In January 2016, my son, Jack, was scheduled for his quarterly visit to the cystic fibrosis clinic at Texas Children's Hospital. In light of insurance changes in Texas, my wife wisely called our longtime health insurance provider to confirm that Jack's CF care team would still be included in the plan. The insurance company had assured us of continuing coverage just weeks before, but the company changed its tune in that first week of January; out of left field, its answer was “no.”
Texas Children's Hospital is home to the only pediatric CF center in Houston. Where else was Jack supposed to go?
We spent countless hours on the phone battling for overrides and authorization to regain coverage for Jack's care team. We filed appeals as our insurer required and wrote letters to executives. We went to a new in-network pediatrician who graciously referred Jack back to Texas Children's Hospital. The Houston Chronicle published a front page story about Jack's situation. All to no avail.
It was in those moments that I did something I had never done before -- I called Congress. I scheduled meetings with representatives in search of their help. Texas Sen. Borris Miles, D-Houston, was the first elected official that I met with. The second one was U.S. Rep. John Culberson, R-Texas. Both men expressed genuine concern and empathy. Both sprang into action on Jack's behalf.
I got lucky. Though I was nervous in my first meetings, both State Sen. Miles and Rep. Culberson were gracious and seemed to genuinely care about my concerns. Not all of my meetings with elected officials have gone as well as those first two. In many other offices, I met with entry-level staff members, and I often left thinking that I had accomplished nothing. But, I learned that every meeting and every call is logged, and the impact of many can translate into real change.
I had no idea how personal situations translated into public policy, but it was clear to me that advocating for protections for people with CF is essential. I understood that Jack's story was representative of others in the CF community, and our voices needed to be heard. I'm not an insurance expert or a legislator; I'm just a dad who wants the best care for my son.
It was that desire that brought me to Washington, D.C., on March 1 and 2 for the Cystic Fibrosis Foundation's March on the Hill. I'd had a year of support, training and participation from the local and national offices of the Foundation. The Foundation understands very well how legislation impacts our community. They told us that personal stories are the key to effectively communicating the CF community's needs.
At March on the Hill this year, there were 54 teams of over 100 advocates from 43 states. Collectively, we had nearly 300 meetings. Many of us, including me, were rookies to March on the Hill, but I felt familiarity on Capitol Hill. I saw Rep. Culberson, and he was truly happy to see our team and to hear about how the proposed legislation may affect people with CF.
I was nervous in my early days of advocating for Jack and others with CF, but some experiences in life aren't so intimidating once we've experienced them a few times. I'm sure there are many people who feel like I used to -- nervous about the idea of advocating to your elected officials. But, I can tell you firsthand that when you tell your story and tell your elected officials what the CF community needs, they will listen. Learn how to get involved here.
It is necessary that we boldly continue our work to influence the policies that benefit Jack and all people living with CF. For those of us who are advocating already, we know that this work is more than a necessity. It is also an enormous privilege.
