I met Lisa Burns (Drew's doc) about 15 minutes beforehand to briefly go over what I wanted to discuss. I had told her that I was nervous. I like to think of myself as well educated and knowledgeable in many areas, however government is not one of those areas. When I had been discussing this with Martin, he told me to just keep in mind that she works for us, that we are her constituents and she represents us in Congress. Good point Martin Moore, good point. So I went in and we met with the Deputy District Director named Sara. I told her a little bit about Drew and our CF journey before going into the nuts and bolts of why I was there. She was a really nice lady who seemed very interested in what we were talking about, asking lots of questions and seeming to genuinely care about our discussion. She mentioned that she hadn't know much about CF until recently when a close friend had a baby who was born with it. It was as if the meeting with the Congresswoman was supposed to fall through so we could meet with this lady. I mean couldn't have worked out more perfectly.
I told her that Cystic Fibrosis isn't federally funded, and that I wasn't there asking for their support to get funding (though should they choose to, I'd be okay with that). What I wanted was support in getting the treatments through the FDA for approval, and the way she could help was to support budget cuts that DO NOT affect the FDA. Additionally, on matters concerning the NIH (National Institute of Health), support funding and oppose all cuts, as budget cuts to the NIH could cause the life saving research that's going on in places like Cincinnati to come to a halt. There is a group in Congress know as the Congressional CF Caucus and I said that if I had 1 action item for the Congresswoman it would be to ask for her to join this group. This group of representatives fights for the things listed above, and to have Congresswoman Schmidt as a part of that group would be huge. A large portion of her Congressional District utilized the services offered by Cincinnati Children's Hospital, one of the leading CF research hospitals in the country. And I'm sure that a fair number of the employees of the hospital live within her district as well. To have her fighting for a cure with us would be huge, and I'll write and educate and inform until we get there.
It really was a great meeting and I'm glad that I was able to set it up and go through with it. I was definitely nervous going in, but after the meeting, I realized that if I'm not fighting for Drew's life, no one will. I need to be his voice and I need to fight for what he needs, for what we need. I very briefly touched on Medicaid, simply noting that my husband has a great job and we have great insurance, but without our secondary insurance for Drew, Medicaid, we would be paying something like $74,000 a year, just for medications!!! Actually, we probably wouldn't be because we don't have an extra $74,000 laying around (I know, surprising) and what would happen is he would have to go without treatments and his health would deteriorate. And my heart would break at the same time. I asked for her support in preserving programs like Ohio's Bureau for Children with Medical Handicaps (Medicaid) for children and adults with CF so that they can receive the treatments they need to live the life they deserve.
I left the meeting and let Sara know that I would still love the opportunity to meet with Congresswoman Schmidt, and hopefully that request will come to fruition at some point. But for now I'm happy with what I accomplished.