Last updated: June 2021
Advocacy, even for CF, used to be as foreign to me as most of the intricacies of the federal government. However, as my family faced a dire need for access to the high-quality, specialized care that only an approved CF Care Center can offer, my husband and I had no choice. We had to reach out and speak to those whose voices were louder than ours. Little did we know where our voices would take us and with whom!
In 2012 our son decided he wanted to chase a life-long dream and attend college. Except the college he chose was not in our 2 hour recommended radius, or even on the east coast to keep him close to home. Given his care regimen at the time, closer was certainly better. However, as my child stated, he had done everything we and his doctor had ever asked of him. Now it was his time, his turn, to make a decision about his life.
Our son decided that he would chase the dream he made as a young boy when he bought his first U of H baseball hat while on vacation: the dream to be a carefree young man and to go away to college. Consequently, one of the hardest things I’ve ever done was to stand by my practiced mantra of cystic fibrosis will not dictate what my child could and could not do. Therefore, I boarded a plane and left my son behind, 6000 miles away at the University of Hawaii.
In preparation for his trek to the islands, my husband and I focused on gaining access to care at Tripler Army Hospital, the only accredited CF care center in Hawaii (or even in the Pacific Rim). As a civilian, routine care was not within reach at Tripler for my son, but we thought exceptions could be made. Surely he couldn’t be the only CF patient in the state of Hawaii who would benefit from treatment at the beautiful pink building on the hillside of Oahu.
Speaking out for CF advocacy
Our initial efforts took us to Washington, D.C. in the form of a letter to the late NJ Senator Frank Lautenberg. The Senator took up our cause and listened to our reasoning. He held meetings with us and his staffers to gain insight before filing a Congressional Inquiry regarding the procedures necessary to gain admission to Tripler.
After four years of subsequent meetings, letters, and conference calls with members of the Cystic Fibrosis Foundation, the hierarchy of the Department of Defense, and the congressional leadership representing Hawaii, we knew we were not in this battle alone. We had a team behind us, and it was this team that finally gained approval for language which provides for civilian care at such a military facility as Tripler to be placed in the 2016 National Defense Authorization Act.
Unfortunately, the approval came well after CF’s stronghold helped our son decide that being home with family and his care team on the east coast is where he belonged.
Telling our CF advocacy story
In hindsight, our years of advocacy work on behalf of our son and cystic fibrosis patients have been heartwarming. We’ve told our story and found it incredibly inspiring to hear those of others. However, it has also provided us with the opportunity to further develop valuable relationships with members in the offices of Congress.
Our democracy does work and informing our elected officials about what is important to their constituents is not only powerful, it is a vital tool for them in governing and for us as parents and caregivers.
Gratitude and thanks
The support and genuine interest in my child’s well-being is not something I take lightly. As such, the commitment from our elected officials to continue governing in his best interest and in the interest of others like him is truly part of the advocacy experience I am most grateful for and won’t soon forget. Advocating on behalf of our child and telling our story of cystic fibrosis was an empowering experience. It allowed us, as caregivers, the opportunity to use our voice and passion to further a health care agenda benefitting the entire CF population.
Presently, the language remains in place in the Defense Authorization Act affording civilian patients living on the islands the opportunity to access specialized care and to benefit from the efforts that began with a young man chasing a childhood dream.
Have you participated in clinical or market research before?