By Curtis Warfield, Kidney Patient and KAC Liaison
I’ve had a very interesting journey since being diagnosed in 2012 with chronic kidney disease (CKD). With the emotional, mental and physical highs and lows of tests, hospitals, medications, dialysis and the blessings of a kidney transplant from a living donor in January 2016, it’s been quite a ride. And this journey has inspired me to “give forward” my time in promoting kidney and donor awareness.
I work for Indiana State Department of Health (ISDH) and through happenstance last summer (2016), I met the State Health Commissioner Dr. Jerome Adams. We shared stories about his many physician and administrative roles, and I told him my kidney story and about my recent transplant surgery – which was six months post at the time. Somehow, with no intent, I left an impression. He featured my kidney story in his March 2017 ISDH Commissioner’s newsletter and he has taken time to speak to me again on several occasions.
Dr. Adams was confirmed on August 3rd, 2017 as the U.S. Surgeon General. Before he left Indiana for his new position, I wanted to meet with Dr. Adams to discuss NKF policy priorities, such as protecting living donors and promoting early detection, and get his insight on meeting with legislators to discuss CKD policy. I was surprised to get a call the day after I requested a meeting. The meeting was brief but it was powerful.
We spoke about my advocate activities with NKF and Indiana Donor Network, and he offered a few tips to maximize my impact when speaking with state and national legislators.
- When telling your story, include another story that has been highlighted in your area. Make the connection about how your stories affect the community.
- National statistics are good but highlight your state stats. Representatives and Senators will be more interested in how CKD directly affects their constituents.
- Highlight personal points of interest from your area that can make an impact. An example could be – the hospital, or transplant center, in that Member’s local district that performs transplants, particularly if it is nationally ranked. And talk about the hours you must drive to get to a hospital or the total number of hours you spend yearly at a dialysis center
- Check to see what committees and groups your legislators sit on and see if there is support from any other legislators for your issue.
- Make personal contact with the legislator’s healthcare staff in their D.C. office and make sure they get copies of any information you give to your legislator.
- Contact the legislative liaisons at your local hospital or health agency. It’s helpful to have other outside agency support for your efforts, especially from those who have contacts in a legislator’s office.
Dr. Adams stated the more resources you go into your meeting with, the more people will listen and keep your information on top of the pile. That keeps it moving in a positive direction.
When our meeting ended, Dr. Adams offered an invitation to visit him when in D.C., which I plan to use. I wish him the best, as I know he’ll do well as Surgeon General. He’s well versed on the medical and human issues facing our nation, and is committed to public health and public health awareness. I look forward to having an advocate for kidney disease patients serving as Surgeon General.