocates

Here is a quick list of ideas just to get you thinking, short in order to let you concentrate on your own innovative thoughts:

  • Some organizations such as Lung Cancer Alliance and LUNGevity have educational materials that they can send you. You may then deliver these pamphlets to oncologist's offices, support groups, health fairs, or anywhere else you think they would be helpful.
  • Attend a race or other type of lung cancer awareness event put on by one of the lung cancer organizations.
  • Attend a regional or National HOPE Summit in order to meet people you could team up with in some way.
  • Write to your congressman or women.
  • Become involved with the Department of Defense.
  • Join one of the lung cancer organizations and storm the capitol.

Lung Cancer Advocacy Organizations

There are several different organizations committed to making a difference for those with lung cancer. Thankfully, and unlike some condition based organizations, there is not a lot of competition between these groups. In fact, many people participate in more than one of these organizations as an advocate. You will not be “stepping on toes” or offending one organization if you choose to work with another group at the same time.

Lung Cancer Organizations in Need of Advocates

Some of the organizations in need of advocates are listed below.

  • LUNGevity - LUNGevity is the largest organization focused completely on lung cancer. They support people with lung cancer through research, education, and support. If you wish to "hang out with" a bunch of other lung cancer survivors, attending one of their regional summits or the annual HOPE Summit in Washington D.C. gives survivors a chance to meet hundreds (yes, hundreds, that's not a typo) of other people with lung cancer face to face.
  • Lung Cancer Alliance - The Lung Cancer Alliance is also a large organization dedicated to improving the lives of people with lung cancer through research, awareness, and support of those living with the disease. Lung Cancer Alliance is a very active organization when it comes to public policy, and it's Shine a Light on Lung Cancer events are now spanning the country. If you have an interest in politics or effecting changes at a governmental level, LCA might be a good fit for you.
  • American Lung Association - The American Lung Association is another organization that's changing the face of lung cancer. If you've heard of a "turquoise takeover" in your city, you've heard of the ALA. Advocates for lung cancer, called the LUNG FORCE are spreading awareness in many ways. While equally supporting people of both sexes with lung cancer, the ALA has been instrumental in educating the public about lung cancer in women and that women are more likely to die from lung cancer than breast cancer.
  • Bonnie J. Addario Lung Cancer Foundation - As with the other organizations listed here, the Lung Cancer Foundation provides advocacy in a multitude of ways, from education to raising money for research. It stands out as an organization where young people with lung cancer are being recognized. Through their research, we are learning that lung cancer in young adults is unique in many ways, and learning about some of these ways can be important in getting the best care possible if you are a young person with lung cancer.
  • Others - There are many other organizations focused on lung cancer awareness. From Upstage Lung Cancer to LiveLung, to Team Draft, to Citizens for Radioactive Radon Reduction, take the time to get to know some of these lung cancer organizations to see which ones fit your individual talents and desires for advocacy.

Should I Be an Advocate if I’m a Survivor?

As noted right away, your first concern as a survivor should be with your own health. No matter how appreciative you are of any support you've received, there is nothing that says you have to "give back." It is a guilt-ridden misnomer that you must begin wearing a ribbon to raise awareness the day you are diagnosed. Don't feel you have to go there. In fact, it is the responsibility of those of us who are not survivors—but  care for survivors—to be a voice for those living with the disease.

That said, your story can make a difference. The public needs to see the face of lung cancer, especially given the stigma. The public needs to understand that more of our mothers, sisters, and daughters are lost due to lung cancer than breast cancer. That we lose more fathers, brothers, and sons due to lung cancer than prostate cancer. When the public sees real people living with a disease that no one should have to face, they open their eyes. Lung cancer is no longer the second half of an antismoking commercial but is then a condition a precious human being must cope with.

Numbers of Survivors

One of the reasons your voice is needed is that there are simply too few lung cancer survivors out there to raise awareness as has been done with some other cancers. We've heard from breast cancer survivors that lung cancer survivors need to "get out there" to gain the same support. Yet to get out there, you need to have lungs and to get out there, you need to live.

As of January of 2016, there were 3,560,570 breast cancer survivors in the U.S. compared with 288,210 female lung cancer survivors. At the same time, there were 3,306,760 prostate cancer survivors, compared with 238,300 male lung cancer survivors. Even though there are fewer survivors, it does not mean that lung cancer is less serious. Almost twice as many of our mothers, sisters, and daughters will die of lung cancer than from breast cancer, and three times as many of our fathers, brothers, and sons will die from lung cancer than prostate cancer.

What About Smoking Cessation?

