Advocacy: making a difference

Today’s post features a guest author; my friend Stephanie Dunn Haney.  We met through the Inspire online support group for lung cancer almost two years ago. She is the mother of two young daughters yet (amazingly) also finds time to be a committed lung cancer advocate. I felt it would be both interesting and inspirational to hear from her:

I am blessed to have found my voice.  I am a lung cancer advocate.  For me, lung cancer had profoundly impacted my life in order for me to understand the true need for my voice to be heard.  I have a family and a full-time job, but lung cancer advocacy sits right up there among my highest priorities.  I simply must make a difference while I am blessed enough to remain here.  And frankly, I think it has had a positive impact on my health!  I was diagnosed with Stage IV lung cancer at age 39, in October, 2007.  At the time, my daughters were two and a half and four and a half.

I immediately began learning all I could about my own case, to drive my own medical care, and about lung cancer in general.  I was appalled by every statistic I read, as I learned it was the deadliest cancer and among the least funded per death. The politics of pink has taken over our country (for a disease with an 89% 5 year survival rate), while lung cancer is stigmatized and ignored.  It is viewed as a self-inflicted disease, which is an awfully cruel way of looking at it—does one really deserve to die because of a, presumably, annoying habit (if so, none of us on this Earth would be still here…)?  But even if you can’t sway someone to have the compassion to understand that over 160,000 annual lives lost is worthy of attention, get this…never-smokers alone would make up the sixth biggest cancer killer, just under the other major cancers and killing more than leukemia, or lymphomas, or ovarian, or liver cancer…just to name a few.  I learned that this disease affects a much more diverse crowd than I once believed…in fact, the fastest growing group of lung cancer diagnoses is in young women.  But one of the biggest lessons I’ve learned about this disease is how little we (the public, the federal government, the researchers, and even me) still know about lung cancer and its true impact .

So I began my crusade.  For a while I thought it was a novel idea and that I was the only one concerned about this problem.  Then I found others.  Others who had experiences and accomplishments I couldn’t begin to fathom who inspired me. The critical mass needed to make a single deafening voice hasn’t been reached, but the people on this journey and the people fighting with us are exceptional, so I know we can get there.

Perhaps no experience has taught me that more than the National Lung Cancer Partnership’s Annual Advocacy Summit.  The National Lung Cancer Partnership (NLCP) is a group that prioritizes advocacy, research (through private grant funding), and patient support.  The Summit has taken place in the spring over the last three years and I’ve attended the last two.  Applications are typically available in January.  Go to www.nationallungcancerpartnership.org, for more information.

Each year NLCP fine tunes the topics, the agenda and the available resources, and man, do they know what they are doing!  They secure top notch speakers on communication, fundraising, community events, and other pertinent topics.  They discuss the science of the disease and up-to-the-minute advances in research.  This year’s big developments were the addition of a returners’ track of sessions and a flash drive to take home with all the documents and presenter handouts and slides (in addition to the notebooks we used on site).

The Summit can be an overwhelming experience; at least it was for me.  Both years, though I was participating in online communities, researching my own potential clinical trial opportunities, fundraising and educating anyone I could get my hands on, I was enveloped in my own personal “tragedy” (though, gratefully I’ve learned to live a new “normal” over the last three years).  But when you walk into a room of about seventy-five people with this intense, shared experience of many survivors, and also loved ones who are fighting for the rest of us in someone’s memory or honor, the reality of our situations come flooding back to us.  I reminded one warm, lovely woman of the daughter she was about to lose (Kara passed away within months of that Summit), and she reminded me of my own mother, who will soon experience the same loss.  Then there are those who have successfully battled the disease, perhaps even to the point of being cured, and those of us who will never conceivably rid our bodies of tumors  We retain the hope of holding them stable as long as possible.  There is so much emotion at all times in the room; it is sometimes inspiring, sometimes devastating.  Yet only powerful, positive things come out of the Advocacy Summit.

