key: FDA = Food and Drug Administration, NIH = National Institute of Health
A few weeks ago, I met with the Deputy District Director for Congresswoman Schmidt to talk about CF Policy and to ask for her support. At the end of that meeting, the District Director Sara, asked if we would still be interested in meeting with the Congresswoman. Of course, I said yes. And today was that meeting.
From the start, it was easy to see that Congresswoman Schmidt was a compassionate woman. She shared that she had grandchildren, and in fact, a personal connection with Cystic Fibrosis having lost a close friend of her daughters to the disease several years ago. I shared our story with her and she had unwavering attention the entire time. When I explained that there are lifesaving drugs right now going through the FDA for approval but could be held up if cuts are made, she replied with something to the affect of "that's simply not acceptable". She cared and she understood and she agreed to fight with us for this. We had a quick discussion on Medicaid [and everything that's wrong with it] but mostly how its working for us and for many other people that need it right now. I told her how much time we spend talking to drug companies and insurance companies and having doctors write letters and set up meetings all to get us access to a drug that we need. She gave me the name and direct phone number of someone in her office and said that if I ever again run across any problems like this, to contact this woman and she would call on behalf of the Congresswoman's office to get us access to what we need. INCREDIBLE! At one point she looked at me and said, "I really like you."
We talked about Drew and our daily lives and Cystic Fibrosis for almost 45 minutes before she had to go to her next meeting. We took a picture together (her office did, my cell phone camera crapped out on me) and just before leaving I reached out to shake her hand and thank her and she said, "Would it be aright if I hug you?" Of course!! She hugged me and said that she would love for us to come and visit her again, either here or in Washington. And if I bring the kids to Washington to be sure to get in touch with her because she would take them onto the floor with her to vote if Congress were in session. She told me that she has so much respect and admiration for what I'm doing and would love to continue hearing about it and supporting us in any way she can. The meeting simply couldn't have gone any better.
High on that meeting, I headed about 30 minutes north to meet with Congressman and Speaker of the House John Boehner. He is the Congressman for the 8th Congressional District of Ohio. We weren't sure if we were going to get him or just someone from his staff and it turned of that we were just able to meet with his Chief of Staff today. I will admit that the meeting didn't start out as I had hoped it would. Maybe it was because when we sat down I asked if Congressman Boehner was in town today. He basically rolled his eyes at me and said, "He's not here", to which I replied, "I didn't ask if he was here, I asked if he was in town." I thought hey, why not give it a shot. Maybe a spot opened up in his schedule and he happened to be free. No harm, no foul.
The man who we met with seemed someone less than excited to meet with us (probably because of the way I started out), seemingly shooting down the request that we made for him to oppose cuts to the FDA and the NIH or dismissing it as though we didn't really know what we were talking about. However, with a little bit more discussion and personal story added to the mix, he opened up a little bit and asked us some good questions. He expressed that he thought it was an excuse that organizations were making by backhandedly asking for funding when they asked for Congress to oppose cuts to the FDA and the NIH. He doesn't see these cuts, that will undoubtedly be happening, affecting things as severely as we seem to imply they will. We both agreed that something with the FDA and the NIH needs to change, when drugs for things like Erectile Disfunction or for cosmetic procedures such as Botox are on a level playing field as drugs for life threatening illnesses like Cystic Fibrosis or Breast Cancer. They all have to go through the same process, which is a long, tedious and costly process. This is when I introduced the National Center for Advancing Translational Sciences (NCATS) which is a proposed organization within the NIH that would speed the development of much needed treatments for those with serious illnesses, especially diseases like Cystic Fibrosis. I know that Congress doesn't have any money to spend right now, but adding this to their consideration for a more efficient process can't hurt.
At the end of this meeting, I expressed my desire to meet with Congressman Boehner himself and his Chief of Staff told me to email him and he would see what he could set up. In my mind, that's one step ahead of going through the district scheduler to get a meeting. I'm hopeful that we will get our meeting.
Overall, today can only be described as incredible. Everything went so well and I feel like I'm making a difference. I hope that I can continue with this momentum and help to improve the quality of life for Drew and others like him. The end!