Awareness. Hope. Friendship Wow...what a month September has been. CPF Advocates (many of them Daughters) just returned home from several days in DC wrapping up Pulmonary Fibrosis Awareness Month. 37 Congressional Meetings. The most time sensitive thing is asking CMS (Centers for Medicare and Medicaid) for their expeditious approval of two medications we expect the FDA to approve for PF in coming weeks. Other requests include asking the Senate to follow the lead of colleagues in the House by participating in 21st Century Cures, ensuring faster cures for patients. Lastly, asking for PF to be included as an eligible research topic under the Department of Defenses Peer Review Medical Search Program. Day two brought hope and hopefully change at the FDA. The FDA listened to 4.5 hours of testimony from patients and patient representatives. There was not a dry eye in the house. Our mighty group of PF warriors gave powerful testimony and insight. We truly love our CPF family...some patients some caretakers ALL AMAZING.
Posted on: Sun, 28 Sep 2014 15:31:49 +0000
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