I will never forget how paralyzed with fear I felt after my son Brady was diagnosed with cystic fibrosis in 2007. My tiny bundle of joy was diagnosed the same week he was born through the newborn screening program that had just been put into place in Idaho. I understand now how fortunate we are for that, but at the time, we felt anything but lucky.
As the months went by and I learned more about CF, fear, isolation and depression overwhelmed me. I grew up in a small northern town in Idaho known primarily for the whitewater rafting river nearby. Like the river, CF seemed dangerous and unpredictable. I felt helpless in my new CF world; as though I was swirling through some very dark, treacherous territory -- up a creek, without a paddle. I didn't have the slightest idea what to do.
It took an advocacy crisis in my home state in 2009 to bring my path into focus. I had never been involved (or particularly interested) in politics before, but I had heard that legislators in Idaho were considering a bill to eliminate a co-pay assistance program for adults with CF from the budget that year. While the legislation wouldn't directly affect my young son, I suddenly realized that politicians might be making decisions about his access to care and medicine one day.
I realized that many of them might not even know or understand what cystic fibrosis is, or the devastating impact that the bill could have on those living with the disease. At that point I knew that I had to stand up and speak out if I wanted to help protect Brady's future.
The instant I got started in CF advocacy work, I was hooked. The constant evolution of our health care system truly demands an elevated level of communication with lawmakers. If we want policies that provide for the needs of the CF community at both the state and federal level, we have a responsibility to be a part of the conversation.
When the FDA approved the breakthrough CF therapy, Kalydeco, Brady was lucky enough to start taking it right away, and it has made an enormously positive impact on his health. But with an annual cost of over $300,000, I immediately felt pangs of anxiety that I may need to fight for access at some point in time.
Right now, thousands of CF patients are also accessing another breakthrough drug, Orkambi, for the first time and can probably understand that feeling as well. I know that I feel compelled to advocate for access to this precious progress, and help steer us around policy obstacles as we continue our journey towards a cure.
The fact is, we are all in this lifeboat together (I am back left in this raft), and the wild waters of CF still seem to dominate our course at times. We know there are obstacles ahead -- huge rocks, logs and invisible undercurrents threatening to swallow us whole. We may not be able to eliminate all of the dangers associated with the course of this disease, but we can grab a paddle and work hard to steer our boat in the right direction. I have been amazed by the power of CF advocacy time after time.
So, if you are inspired to join me, I encourage you to sign up as a “network advocate.” You will receive an email alert when legislation demands your attention and action. In less than two minutes, a pre-written letter can be sent to the lawmakers that directly represent you. Spend one more minute personalizing your connection to CF, and you have deepened your impact.
You can also call your local or regional CF Foundation office and ask about advocacy opportunities in your area. Remember, there is no need to be an expert on politics to be an advocate. The most powerful thing you can do is simply share your experience with CF.
Learning about the daily struggles of living with CF and the expenses associated with caring for the disease can be an eye-opening experience for lawmakers. All of a sudden, the conversation is no longer about some kid with a rare disease…it is about Brady.
Last March, I became the national advocacy co-chair for the Foundation with a fantastic partner, Melissa Shiffman, a wife and mother of two, living with CF in New York. We rest on the cusp of changing the course of this disease forever with scientific progress. Why not help and advocate? There has never been a more important time to speak out.