NLCP, through its Advocacy Summit, builds advocates from the ground up.  You come away prepared to DO SOMETHING!  (You even work on an action plan prior to your departure!)  You come away with resources, new networks, and new friends and supporters.  And the organization helps you get there.

I have also worked closely with the Lung Cancer Alliance, an exceptional organization that has a number of quality patient support programs and lobbies extensively in Washington for federal dollars.  There are other groups like these two around the country that do amazing educational and fundraising events.  Different advocates with different strengths or priorities will likely be drawn to different groups.

So since my diagnosis, I have done a little bit of everything.  To be an advocate, you don’t have to dedicate all your time, just give what you can.  I have created bulletin boards, had displays at school health fairs, visited Washington, D.C. to speak to legislators, raised over $25,000 with a group of friends here in my community (and more this fall!), I have written essays, commented on online news stories, gotten resolutions passed in my state house and senate each year, and been featured in our newspaper.  And ironically, the one area of advocacy that I just had no interest when we learned about it at the Summit, scientific consumer advocacy (having a voice in research), I’ve learned that I love, having assisted as a consumer reviewer with other advocates with the Department of Defense Lung Cancer Research Program, and having just been invited to participate in as a consumer advocate with the University of Pittsburgh specialized lung cancer program (called a SPORE).  Now, many have done much more than me, or have done much larger scale events with bigger publicity or even helped shape policy…really heavy stuff.  But you don’t need to feel like you have to set fifty different goals for yourself.  Your impact will be great regardless of what your time and interest will allow.

Pick one or two things.  There’s no competition for who raises the most money, or meets with the most politicos, or even staffs the most health fairs.  Speaking for those living with the disease, we appreciate any attention or time you devote to battling lung cancer.  And there are so many types of things you can do to fit your own interests and talents (various forms of writing, patient support programs, awareness programs, fundraising, events, visits to elected officials, etc).  Plenty to go around and we need whatever help you can give.

Consider starting with this…November 6th is NLCP’s Free To Breathe National Walk, which basically involves walking on your own or in your own groups where you are, in solidarity with the rest of us around the U.S.  There may be a larger, programmed Free To Breathe Run/Walk in your area on a different date in the fall, and that would no doubt be an equally impactful and fun-filled event.  Check http://freetobreathe.org for details and dates.  The National Walk, specifically, is a great, low-key way to raise some money and pay tribute to those affected by the disease.  You just register online, fundraise online, and walk wherever and with whomever you want on November 6th.  No group is too small!  And you are always welcome to join “Team Haney” (you don’t even need to physically walk with us in Bloomsburg, Pennsylvania, though we’d love to meet you!), a highly successful and top earning National Walk team two years running.  Or form your own team and give us a run for our money…

So the reality is this in lung cancer advocacy–there are few survivors of lung cancer for any length of time to sustain our own campaign (i.e.  it’s a “high turnover” cancer…).  We simply can’t do it alone.  Family and friends jump in on our behalf, still many don’t…the pain and the need to move dim their passion for advocacy.  I don’t expect my family will carry on my advocacy (though, I have hopes that my daughters might someday speak for me again, and I work hard to teach them every day to use their voice).

If you are a survivor, you need to jump in quickly and MOVE!  Hence, “advocacy in the fast lane”!  Our stories make an incredible impact, personalize the problem and make it more sympathetic to the average, uninformed person.  And our advocacy work brings great fulfillment and a sense of accomplishment, not to mention a whole new circle of friends and supporters (And as I mentioned, I fully believe that because I view my advocacy as part of my life purpose, my passion and drive serve to keep my heart pumpin’!)  And to those who have lost someone to the disease, I would make an empassioned plea to speak up.  We need our voice to be deafening!  Federal dollars are so sorely needed to combat lung cancer, and we receive such a tiny fraction of the funding that other, less deadly cancers receive.  It’s sad when it becomes a competition, and I certainly wish cancer on no one, but the truth is many other cancers are far more legitimized and more supported, and lung cancer is neglected and its progress stagnant, comparatively.

Jump in and help us make this movement snowball!  This is a cause where your help truly makes a difference!