There are some organizations that focus on smoking cessation, and that is commendable. But what is needed most for those living with the disease today is not a lecture on smoking cessation. The majority of people who are diagnosed with lung cancer in 2016 are non-smokers (they either quit smoking or never smoked) and a few months after diagnosis, only 14 percent of those with lung cancer continue to smoke. 

Certainly, those who want to make a difference in this way are welcome. The point, however, is that people living with the disease need support today, and there are many reasons quitting smoking won't eliminate lung cancer deaths.

Overall, many of the lung cancer organizations focus on lung cancer rather than smoking. Most people are aware that smoking causes lung cancer, but fewer are even aware of the color of the the lung cancer ribbon.

Financial Considerations in Advocacy

Only you know how much time you can spare for advocacy. For those living with the disease, finances can be very tight. While advocacy is for most purposes a volunteer position, keep in mind that many of your expenses related to advocacy—such as mileage when going by car and more—are tax deductible. If you are a lung cancer survivor make sure to check out the tax deductions for people with cancer to make sure you don;t miss any of these.

Lung Cancer Facts for Advocates

Having a list of a few numbers (statistics) is helpful when talking to people about lung cancer. One question that often comes up in advocacy conversations is the issue of smoking? You've likely heard people talk about smokers vs non-smokers lung cancer. Thankfully, among the advocacy organizations mentioned earlier, smoking status doesn't matter, nor does anyone ask. If we are going to truly make a difference with lung cancer, everyone needs to stand united. There is a fine line between using the fact that never smokers develop lung cancer to raise awareness and catch the attention of the public, and increasing the stigma of lung cancer. Many of these organizations are doing an excellent job of opening people's eyes by mentioning the risk of lung cancer in non-smokers without implying that those who have smoked are any less deserving of excellent care.

10 Facts About Lung Cancer:

  1.  Lung cancer is the leading cause of cancer deaths for both men and women in the United States. Lung cancer kills almost twice as many women as breast cancer and three times as many men as prostate cancer.
  2. The majority of people who develop lung cancer today are non-active smokers. They either never smoked or quit smoking.
  3. People who have smoked are still at risk years and decades later. Low dose CT screening may detect lung cancers in the early stages and improve survival.
  4. Lung cancer may be decreasing in general, but is increasing in young people, especially young, never-smoking women.
  5. Not all lung cancer is caused by smoking. The second leading cause of lung cancer is radon gas our homes. Radon is an odorless, colorless gas that is released during the normal decay of uranium in the soil. Increased levels of radon gas have been found in homes in all 50 states, and since it occurs in the home, theoretically women and children are at greatest risk. A simple radon test is all that is needed to know if you are at risk.
  6. Even if you smoked (or if you didn't smoke) you can lower your risk of lung cancer. Learn about the risk factors for lung cancer. Avoid exposure to household and occupational chemicals which may raise risk. Even mild exercise lowers risk, and a diet rich in certain foods can reduce your risk.
  7. The 5-year survival rate all stages of lung cancer combined is around 18 percent. For breast cancer, it is 89 percent and for prostate cancer almost 99 percent. We need better ways to detect lung cancer in the earlier more curable stages for everyone.
  8. Anyone can get lung cancer. Women get lung cancer. Never smokers get lung cancer. Young adults get lung cancer. All you need to get lung cancer is lungs.
  9. Lung cancer treatments and lung cancer survival rates are improving.
  10. In order to develop new treatments, funding is needed. Funding for lung cancer is grossly underfunded relative to breast cancer.

Patient Advocates and Patient Navigators

If your gift lies in helping people who are newly diagnosed navigate the maze of lung cancer treatment, you may want to consider becoming a patient navigator or patient advocate. This differs from the "patient advocates" you may hear of which may be provided by your insurance company. A patient navigator is just what the name implies. This person is experienced in what happens when someone is diagnosed and can help you follow all of the steps needed to get the best care possible. Here is some information on   how to become a patient advocate or navigator

Bottom Line on Becoming a Lung Cancer Advocate

If you want to become an advocate for lung cancer, you can begin today. You can dedicate as much or as little time, but it's important to make sure you don't become overwhelmed or take on more than you can handle—especially if you are coping with cancer yourself.

Take a moment to talk to others who are advocates. You may want to start slowly and do something such as join a cancer advocacy site online. 

Finally,you may wonder if you are qualified to be an advocate. As stated earlier, the only prerequisite to become a lung cancer advocate is to have a heart that cares about people living with lung cancer today or who will live with lung cancer in the future.

Sources:

American Cancer Society. Cancer Treatment and Survivorship Facts and Figures 2016-2017. 01/01/16. http://www.cancer.org/acs/groups/content/@research/documents/document/acspc-048074.pdf

Norris, K. Lung Cancer Patient Advocacy and Participatory Medicine. Genome Medicine. 2014. 6(1):7.

Continue Reading