I was recently diagnosed with cystic fibrosis at age 67. Although I love my CF care team, I think it will be important for them to understand age-related care in addition to CF care — especially as the CF population ages.
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I have had a fortunate life with cystic fibrosis given the fact that I married, had two kids, and a career. However, with increasing — and sometimes bewildering — health issues, I’m beginning to wonder whether it’s my CF or just aging, or something in between.
People like me are living longer — median survival for someone with cystic fibrosis is now 56 thanks to research and care. But as I grow older, my health is getting more complicated and I'll need my care to keep up.
A new law that allows patients with rare diseases to participate in clinical trials without losing eligibility for public health care benefits went into effect yesterday. The bill, known as the “Improving Access to Clinical Trials Act” (IACT), was championed by the Cystic Fibrosis Foundation and signed into law in October 2010.
The Cystic Fibrosis Foundation's successful business model was at the center of a congressional briefing in Washington, D.C., today, which focused on strategies for jump-starting drug development for rare diseases.